This week has been a battle of an entirely different sort. I am used to battling the system, fighting to get my children the services they need, coping with the demands of autism, living with the uncertainty of neurofibromatosis, sleepless nights and fussy eating; those are just the norm here. But this week brought an entirely new challenge: a very sick child.
For five days and five nights I battled to keep my six-year old’s temperature at bay. I battled to get her to keep down fluids and to stay out of hospital. I would have given anything to see her flap, repeat phrases from the TV or line her toys up. I held her, I willed her to get through it, I begged her to drink. And when she dropped off to sleep I cried.
Everything just stopped.
Time stood still.
I was so thankful that the Easter spring break had just finished and Naomi’s twin brother was able to go back to school. Naomi needed all of me and she needed me day and night.
I carried her twice to the doctors. She just kept getting worse. My poor little baby is now on her third set of antibiotics in three weeks. This time it is a longer course and we seem to have finally brought her temperature down.
The diagnosis is atypical chest infection which has built up immunity to the common antibiotics. Her body is weak.
Meantime as life seemed to carry on in slow motion everything is ‘on hold’. A recent meeting in her school highlighted the fact she doesn’t drink and barely eats in school at all. Now because she has been so poorly all her targets have been adapted and strategies will be put in place on her return to try to help her regain her physical strength. The fight for her health is far from over even when her medication is finally completed.
This is when it really hits you.
Having a child with such restricted food and drink intake is serious.
So many people see autism as a minor developmental condition. But for many, like my daughter, it can lead to quite serious health conditions. Autism did not give her a chest infection but her limited diet, constant anxiety and lack of nutrition has weakened her immune system and made her susceptible to infection.
And until she is well again life is on hold.
She is only able to drink one drink right now. And now is not the time to even think about meddling with that. Physio is on hold, her education is on hold, home visits are on hold and so are all her brother’s appointments too. Time is standing still.
And when it starts to move again everything will be different. We will be playing catch up for a long time to come.
But at least I can hopefully be mummy again rather than nurse. I can’t wait to see her playing like this again. It is so hard to believe this was only 9 days ago!