All that has happened over the last couple of weeks are now sinking in. Paul and I went out for a meal together yesterday to chat things through and discuss what now needs planning. It was nice to relax together over a bottle of wine too. I think I needed it as I slept soundly (depsite wanting to catch some of the olympic marathon) and felt really sleepy all day.
Today, I began to think of the practicalities of William being live on the transplant list in 12 days time. Today, was a day of lists. Lists of things to pack in the bag, lists of who to ask if they are willing to be called at 2am to get the girls if necessary, lists of who could be asked to pick them up from school at a moments notice if necessary, lists of phone numbers and addresses to tell when we get the call.... This afternoon, I popped to John Lewis and good old M and S for some button up PJs for Wills to wear when he is still attached to lots of drips and drains and some cheap and cheeful soft shorts and big and baggy T-shirts - all 3 sizes above his current size to allow for him growing on the list and for his sore and swollen tummy. These will all be packed in the 'transplant bag' along with some clothes for me, a few things for William to do while waiting to go to theatre, a good read and some knitting for me. The last two weeks showed me that a good quality light read and a knitting project with nice soft wool are the best ways for me to relax during stressful times in hospital. There are plenty of shops a short walk from the hospital - we have already noted the bookshops, nice sandwich shops, coffee shops, a fantastic sweet shop where you can buy all your childhood favourites and Hotel Chocolate!
I am now working my way through all the literature again to remind myself of everything, especially the waiting period - I'm sure I will then write another list! All my lists are in my new mini filofax that, along side my phone, will never leave my side.
To me, this all feels a lot like being pregnant again. At the moment, I am thinking about it nearly all the time, searching for every bit of info (including finding myself scouring the shelves in the bookshop, just in cast there should be a title on seeing your family through your child's transplant) and wanting to prepare for it all. I can imagine, the next weeks and months will proceed very much like a pregnancy with the transplant taking a spot at the back of my mind but always being there in my active thoughts, just as I found my baby was throughout all my pregnancies. The anticipated end is not at all unlike pregnancy too - a new life. That's what it will be for William and for us all. I can't help myself daydreaming about picnics and parties with William running around free of lines and eating, staying with Mum and Dad with the whole family, camping holidays, long days out with no rush home for TPN, visiting friends without having to leave after a few hours to get home in time to get TPN from the fridge. Best of all is the thought of being at home with the girls and being a proper family together rather then being seperated while we are hospital all the time. Of course, being able to live without the fear of losing Wills to these horrible line infections!
2 comments:
Hi Sarah, I know I haven't commented for a while but I do think of you all a lot and I'm so pleased (if thats the right word) to hear that William has been offered the chance of a transplant. I will be thinking of you all so much over the coming weeks and months. It must be a huge amount to take in right now but you are an amazing Mum to an amazing family so I'm sure you will get through it all ok. If we can do anything our end to help, please just let us know. I believe you are already in touch with Cat from Transplant Kids who is the best person of all to understand and help support you. Take care and lots of love, Emmie xxxxx
Hi I just thought I'd sy hello and that I will be thinking of you through the wait for the transplant. I hope that it is not too long a wait for you. I'm sure though like a pregnancy it will seem like forever and no time at all both at the same time.
Good luck for the 'new life' post transplant. My Aunty had a liver transplant about 12 years ago and now has a lovely 3 year old daughter.
Post a Comment