Family Blog With A Difference

Alcohol and Liver Disease

2011-08-20T22:51:00.003+01:00

So many documentary programmes these days seem to deal with the subject of alcohol, alcoholics and abuse of alcohol. I know a lot of the families who have been through what we have been through are very angry that some people go through it by 'choice' when, in our case, it was genetic. I don't feel that way although I do understand why some people do.

But I just have to get it down somewhere, get it out of my system, that it's so incredibly frustrating to see. It doesn't make me angry, it makes me sad. I want to go to each and every person who is binge drinking and feel they have it under control, or those who are where they are just because of a boozy lifestyle, and show them what we went through. I want to show them what they are going to put their family through in the future, how those around them may suffer even more than the drinker because it's so unbearably painful to watch someone you love suffer so much. I want to show them photos of Bethany with tubes coming out of her body, explain how she will always have to take medication to keep her alive, how she has to be so careful of infection and has a restricted diet, how it's weakened her body and how the drugs she has to take can further weaken the body causing various complications.

I've never been a person to say, "You've only yourself to blame." Everyone travels their own path and no one knows what it's like. I remind myself that if the worst you've ever had is a cold then a cold feels just awful and that if my friends complain about something I feel is trivial then it's still important to them. I think some people have stronger personalities than others. I could be an alcoholic if I wasn't so pig headed! Everyone has a vice, my present one is crisps! But seriously, it's not the fact that they are drinking or that there could be blame that hurts, it's that I know what they are about to go through and that it can be avoided. Some of us didn't have that chance.

I often wish I had the chance to speak to people on adult liver units and explain what lies ahead if they dont stop. I appreciate that some people don't want to be helped and some desperately do but will never get to the stage of being free of alcohol. I appreciate that I might not make any difference at all. But I think, as with the organ donation awareness too, if I make a difference to one life then it's worth it. My heart aches for those who have either a transplant or a slow and painful death ahead of them due to alcohol. My heart aches for the families who are going to watch them die. My heart aches for all of those affected including the staff on the ward who live it every day. My heart aches for us because we didn't have a choice and that's why I wish I could take that away for someone else before it's too late.

Next time you joke about alcohol, about how funny it is that your liver hurts because you had such a good night or how you need to detox because you've drunk so much this week please remember that someone could be listening or reading who knows all too well the consequences and aches to show you that your joke isn't funny. It hurts. And please remember that you can't always fix a broken body, you don't want to find out too late that this also applies to you.

Having a Blast in Kendal and Lake Winderemere

2011-05-02T12:41:00.012+01:00

We started our trip in Kendal, meeting up with friends and discovering Kendal Castle (ruins). Eloise had great fun running around the ruins, finding the dungeon, being the Queen of the Castle and playing in the playground. Bethany took it easy and found all of the seats, testing them out for size!

We headed to Gummers How in the Lake District and met up with some different friends. It's great having friends all over the country, wherever we go there are people to meet and we always get the best advice about local attractions! Gummers How is a huge hill overlooking Lake Windermere. It's very difficult for a child who gets aches and pains in her legs but we all eventually made it to the top and it was a wonderful vantage point. It felt like we were sitting on top of the world.

On one of the days we went to Brockholes National Park. Eloise was her usual mad self. The girls went on a bungee trampoline. Eloise bounced as high as she could, trying to make shapes with her body and do mid-air tipple overs. Bethany was nervous but stayed on for the whole time and bounced a little higher before her time was up, I was a very proud Mummy watching her fight her nerves. The scenery was beautiful and we spent a full day happily exploring the grounds, playing in the adventure playground and lazing on the balcony eating ice cream. I think we would have gone back there for another day if we'd had more days available. I hope we get chance to go again.

And so endeth another adventure.

Kendal and Lake Windermere, Nature and More.

2011-05-01T19:49:00.016+01:00

I think I ought to rename this blog as a photography one. We spend so much time having fun that I don't have time to update. Old age and poverty... as the saying goes!

Here are some photographs taken on our recent trip to Kendal and Fell Foot, Brockholes and Gummers How in the Lake Winderemere area. As you can see it is a beautiful area and I have more photos to share of the girls having fun. I couldn't resist getting some extra pictures of the beauty surrounding us.

Hoola Hoop Anyone?

2011-04-14T16:04:00.001+01:00

A Very Special Video

2011-03-29T09:47:00.004+01:00

This is a video full of little miracles. Each of these children have been touched by liver disease. They are at various stages of the disease, some just starting along the journey, some in need of a transplant and some, like Bethany, who are proof that transplant is a wonderful thing. Sadly, more than one child on this video has passed away because THAT call didn't come in time. There simply aren't enough donors. So many people are willing to donate but that's not enough. You need to register on the organ donor register and you need to talk about it with family and friends so that they know your wishes.

YOU can make a difference. Have you signed the organ donor register? It's so easy! Have a look at THIS link, it tells you about the different ways you can register. You can even register online and it takes less than 2 minutes. Job done. For the sake of 2 minutes, you could save up to 8 lives. Give yourself a reason to smile today, go register now. :)

Celyn

2011-03-03T17:51:00.013Z

This is Celyn.

I don't often use my blog as a place to make personal or political comments but this is important. I believe it is the same as organ donation - we need people to talk about it. The more people talk about it, the less taboo it is.

The fact is Celyn is disabled. The fact is thousands and thousands of children are disabled.

Please, if you have time, listen to this youtube clip. If you don't have time to listen to all of it then please skip to around 25/26 minutes and listen for a couple of minutes. Listen for the caller called Claire.

She asks this, "What are the benefits for the tax payer in continuing to support the burdens of an unproductive existence of Celyn who will never lead a normal productive life and who is also ruining the childhoods of her healthy and normal brothers and sister?"

Really Claire? Really? You say you think this is the question on everyone's mind. I have never once thought the same thing, I don't know anyone who has ever questioned whether we should "smother" (quote from Claire's blog, "I would hope the midwife would do this to save me the trouble") a disabled child because they may never be a productive member of society able to work and pay taxes. Is anyone reading this now and thinking, "Hmmm, yes, I wonder whether we should smother babies if they may not grow up to be productive?" What is productive? Do I have to have a job to be productive? Can I be productive if I am on benefits? Am I productive if I am severely disabled and need a carer but have a job? Isn't that more productive that a healthy person on benefits who doesn't intend to work? Should we smother adults who don't want to work in case they don't fit the productive mould?

Riven, Celyn's mum, is amazing. How she kept her calm after being presented with that question is beyond me. Here's what she said,

"Well I kind of hope we live in a civilised society where we take care of our vunerable members whether elderly or disabled people. Celyn is actually quite bright so she is one of those disabled people who should she live to 18 there's no reason why she shouldn't get a job."

Claire, "But you said she can't even move!"

Riven, "No, Stephen Hawkins can't move either, he's doing quite well."

Claire, "Well does she goes to school?"

Riven, "Yes she goes to school, she's in a mainstream school."

Claire, "And she can talk?"

Riven, "She talks using a computer just like Stephen Hawkins does."

Cue a long pause where Claire seems to be lost for words having the wind taken out of her sails as she wasn't expecting to find that Celyn is already so 'productive'!

Then, and I quote Claire, "Well it seems unlikely, that erm... erm... you know, she will... I mean... the... the, the trouble with these things is... is, you know, the more you support these things the more it happens and the more people will be asking for money and the more burdened the tax payer will be and... you know, we know the coffers are empty, this country is in debt and... you know... and, and people will always want, you know, money for their stuff as long as it's other people's money."

Claire was asked, "Does this lady think that maybe disabled people should be put down?"

Claire, "It depends on the degree of the disability."

They talk about 'putting babies down at birth' and Claire was asked, "Are you going to put Stephen Hawkins down? He cost the taxpayer a great deal of money with his 24 hour care?"

Claire, "Well... I can't see... what... erm...I don't see that any of his theories help humanity... much..."

Claire is asked, "Claire what do you do to help humanity?"

Claire, "I like to point out these anomilies, ridiculous situations where... where tax payers money is wasted day after day and you have cowardly politicians saying 'Yes, yes, I'll give you anything, just give me your vote, I'll continue to waste tax payers money'."

Claire is asked, "What do you do to justify your existence on this earth?"

Claire, "I... write and I point out these things that are wrong. I have compassion for the over burdened tax payer. That's what I'm about."

Wow, just wow. So your belief is that if we acknowledge these disabled people it will cause more to be created? ("the more you support these things the more it happens") Are disabled people made in a lab and each time we admit one exists they produce another batch?? Her beliefs are so extreme but I understand she has a voice that is being heard. She is a member of the BNP and has a blog where she has written further about this. Funnily enough, her writing (in my opinion) on her blog is vicious in a way that she didn't dare speak on the radio. Funnily enough, she can't be quizzed on her blog so she is free to say what she wants.

Bethany has cost the tax payer thousands and thousands of pounds. Her transplant alone cost thousands. We are not in Riven and Celyn's situation, Bethany doesn't have a profound disability, but she will continue to cost the tax payer money. She is a valuable member of society. She has made firm bonds with friends who wouldn't have come into our lives if it weren't for her health. She has inspired many people to sign the organ donor register. Hopefully one day Bethany's existence will cause other people's lives to be saved. But her existence isn't measured by her liver disease. She is a person in her own right. A brilliant story teller, a wonderful carer, a singer and dancer with a strong sense of humour. She is bright and talented and has the potential to go a long way. Celyn has that potential too but because it isn't packaged in the same way as society expects it's overlooked. That is society's disability, not Celyn's.

On the other side of the coin from the 'over burdened tax payer' there is another story. When Tony and I met we both worked in full time jobs. When Bethany was born we both had full time jobs. We both intended to continue to work and juggle childcare between us, therefore paying oodles of tax and not costing the lovely tax payer very much at all. We didn't chose to have a sick child, we didn't chose to be stuck in a house that is too small because our circumstances dictate that we have a much smaller income than planned. We didn't chose to put ourselves in circumstaces where we couldn't afford to take the children on holiday or buy trendy clothes. We didn't chose to be here. It's been one hell of a rollercoaster ride but it's who we are. I'd really like to know if, in Claire's opinion, it's ok that Bethany wasn't smothered at birth because maybe she'll be able to pay back her debt to the tax payers by working ridiculous hours as an adult? Is it ok if she becomes a productive adult?

And the most important thing is that whilst this woman is ringing up radio shows and diverting the point to whether special children should be allowed to exist and cause a burden, we are losing sight of the original point. What is happening to services for the vunerable? What is happening to the respite centres that are being closed down? How much more will is cost the tax payer if the parents of children with extra needs can no longer cope and feel forced to put their children into care? Where's the budget for the fall out from removing such important services? And where is the soul in a society that can let a family fall apart and cause unfixable damage because it costs too much?

One final thought for Claire... Eloise is Bethany's 'healthy and normal' sister. Eloise has been taken from appointment to appointment for Bethany and had to sit quietly. Eloise has seen Bethany earn lollipops for blood tests and wished she had a poorly liver too because it feels like Bethany gets everything. Eloise has had to tip toe around the house on bad days. Eloise has moved into the parent's accommodation more than once because we to prioritise Bethany at that moment. Eloise has seen Bethany in lots of pain, seen her in PICU, seen her bleed, have procedures and feel very ill. Eloise has held her hand and they have got through it together. Eloise has a deep compassion that it is hard to find in a child so young. She is kind and caring, she has many friends who all want her attention. She loves animals and is a great mum to her dolls. She goes to dancing class and loves to perform on stage. She is a talented story teller and a wonderful hug-giver. She loves pink and all things Hello Kitty! She's a beautiful bouncy child who would be completely lost without her big sister. Bethany is a part of who she is. Bethany is the person she whispers with at night when she can't sleep. Bethany is the person she reads to and snuggles up with when she's had a nightmare. Bethany is the person who would stand in front of the school bully and say, "Hands off my sister!" Bethany is the person who has opened Eloise's world to many extra friends and experiences that have enriched her life. Bethany means she is a sibling and not an only child. Eloise is part of a team and the other part of that team is Bethany.

I had so many things to say when I started this post. I haven't said even half of them. But I think I've said enough. Now please talk to your friends about this (and don't forget to tell them you are an organ donor too!). The more we talk about it the less taboo it is; the more we learn, the less it's scary. The more we realise that everyone has a place in society.

*puts soap box away for another day* :)

Hand Washing and the NHS

2011-01-25T22:36:00.006Z

I am so happy that the NHS have produced a hand washing guide and put it on You Tube. As the parent of an immune compromised child who is easily ill and suffers for longer with potentially serious consequences I think it's wonderful that they are taking this issue seriously.

But I think there is something else they need to look at, something that all parents - and all nurses - are aware of and that is the state of hygiene in hospitals. Almost every time Bethany is dealt with by any member of staff I will look to make sure that they have cleaned their hands. More than once it hasn't happened. More than once when we've brought up the issue it's the doctor who feels it's not necessary while the nurse appreciates the importance and follows the guidelines. Sadly this means that cross infection will continue. I'm not pointing fingers, we've stayed in several hospitals for several different reasons and it seems to be the same everywhere. I will add that the majority do wash hands, I don't want it to appear that I am saying the doctors we deal with don't wash their hands, it is a minority.

We had one experience, unusually with a nurse this time, who dealt with an infectious child then came to see Bethany. I refused to let her touch Bethany as she hadn't followed the correct protocol for an infectious child (gowning and masking up when entering the infectious room, taking them off when leaving the room and hand washing) and the ward sister had to become involved because nurse insisted it was ok to touch Bethany. We've also had to make a complaint because during one particular stay Bethany was put in a bed which had another child's blood on the mattress and the area we stayed in was only given a basic brush around the whole time we were there. Two weeks after we were admitted there was still a cob of someone else's hair, presumably the previous occupant, next to the sofa bed. Slightly of topic with regards to hand washing but it all contributes to hygiene.

Sadly, a hand washing video on You Tube will not make enough of a difference to those who are in most need if the place where they are most at risk is the place that is supposed to be saving them.

If you would like to watch the video (which is very informative so feel free to pass the link on) then please go to The_NHS_Website or The_You_Tube_Link.

Awards Ceremony. London

2010-12-09T13:12:00.020Z

In November Eloise was invited to London to receive an award from Stagecoach (Theatre Arts) for being such a 'Good Buddy' to Bethany and being so patient and understanding during the times when Bethany's health had to come first. She really is a little superstar and we are infinitely proud of her. She is already growing into a little lady, so kind and caring with endless stories to tell and a huge sense of humour.

We decided to make it as special as possible so we stayed in London for a couple of days and planned some extra experiences as well as managing to meet up with some great friends that we rarely get to see.

The girls were very excited when they realised the London Eye was visible from our hotel room.

We met up with a special friend and all went to the science museum.

And we finished the day off eating a sumptuous feast cooked by our friend Lita and having a mini 'liver get together'.

The next day the girls went on the London Eye with Tony (ahem, I held the handbags and volunteered to view from the ground!).

We had a bit of a wet wander around Westminster and the girls both bought umbrellas. Eloise bought the Union Jack one that you can see in the photo and Bethany bought one that said "I *heart* London" which they both thought was very exciting!

After a quick turn around we set off to the awards ceremony. We had to queue outside the building for a few minutes so we took the time to enjoy the scenery.

It was fascinating to be in the function room and look across to the London Eye where we'd been stood earlier that morning.

All the children at the ceremony were inspirational. Eloise was presented with her Highly Commended award for being a Good Buddy by Sir Bernard Ingham. She was quite nervous but also very excited.

With Lord Cope, having a chat about her award.

With Lord Cope and John Burley.

With Adele Silva.

The view across the river from our function room.

Eloise with Lisa, the other child nominated in the Good Buddy section of the awards. Lisa was the over all winner and very deserving. :)

Bethany had fun trying to drink the ice out of her glass!

With Mike McNulty, CEO of Interact - The Stagecoach Charitable Trust.

These next couple of photos were taken on the way back to the hotel. It was a cold walk through the streets of London but well worth it to see it lit up at night.

On the last morning we managed to fit in another trip to the science museum before heading home as the girls had enjoyed it so much previously and ran out of time before it closed. Eloise and I went out for breakfast, here she is being as sensible as ever!

The beautiful view on the way home. :) Ahhhhhhhhh.... And so endeth another adventure.

October Photos As Promised

2010-11-22T15:49:00.017Z

Ready for a dancing competition...
Eek, there's a mouse eating my grapes!

Hitching a ride (photographed in a car park in my local town).

Eloise in her ballet solo tutu.

Proudly showing off the medal she won.

There once was an ugly duckling... Ice cream at the mining museum.

The girls wearing their news outfits for winter. Of course, after 5 minutes the hat, scarf and gloves were grey!

Ready for the school Hallowe'en disco.

Eloise inspecting the cake we won in the raffle.

The fair came to town. :)

Bethany giving Mummy a love.

Blackpool. :)

Eloise took this photo, didn't she do well?

Love, love, love this photo. Pops and Bethany sharing a silly moment.

The girls and Pops, deep in discussion.

The Griffin bunch came to visit. :)

Couldn't let the fair leave town without sampling the fun one more time.

Eloise, my mad child, jumping into a ball pool.

Eloise's first ever time down the mine (visitors are not allowed to go underground until they are 5 years old, she waited a long time to get her wish!).

With Pops and John, her favourite miner.

Testing the lamp.

After surfacing, covered in coal dust. :)

Eloise's pumpkin.

Eloise's pumpkin might be scary - and clearly ill - but it still had to have a 'Hello Kitty' bow in it's hair! So that's it for October. It's not like I'm a month behind or anything - watch out for a November update soon.

October

2010-10-30T21:14:00.008+01:00

Yet again I've left it way too long before posting. So often I think, "This day would make a lovely blog," but then time tricks me and I put it off. I am blogging today without adding photographs because that's just another thing that causes delay. I've had a lovely walk down memory lane this evening, looking through my October photographs. A photo update will follow shortly, when I can decide which ones to add!

Well, the month didn't get off to a great start. Bethany has not been well. I'm pretty sure I blogged about it but I know I wrote about it on Bethany's Caringbridge site, that she had pneumonia in August. Gosh it's really bitten her quite severely. An x-ray revealed that she no longer has it but she has been more tired (more awake at night, argh!), had more pain and felt more ill - not to mention the annoying cough. As we are sure she is no longer infectious - even for Bethany it would be pretty amazing to still be infectious - we are carrying on as normal which means cramming as much fun in as possible whilst taking time to rest and go slow when Bethany needs it.

Eloise has competed in a dancing competition. She continues to improve and become more confident, her ability is blossoming and she loves the whole 'make-up and hairspray' glamour. I think if a dancing competition included sparkly nail polish she would be in heaven! She gained a 3rd place with her ballet solo (I think she'll grow into the tutu when she's, maybe, 15 years old!) and also a 2nd place with a troupe. The school performed a new troupe this competition and it was fantastic, I can't wait to see it again. Eloise plays the role of a cheeky little mouse in a restaurant, it's like the part was invented for her. As if that wasn't fabby enough, they are starting another new troupe and the girls all love it. Eloise has never practised so much and has even taught Bethany the routine.

What else, what else? As ever, we have spent a lot of time at the mining museum. The girls love it there, they know their way around like it's a second home and the staff all know them by name. I think they own just about everything in the gift shop and they have adopted one of the miners as an extra uncle. Uncle John, as he is known, bought the girls a pumpkin each (which, as yet, we haven't found the time to carve, ahem, not that we leave things until the last minute in this house...) and we went to visit him and say thanks. We always seem to track him down as he is finishing a tour underground in the mine, he comes up covered in coal dust and gives the girls a big hug. It's a good job we love him. :)

There are lots of little things that have been fun but you really don't want me to blog about each one. Mundane things that somehow become fun when you are trying to keep order with 2 girlies who are bonkers - like buying new winter coats, going to parties and the cinema with friends, Bethany learning the recorder and clarinet (and us trying to find a moment at some point, any point, for her to practise), the school party where we won a spider chocolate cake in the raffle and the girls delighted in pulling the legs off the spider, the dilemma of choosing Hallowe'en costumes when you are 5 and 7 years old with a huge choice, the fair in town with so many rides that Mummy wont let you ride every single one so you are forced to choose favourites, dragging Pops up the helter skelter because you are so desperate to have a go but a little afraid of setting off from the top, camping out with Daddy in the garden or snuggling up with Mummy in bed (who was not mad enough to be the one camping in the garden)... to name but a few.

Then there's the half term holiday. Bethany has been a bit up and down, very tired, plenty of pain although, thankfully, mostly mild. We went to Blackpool on Monday. It was a bad day for Bethany, she was very tired and almost didn't come with us. Imagine feeling so tired that you say no to a day out at your favourite seaside. It's not good. :( I am so glad that she decided to go at the last minute. I've just had a look through my photos with a big grin across my face. The girls used my camera when they went on the big wheel on the central pier. It always makes me laugh to see what the girls focus on, what images they want to keep and consider special. I have a lot of shots of roofs with seagulls on them, a few wonky ones of landmarks with the iron bars of the wheel frame blocking part of the photo and then some more of the seagulls on nearby roofs!

We've been to the cinema with friends which the girls loved. They've been to an amazing Hallowe'en party at a friends house. Wow, it was fantastic and the whole thing was done outside. Thank goodness for creative parents, that's all I can say. :) We've had friends visit us - fabby friends that we haven't seen for too long - I blame them for moving around the country (and other countries!). I hope we get to see them again soon. The kids thrashed the adults at Mario Karts, much to the amusement of the kids - all 5 of them.

Well I can't leave without mentioning Butlins. Most of it was in September but I never got round to blogging about it. I knew the girls would absolutely love it. They've never been before and I didn't tell them about it beforehand until it got very close because I wasn't sure that Bethany's health would allow us to go. We went to every show that we could fit in, the girls were photographed with every character we met (of course!), we participated in shows - Eloise was asked what she had enjoyed the most so far and, in typical Eloise style, she said, "Sleeping in the bed!" I'd like to assure you that she does have a bed at home. What she actually meant was "Snuggling up with Mummy," because I had the double bed. But thanks child for making us sound like a feral family! Bethany was chosen to participate in a magic show with me. She was in hysterics and teasing the presenter who probably went to bed crying and once again said, "All those years in magic school for this!" The highlight of the holiday was swimming. It sounds like an odd thing to be the highlight but we haven't been swimming since Bethany had her transplant. There are so many opportunities to get infections in a swimming baths and Bethany's health limps from one infection to another so up until now I've always said no. But I knew they would both love the swimming pool at Butlins so I said yes - of course taking precautions. They've both raved about it ever since and keep asking when they can go swimming again. It's a difficult one - some liver teams tell their patients that they can't swim in a public pool, some say it's not a problem. Some don't allow the ocean, some do. I certainly wouldn't, not when I know what is floating in it in the UK!! It's all so personal, what's good for one 'liver child' is not good for the next. If Bethany's immune system was stronger I would be much more confident about it. Some liver kids have trouble with their new livers but don't pick up infections easily. Bethany is the opposite. Her liver is stable and well but she is so susceptible to infection. Sometimes it's best to say 'no' rather than find out the hard way that it's a big risk. And there's the issue of whether we are allowing her to experience life and teaching her to be responsible about future decisions that she will make for herself. Gosh there's so much to consider that wouldn't even occur to the average person. I think maybe it's time to test the waters ('scuse the pun) and venture into our next adventure. Who knows, maybe the next update will be about a successful outing to the swimming baths?

In the mean time, watch out for a photo update which will tell you much more than this (lengthy) update possibly can.

Silly Girls!

2010-09-27T08:30:00.001+01:00

An Unexpected But Lovely Day

2010-09-26T09:45:00.004+01:00

Yesterday we planned to go to the cinema in the morning and I intended to be busy with household jobs in the afternoon. It didn't quite work out like that!

When we arrived at the cinema we found that the film we wanted to see was full. Amazingly, all of the other films were either full or we'd already seen them. So we took a vote and decided on the park. It was a bitterly cold day - well, I thought so but the girls were too busy to notice. :)

After some playtime in the park we went to say hello to the ducks and geese. Lots of people go to the park to feed the ducks so they are not shy. When you walk along the waters edge they all head towards you and if you stand still for long enough they surround you! The girls love this - I am always careful to make sure they are not getting too close - as they get to see them close up and study them. These cheeky little things below were out favourites. The first one never got out of the water, it followed along with us and every time we stopped to look at it, it tilted it's head as if to say, "Is this when you get the bread out?" We've nicknamed the second one Punk Rocker!

After defrosting in the car, eating our picnic with the heaters on full blast, we had a little more play time then headed home for an afternoon of fun, playing with nail polish and make -up and generally being girly. Mind you, no household jobs were done apart from some washing. So guess what I'll be doing today...?

I Don't Know If I've Ever Mentioned This...

2010-09-07T09:39:00.002+01:00

...but I am immensely proud of the girls and want to share this with you.

It Only Takes A Song...

2010-09-05T12:01:00.004+01:00

This morning I am allowing myself to wallow a little. Maybe 'wallow' isn't the correct word? I am certainly feeling sentimental and thoughtful.

Picture the scene: I am folding washing, the girls are at church with Tony and this is my time (oh the joys of motherhood that my time is filled with folding washing). I am thinking of special friends today, taking part in a 5k run for teamjess, and filled with sadness that Jess is no longer with us. I am thinking of 'liver families' who are going through so much, struggling and dealing with 'touch and go' situations that put anything we cope with into insignificance. I am thinking of how far we have come, how much Bethany has been through and how much we have been through as a family, a team; how those 'touch and go' moments once belonged to us and how we do not know what the future holds.

The perfect backing track for this moment - well, for me - is Hallelujah. So imagine me sentimentally singing, folding and contemplating.

The song ends and I wait for the next song to set my scene just as perfectly as the last. But what happens is Hana's Helpline Theme Tune (cbeebies, for those of you who are presently saying 'Huh?') blares out. For a split second I am jolted and annoyed because this doesn't fit my mood and the peace but then it hits me... how lucky am I to have this song playing? How lucky am I to have this life, these children, this family, this situation that led me to exactly this moment when I would be jolted back to the task in hand by an annoying children's song.

And so my theme for today is Hana'a Helpline as I continue to go about my day, thinking of special friends, hopefully about to make a special memory of my own with my precious girlie-whirls.

*Sentimental moment over, normal service will resume shortly!*

British Transplant Games. Bath 2010

2010-08-31T22:20:00.034+01:00

Wow. Just wow.... How can 5 days mean so much? This year Bethany competed in the British Transplant Games in Bath. Last year we went for the very first time, shortly after her transplant, as supporters.

By now you know me well. You know I can wax lyrical when it comes to special and poignant moments. But, as ever, I have what seems to be several thousand photos so I am hoping that they speak volumes for me.

Let me start by telling you that just a week before we went to the British Transplant Games Bethany was in hospital being treated for pneumonia. She had to have 7 days of IV antibiotics and was more ill than she's been for quite a while. Her sats dropped during the night on more than one occasion when they had to wake her and sit her up to help bring them up. Although it barely altered her blood test results in relation to her liver it was a worrying time as this sort of illness can so easily go downhill very quickly in a transplant patient. More worryingly, the pneumonia didn't show up in standard tests, her chest sounded clear. Both our wonderful GP and more than one doctor at the hospital decided that the symptoms were probably the after effect of a recent cough as it takes so long for Bethany to recover from infections due to being immune suppressed. Often, long after the infection is gone, Bethany is still suffering the effects. And, to be honest, we agreed it was probably nothing but we have to be so careful with her health because, as I've already said, she can nosedive quickly and without warning. Thank goodness the doctor requested a chest xray, just to be cautious. It showed a menacing shadow on her lung ("How can a shadow be menacing?" I hear you cry? Well it can when it's a part of my Bethany!). There was an immediate buzz and at 3am they started IV antibiotics. And thanks to their quick actions, the drugs dealt with the infection and she was allowed out of hospital 3 days later. Sadly, in that time (and the following few days recovering at home) she missed out on planned outings to special places with special friends. She seems to have spent so much of this holiday being ill.

Now I know I promised I wouldn't go on but I want to bear the preceeding week in mind when you read on.

Both Bethany and Eloise were very excited in the run up to the games. Both asked, on a regular basis, how many sleeps until they would get to stay in the hotel and take part in the games. Eloise so often gets left out because Bethany's health has to be considered. We particularly built her up for the siblings race, making sure she understood the week was for ALL of us, not just Bethany, and that siblings are as valued as the transplantees. So with that in mind, we also answered the question, "Is it time for my race yet?" many, many times!

The first day was mostly spent travelling. We got to the meeting place for our team at 7.30am. Imagine what time we got up! We got to the hotel afer 3pm. As you can see, we had the usual, quiet and very civilised journey - oh hang on, Eloise was... erm... Eloise!

After a brief time in the hotel to unpack and refuel we headed to the opening ceremony. The weather literally rained on our parade! Bethany found it difficult to deal with the crowds and the rain only made things worse so it made for an emotional start to the games, in more ways than one. It's always (she says, as if it's not only the second time ever!) a wonderful and emotional experience to join in the opening ceremony and try to take in the miracle of life all around. Everyone at the ceremony has been touched by organ donation, whether recipients, donors, donor families, recipient families or staff and volunteers. I wish I could put it into words for you. Imagine looking around a HUGE crowd of people and knowing that just a few years ago this couldn't possibly exist and that many of the people in the crowd would not be here, would have families and friends mourning the loss of them. I think, looking back at both transplant games that we have attended, the opening ceremony is by far the most amazing and miraculous part of the whole event. The sheer feeling of team spirit and the bond between every single member of the crowd is amazing. And it wouldn't be possible without organ donors, without ordinary people who care enough to say yes.

The opening ceremony begins with each team walking in a procession around the streets of the host city and ends up with a ceremony, this time in Bath Abbey. During the ceremony I found myself in tears several times and hugged both the girls over and over, grateful that we had that moment to share.

Bethany struggled to cope with the opening ceremony but thankfully felt a bit better, as you can see by this photo, as we headed back to the team coach, proud to be in charge of our team banner!

The next day Bethany competed in the obstacle course. It was the first race that she competed in and it was very difficult for her. She struggled to keep up with the other kids and she also struggled with the crowds, having to leave the sports hall frequently to calm down. It didn't make it any easier when they called her for the finals but then said they'd made a mistake when she reported. My heart ached for her as it all got too much and she left for some alone time again.

Eloise, on the other hand, was her usual, social butterfly, self! She enjoyed watching the races, making friends with our team mates around us and... oh yes - asking if it was her turn yet every 3 minutes!

I was so proud of Bethany for coming back in and competing in the family event, especially after how difficult the morning had been for her. She had great fun joining in with the various exercises which made up the family event, and also enjoyed laughing at me having a go! Eloise loved getting to join in and being included and also took turns to ~~marvel~~ laugh at me competing.

After the events ended and competitors filed out of the hall we found ourselves with some time on our hands. A few of our team were also hanging around and the kids played together, setting up pretend races. Bethany finally relaxed more once the competition had been removed and this was just for fun, although she still found it difficult to be with other children. It was great to find ourselves with team members without the pressure of time. So much of the games is taken up listening to make sure we don't miss a race and trying to cram snacks in before we move to the next place. The moments of spare time where we get to catch up are little havens of sanity!

Back at the hotel the girls and their friends played in the recreation area and Eloise was transformed into a butterfly by a member of staff. We found out the hard way - after 2 baths and several scrubs - that the paint was rather fond of her face and didn't want to leave! She spent the next 2 days with one yellow eyebrow and one pink one!

The next day we had a lovely time exploring the centre of Bath and it's parks, along with another transplant family. We were fortunate enough to have a whole day without transplant games events. As much as we love being part of the competitions and cheering on our team members (and everyone, really, as we have so many friends in other teams too), the friendships we build are even more important than the games. It's a unique chance, once a year, to be with people who understand what you are going through without having to speak a word. So to enjoy a day out with members of our transplant family, without pressure, is a pleasure and a joy.

We watched some people canoeing in the river alongside the park then realised they were competing in the transplant games so stayed there long enough to ~~scream at~~ cheer them on and wave.

We saw some interesting trees, met some interesting people and chuckled at a deck chair with a tear that looked like a smiley face. :)

The kids had a wonderful time playing, eating ice cream and exploring. Unfortunately it all became too much for Bethany and we had to stop in a little cafe while the other family went on ahead to explore Bath more. Bethany often gets pain in her legs and abdomen. I think the combination of playing with friends and the fact that she was still recovering from pneumonia really knocked the stuffing out of her. So we had a break and some cake! The cafe overlooked the river and we had fun debating which balloon would win the race - 2 balloons had been dropped in the river and were being swirled around in the current.

Our team won several medals that day, including golds. Successful day all round, I'd say.

The next day was the final day of the games. It involved track and field events during the day then a gala dinner in the evening. Bethany was competing in the 50m dash, long jump and ball throw. It was a hot day, a little too hot, but much more welcome than the predicted rain as the entire event was outdoors!

The 50m dash came first. Bethany excitedly and nervously lined up at the starting line while I stood at the finishing post, eager to cheer her on. She didn't come first, I'm not even sure where she came, I was just so happy that she enjoyed it. Her placing didn't matter, it mattered that she coped and understood that this should be fun, not a torment. We went to see friends (Holly in lower picture) between the 50m dash and the next event. The girls love Holly - Eloise frequently tells me how wonderful Holly is and how impressed she is that Holly wears pink! So they were over the moon to see her again and we got to meet up with new friends too.

We headed back to our team for lunch and to prepare for the long jump. Imagine our surprised to be told that Bethany made it to the finals of the 50m dash! Bethany was dubious and asked that they double check that she was definitely in the finals - the pain of being called for the finals previously then being told it was an error fresh in her mind. So they double checked. And it was correct. Wow.

Bethany ate a quick snack and lined up ready for the finals of the 50m dash. The excitement built up and I raced to the finish line (around the outside, I'd like to point out, not down the track!). The race before Bethany's got underway and I could see her lined up behind them, ready to go. My heart was thumping in my chest and I was shaking with nerves for her. I'm not sure who was the most nervous! When it came time for her to race I managed to get a shaky video clip - shaky because it's hard to focus on a tiny person in the distance when you are wobbly with nerves. Bethany was up against all of the winners from the heats so it was doubtful that she was going to win but she was so proud of herself for getting into the finals - and so was I. I have no idea where she was placed, I know she didn't get first. I know that I don't care. All that matters is that this child, this child who was too lethargic to run, jump, skip, sometimes even walk before her transplant, this child just competed in the transplant games AND made it into the finals.

Next came the long jump. Bethany enjoyed competing although was annoyed with herself for not jumping over 1 metre. How hard is this child on herself?! She is a superstar, she pushes herself so hard. I wish she could see just what a miracle she is rather than always wanting that next milestone.

We had a bit of spare time before moving onto the next event. The kids used the time wisely by wearing themselves out racing!

This is Holly and Andrea, standing with the Live Life Then Give Life banner. LLTGL is a wonderful charity dedicated to raising awareness of organ donation and transplantation.

Holly and Bethany with the LLTGL banner.

Bethany and a friend chatted about Bethany's recent inpatient stay as they waited for the ball throw event to start. Bethany proudly wore her hospital bracelet despite no longer being inpatient. She sees it as a badge of honour. :)

We raced for the early coach back to the hotel after Bethany competed in the ball throw. We were all tired, sweaty and soooo ready for a rest before the gala dinner in the evening. After a bath, spruce up and a snack we were ready to go. We travelled on the team coach which got the event off to a good start. The rain seemed to be against us. Can I just say, rain + naturally frizzy hair = Mummy who is not impressed with the undoing of over an hours preparation. It's a good job I'm not proud!

Remember the emotions I described during the opening ceremony? Well the gala dinner is just as emotional. The celebration of each and every person, whether they are called up for a trophy or simply with their team, is amazing. There is a strong competition in the room between the different transplant teams from different hospitals from all over the UK yet they all cheer for each other. The organisers present a slideshow of photographs taken at various events during the whole of the transplant games on a big screen and everyone breaks off from eating to cheer and whoop as the photos change over. The whole night is a magical experience and the perfect ending to such a special few days. By the time the coach came to take us back to the hotel we were exhausted but sad to leave so early - but not before we got chance to meet Pudsey Bear.

On the way back to the hotel the rain was torrential and we passed 2 accidents on the journey. There were emergency services at the scenes and I remember thinking, "I hope with all of my heart and all of my soul that no one was critically injured.... but if they were, I hope they were organ donors." The next day we set off home on the team coach, exhausted but happy. The return journey was much quieter than the outward one, with many people sleeping. There was a quiet calm (apart from the occasional song and joke) and time to reflect on the last few days.

We've met up with good friends and made new ones, we've grown closer with some of the staff and shared special moments with people who mean so much to us. And none of this would be possible without the selfless act of organ donation. None of these miracles would be alive today. None of these celebrations would exist, none of these friendships, bonds and special moments. To all those who have already donated and to all those who one day will... THANK YOU.

And The Quotes For Today Are....

2010-08-14T17:22:00.005+01:00

(In cinema, watching end credits for Nanny McPhee and the Big Bang.)

Me: The credits last a looong time, they must be listing each of the fairies that helped with the magic parts of the film.

Bethany: I bet they did it with a computer.

Me (sad that Bethany is growing up and no longer immediately believes the fairies did it!): Awwww, you are growing out of your boots!

Bethany: But I'm not wearing any!!

Gotta love literal kids, eh?

.................................................................................................................................

(Playing 'who am I?')

Eloise: Is it a man?

Bethany: Yes.

Eloise: Is he real?

Bethany: Yes.

Eloise: Is he famous?

Bethany: Yes.

Eloise: Is it Michael Crawford?

Bethany: Yes!

Eloise: I knew it would be when you said he was famous.

Bethany: What about everyone else???

........................................................................................................................

Eloise: Mummy, do you just change the letters round to make biscotti into biscetti?

Me: I don't think there is such a word as biscetti.

Eloise (exasperated): Noooo, biscetti, that other word that's like biscotti!

Me: I... erm... (thinks)... do you mean biscuit?

Eloise (completely exasperated!): NOOOOOOO! You know, BIS...GET...TI, the string stuff!!

Me: Spaghetti?

Eloise: YES!!!

It's such a shame she'll grow out of this... although it would be a shame if she didn't! ;)

These Are The Days (pt 2)

2010-07-11T22:10:00.005+01:00

9.30pm...

Listening to the girls giggling when they should be asleep. Choosing to listen to them giggle rather than instructing them to go to sleep. Finally going into the room to find one child with not-an-inch of bed space left due to toys (and an empty soft toys box), curled up in a tiny corner of the bed and another child with their bottom in the air looking for a glow stick which she just dropped under the table.

Guess who will be tired tomorrow?

These Are The Days...

2010-07-11T13:20:00.005+01:00

Memories :)

Bethany leaning over my shoulder to see what I am reading, me smelling the strawberry yoghurt on her breath and smiling.

Eloise calling Bethany 'Beth' even though no one else in the family calls her that. A pet name for her fantastic big sister.

Eloise complaining about bread crusts (and mostly being expected to eat them)!

Bethany attracting dirt like a magnet, how does she get so dirty in a matter of seconds, sometimes when she hasn't even obviously moved?!

Bethany reading and reading and reading, what an inquisitive mind.

Bethany wanting cheese sandwiches, Eloise wanting ham sandwiches.

Their love of play doh (clearly I have failed at my attempt to drill into them that it is soooo messy it can't possibly be fun!).

Reward stickers being 'saved' all over the house.

Bethany's collection of plasters that, despite explaining is pretty yukky to keep, she saves because they are war wound proof and a proud badge of honour.

Their incredible desire to wrap lucky dip toys for our parties and events. I don't know where they get this love from, neither Tony nor I enjoy this task, thank goodness for willing children!

Their little quotes that make me howl with laughter. I wish I could write them all down, sadly most are now lost with time but occasionally a little nugget comes to mind and makes me smile.

Whitening ballet shoes. :)

Bedtime cuddles and declarations of "I love you all the way to the moon and back, up to Jesus and all the way around him, 100 gazillion trillion times and back".

Hundreds and hundreds (and hundreds) of drawings on printer paper dedicated to Mummy. That's why we never have any paper when we need to print something.

Toys that, if lost, would cause the world to fall apart.

First teeth. First hair cuts. First shoes. First dancing competitions. First overnight stays. Growing up!

Sisters squealing with delight at secret jokes that, when revealed, often involve rude noises!

Listening to children singing songs out of sight, oblivious to their audience.

"Shhhh, Mum's coming," and the sound of 2 little girles racing into their beds and laying down with their eyes closed. Honest, they are asleep!

Picnics at dancing class between lessons.

"The house is on fire!"...... "In a minute..."

An endless fascination with balloons.

*happy sigh* these are the days. :)

The Sick Children's Trust and the lovely Michael Crawford

2010-07-03T13:03:00.039+01:00

On Thursday we went to a party, a very special party, at Eckersley House. It is one of the 'homes from home' run by the Sick Children's Trust. Recently the children's services in Leeds have been centralised in the LGI buildings. Previously a fair chunk of the services, including our paediatric liver unit, were based at the St James group of buildings, further out of the centre of Leeds. Eckersley House has been relocated from St James to the LGI in order to continue serving the families of sick children.

The building had that fresh plaster and paint smell to it and the prospect of a small party to make the official opening was exciting. We knew Michael Crawford would be attending, which made it all the more exciting.

We arrived early as we had been asked to be part of an interview for the local BBC news programme. Tony is great at these things, I cringe inwardly but want to do whatever I can to promote such a wonderful charity.

The girls made themselves at home in one of the playrooms which I think, by the time we left, they considered to be theirs!

The girls stopped for a snack break as the BBC crew were delayed. The Eckersley House staff were running round trying to get everything ready but still had time to chat with us and sneak a bit of food to one side for the girls.

The BBC crew arrived around midday and we explored a kitchen/living room/playroom upstairs. The girls, Bethany in particular, were excited about possibly being on TV and made sure they did their best to follow instructions - which isn't too hard when the instruction is 'go play'! :) They interviewed Tony - oh, and I said a few words too - then filmed the girls playing some more.

Oh my goodness, the girls were so excited to meet Michael. Eloise wandered around behind him calling "Michael Crawford... Michael Crawford..." until she got his attention. That's my Eloise! Bethany was in awe and refused to go near him for a while but warmed up to the idea that he was not scary. In the end he had her in fits of laughter. We listened to the RJP Community Choir sing Proud, a song they recorded with the Leeds Rhinos to fundraise for the Sick Children's Trust. You know how sometimes you listen to a song and it gives you goosebumps? Then you'll know how it felt listening to the choir sing. After the speeches and presentations we all went outside to watch Michael cut the ribbon on the front door. He was so lovely, after the official photographers got their photos Michael posed so Bethany and Eloise could get a picture with their cameras.

Bethany was too overwhelmed to sit next to Michael, she kept telling me she was too nervous. After some encouragement she sat next to him but wouldn't look at him or talk. But Michael persevered and two minutes later she was giggling away with him. I'm so glad she got over the nerves or she would have been so annoyed with herself afterwards for not talking to him.

The girls presented him with drawings that they made for him. He was particularly impressed with Bethany's artist impression of him. ;)

Tony gave Michael a copy of his book, the proceeds of which go to the Sick Children's Trust. :)

And at the end of an emotional day, when the girls were tired, Bethany made a new friend, Jennifer. They had a girlie moment when Bethany realised she'd missed the magician. Awwwww, bless. :)

We had a fantastic time. We met Michael Crawford. We helped advocate and raise awareness for the Sick Children's Trust. We met Michael Crawford. We got to have a look around the new Eckersley House. We met Michael Crawford. :) :) :)

As often is the way for Bethany, the next day she came back down to earth with a bump when she was diagnosed with conjunctivitis which meant she had to miss a very special day at school. Sadly, infections seem to get in the way of a lot of things for Bethany, it's all in a days work for a transplant patient and Bethany seems to be particularly susceptible. She missed a talent contest (for which she made up a dance and practised every night), she missed a school picnic in the afternoon and tomorrow she will miss a dance competition. But you should have seen her face when we were in the chemists collecting her eye drops and an elderly lady asked her if she was "The Bethany Salmon from the TV?"

These Are The Days...

2010-06-18T22:21:00.003+01:00

Tomorrow Bethany and Eloise are taking dancing exams. Tonight I am covered in white shoe polish. Some of the girls taking exams have bought new ballet shoes but I love to polish the girls old ones, ready for the special day. Why? Because one day I know I am going to look back on today with a smile and remember when the girls were young and I used to cover my hands in shoe polish* in an effort to make their ballet shoes look like new. Somehow, new shoes feel like cheating.

*I would like to point out that I don't deliberately cover my hands in shoe polish, I don't have a magical way of getting it to the shoes from my hand! But when you have your hand inside a ballet shoe and you have to cover every millimetre in white polish it's very easy to end up wearing it. :)

Should We Pick and Choose Organs?

2010-06-16T16:42:00.010+01:00

I feel very strongly about this subject. This blog has got away from the medical side of things in my quest to remember the wonderful aspects of raising two precious daughters but it was originally set up to document life with a 'liver child' and this is part of our lives. Sometimes I have refrained from commenting on stories in the news, feeling that there are two sides to every story. But this one I am too passionate about to stay silent...

You may have recently heard the story of Lyndsey Scott who passed away after suffering from pneumonia. Pneumonia is a killer, even more so in immune suppressed people like Lyndsey - and Bethany. It's a scary prospect, especially as we have friends who recently sat in PICU with their child for what felt like months while pneumonia almost killed her. In the life of a transplant patient there are many extra risks, it's a balancing act between living a full life but not being exposed to dangerous risks. Everyone copes differently and no one is right or wrong, we choose to live each day to the fullest but always having that thought tucked away at the back of our minds knowing that it could all be taken away.

This is a quote from The Independent, "The Government's "transplant tsar" insisted today that organ transplants were carried out on the basis of whether they would work - after it emerged that a cystic fibrosis sufferer died after receiving the lungs of a long-term smoker."

This is infuriating me. Every single story I have read or watched about Lyndsey has quotes similar to this one. The stories are hugely slanted into swaying public opinion about being given choices during the transplant procedure. But whilst all of the stories have pointed out that Lyndsey died of pneumonia which was not linked to the specific lungs she received, this fact seems to have been forgotten due to the slant on reporting.

How did someone dying of pneumonia, which is a risk in the 'healthy' world and even more so in the transplant community, turn into a discussion about whether patients should be able to pick and choose which organs they will accept?

When Bethany was listed for transplant we were told that they would hold out as long as possible for the perfect liver but if her health deteriorated to such an extent that she was in imminent risk of death (as opposed to being given approx a year to live) they would accept a marginal liver. A marginal organ is one that is fit for transplant but not in perfect condition. Ok, that's not a medical description, that's my description as the mum of a child who has had a transplant and how I understand it. Given the option between death or an organ that is suitable for transplant but labelled 'marginal' I can't imagine anyone saying no. I am anti-smoking and anti-drinking, I don't do either. But I am not naive enough to think that the donor who saved Bethany's life should have the same priorities as me. The bottom line is, if the organ (which goes through rigorous tests) is deemed suitable for transplant then we have to accept that. I can't imagine any team ever saying, "Well, it's not a good organ, it's unlikely to last but let's use it anyway." Seriously, they are trying to save lives. In Bethany's case, an example of a marginal organ might have been a liver that was maybe fatty but working fine as opposed to a leaner one from a very fit person.

As a lot of you will know, we have had disagreements with Bethany's liver team in the past. I think you would struggle to find any parent who has not disagreed with their team at one time or another; they are, after all, dealing with the most precious things in our lives so emotions are bound to be running high. This opinion is not based on whether I like our team or not, whether we put them up on a pedastal or not, it's about common sense and how the system has to work for everyone. Where do we stop if people can choose their organs? Do we let people say no to an organ because the donor did something during their life that we didn't like? What if they are a different religion, race, gender, sexual orientation, a drinker, a smoker, a manual worker, a desk worker, a parent, a loner? What about personality or mental health? Should we be able to say no because the donor suffered from depression?

In my opinion, we should trust the doctors. They are trying to make the best matches possible with the very limited amount of donated organs available. If the lungs that Lyndsey received were marginal (and remember she had been listed for FOUR years and surely must have had a very limited time left) then it was the best choice for her. Why does the fact that she later died of a complication that all transplant patients can pass away from suddenly raise the issue of whether she should have received those lungs? Without them she would have died. Full stop. With them she had a chance of living. Sadly, it didn't work for Lyndsey and my heart goes out to her family. I have spent many hours in the past trying to imagine being a part of a family unit consisting of 3 and not 4 people but it just seemed impossible. I am never complacent about the fact that I only had to imagine it, I am not living it. It's such an emotional subject and I can understand why her family would be so torn at a time like this. But I think it is wrong to link two separate issues - being given lungs from a smoker and dying of pneumonia - and put them together in such a way that the news is slanted to make the reader believe the two are linked. And it breaks my heart that this could have done damage to the image of organ donation when it already has so many prejudices.

Bethany was very lucky, she happened to need an organ which is one of the most available and can come from a living donor. Double lung transplant patients don't have that luxury. I hope with all of my heart that no one has said no to organ donation because of this story. The question we should be asking is why did Lyndsey's team have to make the choice about lungs coming from a smoker that may be marginal? What can we do to get more people to sign up to the organ donor register so that in future the medical team do not have to make the same decision?

Nature

2010-06-15T10:47:00.009+01:00

We've had a blast over the last few days, making up for the previous few weeks. The school holidays were particularly busy with outings planned almost every day. We've visited the seaside, been to parties, got close and personal with nature and visited friends, amongst other things. It's wonderful to have had a full week of school holiday without being in hospital or having a sick child. I could get used to this!

Here are a few of my favourite photos from an outing to Howley. :)

Spiders

2010-06-04T19:32:00.004+01:00

Where, oh where are they all coming from?

Last night I went to bed early because I felt ill. During the evening I walked into the bathroom to find 2 spiders wandering around. when I describe them as big I am not doing them justice. I think they could have carried the cat away.

Being the life loving person that I am I found a container big enough for them, carried them out and waved goodbye. That's when I turned around and saw a spider as big as the cat (there may be a bit of poetic license there but I am not exaggerating too much). I very kindly took him (anything with legs that hairy must be male!) for a walk to meet his leggy friends outside and promtly went back to bed having decided that it was the only safe place.

Urgh. It was nice that you came to visit, now GO AWAY!!!

No 'ism' Can Be Found Here...

2010-06-04T09:32:00.003+01:00

Bethany is a very competitive child and gets upset if she doesn't think she's done everything better than the next person which makes this morning's quote even funnier...

"Daddy I didn't race Eloise this morning we weren't trying to get dressed the fastest, we're not racist anymore."

I love innocence, long may it continue. :)

Favourites

2010-05-30T18:32:00.002+01:00

These are 2 of my favourite photos from yesterday. This is what Bethany and Eloise look like when they are trying to be quiet. :)

Hello Old Friend

2010-05-30T11:44:00.005+01:00

I should start this blog update by telling you I am in the middle of reading My Sister's Keeper. I read it last night when the girls went to bed and this morning. It's fresh in my mind. So you'll understand if this post goes off at a tangent and gets quite mushy. :)

As usual, I have missed so many updates that I wanted to share; I didn't have time to write the update, I didn't have time to edit the photo that I wanted to attach, I didn't have the energy even though the time stretched out before me. I've got photos that I want to attach to this update but I wont because I know it wont get written.

Instead of trying to catch up on the past few weeks I am going to tell you about yesterday. As I look back I think of so many things I want to update but it wouldn't do them a service because I will be skimming over the moments, recalling events as a list instead of really sharing them.

We've had a very up and down time recently, lots of illness, hospital admittances, times of isolation and lost routines. The girls have had a rough time - for a chance it's been both of them, not just Bethany - which means we've had a rough time of it as a family. It makes yesterday feel more special even though we didn't do anything major. It was a normal day with happy memories.

We went to the cinema in the morning - did I ever mention that I love the cinema that plays old films for £1? Well I do! We went to see The Princess and The Frog. It only seems 2 minutes since it was originally on at the cinema but already it qualifies for the cheap film. We went to see it for Eloise's birthday so it was already a good memory.

We arrived early, got good seats and played I-spy. It can be an interesting game when you have one child spying things like "walking" which is virtually impossible to guess and another child who either plays in colours "I-spy something beginning with blue" or clearly picks a letter at random and keeps the guessing going until she decides to say yes to something that definitely was not what she was thinking of. Such fun! On the plus side it never gets dull.

At the end of the film Bethany announced, "Mummy, I've noticed that when I see a film for the first time I always cry tears of sadness but when I see it again I cry tears of happiness." Cue Mummy's heart melting.

It's our little tradition that if we go to the cinema we wait for everyone to leave as the credits roll then the girls go down to the front of the room and dance to the music. It always amazes me that no one else stays right to the end, we've seen funny clips and even 5 minute endings after credits when everyone has left. I've sat in a cinema and bopped away to the Mamma Mia end sequence 3 times, long after the rest of the audience had left. Do these people not realise that there is a hilarious, 5 minute song at the end? But on the plus side, my girlie-whirlies get to have a bop in a private studio for 5 minutes which satisfies the stage freak in them!

Fast forward to the afternoon, we decided to go to the mining museum. It's a fantastic place. The staff are wonderful and always friendly. I guess I am speaking from a place of priviledge as they have taken our family in as their own and supported us through Bethany's transplant journey. The girls played in the playroom for a while, making me eat plastic food (yum, there's nothing better than a ball pool ball inside a cup to look like an ice cream!) and Bethany dressed up in a costume. We visited the staff in the restaurant and one of them commented on how loud the girls were, challenging them to see who could be loudest! Thanks very much mister!! I pointed out that if they kept it up for any length of time I would be depositing them with him until they had gone quiet! He laughed and gave them another challenge - the one who could stay quiet the longest won a twix chocolate bar. They both grinned and immediately zipped their lips. Eloise, my little chatterbox, failed miserably but it was fun playing the game. I told them I was allowed to tickle them and that laughing counted as making a sound, so we spent another 20 minutes being silly with them trying to be quiet but grinning lots and spluttering. All the staff thought it was hilarious and when anyone passed me they asked who was winning. :)

Bethany has a hard time sleeping, a seriously hard time. And the night time is when she feels pain the most. As I read My Sister's Keeper and was reminded of all the medical trials we have been through I listened to Bethany tossing and turning, unable to settle until well after 11pm. I looked back over the day and smiled at the memories and reminded myself that days like these make everything worth it. I tiptoed into their room to check on them at midnight to find Bethany laid right at the edge of the bed, head at the foot end, curled up looking angelic and Eloise laid sideways across her bed laying on a giant caterpillar which is taller than she is, and I smiled and went to bed.

Before I started this post I had all sorts of heartfelt things swirling around my head, just waiting to jump out onto the page. It's amazing how reading something that's a little too close to home brings out memories, good and bad. It's amazing how it reminds you of everything you've got and not to waste a day. And that is my life for today. :)

Spoiling you with photos :)

2010-04-22T22:32:00.010+01:00

I had a rare chance to play with photoshop a couple of days ago. These days I just can't find the time to edit photos and I tend to only edit very special ones sporadically. So it was great fun playing with these (some, you can see, are original, and some have been played with). Here are some of my favourites...

We went to our local ice cream parlour (everyone should have one) and the weather was lovely so we stayed longer than we normally would - we normally look out wistfully at the play area and animals, wishing it would stop raining long enough to enjoy it.

I saw this little birdie one afternoon whilst waiting to collect the girls from school. The grass looks a bit warped because the photo was taken through my car windscreen so I'm guessing the zoom picked up on an imperfection. Thank goodness for 'zoom' or it would have been a speck in the middle of a big field!

The girls used to be afraid of spiders so we made a big deal of making friends with them. We always wave when we see a spider and have a little chat with it. Maybe we took it a bit too far - here's Eloise trying to make friends with a spider in our living room. I'm pleased to say that if the girls see a spider in the house they get a cup and carry it out - much better than the screaming and squishing that used to happen. :)

We went to the National Coal Mining Museum and spent some time wandering around the buildings, joining in the kids activities and meeting Maurice the Miner. We've told the girls that Maurice is real and they keep asking how someone can have such a big head and be real! Have a look and see if you agree with them...

And last but not least, Eloise playing in the garden with Rolind the mad cat (RObert LINDsay - geddit?!) and having a teddy bears picnic.

Tip of the Day...

2010-04-21T20:26:00.003+01:00

Q: What do you do when you desperately want your children to sleep but you have one child who doesn't sleep?

A: You promise they can wear their new school dresses if you hear absolutely NO TALKING from them.

Guess what? It's quiet!! Seriously... it's quiet!!! I wonder how long it will be before Bethany wakes up? Maybe I'll actually get a quiet night all the way through. Maybe, just maybe...

Hilarity and Hospital

2010-04-15T16:58:00.010+01:00

On Saturday we had a strange day. Bethany seemed out of sorts, a worrying thing for a transplant child who is so easily struck down with infection. However, she's had a cough for a few days so we put it down to that. We had planned a fun day for the girls starting with a cinema trip (gotta love the cinemas that show old films for £1). Bethany got quite upset during the time watching the film and when we emerged afterwards she needed some calm down time. We had planned to eat in Pizza Hut but clearly this was no longer an option. So we went hope and had a peaceful lunch.

By the time lunch was over Bethany seemed calmer and more like herself so we ventured out again, this time to a pantomime. We went to see Pocket_Panto perform Dick Whittington. We've seen them perform several shows before, including this one. The shows are such good fun that it doesn't matter if we are watching one we've already seen, it means we have a head start with the booing and cheering. I do think, given that we have watched Dick Whittington 3 or 4 times now, that the cast should take the request to make 'King Rat jump in the sea' seriously! I mean, come, all you need is a paddling pool (and the hope that Darren can swim!).

The girls had a fantabulous time. Bethany was... ahem... very vocal and took the audience participation very seriously. She pointed, screamed, booed, shouted and tipped off the cast when looking for baddies and missing keys. Who needs those 3 pages of extra script anyway?! I took a couple of photos with one of the cast members, Darren aka King Rat and the Dame. I also managed to get a video clip of Eloise when she was called up to join in a dance routine. When I say a 'dance routine'.... well make your own mind up when you watch! LOL :)

Unfortunately the day went downhill after that. Although Bethany had a fantastic time during the show she quickly became ill afterwards and had to go home as she was not well enough to eat out. I stayed out with Eloise, we didn't want her to lose out as so often the household fits around Bethany's appointments and medications, so we got our trip to Pizza Hut. Daddy drew the short straw but I promise I ate pizza on his behalf!

Before we made it home Bethany's temperature had become dangerously high so we met Tony and Bethany at the bus station and headed to our local hospital for blood tests. *note to self, do not have a sick child at the weekend* Apparently the lab only do certain tests at the weekend and they can't be sent to St James (some of ours usually are sent there because Bethany has tests that are less routine and can't be done at every lab) so we had the joy of Bethany having a canula inserted just in case anything came back bad enough for immediate IV antibiotics. We waited... several hours. Bethany had a chest xray (I am so glad they suggested that, one of our liver kids is presently in PICU because she started with a cough which developed and this was on my mind - if you follow Bethany's Caringbridge website you'll have read about Ayanna). Two of the tests that would have helped couldn't be done but the ones we got back suggested she had an infection. We figured it was an infection but we always have to make sure it's not liver related as if it's missed for long enough it can be life threatening.

We made it home at 1am, to monitor Bethany and take her back if it got worse. We didn't know until the next day but she was also delirious. This only came to light after later conversations with her.

You know what though, when I look back on this day I will remember the pantomime. I won't remember the disaster that was the cinema, I won't remember the fact that Bethany had to go home or that I sat next to her all night in a hospital ward, I will remember the joy on the girls faces as they watched a pantomime and the look on Eloise's face when she was told that she never has to go to school again (I'll get you for that, Darren!). And that's the power of the camera... and that's why you'll always find a camera if you find me. Turn your speakers up and see what you think...

Photo and video editing at www.OneTrueMedia.com

So Much Fun!

2010-04-13T16:55:00.038+01:00

Once again, I've left it way too long before updating. There's no chance of me being able to recount all of the wonderful days we've had since I last updated so I thought I would share my photos with you. You can walk with us and use your imagination. Imagine 2 kiddlies who are completely bonkers and manage to make every day unique, imagine weather that does at it pleases but doesn't stop us having fun and imagine the smells. Ok, maybe not the last one! :)

The girls had a hair cut at the beginning of April. You can see the before and after by comparing this pic with the one of them opening presents a little lower down. Bethany's hair has been so cruelly affected by her transplant meds. Pre-transplant her hair was silky and shiny, I have a gorgeous photo of her taken just before her transplant with her flowing past her waist looking so thick and healthy. Since her transplant the hair all the way around the edge of her hairline has snapped off and given her a 'fringe' look which isn't deliberate and has not been cut. So I was very pleased to see that having cut a huge amount of hair off, it now looks much healthier. It's still frizzy and fly away - I don't know if it will ever be silky and shiny again or if the fringe effect will grow out - but it's a definite improvement. It's amazing how the things that seem the most minor have the most effect. Her hair and teeth have been affected by her transplant, I should be worrying about her health and keeping her safe but somehow that becomes part of the routine and I don't even realise that I am worrying. However, it makes me sad to think that she may have a poorer view of herself as she grows up due to things she has no control over. I just hope she understands how absolutely beautiful she is... absolutely beautiful.

Bethany and Eloise both had birthdays in March. They had dancing competitions on the weekends nearest to their birthdays so had to wait until the beginning of April for their party. However, this did work in their favour, we seemed to spend half a month celebrating and there was always another party meal, cinema trip, present, and then the proper party going on.Bethany got some new boots from the orthotics dept of our local hospital. They are to help encourage her to walk rather than tiptoe or skip. They are partly working although she had already worked out how to tiptoe before she got out of the appointment. It does mean she can't tiptoe quite as high, the boots are working to some extent and, if nothing else, look fabby! :) Bethany at her birthday party, about to blow out the candles. Hip hip hooray! During the Easter holidays we went to visit our friends Danielle and Ethan and we all went to a theme park where the kids had fun all day and rarely tried to kill each other! :) We also met up with Nish, David, Kian and Sami at the National Railway Museum in York. They are a 'liver family' and it's wonderful to meet up with friends who understand what we go through. Kian had a transplant 5 years ago and it's great to see him looking so well. It's great encouragement to see other liver kids doing so well, it gives me hope for the future. Bethany, Eloise, Kian and Sami got on so well together and Bethany decided she would look after Sami, something to which Sami didn't appear to object! The last photo is of the girls with Andy, one of the demonstrators at the museum, we promised we would put his photo on the blog so here it is! *wave* The girls got a chance to look around the new liver unit. Children's services are being centralised to improve the service the kids receive. Our liver unit already does an excellent job of caring for the children, but the purpose of the move is to improve services such as having all the machines on one site so that a child does not need transporting between sites for a scan etc. I have attended many meetings as a parent advocate and, to be honest, looking round the ward was a little disappointing as there were things that were promised but have not materialised. However, it was still good to have a look around ahead of time so that we will know where we are going when the big move happens. Hopefully I can continue to advocate and someone, somewhere is listening (is that too much to ask for? the phrase "ever hopeful" springs to mind). As well as there being a positive side to the move there is a negative one too. I just hope that everyone involved - patients, families, staff, carers, volunteers etc - can feel the positive side because right now, some of it is lacking. I am looking forward to the new start but absolutely definitely NOT looking forward to having to travel to the centre of Leeds with barely any parking facilities (I can just about guarantee that we will NOT get a parking space anywhere near where we need to be, and for the joy of the long walk we will have to pay to park - something we don't currently do at the site which is not in the centre of Leeds). I am still hopeful and positive but some would call me nuts!After we'd had a look around the new ward at LGI we travelled to St James, where Bethany currently receives specialist treatment for liver disease and follow on care after her transplant. We visited Eckersley House, (The Sick Children's Trust), who have been very supportive to us over the years. They provide accommodation for parents and families of children who are receiving long term care at the hospital. They have been invaluable in helping keep our family unit together, in keeping Tony a short walk away from the liver unit, in keeping Eloise with us while Bethany received treatment so that she didn't feel left out, in being an ear and shoulder to listen to us when we struggled and in giving us the opportunity to meet other families in similar circumstances. It's amazing how much we need the support from other families who understand what we are going through. And it's amazing how good it is to make lifelong friends during times of adversity, friends who can always lean on us and we know are there for us too. Without Eckersley House we would have none of this. At that awful time when Bethany had her transplant we would have been separated, Tony at home with Eloise and me on the ward with Bethany. During the times when Bethany's health was severely deteriorating and when we wondered if she would make it (and there were several), when we needed to feel close, when Eloise needed to understand what was going on and to feel a part of the family unit, Eckersley House have provided for us. Our story would be very different without them.

We raise funds throughout the year for Eckersley House. They are a charity and depend entirely on donations. They receive no government funding despite the fact that they are providing for patients as well as families and are taking the strain off the ward finding a family room within the hospital or the family funding a room off site. I haven't been to any of the other Sick Children's Trust 'homes from home', but if the staff are all as good as the ones at Eckersley House then they have a sterling bunch of people working for them.

This year we already have events planned to contribute towards the final amount raised. So far, each year, we have managed to beat the previous years total so the pressure is on! Tony has organised a bus tour, we will hold our usual Christmas Extravaganza and several other events are in the pipeline. If you would like to donate to our total you can do so here.
I have another update to follow - a shorter one, I promise!! We had so much fun last Saturday. Unfortunately Bethany ended up in hospital that evening but the day more than made up for the evening. I can't wait to share my little video clip with you of one special event. :)

For those who have asked...

2010-03-23T09:44:00.001Z

The girls in their new school uniform...

Liver Families Is 4 Years Old

2010-02-25T21:48:00.006Z

I love being a member of the admin team on Liver Families. It is a support group for families/friends who are affected by paediatric liver disease.

To celebrate how wonderful our family is and what a positive effect it has on our well being we have produced THIS montage. If you have ever thought about signing the organ donor register this montage will make you want to do it right NOW! You can sign the register HERE.

If you live in the UK these are the ways you can register to donate your organs...

You can join the NHS Organ Donor Register by:

Filling in a form online

Calling the NHS Donor Line on 0300 123 23 23(Lines are open 24 hours a day all year round. Calls are charged at your contracted rate for local calls)

By texting SAVE to 84118

You can also join when you are:

Registering for a driving licence
Applying for a Boots Advantage card
Registering at a GP surgery
Registering for a European Health Insurance card (EHIC)

Leaflets are also displayed in GP surgeries, libraries and many hospitals and pharmacies.

Funnies...

2010-02-23T12:00:00.004Z

Bethany: Hi ho, hi ho, it's off to work we go...
Eloise: Hi ho, hi ho, just phoned to let you know...

Eloise takes after Pops - he likes to make up the words to songs too!

--------------------------------------------------------------------

Bethany: All the songs in the whole wide world make me happy.
Eloise: Even the song playing now?
Bethany: Yes, it's one of the songs in the whole world!

Leaving a comment...

2010-02-11T21:26:00.003Z

If you leave an anonymous comment (ie not using a blog username so that you can be identified) please add your name. I have had several comments recently that I have not published because I do not know who they have come from and I am always wary of bugs and hackers so usually will not publish an anonymous one unless I can work out who you are or you tell me who you are! It's a shame because they are most likely genuine comments but I dont feel confident posting them. Thank you. :)

2010-02-10T23:00:00.003Z

Today, after they completed their school work, we took the girls to the mining museum. It's been such a long time since we've been, what with illness in our house, my mum being ill and passing away and the problems we've been having with their education. Time has flown by and so many of our regular favourite places have been abandoned. At last we are managing to get back into a better routine even though a lot of things are still up in the air, that means we are managing to visit our favourite haunts and friends we have missed.

We caught up with the staff, including a new member who we know from somewhere else and old friends like John, in the picture above. John is a fantastic bloke, he looks after the girls like princesses whenever we are there and always wants to treat them. They always look out for him, today they chased him across the courtyard shouting his name to get his attention! We stood in the snow chatting for several minutes, shivering but not wanting to break up the reunion. We caught up with the staff inside the building too! :) The girls discovered a new exhibit, tidied up in the playroom after the previous visitors (how can people turn a room upside down like that then leave it?) and enjoyed ice cream and racing around (not at the same time!) before it was time to leave.

Today was a good day. Hooray.

How Much Can Happen In A Couple Of Months?

2010-02-09T22:16:00.013Z

It's been a difficult few months and I haven't updated much. I'll tell you more about it but I'm going to start with today because it's been a great day. So there's no better place to start.

A little funny from Eloise...

(In car, talking about Abba songs) "We don't normally listen to this one, it's usually Chicken Tikka."*

This morning we started early getting on with school work and had it all done before lunch. So we headed out for the day, collected Pops on the way and started off the fun at the cinema. We went to see Alvin and the Chipmunks: The Squeakquel. One great thing about having the girls home during the day is that the places we visit aren't cluttered with school children. We had the entire theatre to ourselves. It was great for the girls, especially Bethany who doesn't hold back when she thinks something is funny! At the end of the film when the credits were rolling we danced on the space at the front of the seats.

Next we headed to the park and had fun for a few minutes before moving on.

After dropping Pops off we headed for MacDonalds for a snack (oh the shame, I promise I don't take the girls there often!) and next to dancing class. There's a buzz at dancing class at the moment as we have a couple of dancing competitions coming up and the dancing school show. I love the buzz, I love getting excited about upcoming events and watching the aniticpation building in the girls.

So it's been a pretty great day which has run smoothly. Unfortunately that's not typical of my recent experience. We've all had a rough time for various different reasons. My mum was poorly in the run up to Christmas and was hospitalised. I spent several days over the Christmas period, including Christmas Day, at hospital with my mum. It was hard because not only was my mum clearly very ill but it should have been a great celebration - Bethany's 1st post transplant Christmas. But not only did we not get to celebrate but I am also missed a great deal of it. My mum passed away just after Christmas. Although we knew she was very ill and had been ill for some time it still came as a shock due to the circumstances. Did you know that if someone passes away over Christmas it's very hard to speak to the correct people and follow procedure because everyone is on holiday? It took until mid-January to get the funeral sorted out and the hospital managed to lose my mum's belongings which included a Christmas present from Bethany and Eloise that I so wanted back. It also meant that yet another special milestone went past without being celebrated - the 1st anniversary of Bethany's transplant. I had such big plans for the celebration and in the end we did nothing, absolutely nothing as my mum's funeral was 3 days earlier. Fortunately the girls were invited to a birthday party on the day of Bethany's anniversary so at least they had fun at a party, even if it wasn't their own.

On top of that the girls are presently not going to school although hopefully this is a short term measure. We have ongoing issues with keeping Bethany safe and agreements about her needs in school. The issues are serious and we are not willing to risk Bethany's health so, for now, I am home schooling. Although the situation is causing considerable anxiety and distress, I'm thoroughly enjoying teaching the girls. We have gone back to basics, going over groundwork like forming letters correctly but also covering up to date work. I've worked hard to prepare work for them, making it as fun as possible, including outings to cover specific subjects and we've had a blast. I'm going to miss them when they get back to school but it will feel good to catch up with my life!

Anyway, I'll leave it there as I can't possibly get the last few weeks into this one blog. Today felt like a good day to kick start it again as it's been such a good day. I hope I have more of them to blog about soon.

*Chiquitita!

Thames Valley Police Officers

2010-01-15T15:02:00.005Z

http://news.bbc.co.uk/1/hi/england/8458844.stm

I know they were on duty (why would you have a riot shield with you if you weren't on duty) but surely community spirit comes into play here? Surely showing they have a sense of humour comes into play? I would much rather these officers attend something that I reported than some of the brusk and seeminly uncaring ones that I have dealt with*

*Please note, we have some fantastic police officers in this area, this is not a comment on the general ability or personality of our local boys in blue.

This Time Last Year

2009-12-22T21:51:00.007Z

http://fairenuff-familypficblog.blogspot.com/2008/12/call-for-transplant.html

This time last year Bethany's life was very different when we got the first 'false alarm call' for transplant. Please read the link above and tell your friends and family your feelings about organ donation. Do you know that even if you are a keen advocate of organ donation your next of kin can refuse to allow your organs to be donated. The best way for them to advocate your wishes is to tell them.

A Classic From Bethany...

2009-12-19T00:40:00.009Z

Picture the scene: Bethany is in her private lesson at dancing class, working her way through physio exercises. There's one particular exercise where she has to rock forwards and put her weight on her arms whilst sitting down. She originally hated this exercise then suddenly had a change of heart and has been determined to complete it ever since that moment. She has practised week after week but has never managed to complete the exercise, it requires strength that she is working on. Today she didn't want to move onto the next exercise and kept trying over and over. Eventually she had to admit defeat because it was hurting her hands and arms. And the classic quote of the day...

"Mummy, I have to stop, my hands are getting out of breath."

Ah bless. And do you know what, by the end of the lesson she had managed to complete the exercise. What a star, she will not let go of anything, she will not allow anything to beat her. It's such a great attitude for someone who has spent her life fighting; fighting for her life. Today I am especially proud of Bethany. After weeks of struggling she has triumphed in a challenge that threatened to evade her. Now onto the next exercise and the next challenge....

*walks away from the computer chuckling at the 'hands breathing' quote*

Shows, Pantomimes, Parties!

2009-12-14T00:07:00.016Z

We've had a very busy time since I last updated. Some of it has been great fun, some of it has been hard to go through - I'll expand on the tougher bits later because I want to share the joy of our last couple of weeks.

First of all...

IT'S CHRISTMAAAAAAAAS!!!

Here's is Eloise enjoying the decorations in our living room, thanks to Tony's skills with all things Christmas. Thank goodness for Tony, there's no way I could rig up all of these decorations. He always manages to make the living room look more like Santa's grotto and the girls love it.

In November, after we saw The Chuckle Brothers, Bethany was still struggling with her health and then both girls ended up having to miss school for a few days due to swine flu (going round school, the girls didn't have it). We were all experiencing cabin fever so decided to take ourselves off to Scarborough for a treat. Eloise loved eating out, as you can see from the photo below. We took Pops with us, the girls love sharing time with him so it was especially magical after such a crummy few weeks leading up to this outing. We strolled along the harbour, looking at the boats and watching the lights twinkle and reflect on the water. We took the pram with us, because Bethany still wasn't up to full strength even though she felt much improved, so that it didn't take it's toll on her body.On 5th December we held a street party to raise money for the Sick Children's Trust. You can read more about it at our dedicated website. The girls insisted they wanted to help us prepare for the event so they spent an hour one evening wrapping the lucky dip prizes. It didn't stop them playing on the lucky dip on the night, even though they wrapped the prizes themselves and knew what gifts were inside! Santa dropped in to say hello to the children and hand out gifts. Here is Eloise and Bethany's friend, Millie, having just spoken to Santa. Masood Ahmed, our local councillor, was our special guest and switched the lights on after making a speech. Everyone had a great time, the switch on was a great success despite the pouring rain, and we managed to raise approx £200 in an hour. You can make a donation towards our total money raised through our website or if you live locally you can put a donation through the letterbox (in an envelope marked "Christmas Lights Donation"). Thank you to all those people who helped out, not just on the night but in the days running up to the switch on, during the day of the event and all those people and businesses who donated or loaned us essential items. It wouldn't have happened without you. On 6th December we went to a party with our friends from Special Kids in the UK. A couple of mums organised a wonderful morning with entertainment and a buffet. The girls were in their element and I must admit to shedding a tear watching them having so much fun, especially Bethany, as her confidence has been knocked so much recently. At the beginning of the party she kept to herself and was shy but by the end of it she was up and dancing with the more boisterous kids. Bethany, Eloise and Ethan using props provided by the Shabang, the couple who provided the entertainment. Bethany showing off the treasure she found at the bottom of the ocean!The 6th of December was a very busy day. The girls were invited to see a ballet at the Leeds Grand in the afternoon. We had to leave the morning party a little early to get ready in time for the ballet. The ballet, A Christmas Carol, was magical (and a box office hit). Bethany sat with her mouth wide open for most of it, drinking in the atmosphere and dances. Eloise sat next to me, narrating for me in case I missed anything! After the ballet finished the children were invited to meet the cast. Oh how wonderful it was, especially as Scrooge was such a character. Both the girls gravitated towards him and he proved to be a great sport, having photos taken and chatting away (as did all of the cast). The performers were from The Northern Ballet Theatre and they have blogged about it here. I can't recommend them enough. I hope we get to see them again one day soon. That's where the photos end but not where our journey of fun ends. We have been having more fun but I just can't find the time to edit my photos! Yesterday we attended a party hosted by our local children's ward. They invite us every year and the girls always thoroughly enjoy it. There is always an entertainer who has the kids in fits of laughter and a special guest drops in before the party ends to hand out presents, ho ho ho! Bethany has had endless amounts of horrible treatment on our local ward, hideously painful injections that were the equivolent of trying to push glue into her legs, blood test after blood test, inpatient stays after having severe symptoms of liver disease and, since transplant, of infection. It's great to be able to mix with our favourite staff (they are all great on our local ward) for fun, not because we are there yet again for a horrible treatment or because Bethany is unwell, but because we have been invited to share time and laughter with a group of people who have been such a big part of our lives.

Today we went to see a theatre group show. The girls were in fits of laughter when the pantomime (second half of the show) started and Bethany, being Bethany, was particularly vocal during the whole thing. "Oh no she wasn't,"... "Oh yes she was!" The performers were brilliant, integrating her heckling and having conversations with her :). Both girls came out with a big grin, clutching a selection box from Santa. Honestly, I don't know how Santa finds time to organise all of the toys, he seems to be out and about so much. We've seen him several time recently. I suspect he has the elves doing all the work!

I will update more about Bethany's health of her Caringbridge website. Right now her body finally seems to be fighting the infection although, for transplant patients, it can recur over and over for months, even years, so I am being careful not to say too much for fear of jinxing Christmas. She is having health issues on other levels and struggling. It's incredibly difficult, as a parent, to watch her come through transplant and go on to have new struggles. I will update more on that when I have more information. Right now we are in the assessment stage and I am hoping I can give you a 'best case scenario' update after Christmas so for now I'm afraid I'll have to be a bit mysterious. We are still struggling with the balance between keeping her healthy and safe versus letting her be as normal as possible. It's proving to be a difficult balance in school. Luckily we are with her just about everywhere else she goes which makes it much easier to make judgement calls and on the spot decisions. Her physio is tiring her out and making her weepy but we are persevering as it is going to help in the long term even though it's hard now. We hope that one day we wont have to still consider whether doing a, b or c wont make her too tired or hurt her legs or tummy too much but right now we are still at the point where we make daily judgements on whether she can cope with certain activities. You wouldn't know to look at her, when she's bouncing along she looks full of the joys of spring it's hard to believe she struggles. In a way it makes it even harder for her, that her disability is hidden. But she will often tell us later that she was in pain but so desperately didn't want to miss out that she wouldn't admit it at the time. I'm so glad she's got that fighting spirit, it's what has got her this far and I'm sure it will take her much further. Despite being almost a year post transplant we are still in the early stages of the recovery journey. I'm thankful that we are past the most dangerous part, immediately post transplant, but now we are into the long haul, the slow up hill journey, that hopefully will continue uphill for a long time and we'll always have more to aim for. I never want to look down the hill again and wonder if we'll hit the bottom.

I'll sign off by asking you all to consider being an organ donor if you aren't already. We are holding our donor family in our hearts at this time of year especially, we are forever grateful that someone gave us the opportunity to continue being a family. If it wasn't for someone saying yes to organ donation this whole post would not exist and we would be a family of three, not four. Life is for living, life is amazing, but please consider being an organ donor so that someone else can continue on their amazing and unique journey.

Is It Possible For A Child To Leave Footprints On The Ceiling...?

2009-11-22T14:04:00.013Z

...because I think Bethany did yesterday!

Picture the scene: The girls know something is going to happen as we've had to turn down several party invites and a dancing show. We've assured them it's something exciting but they seem dubious - well you would too if you'd said "No," to parties!

Mid afternoon we announce that we are taking them to see the Chuckle Brothers in pantomime. We have watched nothing but Chuckle Brother's pantomime DVD's for several weeks and they have helped get Bethany through the frustration of being ill. Cue Bethany being so excited that I think those footprints on the ceiling are hers! Oh my goodness, she ran from room to room, whooping and shrieking, jumping and screaming with the biggest grin on her face. And after the last few weeks (see previous post) we all needed this to cheer us up.

I started getting the girls ready. We'd already painted their finger and toe nails earlier in the week. They put their party outfits on and I did their party hairstyles. The final touch was glitter body spray. *Warning: only use glitter body spray if you are prepared for your whole house to be covered in glitter for weeks!!* You can't see it in these photos but, trust me, the were very sparkly kids!

We set off in the rain but nothing could dampen our spirits. We arrived in plenty of time, waaaay too early and took our time exploring the theatre, waiting for our friends to arrive. We bought Chuckle Brother's memorabilia (we've got enough to last a life time, I think our contribution alone will be enough for the brothers to go on holiday!) and went for a drink while we waited. The girls excitedly looked round and when we sat down for a drink they explored the outside world through the windows splashed with sparkly rain.

At 4.30pm we waited in the foyer for our friends to arrive and, thankfully we found a couple of chairs for the girls to sit on. You can see how tired Bethany is in this photo, she's been mostly pale and lethargic for weeks now but that grin never left her face. Eloise, well, she's bonkers, as you can see! I think she may have also been slightly excited, what do you think?!

We all met up in the theatre and eventually got our seats sorted out. The kids were bouncing about and making various noises that excited children make!

The adults had chance for a bit of a natter and catch up then *drum roll* the room goes dark and the theatre goes quiet.

Oooh, the anticipation...

and then...

the pantomime starts, the crowd goes wild, the kids scream and whoop, and the magic begins.

"It's behind you!"

"Ghost, there, behind you!"

"Sing the cream cake song!"

"Oooh... ahhhh..."

I kept leaning forward to watch the girls faces. Eloise was fascinated and concentrating hard. Bethany was in fits of laughter and more vocal than I've ever seen her at any performance. She was leaning so far forward and pointing to warn the performers about ghosts and ghoulies that I had to ask her to sit back because she was in danger of tickling the people 2 rows in front!

During the interval the children all entertained each other and, despite all the adults agreeing we wouldn't, we got suckered into buying sweets for the children. I had tears in my eyes as I watched the girls enjoy themselves.

*drum roll*

It gets dark again, much shuffling ensues as children desperately try to get to their seats before they miss anything and off we go again... Oh yes we did...

At the end of the show we all dashed out to the front as the Chuckle Brothers were going to be signing autographs in the foyer. We were lucky enough to be first and I managed to get a photo of them with the girls. We seemed to wait forever and Bethany was in pain and feeling cranky as we stood there. But look at her face as she got to stand next to the Chuckle Brothers! Both the girls think it's wonderful that they met them and we now have a signed poster to put up in their bedroom.

We finished off the evening with group hugs outside the theatre before our friends and us all headed home in opposite directions. We had a wonderful night and I can't remember when I last saw the girls so full of excitement and happiness, it was positively oozing out of them.

Today Bethany is tired and cranky and, perhaps pessimistically, we wait for the next symptoms to arrive. Her conjunctivitis is back and she looks to have a cold sore - although she's never had one before so we'll have to have that checked out. How much more can her immune system take? I am amazed (and ecstatic) that her liver numbers are holding up but I am worried that we will be seeing Christmas or the New Year in hospital. It's amazing to think that she's managed so many months of being stable and all of a sudden her immune system is being hit hard, over and over. We have many special events planned over the Christmas period so here's hoping we don't miss any through ill health.

Let the Christmas Season and all the merriment begin!

Things To Be Grateful For...

2009-11-21T01:46:00.011Z

Smiles!

Bethany has not been well at all recently. You can read more about it on her Caringbridge website. She has missed special events, had various symptoms of 3 different infections (which we now believe are all symptoms of the same umbrella infection), has been in hospital twice, has missed a lot of school and has generally felt tired, cranky and emotional. And who can blame her?

I have been increasingly feeling like our world is dictated by medical needs, emergency hospital stays, blood tests, nasty symptoms, unreliability, emotional outbursts, lethargy and all that jazz. I've wanted to write an update for a while but there just isn't enough hours in the day (I'm writing this at 2.30am). I am trying to organise elements of our Christmas_Extravaganza to raise money for the Sick_Children's_Trust. I am getting behind with household jobs, stressed about how I am going to manage to complete them with a child (or two) constantly with me and I haven't even had chance to think about Christmas.

Bethany had a horrendous day yesterday. We had liver clinic in the morning followed by another appointment straight after that. Our plan was to get through the appointments and have some girly time, shopping and eating out. It didn't quite go that way. Apparently Bethany didn't have any blood with her! The liver clinic includes blood tests to check various levels that are important to liver patients, especially her immunosuppressant level as it is such a delicate balancing act between keeping well and not rejecting her transplanted liver. No matter how much they tried, the phlebotomists could not get any blood. They were doing a great job, they hit veins, Bethany just wasn't bleeding. She didn't need a plaster for one of the attempts because it didn't even bleed when they pulled the needle out of her hand. Eventually, 3 hours later, 4 bloods tests and a lot of screaming, sweat and distress later, they managed to get enough blood for the tests that needed to be done. It was a traumatic morning - for me as well as Bethany. It's one of the cruellest things in the world, to have to hold your screaming child down while someone sticks a needle in her. If the circumstances were different it would be abuse! And yet, we have to do this routinely every couple of weeks (or every couple of days recently). It's not just to keep her in the best of health, it's to keep her alive, a necessary evil and we all breathe a sign of relief each time it's over. Bethany is usually a little superstar, she doesn't want distraction, in fact she'll tell you off if you try to distract her! She knows which vein she wants you to go for (and she's always right) and she wants to watch. Then she gets a plaster and a sticker and is proud of herself for being so brave. But she's had so many blood tests recently, with having had recurring infections and being inpatient, that she has become much less tolerant. I long for the day when she feels more confident about them again and goes back to telling them which vein to use and checking that they are doing it correctly, giving the staff stickers because she thinks they did a good job and generally being a cheeky money instead of curling up on the bed or in a chair and holding her hand, whimpering. She is a brave and strong girl, I know it wont be long before she bounces back. In the meantime my heart will continue to ache for what she has to go through to stay alive.

Today she showed signs of conjunctivitis yet again. She has been ill for 6 weeks now, it started with sickness and diarrhoea that she caught at school, then she had conjunctivitis which developed on the same day as she had dental surgery, can she not catch a break?! That appeared to clear up but then came back again. Then she had a UTI which landed her in hospital on IV antibiotics. Again, this infection appeared to clear up then came back a week later. Now she's got the conjunctivitis again. It turns out that she has a virus that takes months to go away in immune suppressed patients and can cause recurring infections all that time. Her little body is struggling to fight anything off now, it doesn't get over one set of symtoms before she starts with another one. Right now she has been off school for approx 6 weeks, apart from a few days where she went back before she came down with the next set of symptoms.

On top of the conjunctivitis which developed today we also found out that the most important blood test didn't produce a result because the blood clotted in the vial. So guess who has to endure yet another blood test on Tuesday?

So basically, it's been a crummy few weeks for Bethany and for all of us as a family. In and out of hospital, disturbed sleep patterns, family split between 2 locations, children missing sleeping in the same room and giggling together, painful symptoms, work getting put back more and more.

Then, this evening I got an email from someone who is starting out on the liver journey. It brought me to tears and reminded me just how much we went through when Bethany was a baby. All those times that we couldn't see a future for her, when we were afraid to sleep because we might miss something important, when we were afraid to go out and couldn't have friends in the house because Bethany was terrified of everyone, when she had severe rickets, when she had surgery to insert a line in her main artery right next to her heart because a canula couldn't cope with the huge amount of drugs she needed to stay alive, when we got a phone call saying we had to drop everything and get to the hospital because her last set of blood tests were dire and she needed immediate treatment, when we longed for days where the biggest complication we would have to deal with would be an infection. And here we are. And how amazing. We... are... here. We... are... here.

Things to be grateful for... no matter how delicate Bethany's health is, no matter how many hospital stays we have to endure, no matter how many times we take the girls out to make up for the hideous blood test/procedure/infection we've all just dealt with, no matter how many tears we shed for what Bethany has been through and what lays ahead... these are the days we prayed for when she was a baby. These are the days we daren't imagine in case they didn't come true. These days. We are here and we are dancing in the rain, we are not moping because we are getting wet, we are dancing in the puddles and looking at the rainbows.

I Made A Promise...

2009-10-31T13:57:00.014Z

...and here are the photos I promised, complete with some bonus ones.

This is my little actress, Eloise, about to set off to dancing competitions. She's such a ham! She's in a dance called Ugly Duckling, as you can see by the costume. On the same day she put some packaging on her hair and thought it was hilarious because we said it looked like the world's biggest bun net!

Earlier this month Eloise was awarded George for doing something outstanding in her class at school. Of course we had to treat him and show him the wonders of our favourite places. So we took him to the National Coal Mining Museum, met John the train driver, went to Asda for our tea (oh yes, we know how to show a puppet a good time!) and took him to our mountain to show him the sunset.

The girls got new winter coats and couldn't stop posing in them. I think they like them, what do you think?!

Bethany took a ballet rosette exam. She loves being pampered when she has an exam or competiton, having her hair and make up done.

During the half term holiday Ethan came to visit us with Danielle and we took them to the ice cream parlour and the fair in town. They all loved the rides and Bethany went on the big Sizzler ride for the first time. Pre-transplant it would have been too dangerous to her health.

Never work with children or animals... there's always one who spoils the shot! lol

Bethany and Eloise modelling their new High School Musical pyjamas.

During the half term holidays we went back to the mining museum and met up with John. He is a superstar and always treats the girls like princesses. They were allowed to drive the train again. We always joke that he can retire any time he wants because the girls are now proficient in the job!

We went the the mining museum and watched a pantomime performed by Pocket Panto. We enjoyed it so much that we went back the next day and watched it again. On the second day we sat on the front row and took Pops with us. What he didn't know was that the day before we had tipped them off that we were returning and that they were welcome to mercilessly torment him! Bwahahaha, they did! During the audience participation Bethany was called up to join in a dance. She was sooooooo excited about being able to go up to the front and perform. I think I might know what she is going to be when she grows up! She thought it was fantastic when Sarah, the main character, made a big fuss of Bethany doing a curtsey. Bethany announced, "I'm a dancer." It was such a great moment for her, to be able to shine like that and be the strong one for once. Even more so when you consider that she has been so ill recently and had her energy zapped (see her caringbridge site for more info) and the day after this she had dental surgery under general anasthetic and caught conjunctivitis. She so needed this special day (and the one with Ethan and Danielle) which helped make the holiday special instead of just being a week of being sick.

Due to Bethany feeling so rough after her surgery we had some stay at home days. We fitted in all sorts of activities in between rests and medication. They made some drawings to go in special picture frames for their bedroom and made pumpkin lanterns for the first time ever - thanks to John who bought them both a pumpkin. Today they are dressed as a witch and a pumpkin, anyone would think it was hallowe'en!

And here are your bonus photos, from earlier this month. They are amongst my favourites so I wanted to share them with you.

Hope you have a good weekend and have lots of photo moments of your own.

Quote Of The Day...

2009-10-29T13:29:00.001Z

Eloise: Mummy, don't tell Daddy but you are in charge!

Raising Money and Where Did The Summer Go?

2009-10-20T14:59:00.003+01:00

We've been especially busy recently, hence my lack of blog. I have a few photos that I will share when I get time to download them. Tony and I have been working on some great ideas for raising more money for the Sick Children's Trust. One of those is our annual Christmas_Lights_Extrvaganza which we have held for a few years now and this year promises to be bigger and better than ever. Everyone is welcome but if you can't make it on the day you can always make a donation through the website and we will post photos after the event.

I've just updated Bethany's Caringbridge site about her recent health. We have the school holidays coming up so hopefully I will get chance to update a little more with lots of happy days out once we get past the holidays. Although I often wonder where the time goes - the girls are now in school full time. Bethany does have regular appointments which keeps the diary full but I've never had so much time on my hands yet I've never been so busy. How did that happen? I'm beginning to wonder if someone is stealing my hours when I am not looking!

I'm going to try to update more regularly but for now, don't forget to make a donation to Christmas_In_Thornhill and wait in anticipation for the photos I will post soon! :D

Contents of a book bag...

2009-09-29T18:23:00.006+01:00

Bethany got out her book from her book bag today and we checked for school letters. We found...

1. a book
2. a notebook for us to report her reading
3. a ball
4. several drawings
5. a leaf
6. a feather
7. several little flowers in bits
8. pretend credit cards and...
9. a teacher's wage slip!!

Should we rename her magpie?!

#savejess

2009-09-23T21:54:00.008+01:00

Do you use twitter? There is a huge campaign going on at the moment. Add #savejess to all of your tweets and RT as much as you can. Many celebrities are joining in.

These are some of the many who are taking up the cause...Vernon Kay, David Baddiel, Phil Jupitus, Fred Durst, Jay Link, Banksy, Jonathon Ross, Amber Benson, Mike Scott, Jenson Button, RedJustRed, Rosiana Halse, Josi Picoult, MTVUK, Matt Horne, Anne Barbano, Tom Brogan, Mitch Ben...s, Pete Bennett, Tom Cox, Oli Barrett, Diversity, Sarah Brown, Sarah Cawood, Bill Bailey, Bradley and Cath Wiggins, Beverly Knight, Jeni Falconer, Jason Haskall, Matt Locke. You could be part of that...

Inspired by Pete, here's my edible #savejess effort... When you consider that one of the reasons Bethany was desperate for a liver transplant was bleeding and clotting issues it's rather ironic that I had to get a photograph quickly because the letters were bleeding into the cheesecake!

Save Jess

2009-09-23T16:46:00.001+01:00

http://www.savejess.org.uk/

What more can I say...

Conversations With Littlies

2009-09-22T17:53:00.004+01:00

On the way home from dancing we happened to have the radio on and the news came on. A news item about a murder was announced. It made the girls sit up and listen and we had a conversation about why people murder. The end of it made me chuckle...

Eloise: Mummy, has that person gone to jail?
Me: Yes, they'll be in jail for a long time.
Eloise: Why are they in jail?
Me: Because they've been naughty.
Eloise: Does that mean they have to sit there and think about what they have done?

Can you tell what we say to the girls if they get time out? Well, I guess prison is an adult version of time out to a child (and slightly more severe)!

Confidence...

2009-09-22T17:13:00.006+01:00

I have a lack of confidence in the available advice at our local hospital. What do you think......?!

I asked the desk for direction to the phlebotomists over and over but it refused to reply!

Jesus and Genes

2009-09-15T17:23:00.003+01:00

Earlier today I had a conversation with Bethany. We discussed God and Jesus and I explained that Jesus is God's son. "But Daddy says Jesus IS God," replied Bethany. Isn't it all confusing for little children. I explained it the best I could. Then we moved on to Bethany and Eloise being my daughters. I explained that they are my daughters but also they are a part of me and Daddy because they have our genes. Bethany replied, "Does that mean that when you were little you wore these clothes for school?"

Out of the mouths of babes, eh? So then we had another conversation discussing the difference between genes and jeans!

Red Fruit...

2009-09-14T10:42:00.001+01:00

Shouldn't red fruit come with a warning?!!

Eloise's Turn To Shine

2009-09-13T00:17:00.005+01:00

Eloise is now officially a solo artist! She started private lessons at dancing class 3 weeks ago because she has been picked out as talented by the teachers and they want her to have a solo at the dancing competitions. Eloise is enthusiastic about having her own dance and so the private lessons began. In only 3 weeks she has learned a whole routine and is already improving her skills.

Sometimes life is all about blood tests, results, medicine, pain, lack of sleep, the list goes on. And in all of that list Eloise often finds herself in the background while we focus on Bethany out of necessity. It's wonderful to be able to give Eloise such positive attention and finally she is in the limelight. She has a great attitude, is looking forward to competing because she wants to perform on stage, not because she wants a medal. I can't wait to see her on stage. I know several of the dancing mums will be sat on the front row crying along with me. So if you see me jumping up an down with tears in my eyes in October you know what's happened!

I leave you with a montage of our summer holidays. :)

Summer Hols '09

Bethany's Health Update

2009-08-27T18:07:00.003+01:00

Bethany had liver clinic today. It all went well, she had fun playing with the toys and it was lovely to have a relaxed appointment as she is doing well liver-wise. But I didn't get long to relax, we got a call from the hospital tonight to admit her. You can read about it here.

August Fun and Frustration

2009-08-26T20:32:00.017+01:00

We've had a fabulous August filled with outings, get togethers, photo opportunities (naturally!) and lots of fun. Our motto has been 'use every day to the full as you don't know what tomorrow brings.' I know I have mentioned some of these outings before (and I'm losing track so I might not have mentioned as many as I thought, lol) but I have edited some photos so here's the proper update. We met up with Sarah and William at the National Railway Museum in York for a photo op. Sarah is writing a blog about a photography project she is working on called Gifts Of Life to raise awareness of organ donation. She is a fantastic photographer and I was exicted to see what shots she would take as well as looking forward to meeting her and William. William is a little smasher, he had a transplant a few months before Bethany and it was great to see the two of them click. Eloise, poor thing, was a little bit left out but William did his best to offer them both hugs and make them equal. They bonded over a booklet about trains (to know William is to know trains!) which probably helped. As you can see, William is very interested in food. It's a shame he's not as interested in eating it! :)Wouldn't you like to know what they are looking at?!William, the gentleman, hugged and kissed the girls before we parted company and called out "I love you," as we walked away. Bless him, I wanted to take him home. Sarah, you know where we are, we are always happy to accept large parcels with airholes!

The next outing was to the Special Kids in the UK family day. Now I know I have already blogged about this day because it's the same day that I look the quad bike video clip and photo. But it was such a good day it's worth blogging about it twice! We met up with a wonderful group of people, from all walks of life, all social levels, all ages, all different personalities. The one thing we all have in common is special children. And it creates such a strong bond, it really does. I stood watching the crowd for a while, marvelling at how a group of people from all over the country could instantly gel in such a feel good way. All the children bonded and looked after each other even though they were all very different - maybe because they were all very different. Bethany chose a lad as her boyfriend for the day (ah, young love!) and Eloise just generally mingled, my social butterfly.As well as the quad biking Bethany and Eloise completed a little assault course in a playground on the camping site. Bethany kept falling off and needed holding up. Eloise wouldn't hold my hand and waltzed through it. It made me well up to watch Bethany struggle through. It reminded me of a time pre-transplant when she would have refused to even attempt it because it scared her. Actually, the fact that she struggled made me well up a bit more but in a good way. It reminded me that despite everything being more difficult for her, more of a struggle, harder work for the same or lesser results, she battles through because she it determined to be the same as her friends, not weaker ( I mean that in a physical sense, we've made it very clear to Bethany that everyone has something different about them and it's not a weakness to need a transplant or to stuggle to keep up with peers). She has such a fighting spirit. It's great for dealing with liver disease, transplant and all that goes along with it... it's not so great to have a child with such determination when she doesn't want to tidy up or go to bed! :)Eloise is my little spider, she can scale anything. What you can't see in this photo is that Bethany was at the other side, on the bottom rope, desperately hanging on. Eloise would have climbed as high as the clouds if the ropes had gone that high. She's the one who is going to have broken bones to boast about as she gets older! Thankfully we have none to boast about yet.Towards the end of the day everyone gathered together and all the children released a balloon in memory of the children who are no longer with us. It was such an emotional moment. I feel such an ache for those who have lost a child, it was hard not to cry - too hard. I thought of the precious children who have passed away from the Special Kids group and our precious liver children who are no longer with us. And after we watched the balloons float away in the sky I gave Bethany and Eloise the biggest hug ever. I am thankful every day for the organ donor who is allowing us to have these days together. I don't think about the future, it could be long and wonderful or it could all be taken away tomorrow. But no one can take away today. We have all of these wonderful memories to carry with us when our hearts feel heavy.

The Special Kids family day was wonderful. It couldn't have been better. We didn't mind the odd bits of rain. Even as we drove away we were looking forward to the 2010 event.We managed to fit in an impromptu day trip to the seaside. It slotted in on a day when I should have been getting lots of household jobs done and packing for our weekend away starting the next day. But you can't get these days back, right? So why not make a memory.

We collected Pops and set off to Scarborough (I thought of you Shirley but Bethany had a barking cough and we didn't want to give you any germs). We drove through the rain all the way there. Joy! But it cleared up as we arrived and apart from one rain shower when we ducked into an amusements for five minutes we stayed dry. When we arrived we ate lunch then the girls immediately headed for a donkey ride. My little baby is growing up, Eloise has always backed away from donkeys but this day she rode one quite happily. Thank goodness for friends. Instead of having to be assessed and wait months (or forever) to get a buggy from the NHS a wonderful friend loaned us her buggy. So when we take Bethany out and she gets tired she can have a rest without it spoiling the day. She is getting better in crowds but still needs to hide away to cope with them sometimes. The photo above shows one example of how she manages it. She gets in the buggy, hides away under her hood or hands and goes into her own world for a few minutes. It works wonderfully for her and stops her getting distressed. She really is on another planet for a few minutes, completely zoned out. When she decides to come back to our world she has a long daydream story to tell us about where she just went and she feels much better for it. Hooray for a child who has taught herself coping strategies. You might say that hiding away is not a coping strategy but I think it's a bloomin' good one. She's worked out what she needs to reduce her stress levels, it doesn't cause anyone else any harm and she feels better for it. Job done. The girls had a go on the trampolines and rides on the seafront and we wandered along looking in random shops before ending up at the top end of the south beach, by the lighthouse. We stopped for tea and made friends with some cheeky seagulls who decided our friendship was well worth it when they saw we had food. The girls were fascinated with watching them close up so gave them an incentive to stay by throwing the odd bit of cheese toastie towards them! As you can see from the photos, it lasted a while and we made a lot of feathered friends! After we had finished our food we stayed for a while, watching the seagulls, despite the 90 mph winds (ok, that might be a slight exaggeration, but only slight) then caught the open topped bus back to the end of the beach where our car was parked. Pops had the joy of sitting with the girls looking at the scenery on the top deck whilst I sat, all forlorn, on the bottom deck, trying to stop an overloaded pram from tipping up in a bus which was clearly not designed for buggies!

Tell me these are not the eyes of a supermodel? This is Danielle. Our latest outing which I am going to blog about today is our weekend away, staying with Danielle, Doug and Ethan. Ethan is Bethany's boyfriend - unless she's with one of her other boyfriends (shhhh, don't tell William)*. Bethany and Ethan have been giddy about meeting up since we planned it and counted the days down. Ah, young love again, isn't it marvellous. We set off for the long drive down after a dancing lesson on Friday night and I encouraged the girls to nap so that they could have a snack and play for a few minutes when we arrived. They did nap and the few minutes turned into a couple of hours because the kids were having good fun. Sadly, Tony missed all of the fun because he was working but we thought of him while we played!

I don't have any photos to show you of the weekend because I haven't edited them yet. But when I tell you that one evening there was a party with, ahem, a teeny bit of alcohol, then it might be safer to let you use your imagination.

We spent some of the first full day in a lovely park with ducks and deer. After tiring themselves out the kids had an ice cream - oh, hang on, that's right, we all had an ice cream. :) The ice cream must have done the trick because the kids played on the trampoline when we got back to the house. The party was that evening (happy birthday to Doug and Ethan). How come kids clothes attract stains? How come the more special the clothes the more obvious the stain? We took party dresses for the girls.... yes, you know what I'm going to say next. I didn't get them changed until two minutes before the party was due to start. Five minutes after that Bethany had a long milk stain down the front of her beautiful, wine (and milk) coloured dress. An hour later she was back in trousers and a t-shirt after adding several other various stains to the dress. Well, it was good while it lasted... for two minutes. *sigh* The girls normally go to bed at 7pm so this was a huge treat for them - to get to stay up and mingle! Bethany was in her element as she adopted other children as her friends. Eloise adopted one older girl and enjoyed being looked after until she finally fell asleep on me (Eloise, not the older girl!). She managed to sleep through two hours of the loudest karaoke I've ever heard in my life, curled up on my lap. Yet at home she wakes up in a sweat if a mouse coughs two streets away. Go figure!

On Sunday we all had a lie in, surprisingly! Eloise and I got up after Danielle, Doug and Ethan but Bethany didnt surface for another two hours, not until after 11am. Even when she was at her worst with lethargy she always got up in the morning so I guess she really needed the extra sleep that morning. We headed off to a park for an hour after lunch in pizza hut. Danielle and I now have stronger arms. Swings, swings, and more swings. "Push me Mummy." Argh!! By the time we left the park we all had different nicknames, kindly donated by Bethany. Danielle is now called Broccoli, I am Yorkshire Pudding (although Danielle gave me that name through squeals of laughter - yeah, thanks mate), Ethan is Crabby Patty (as in Spongebob), Eloise is Fish Finger and Bethany is... erm, oh I forget. Well whatever it was it was the most original.

We left later than intended with three children complaining that it, "Isn't that late," and headed for home - leaving one of the three children behind, of course. And, bless, the children were already pining for each other.

You may have noticed that I wrote 'frustration' in the title of this update. Well, there's always something isn't there. Bethany has to take an immunosuppressant drug twice a day. In order to make this up for her we have to wear latex gloves and a mask as it is such a dangerous drug. The specialist hospital do not want to provide them for us even though they say we need to use them as we do not live in that area. Our doctor can not provide the same gloves through no fault of her own, she's gone out of her way for us in the past and I know she would if she could. Somewhere in between all this is little us. Running round between people trying to get A to speak to B and get C to provide the gloves. It's amazing how much time this sort of thing takes up and there was a time when we spent a lot of our day doing this sort of thing. I'm very thankful that things are not as 'medical' as they used to be in our lives but it also makes an isolated incident seem more pronounced because it's not constant. The NHS is sometimes a wonderful thing and sometimes and incredibly frustrating thing where patients are left feeling guilty for needing supplies and made to run round between various places begging for what should be provided. Argh and double argh. We still haven't got the gloves and we've been asking for months. Watch this space because you are bound to see a happy dance (or should that be a weary dance) when we finally get it sorted out and someone gives us gloves.

*We have a friend who works at the mining museum who is like an adopted grandad for the girls. When we mentioned Bethany having a boyfriend he said he needed to see him to vet him and he also needs to see his bank account. So I think we might leave the last word to John on the boyfriend front...!

Precious Girly-Whirlies

2009-08-17T13:12:00.004+01:00

Sundown Adventureland

2009-08-17T11:45:00.006+01:00

As is often the case now I have been so busy that I haven't had chance to update my blog. And it's a shame because we've been having so much fun. When we were pre-transplant and were tied down so much by Bethany's liver disease I always thought I'd have more free time post transplant. So how come I haven't?! :)

Here are some photos of our day out with Danielle and Keri - plus hubbies and kids. We are three 'liver' families and it's wonderful to get chance to meet up face to face without being in hospital. We've been lucky to have several chances recently to meet up with families who we would normally only meet in hospital or online. We like to fit in as many days out as possible, meeting all over the country. We've been to Sundown Adventureland before, it's a tried and tested place, so we knew we would enjoy it.

Thumbs Up!

2009-08-16T13:27:00.001+01:00

2009-08-16T11:22:00.006+01:00

Bethany's 1st Quad Bike Ride

Yesterday we went on an adventure to meet some wonderful people. Special Kids In The UK held an annual family day. Old and new friends gathered together. This was our first time at a SK family day and I don't mind admitting to being a little nervous - all those new faces to remember was nerve wracking enough! But I needn't have worried. We had a fabulous time, the girls made lots of new friends and enjoyed hours on a bouncy castle and bouncy slide, amongst other things.

I will update more about the day when I have edited my photos. For now I want to show you the video clip above. Bethany went on her first ever quad bike ride. She loved, loved, LOVED it and was lucky enough to get a 2nd go. Each child rode around for a couple of minutes with an adult holding a rope to the back of the bike which cut the power in case of emergency before being allowed to ride solo. Bethany was a bit too wobbly to let her ride on her own and she was sad because all the other kids got to ride without the rope attached after a couple of minutes. Then during the second time she was allowed to ride alone for the last minute. Oh my goodness, oh my goodness, oh my goodness! I thought she might burst with excitement and me with pride. Life is good.

British Transplant Games and Great Friends

2009-08-09T21:28:00.016+01:00

Day One

We set off to the British Transplant Games early afternoon on Thursday 30th July. I knew we were lucky to live only 2 - 3 hours away, some of our friends set off very early in the morning when I was still cosily dreaming! Mind you, I think the Coventry team had the best deal!

I was nervous about meeting new people and not feeling part of the team because we were spending some of the time in Coventry with friends, doing the tourist thing. As soon as we arrived we settled in and went to eat with the rest of the team. We found familiar faces and made friends with new faces. Everyone met up outside the hotel to walk to the opening ceremony a few streets away - everyone but us. You know there's always at least one child who needs to go to the toilet at that crucial time? Yup, that's right... mine X2. Argh. We found our way to the event by hot-footing it behind the team asking everyone we walked passed if they had seen a sea of red people go by. Gotta love those friendly Coventry types who all pointed us in the right direction offering a smile as a bonus. We found the team and a few stragglers well before the event started, thank goodness. MANY photos were taken - not just by me! - and the band started up. The various teams were lined up in groups and the procession stretched along the whole street. We could see the front people walking but it still took five minutes before we moved. I love the idea that the street was so packed with people celebrating life after transplant that the front set off a long time before the back. We had a bit of a caterpillar effect which seemed to amuse the children at the front of our group who took great pride in waving their flags.

We got to the main square where each team was being announced separately. They announced Leeds Little Livers and Bob Brolly, BBC Radio Coventry presenter, interviewed Bethany! She was so proud and I was gutted that I didn't have the camera ready. I bet you never thought you'd hear me say that!? He asked her, her name, her age and which organ she'd had transplanted. She didnt a great job representing the team, shouting out the answers clearly into the mircophone. *kicking myself very hard for not getting it on camera, very very hard.* She was beaming with pride as our group moved on. We were very lucky to be placed right in front of the stage so all the speeches were right in front of us. Bethany's legs were hurting and she was asking to be carried but we were packed in like sardines and it wasn't possible. So she sat at the front of the crowd for a few minutes with Eloise.

There was an entertainment group which were 'howl yourself silly' funny, doing a song and dance, representing a ficticious group entering the games (at least I hope they were ficticious!). That got everyone smiling and laughing.

Once the speeches were over the crowd slowly dispersed and made their way back to the various hotels. I found myself in awe of the crowd, of the scene that I had just witnessed. I didn't want the moment to end. It was amazing to think that Bethany (and the rest of us) we a part of that, that we were brought together with all those people through the miracle of transplant. The gift of life. We wandered around, willing the moment to last a bit longer. The girls had a look at the transplant bus as I chatted with a couple of staff manning an ambulance. They ran through the square, waving their flags behind them, enjoying the open space once the crowd had dispersed. We wandered back towards to hotel via a McD's as Bethany suddenly had an urge for ice cream. We suddenly picked up the pace so that we could get back before the ice cream melted - and we made it! Bethany and Eloise went to bed with smiley faces and ice cream tummy's. And I got a soggy ice cream after tucking them in!

Day Two

We started day two off with our team, all meeting outside the hotel to walk to the sports centre. This time I managed to get the girls toiletted and ready for the correct time! :) We walked in a huge group, Bethany holding the lead person's hand with Eloise and I following behind. Gosh the leaders walked fast! The team stretched out across Coventry centre, snaking it's way towards to sports centre. Bethany and Eloise were delighted to find we had been in this building before to attend a birthday party, what are the odds? So we walked through the building towards the sports hall saying, "Oooh, I remember this corridor... ooh, I remember those swimming baths, oooh, I remember this glass wall...." although they weren't as impressed when they realised there wasn't a party at the end of the corridor! lol. Our team sat together and I managed to fit in a chat with a couple of members from other teams that I know from elsewhere. It was lovely to feel like I knew several extra faces in the crowd and it helped to add to the atmosphere as, clearly, other people knew members of other teams too. It meant that when the kids competed we were screaming for everyone, not just our own kids, and everyone was genuinely happy for whoever won, enjoying the fun and solidarity.

Sadly, this seemed to escape Bethany. She got very upset and was in tears because her friend on our team didn't win. I tried explaining that the child she was talking about was grinning from ear to ear and was happy just to participate but Bethany was having none of it! So in the end we left a bit early to go meet some friends. Hooray, it meant we got to meet up with Sharon, Hannah and Caitlin that little bit sooner. Fancy having friends in the same place as the British Transplant Games, how lucky are we? Not only that but we have fabby friends who meet us in their car so we can follow them around and park in the right place! First of all we met up at the hotel and walked to our destination... Coventry Transport Museum. We had the pram because Bethany's legs were feeling tired and painful but she managed remarkably well. She did sit in the pram quite a bit but I indulged her because I knew we were in for several long days and didn't want her to overdo it.

All four girls loved the transport museum and had a blast. They all got to choose a little gift from the shop and we had lunch outside the museum because we were running so late we didn't have time to get home first. We sat outside and had several visits from wasps which did not impress the girls. But they had lots of fun running around on the 'clock' (anyone want to tell me the official name of it?) on the floor outside the museum. They followed the tracks on the floor, studied the steps, ran along the pathways and, not forgetting, studied pigeons!

By the time we set off home we were very tired and my feet were giving up for the day. We drove to Sharon's house and had some unpacking time, play time, pizza time and swapping presents time. The girl went to bed much later than is normal for them but, as predictably happens when you aren't at home, they took a long time to sleep. Argh!

Day Three

Today we were lucky enough to have a mini Liver Families meet up. Danielle and Justine met Sharon and I with all of the children at the Herbert Art Gallery. See how upmarket we get when we go to Coventry, eh?! The children played and entertained themselves (a lot of photography and art work went on) while the adults had a drink and a natter. Then we began touring the gallery in earnest! The children spent a long time playing with the generous choice of dress up outfits. Ethan became many different princes from various different lands and Bethany became several different princesses! We moved on to another area but I had to push Bethany along because she found a computer - she loves interactive stuff involving a computer. We found some building blocks in an open plan area then headed to a section full of sensory equipment and stickers. Can you get a better combination for kids?! We spent a long time in that room, completing sticker sheets and making a lot of noise with the instruments. Bethany found a touch screen which taught her about butterflies and she parked herself there while the others played instruments and ran around - another computer, you see!

Then to a room which had lots of craft items out on a table. Very trusting! The girls fixed themselves in front of the craft table and stuck various things to various other things and came away with 'things'! Hannah made beautiful butterflies, Robert spent time making a craft item with Justine and Stuart (I think the purpose of that was so he could blame them if it didn't work!) then they all explored various secret passages and hand puppets lying around. We only left because we had to eat. Justine & Co left at this point - well, if you will enter your cakes into competitions!

We found a little cafe across the road (thanks Sharon) and ate quickly in order to dash back to the gallery, but not before Ethan entertained us with his dancing. He's my future son-in-law according to Bethany and Ethan! We found time to explore one more room before Ethan & Co had to leave and we retired back to Sharon's house for tea. Once the girls went to bed I went to party with Sharon and Andy. And I'm afraid I will have to leave the rest to your imagination!

Day Four Sharon, did I tell you I love you? Ah, that's what friends are for. Sharon drove to the British Transplant Games event for us so that I didn't have to find the way on my own. Our plan for today was to go along to the track and field events, cheer on our team members then make our way home. But, as you'll see as you read on, we found the atmosphere pulling us in again and decided to stay a little longer - another night.

We sat at the top of the stands and made friends with another family. We'd never met the family before but it felt like we'd known each other for years and the girls instantly clicked with them. We were lucky that we accidentally positioned ourselves to see both the track and field events - the field events were in a different area behind the stands and only the top row of seats had vision on both sides. So we spent a lot of time craning out necks in both directions.

Bethany didn't forget the promise by Pudsey Bear's friend that she would get to have a photo with him today. I lost count of how many times she asked if he would be coming. The weather forcast was crummy but we got beautiful weather so bleaugh to the weatherman! We spent a lot of time cheering and standing up, looking for team members being pointed out to us. We sat with the team and ate lunch together, team bonding! THEN PUDSEY ARRIVED!! Pudsey races each year with the youngest children. I knew we had several children in that race. So we made our way down to the track to take photos of our team members, the little cuddly ones that you always want to take home! We cheered, we screamed, we took photos and once the race was over Bethany and Eloise made sure they got a photo with Pudsey. I was pleased to see that Pudsey's friend recognised Bethany and made sure he stopped for a photo opportunity before he moved on. It made Bethany's day.

While we were supporting our team one of our organisers mentioned that she had tickets available for the evening do, a gala dinner, and would we like to go. If she had asked me at the beginning of the event I would have probably said a polite no thanks, thinking I might be eager to get home by day four. But she asked me at the perfect time, while I was gripped by the event and totally emerged in the atmosphere. I can't explain to you the vibe that comes from looking round and knowing that all these people are touched by transplant and are all celebrating, everyone at different stages of recovery, celebrating different anniversaries and levels of health. Yet all tied together by one mass miracle. So you can see how it was impossible to decline the tickets! Long story short, (ha ha, I know, don't say it!), we also booked into the hotel for an extra night and called on our energy reserves to keep going.

The competitors made their way to the medal presentation and we followed on. Being one of the last ones there we couldn't see a thing so we headed over to the track, which was empty at this point as everyone was at the medal presentation, and Bethany decided to have a mock race. Bethany and Eloise headed off a few feet down the track and raced towards me *intermission, time out for the child who had a paddy because her little sister won the race, bit more time out, sit against a fence and calm down, head back to track* and then they had another go with big smiles on their faces. Bethany won. I suspect the race was fixed but I wasn't going to be the one to point it out!

Next we headed over to the field events which were in full swing with a lot of our little team members taking part. The ball throw was great, littlies from all the teams giving it their all, throwing the ball a few feet and everyone cheering them on like they had thrown it miles. It welled up, not for the first time in the day. We watched the medals presentation and cheered the kids on, once again. The Leeds Little Livers girls cleaned up, getting first, second and third. Way to go, reds (sorry, couldn't resist a tiny gloat for our team)! They all got to meet Angela Lonsdale who presented the medals and had a photo opportunity afterwards. You know me, shy and retiring when it comes to photos, bwahahaha. Still, I managed to get a pic of her with Bethany and Eloise. Then the Leeds Little Livers stood on the podium - the ones who hadn't gone back to the hotel already - and jiggled up and down making it impossible to get the classic photo of everyone looking in the same direction. As I stood there trying in vain to get that photo I marvelled at the energy of the kids in front of me, of the little miracles standing there grinning, squealing and having fun. And it made me wonder if their donors had any idea what a difference they would make one day by signing a little piece of card or registering online.

Back at the hotel (thanks Simon for getting me there without getting lost) I forced the girls to take a nap. Bethany got in bed without complaint and snuggled up, telling me that it felt strange to need a nap in the afternoon. Oh my goodness, what wonderful words. Pre-transplant she napped every day. Post transplant it feels odd enough to point it out. Marvellous, another teary moment! I rumaged through suitcases trying to find outfits that would be suitable for a gala that we didn't know we would be attending until an hour earlier. The girls were disappointed that I hadn't got dresses for them to wear but I think I managed a pretty fantastic outfit, given the one hour warning. I, on the other hand, was completely out of clothes and settled on a top that had been put out for washing. Yes folks, that smell was me! lol. Actually it was still clean and I was lucky that I had chosen to fold all of my dirty washing neatly (I don't know what possessed me!) so it came out looking ironed. What are the chances? Someone was definitely looking after me that day! We all met outside the hotel and went by bus to the gala event. The girls were very giddy and talked about the days events all the way there. As soon as we got there the girls were eager to get inside whilst others were still milling around outside as they wanted to check out our table. They found it straight away and settled in, choosing their seats and taking the opportunity to get some photos on their own cameras (start 'em young, I say!).

Several hundred photos later (and that was just us!) the event started. Bethany was exhausted at this point and I was having trouble keeping her happy and entertained so we had a bit of snuggle time after going for some fresh air. It was great to get to know the other team members around the table and we remarked how it was great to meet as friends at an event rather than as patients in the hospital. We talked about many and varied things, the kids played together (apart from the sleeping one, we let him off until he woke up!) and Bethany found a new energy when she realised there was a young girl at the table who was small enough to adopt and mother. There now follows a twenty minute break where I have nothing to tell you except that Bethany walked up and down, holding her new friend's hand, checking regularly that she was ok. This twenty minute break only stopped because the speeches started and everyone had to sit down. :)

The food arrived. Bethany and Eloise both turned their noses up at it (they don't do unfamiliar food) to which they were told that I expected them to try everything on their plates. And they did, hooray for peer pressure!

One of our younger team members, a friend from way before the transplant games, won a special award for best newcomer. Oh my goodness, here I am welling up again. I looked around, half of the nurses and ward staff were in tears! I'm welling up just writing this, each little (or huge) achievement means so much more when you know what these kids have been through, especially when you know personally. Honestly, I think I had red eyes most of the night!

Drum roll please... Pudsey Bear turned up during the speeches. Oh, oh, oh, Bethany's face. Pudsey was mobbed by children and the announcers had to keep asking them to let him through! Bethany didn't mob him, she waited near the stage so that she would be close to him when he got up there, smart cookie. Don't worry, she made sure she got a photo with him afterwards too! Everyone had a good ol' boogie at the end of the event, Bethany found a new energy reserve whilst Eloise started wilting. And then the buses arrived to take us back to the hotel. Exhausted. Happy. Content. Elated. Surrounded by miracles.

Day Five

Everybody seemed to get up early and head off home straight after breakfast. Being the smart cookie that I am (Bethany gets it from me, obviously!) I booked a very late breakfast because I knew the girls wouldn't cope with so many late nights. Sure enough I had to wake them up to go for breakfast after 9am.

We met up with some families in the dining area and all swapped details and hugs before heading out. Bethany and Eloise, extortioners that they are, conned James out of some money - obviously a gift to remember him by! James, if you are reading this, don't forget you are now officially JOHN, as named by Eloise!

Having had the extra, unexpected, night in the hotel we decided to use to day to the max before heading home. So we packed the car and headed for the transport museum again. There is a quiz that the children can do as they go around the museum. The girls had a new level of excitement about doing the quiz - could it be that they had done it only two days ago and knew where all the answers were? Hmmm, I wonder. They discovered new things that they missed the first time round, stopped for breaks and watched videos, had a ride in a simulator of the fastest land speed record vehicle (the Thrust or the Thrust 2, I forget which one) and generally enjoyed the familiarity. They ran around on the 'clock' outside and we found a beautiful garden to explore for a few minutes before we left. By the time we got back to the car they were both exhausted and contentedly slept for most of the way home - which was a relief to the driver who had never navigated that route home before, aka ME!

They haven't stopped talking about the Games since we got home. We are already excited about next year and planning what events Bethany wants to compete in. We can't wait to meet up with new friends, by which time they'll be friends from 'way back'!

What a wonderful five days. It sounds corny but I was humbled and shed tears of joy so much during those five days that I still feel the awe as I think about it.

And if no one signed up to the organ donor register this would have been another weekend of all those families mourning the loss of a loved one. Instead we got to be part of the miracle.

transport/transplant

2009-08-05T01:54:00.003+01:00

Is it just me?

Every time I type any word that begins with 'trans' I end up typing TRANSPLANT. No matter what the word is, my fingers are trained to type the word 'transplant' and I have to go back and correct it. Why? I've typed it so many times it runs off my fingers.

There you go - a quirky fact from a liver mummy!

FAITHY

2009-08-04T12:14:00.003+01:00

We've just returned from the British Transplant Games and had a wonderful time. I am looking forward to sharing an update about it soon.

But today I have to share something very important with you. Remember Faith in my transplant_montage? She passed away 6 months ago today. My heart aches for her family. Her life ended way too soon and it would have been a different story if we had enough organ donors in this country. Who Knows where she would be now or what she would be doing. I'm sure we would have shared huge hugs at the transplant games and cried together. But now we cry for a different reason.

Have you signed the organ donor register? You could make a different to a family like Faithy's.

YOU COULD SAVE 8 LIVES!

Liver Families Hugs & Hope Day

2009-07-27T00:04:00.012+01:00

Yesterday we went on an adventure. We met up with some liver friends who met on the website Liver_Families. The weather held out for us and the journey was pleasant. It was all go from the moment we got there. But can I please ask... who thought it would be a good idea to put a theme park on the steepest hill in the world? We were going to take the pram but when we saw the hill we decided against it. Bethany coped well and rarely complained about leg pains. And the best thing? Bethany is now engaged to be married! Hee hee. We went on ride after ride after ride (ok, I held bags a lot but somebody's got to do it). There was a log flume, big (little) wheel, chair lifts (not good for the faint of heart like myself but I braved it), drop lift, carousel, swinging pirate ship and many more. The best thing was when the kids had tired themselves out on the rides we all went for a meal together so that the parents got to chat. It was a great day and we are already planning our next meet up. Hooray, we can't wait.

It always surprises me how much the children have changed since we last met them. Reece is turning into a young man now, but he's still my Reecie-Weecie! Ethan has grown so much taller since we last saw him. And, of course, Bethany is now post transplant so the difference in her is fantastic.

Tony, Eloise, Bethany and Darren.

Doug, Ethan and my Reecie-Weecie.

Bethany and Christine on the log flume.

Eloise, Bethany and Ethan taking a break after the carousel.

The whole gang.

I wouldn't wish live disease on anyone but there are perks. It's amazing what wonderful families you meet along the way.

Lots To Celebrate

2009-07-21T18:48:00.011+01:00

Last week we celebrated Bethany's 6 months post transplant anniversary. We had planned a day at the seaside but our car has a nasty cough so we couldn't make it. So we planned a quiet day at home but some friends arrived unexpectedly (sorry Liz, I haven't got to those photos yet) and we all had a great, and loud, afternoon. The girls loved seeing their friends as we haven't seen them for such a long time. Would you believe, they think that, "We live in France now," is a good excuse for not dropping in more often?! The kids screamed, squirted each other with water (a lot!), ate ice lollies and generally got grubby. So I apologise to the friends they visited after us, it was our fault! It wasn't until I was putting the girls to bed that it occurred to me that it was Bethany's anniversary and that it had turned out pretty fabby after all.

At the beginning of July we went to Donna's Dream House for 5 days. It's a fantastic charity that offer holidays to children who are terminally, fatally or long term ill. We've been before (Tony runs the website for them so they feel like family) and the girls just adore the place. They counted down the days beforehand, asking almost every day, "Is it tomorrow?" Once we got there it was amazing to watch Bethany manage her energy without needing a rest. Last time we went she was very ill. She didnt particularly look ill, I dont think it was obvious to other people. The more her jaundice worsened the more she looked tanned and people who know she is ill would approach us to tell us how well she looked. We managed the time carefully so that the girls didnt run out of energy but it felt strange that we had to go slow enough for Eloise, not Bethany!

We went to the zoo, the model village, Blackpool Tower, met new friends, met old friends, had tram rides and a horse and buggy ride. We visited our friend who runs a shop on the pier, we spent copious amounts of money on the big wheel and children's rides, we played in the sand dunes at the south end of Blackpool, went to the SeaLife Centre, Louis Tussauds Waxworks and so much more. When we went to the tower Bethany spent the whole day asking when it would be time for the circus because she couldn't wait to see Mooky the Clown. I had a word with the ringmaster and when he read out the birthdays he also said hello to Bethany and Eloise from Mooky. I thought Bethany would burst!!

The girls were sad to go home but they've had their Blackpool fix and use the experience to form games now. Only today they had a teddy bears picnic then went to the zoo with their toy animals. Of course it's an unusual zoo - the animals mixed freely and the children could go into the animal areas because they were all friendly and there was absolutely no chance that the children would get eaten! lol

Here are some of my favourite photographs that I took during those 5 days...

If you want to see more you can watch my montage.

My Little Models

2009-07-14T17:25:00.004+01:00

We spent last week in Blackpool having a great family holiday. Continuing with the "I can't find time to update the blog at the moment" theme I thought I would share my favourite photo taken by Pops. This was taken on the beach at the south end of Blackpool, the girls were discovering the delights of sliding down sand dunes. If I can manage it I will follow with more photos and an update. Send me some "more hours in the day" vibes, please!

And Some More....

2009-07-02T11:48:00.004+01:00

Before...

After...

Before...After... (notice the lack of people)

Before...After... (notice the lack of furniture)

Now I really must catch up on the household jobs, I've been having entirely too much fun playing with photos!

More Photography Class Work

2009-06-30T20:14:00.009+01:00

First of all, thank you to my willing subjects. As I continue along my photography journey I need photos to play with. So I posted a request on a fantastic forum that I use and here are the results. In each case I have posted the original and then my edits. In the first photo (the wedding pic) see if you can work out how many things have been removed.

Before...

After...

Before...

After...

Before...

After...

Before...After...

Before...

After...

Ridiculously Busy

2009-06-27T20:27:00.004+01:00

How on earth did I go so long without blogging?

We have been stupid busy. My head spins every day with all of the appointments, meetings, parties, outings, occasions, libraries, school, dance classes, shopping and de-cluttering for a family member... to name but a few.

So just to keep you going here is a photo taken early this morning before we set off to a dancing competition. Straight after that we went to the girls delayed birthday party, hence the party dresses, which went very well and resulted in a huge pile of presents.

Today is a good day!

Conversation Today

2009-06-20T17:12:00.008+01:00

Eloise, uptairs: Daddy, can you come up and get my tattoo down please?

Daddy: your what?

Eloise: My tattoo!

Us: What? What tattoo?

Eloise: My purple tattoo!

Us: You haven't got a tattoo.

Eloise, getting frustrated: Yes I have. I want my purple tattoo!!

Bethany, rolling eyes and sighing: She means her tutu!

Memories, Memories... For Amy

2009-06-16T22:54:00.014+01:00

I couldn't resist another walk down memory lane. Although I have only got to 2007 I know that I have already posted some of these photos so I am going to stop now (well, after these)!

Having fun in the garden.

Visiting Lotherton Hall.

Scarborough (yes Shirley, we do like Scarborough a lot!)

I just love this photo. We went to the park for half an hour. Bethany was having a painful time and I remember thinking how wonderful it was to see her grinning.

The girls with their friend, Allanna, in Bridlington.

Meeting Archie from Balamory. Bethany still talks about meeting him.

This photo was taken on a shopping trip, the girls look cute no matter what they are doing!

Tony is keen to make sure the girls learn to drive buses from a very young age!

Experimenting with ribbons.

Watch out, her bite is worse than her roar!

Bethany and I made this Easter bonnet from scratch. I created the hat with card and Bethany did all of the decorations. Green grass, a bunny and a chick in flowers and a blue sky with clouds. Can you see it?

Who are these people and where did Bethany and Eloise go?

Bethany meeting Claire Frisby from BBC Look North after she received her 'child of courage' award.

Ice cream time at the park.

The girls at Windy Castle (Castle Hill).

Bethany enjoying her afternoon out at Windy Castle (from Peppa Pig).

Eloise doing her best urchin look after her afternoon at Windy Castle!

The reason I smile every day.

Photography Class...

2009-06-15T23:09:00.002+01:00

I have been attending photography classes on Monday nights. I thought I would treat you to something I learned today....

BEFORE...
AFTER...

Five Short Months Ago...

2009-06-14T21:53:00.012+01:00

In 2 days Bethany will be 5 months post transplant. Five months ago she was transferred to PICU after life saving surgery. Five months ago we hoped that she wouldn't reject her new liver, that she wouldn't succumb to an infection, that she wouldn't bleed internally or have any of the many complications that could cost her her life or cause her to be relisted for transplant.

Yesterday and today we watched her perform on stage and win a gold medal both times.

I remember watching Bethany in her cot when she was a baby. The cot was in a paediatric liver ward and it felt like we spent more time there than we did at home. At many points in her infancy that was true. More than once we were told that it would be a rough night and we should hope for the best... we all knew what that meant but I never accepted it, I knew Bethany was a little fighter. I remember sitting next to Bethany, looking at the machines she was attached to, watching her smile, wondering how long we had her for. Would she ever spend more than a few weeks out of hospital? Dare I think ahead to school? Would school entail machines and compromise? Would she be in constant pain? Would she need a transplant that didn't come in time? The list of complications and treatments are too numerous to mention.

Now look at her. She's a miracle.

Have YOU signed the organ donor register?