National Transplant Week

It is National Transplant Week this week - a week where people are urged to think about organ donation. I could blog on for ages about this but there is one main message really. Today, I woke up, cuddled, got ready and sent three very happy and healthy children to school. If it were not for William's wonderful donor and her family, one of those children would be missing from our lives.

The more I meet donor families and also meet people who lost a loved one but didn't donate organs and wish they did, the more it becomes clear that talking about organ donation is as important, if not more so than signing the register. Your loved ones need to know your feelings about it so that your wishes can be known if they have to make such a decision.

This week, think about it, talk about it and sign up here

Thank-you

A Lovely But Emotional Weekend

William's new special friend

And another special friend

The lovely Holly, making butterflies with Hope and William

And Ellie hard at work with hers

Planting the Memory Rose

Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.

We stayed with a lovely family and made some great new friends. We felt so relaxed with them and had lots of laughs and fun. The children were all up playing and watching DVDs until midnight on Friday, with William asleep on the sofa between them. The adults were sipping wine and chatting and the rest of our time with them followed on in the same way. It was hard to believe we had only just met. William was particularly taken with the family dog. He was somewhat worried at first and declared that he wanted to go home as soon but would not leave her by the end of breakfast time the next morning. The children haven't yet stopped talking about their new friends, the fun we had with them and their hope that it won't be the last time they see them.

The Donor Family Network meet was an emotional day. I felt very privledged to be there with all these wonderful people who have donated organs. I spent a lot of the morning with the children, settling them into their craft workshops but did find time to catch up with the lovely Holly and Oli. I also managed to catch part of a workshop led by recipient donor co-ordinators which I found really interesting. It was a fascinating, emotional, of course, insight into what happens on the other side of the gift on transplant day. We had a very nice lunch, during which we were asked by 'Aunty P' to speak about our experiences as transplant recipients as part of the next session, which was in the main hall and involved everyone. This was the first time I have spoken about William's transplant journey. I followed Holly reading a very beautiful poem and Oli speaking with great confidence about his own transplant. I was very nervous and emotional and nearly got overcome a couple of times. I didn't have anything prepared and was conscious not to say the same things as I was planning to in the address that I had prepared for the service the next day. I think I managed to get our story across in a sensitive way. It is especially hard to talk to donor families as you feel conscious that your story is happy where their's ended in tragedy. It was clear that these families really wanted to hear our storied though and drew strength and encouragement from them. This is the way of the transplant community. We are one big family that are always there for each other. We are so lucky to have each other. My transplant family grew a whole lot bigger over the weekend with new friends that we are looking foreward to meeting again at the transplant games in July. Some of the donor families will be there, cheering on the participants and awarding medals.

After the recipient talks, the really moving part of the day came with families being awarded certificates and angels to commemorate their loved ones. This was done against a back drop of a slide show of photos and accompanied by music. I doubt a single adult in the room had dry eyes. After the ceremony we planted a rose. The families wrote tributes to be planted in with compost with the rose. I wrote a short and simple thank-you to our donor. William was presented with his own angel to remember his donor by. It is now hanging over a frame of photos depicting his transplant journey.

In the evening, I had the opportunity to go out for a meal with Aunty P, Holly and the Donor Family Netork Trustees but opted to stay 'home' with the children and our host family. We had another lovely evening. The children played hide and seek and bounced on the trampoline and the adults chatted some more. We had an earlier night though as adults and children alike were tired after Friday.

On Sunday, we went to church with Aunty P and then met with Holly who treated us all to a greasy cafe brunch sandwich. Thanks Holly, my shout next time! It was then time for the 'Giving for Living' Thanksgiving Service. I was giving the address so pretty nervous. The service began with welcomes and then the wife of a donor lit the Paschal (Easter) candle. Holly, Holly's parents, Hope, Ellie, William and I lit seven candles from it to represent the seven main organs given for transplant (including the small bowel) and the main candle was extinguished to represent that the donor's life is over once the organs are given. It was very moving. The lady who lit the candle gave a really interesting and moving reflection on her experiences. She described being asked about organ donation as a glimmer of hope and light on the day she lost her husband. Nothing could be done for him but this was something positive that could come out of their tragedy. I gave my address and got through it OK after a small wobble at the start, where I thought I may have got overcome, but managed to hold on and recover. William's transplant consultant was there for the service which was lovely and meant a lot to me when I was giving my talk. He said afterwards that he likes to get to it to give thanks for those children he is able to save through transplant. The service was led by the chaplain who has a special responsibility for the liver until where William had his transplant so it really was lovely to be able to share this act of thanksgiving and remembrance with these two members of our transplant team. I won't describe my address on here but I will send a copy to anyone who would like to read it. Holly followed me with a very brave and moving account of her transplant story.

After a buffet and some long goodbyes to some very special people whom we had got to go over the weekend, we were on our way home. We will certainly get to that special service as often as we can do. It is an honour to be able join with donor families in the act of thanksgiving for their loved ones.

Closing doors and looking for open windows

Wow, I hadn't realised how long it has been since I last blogged here. Is anyone still there? I really am going to get back to blogging here more regularly.

We have gone through a strange stage in our adaptation to life after William's transplant recently. For the last few weeks, we have been approaching something that resembles a 'normal family' routine. William is back at school and, at the moment at least, is really very, very well. At the beginning of June, we went to Birmingham for his scopes and biopsies due at 6 months post transplant. All seems to be going well. His stoma is a bit of a mess as it is prolapsed and coverd in sores where it takes a bashing as he runs around enjoying his new found energy. It does need to be 're-fashioned' but it is not urgent and Wills was in such a state over his 'special sleep' for the scopes that the team want him to work with a psychologist to get a bit of control over his phobia before hand. This will be a fairly major op and will necessitate a few weeks in hospital and some more painful and unpleasant experiences for him. There is also no guarentee it won't prolapse again. As William's colon was removed at transplant, his stoma is for life so this is just something we will have to learn to live with if that is the case.

The girls, William and I are really enjoying getting out and about and enjoying the summer. This is the first time we have been home for any decent time in the summer and so we have never seen Croydon in the hot sun or had the chance to enjoy trips to London and further afield. We are certainly making up for lost time. We also have plans for a trip to Mum and Dad's - the first time William has been able to stay there so that will be really special, the British Transplant Games and some 'mini breaks' to combine Gifts of Life photo shoots and seeing a bit more of the country.

Most of all this adapting to life free from the constant threat of a lengthy time living in hospital is very exciting. There are some aspects that have been hard though. The children and I have spent so long out of our social circles that, in some cases, it sometimes feels very difficult to see where we fit back in. William and I returned to our church for the first time in nearly a year yesterday and everything has moved on so far without us, and so much has happened to us and within me that I hardly felt like anyone really knew me anymore. It will take time to see where the 'new me' that has been changed so much through this journey can slot back in. On the flip side, I have so many wonderful new friends who I have met along the way who are just terrific and I love them very much. There is the journey itself too. Now we are eight months after transplant, I am now able to look back on it all and using it as inspiration for new projects. So, there are some great things and some more tricky things that we are dealing with at this phase in the journey. I guess we have reached that stage of reflection where we are processing it all and how it has changed us, mostly for the better and I certainly have that feeling that I have so much to share and to give to others as a result that it is a real need to find how I can go about doing so. A transplant in the family is a real life changing event but it isn't just the transplant itself, it is the three years previously where we spent 80% of the time in hospital. This has had a huge impact and I can't just go back to where I was before, in some cases it is impossible to, even where I would want to.

Very sadly, the main casualty of the life we have led over the last few years is my relationship with Paul. I am not going to blog about the details but for a variety of reasons, Paul has found it very difficult to fit into the family. There are, of course, other things that have happened to our relationship during these last very stressful years. This kind of journey either makes you or breaks you and, unfortunately, it broke us. It is sad as we did have something really special once upon a time in a world before our vocabulary was dominated by medical terminology and the expressions we shared became limited to anguish and stress. This next chapter of my journey with Willam, Hope and Ellie really started a long time ago . It does, inevitably, bring about some tough times but I know I can turn to friends and my wonderful parents for support. I have three wonderful children and we have lots of fun things planned for the summer. On the whole, life is very good.

Long overdue catchup!!

Sorry it has been such a long time with no catch up on here! If you have been following my Gifts of Life blog here you will know that I have been very busy with that. With catching up at work now things are more stable at home, the Gifts of Life project, getting going with my writing and making plans for the future...I have been very busy in the evening when the children have gone to bed. No excuse not to keep things updated here though and I will try harder.

William went into Birmingham Children's Hospital last week for his 6 month review endoscopes and biopsies. I was relieved to be going in as we had been having some strange, sudden high stoma gushes after feeds and we were worried he may have some problems or a bit of rejection. He was fine in himself though so we were all a bit confused. Everything looks good inside, we are still waiting for his biopsy results. His prolapsed stoma does need re-doing and it will be another fairly major operation. William was very, very traumatised by the 'special sleep' needed for his scopes so we are not rushing into this surgery. There is no need as it is all working fine. It just can't stay that way for life and he does have some nasty sores on it from where it receives trauma as he plays. We have been asked to arrange some psychological and play specialist help for William to over come his terror of surgeons and anaesthetics first. The good news for him is that, because of the trauma that everyone witnessed and because things are looking so good, we are missing the scopes and biopsies that he should have in three months time and going straight to his annual review ones in November. Hopefully, he will stay well with no major complications over the next 6 months and we will stay home. We have been home now for over 3 months - a huge record in recent years!! He really is doing better than we could have dreamed. This is one of the main reasons why I am so committed to the Gifts of Life project and raising the awareness or organ donation. I want to see more outcomes like ours.

The girls are loving the stability of us all being at home together, although they are away on holiday in Wales at the moment. William's hospital admission clashed with Mum and Dad's holiday and, with no other childcare options for the girls, they just had to go along - I'm sure you can imagine how gutted they were...not!! William should be re-starting school next week and so the children will be enjoying the end of term and we are all looking forward to an action packed summer holiday to make up for lost time.

An incredible 6 months!!

Yesterday was 6 months since William's transplant!! What an incredible 6 months it has been and what a huge difference it has made to his life and to all of us.

I have blogged on the 'Gifts of Life' blog here a lot of what I would say here, and there are some pictures too, so please do hop over and have a read.

Just to add here, thanks so much to Jessica for 'Emily' the wonderful balloon William received through Postpals yesterday, on his half transplant birthday. Perfect timing. He absolutely adores 'her' and plays with 'her' nonstop. He always loves balloons but is having even more fun with it being a little person, whom he has named Emily.

Two Huge Thank-Yous

I have lots, as ever, to tell you all but today's blog is all about thank-yous. I have two massive thank-yous. William received a special parcel today, a wonderful quilt of Thomas and his friends, characters and the ones in the real world today from Love Quilts. It is a fantastic quilt, made of cross stitched panels from all over England and from Northern Ireland, Majorca and the USA. Thank-you Katherine, Karen, Stephanie, Sandy, Jan, Jan, Gilly, Victoria, Sue, Debi and Patricia. William is a very happy little boy and I know he will love it and treasure it always. It will be a family heirloom and will be used as it is meant to be but equally well looked after and cared for.

I have another huge thank-you which I have been waiting for a good time to make. Well, we are on the subject of thanks and these thank-yous are linked too. A huge, huge thank-you to David and Jacqui. David and Jacqui are cousins of Paul and Paul once sung at David's wedding, a good few years before I met him. We received a very amusing letter about this and David wanting to return the favour but not really being a singer himself. David decided to return the favour by training for and running the Edinburgh Half Marathon on 5th April which he completed in an impressive 2 hours and 4 minutes. In doing this, he raised some money for us to help William and the family. This was a total surprise to us and we were amazed by the generosity of David's sponsors, especially the Staff at Support Services and The University of Edinburgh. Thank-you so, so much.

We have been thinking hard about how to spend the money. Now, here is where this is linked to the quilt. William's bedroom resembles a hospital room. He has a hospital cot that was to enable us to access his line easily when he was on TPN. He has no bedroom furniture but has a drip stand and a trolley to prepare intravenous medicines and his TPN and, in place of toy shelves, he has a set of drawers full of medical bits and pieces. Some of this he still needs as he has his feeds and his stoma bags and things we need to change them. Sometime over the next year, William will be having a brand new bedroom. We are having a downstairs extension as his physical limitations mean he can't go upstairs without a lot of help. Our house is due to be adapted for his needs. We still don't know if he will eventually need to use a wheelchair in the house as a lot depends on how he copes with his body as it grows. With this in mind, we are having major work to widen and move doors and open up extra ones, as well as a downstairs bedroom and wet room for William. We will have a huge job to re-floor and decorate the whole of downstairs after this (so be ready for a painting party anyone who lives near enough). We wanted to be able to make his room extra special as he has never had a little boys bedroom with medical care taking it over. With so much to do to the house, this would have been limited but we are going to spend most of the money on a really great room for Wills where his medical equipment can be hidden away and it will be a bedroom he can enjoy and play in and retreat from his sisters in. This will be something he will really enjoy as he grows up. The girls had to go into a room together when William came along and are going to have a room each again when he moves downstairs. The time I spent on all William's care meant that I have neglected their room and it has run down a fair bit (the whole house has really). So, they will each have some of the money to spend on personalising their rooms. They are really excited about it.

This will all be a fair way down the line as we are waiting for the work to be done and don't know when it will be. So, in the meantime, a little of the money will be spent on a few days by the sea - the first sea-side holiday we have had since William was born. We can only manage a few days away this year as William's care needs are still high and, as I don't drive and Paul is at Glyndebourne every single day of the summer, there is only so much feed and medicine I can carry. We will make it really special with the extra funds we can put into it and the children are really looking forward to it.

To help with this holiday and to make the best of our new lives having loads of great days out, I wanted a fold up special needs buggy for William as his electric chair and big frame buggy, although best for him for school and local trips, are very limiting on a day out. Last week, I bought one of these buggys from e-bay to put a little of the money to immediate use and we put it to the test on a day out on Saturday (blog on that to follow as this is long enough already!).

There is one last thing we will do with it (we are really making it work so I hope you will all be pleased and David will think those miles worthwhile!). While William was isolated in his cubicle for three months after transplant, the very best £20 we spent was on a cheap and cheerful freeview digibox to supplement the TV in the room and enable Wills to watch round-the-clock CBEEBIES, which was his lifeline really. We want to purchase a similarly cheap and cheerful box for the five cubicles to enable other children to be able to enjoy the same after their transplants. I will be sorting this out when William is in for his 6 month post transplant tests in a couple of weeks. It isn't a huge amount of the money but will bring a lot of joy and comfort to the children, and to the parents who sleep in there with them. Cheap boxes work well and are not too expensive to replace if they get stolen so, within reason, we will try and make sure there are always boxes in the rooms.

I really hope you are happy with our choices and will post photos when the bedrooms are done. We were totally amazed by this so thank-you so much again.

Oh, and David and Jacqui, you did include an invite to come and see you. I hope you meant that because we hope to combine a Gifts of Life photoshoot near Glasgow with taking you up on it sometime. We are really looking forward to meeting you

Hold the Front Blog Page!!!

It has been another amazing week and there is a lot to tell you about. This was going to be another newsy, catch up blog but something so exciting has just happened that all that can wait for the next few days. Such a major milestone deserves it's own 'front page!!' William has eaten a whole fromage frais this morning!! It is the first time he has done anything more than lick something. He decided he was going to do this yesterday to earn the engine Paul has waiting for him for when he eats a whole pot of fromage frais.He has known about this for ages and held the 'one day' view but, all of a sudden, he decided for himself it was time. I fed him to make it easier and he enjoyed the first half pot. It became a bit of an ordeal after that but we made it eventually.

This is great news as it has broken William's aversion to put anything into his mouth and swallow it. So, now it is a case of weaning. William needs to learn all the skills he should have learned in his late babyhood. I have told him that I will be feeding him various soft foods and purees every day from now on and will be a little forceful if necessary to get him to the stage of eating enough in the day to be able to stop his daytime gastrostomy feeds. If he eats a little something every day this week he gets a present on Friday. The next challenge will be to eat a little something at every meal time, and then he will get another pressie. After that, he will be expected to eat because he wants to and because he needs to. He just needs a little push to get started.

There is lots more news but it can all wait for a couple of days. The only other thing that I will tell you for now is that Wills is also out of nappies. He has been a total superstar over the last couple of weeks and we are so proud of him.