Back to school blues...
I took a little blog holiday over the summer as you can tell, mainly because having all four children at home means there are less hours in the day to indulge myself in writing than normal. Well the children have been back to school for a week now and I have taken up my usual Sunday evening position at the kitchen table, clean school uniform waiting to be taken upstairs and homework (allegedly) finished.
I think I have the back to school blues though, despite the little bit of daytime respite having the children in school gives me. Back to school means back to meetings, appointments, form filling and in a couple of weeks another hospital admission for Daisy. Back to school means back to the reality of my life, reality which was temporarily suspended over our glorious summer break.
This year our summer break truly was glorious. As you know summer holidays, in fact school holidays in general, can be a bit hit and miss depending on whether or not Daisy is in hospital. This summer was hospital free for Daisy although as two of her grandparents were taken ill we were not totally hospital free as a family.
The best thing about the summer however was London 2012 - the Olympics and Paralympics. After catching the 2012 bug at the rowing we just wanted more - Andy & Theo went to the Millennium stadium in Cardiff for the football bronze medal match, I watched the start of the Women's marathon and the TV and radio coverage was on constantly. We felt bereft when the flame was extinguished and handed over to Rio. But that sense of loss did not last for long as we had the best Paralympics ever in our home town too. Andy took Jules to the Paralympic Shooting and Archery and we took Daisy to the Olympic Park and managed to take in some Wheelchair tennis. And for Andy and I the summer's highlight was the Paralympic closing ceremony. And again when the flame was extinquished, and the stadium emptied we felt bereft. The Olympics and Paralympics had wrapped us in a cocoon all summer, it was a diversion away from the realities of our lives, in London people were happy and friendly and helpful. Taking Daisy on the train was a breeze and people opened doors for us and helped us - it was a window into a different world, where a simple train journey was not a huge event, where people smiled and welcomed Daisy rather than stared, where our quirky family did not stand out in the crowd!
Andy and I allowed ourselves to be swept along by this feel good summer and just enjoy our family - it really was a lovely time for us and I guess we appreciated it more because times like this cannot be taken for granted.
So now I have the back to school blues - already the paperwork is piling up. Forms need to be filled in to get Theo the support he needs in school, strategies and plans written to help teaching staff identify when he is not coping and how to help him before he reaches meltdown. Appointments that were put on the back burner over the past year for Daisy are now needed. She wears hearing aids normally and is classed as dual sensory impaired but her hearing aids have not been checked in two years. And we are also reopening our conversations with our medical nemesis - the genetics team.
Always we have the lingering question of why does Daisy have intestinal failure when no other child with her diagnosis has displayed such sever gastrointestinal symptoms. Why is her bladder failing? Why does she have such severe inflammation in her gastrointestinal system? In our quest to leave no stone unturned we are returning to the genetics team to see if they can help with the unanswered questions and maybe with straegies and pointers on how her care can be managed. We still wrestle with the fact that without the Costello Syndrome diagnosis Daisy would be definitely on the list for a small bowel transplant now, we have been told that many times by her team in Great Ormond Street. We also know that for many children with a Costello diagnosis tethered spinal cord is an issue which can cause irreversible bladder damage, this has never been fully investigated and a neurosurgeon appointment is on the cards in the near future.
And sadly, despite our wish and hope that Daisy would not have to undergo any more surgery this has not proven to be the case. Currently two surgeons are working out between themselves a suitable date to carry out two procedures on Daisy so that she can only be exposed to one anaesthetic. She needs surgery to her bladder to sort out the prolapsed mitrofanoff stoma and the decision has also been made to remove the last piece of her large bowel, her rectum, as it is so inflammed and causing so much pain.
So while my children adjust to new teachers, new classrooms, new timetables and moan about homework and exams and schedules, I envy them. I wish my world was that simple again. I have a recurring dream that I am walking into the exam hall in my old school without doing any preparation and not attending any lessons, I guess it's a metaphor for the lack of control that my world now has, I don't know what each day, each letter, each phone call will bring, yet I have to respond and manage the situation. The Olympics and Paralympics allowed me to put all that on hold, everyone was watching it, or on holiday, time stood still for a bit and I caught my breath. So thank you Mo Farrah, Chris Hoy, Jessica Ennis, David Weir, Ellie Simmonds et al, you made our family very happy for a few weeks, I just wish it could have gone on forever......
Oh, and by the way, my children inform me that there are only 96 days until Christmas - ho ho ho!
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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