Tuesday, February 23, 2010

A Year Home Together

Wills has been home after transplant for a year now! It's been a year since we've had any of those terrifying days, juggling a blue and gasping child, a phone call to 999, another to a friend to arrange for the girls to be picked up immediately and another to Mum asking her to get in the car and get the girls from whoever was holding them for me. It's been a year since we've had to step over the sets of bags in the hall, ready for any emergency - and one packed for transplant. Strangely, the post-it note, holding the check list of all the things that had be taken to the hospital, fell off the front door last week. I gave it one last glance and threw it away. We've had a few close calls over the year, two in recent weeks, but we've (so far) managed to cope at home when Wills has been ill with the inevitable colds and bugs that can be so dangerous for a child whose immune system is suppressed by drugs to prevent their body from rejecting their transplanted organ

So, one year on, where are we all? Wills is thriving. The main focus of care and therapy is his physical disabilities and Asperger's Syndrome at the moment. From time to time, I do get nervous. I wonder when the bubble will burst because it will. One day, we'll wake up to a major post transplant complication that will send us tumbling back, hopefully temporarily, to the world of Hickman lines, TPN and long term hospitalisation. It could be rejection or a big infection or even a (treatable) type of cancer that is quite common in transplant recipients. Even after a year of relative stability, it's hard not to go into a tailspin at the first symptom of something. During the last week of term, William's school bus escort arrived at the door telling me to bring a buggy up because Wills was asleep and they couldn't wake him. My mind was immediately transported to those 999 days. He was poorly but only really like any 5 year old can be and nothing that a dose of Calpol and a few cuddles couldn't sort.

You don't snap out of what's gone before overnight. We've just had a fantastic half-term break - the best we've ever had. We went out as a family several times and had lots of fun and laughs. Hope, Ellie and I went out together on a day Paul had William. We ate out several times and were all very relaxed with each other and with life in general. I think it's taken us a year to reach that state. It's taken that long for our minds to settle from living on the knife edge when life and death emergencies could happen suddenly, without warning at any moment, and so often did. That, coupled with the gradual decline in William's overall health was difficult for us all to live with. I've said it before and I'll say it again and again - William's wonderful donor and her brave family did so much more for us than save his life, they saved our family. They saved us all really.

The girls are settled at school and we're all looking towards their futures and what they will be. Hope takes her GCSE options this year. Her interests are in subjects like geography and history and we've been wondering what she'll do with her life. Following the earthquake and the writing I've been doing about the Haiti Hospital Appeal she's now decided to look towards a career in third world development. That will be a stark contrast to Ellie's dreams of becoming a fashion designer. We made a pact to support each other in all we want to be and help each other realise our ambitions - including mine. It's what we'd be doing anyway but we made an extra special promise to each other. The Milne girls, all three of us, mean business.

I'm still at the stage of rebuilding my career. There are still a lot of bits and pieces that need to be bought together to form a clear plan. Right now, I feel my career needs some strategic thought, planning and self-imposed deadlines etc. I need to be more business like about things. To have a 'mission statement' and make decisions on what I do and don't do based upon that, as well as helping to pay the mortgage and feed my children of course! The first step in 'branding myself' I guess is that I've revamped my website to give it more focus and will put clippings to my work on there as and when I can.

I was going to talk about the whole love and dating issue here too. In fact, that is what this blog was going to be about. There's no new big news, I'm still very much single! It was just going to be some musings about how it works, (or rather doesn't) when you're working at home, doing something as isolating as writing and have three children, including one with complex needs, to look after, not to mention approaching a delicate age!! How does one find that special person again? Sometimes I wonder if I really want to. Some days I feel really lonely and want someone who is there for me, that special person you tell as soon as something big happens in your life. Other times, I think I'm best off on my own and don't need or want a man in my life again. I'm certainly more creative and productive when single. For now, it's family first and career second. My next blog will be about existing in the social world again after so long away from the 'real world' existing in hospitals. I'm sure I'll touch on love and the dating game....

1 comment:

loulou said...

Hun this was a really moving read and made me really think about the transitions that you're all experiencing as as family. When all the snapshots of the journey are put together you just have to stand back and say 'wow!' Love the 're-vamp' 're-brand' website and blogpage. Va Va Voom!! xxx