Today was Mother's Day in the UK. Did any of us think when we became mother's that the journey would take us to where we are now? I never in a million years imagined that I would be sat, as I am now, in a tiny single bedroom in the heart of London, writing about my sick child, lying in a cot in one of the world's best children's hospitals next door....
I also never thought that I would have to find the time to attend meetings to discuss my eldest son and the impact his high funcionting autism is having on our lives and his life...
Do any of us really know what life has in store for us? Out of everyone in my life I though my dad would live for ever, not cruelly snatched away by cancer at 61. I thought I would be still building my marketing career, Andy probably thought he would still be an actor... If anything, life with Daisy has taught us that you have to accept what you have, live for the moment and go with the flow. As I look around I wonder what is the perfect life, the perfect family? It strikes me that no-one has this rose-tinted existence, each person I come across has issues, problems, battles.... so while I enjoyed Mother's day today with one child still in hospital, one very stressed because she is in hospital, one about to hit adolescence and wanting her mum to be around more and one who is growing up far too quickly, I realised that I can crave the ideal family or embrace what I have - and for the record I love every dysfunctional bit of my family, in my eyes - gene mutations, hormones, autism - everything - they are perfect because they are individual and special and reflect Andy and I. Anyone who knows us well know that life was never going to follow a conventional path so I guess the adage "you are only given what you can handle" must hold true for us - although there are moments when I do think, OK, give us a break....
Which, inevitably brings me on to our wonderful youngest child, Daisy. Tomorrow we enter week 7 of our current stay at Great Ormond Street, and where are we? - well since I last updated we have had an multi-disciplinary meeting, and I had the honour of being invited in for the last 30 minutes of it (the first 30 minutes were for health professionals only to discuss my child). The agreement was that colectomy was deemed too risky but a surgical jejenostomy, although it would probably result in a step backward initially, would be OK. It was also agreed that an MRI to rule out malignancy was a priority. After much negotiating by the gastro team the MRI (under general anaesthetic)will happen tomorrow, although we still do not have a date for the surgical jejenostomy...
Of course, true to form, and probably knowing how important this MRI is tomorrow, Daisy has decided to spike a temperature and have problems with fluid balance and fast heart rate...the anaesthetist is going to love her! I just hope it doesn't get cancelled, we need to know where this pain is coming from. She has been on 24 hour TPN for over 5 weeks and a ketamine infusion for the same length of time. This is no way to live. Everything has to be focused on getting her home, but getting her home in a way that Andy and I can manage her. We are hoping when she eventually does get the surgical jejenostomy we can get a good pain management regimen in place and go home via our wonderful hospice at Chase. It is so long, once again, that we have been a family together, at least time at Chase will allow us time to adjust and be together before we go home. In the meantime, I just need to focus on getting through tomorrow, I don't want the MRI to show anything nasty but at the same time we need to know why she is in such pain and why it is so localised and of course ontop of that I just hope she isn't brewing anything nasty which is going to affect whether she will even be anaesthetised..
Hey ho - life goes on, I will take it each day at a time, so in the meantime - Happy Mother's day xxx
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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