… are two different things.
There is an official inquiry into my daughter’s case. The decision will be taken in the next two weeks. In the meantime, I learned some other, very uncomfortable, things about funding issues that could affect a lot more children than May, but until my daughter’s case is over, I’m keeping mum.
Does that make me a coward or a good mother? A couple of weeks will pass and then I will return to fight another day. Because, if anything is a sure thing in this world, it is that I will have to fight.
I don’t like to fight. I don’t find it satisfying on any level. What I want is for people to do their job the right way, the first time, without me having to ask twice (or three or four times). But, they don’t, so there we go.
Here’s some other things I’m waiting for this week:
1. A referral by the Boss to the Developmental Vision Clinic at Great Ormond Street Hospital. A lead that came from the reader who recommended Cortical Visual Impairment. From this, I emailed the author Professor Roman, who gave me the name of a professor in Scotland, who told me about the clinic. It only took me a year! I still felt pretty triumphant.
2. A response from Tessa Jowell, MP to my letter about the restrictions placed on families when they seek a nursery for their disabled child. I wrote her three weeks ago and emailed the letter again over the weekend. But, I’m in Wales, visiting my husband’s family, so maybe there is a letter waiting at home for me now?
3. A response from Ofsted. I made a formal complaint a month ago against the nursery that refused to prioritize May. They have no record of the original letter. I had to email them a second one yesterday.
I spend less time fighting the system, and more time fighting bad filing systems.
Finally, to cheer us all up, here is a photo of my daughter playing. Cortical Visual Impairment advises parents to stimulate their child’s vision with what they can see, as they will naturally build on that and grow to see new things. This is in total contrast to other therapies, like physio, that challenge her to do what she can not.
May can see reflective shiny things, so I hung tiny disco balls from the mobile above her bed and, now, lay her down on these wonderful, silver sheets that make her squirm with delight.
Also, a photo of May eating. She is holding a spoon. It’s part of her therapy. She hasn’t graduated to using the spoon yet, but as you can see, she doesn’t seem to care.
She can eat and enjoy her food regardless.
If it’s in her sight.
And disco lights are indeed delightful.
Cross fingers for 17th June.
And in that year (this year) you learnt a lot about who May is and what she can do.
Hope others will see it too.
(And the fight extends…)
OOooo, she is So gorgeous, and scrummy. Keep up the good fight, those that persevere get there in the end. (I hope)
It’s all very tiring though isn’t it?
Lots of Love
Fran x
I just found your site, and wanted to applaud you for the way you are fighting for your daughter, and to share a little of my story. I began caring for a little one with spina bifida when she was 5 months old. At that stage, she ate and slept. We began working to teach her things – to close her hand around a toy, to respond to stimulus (very carefully, as she was very stressed with loud noises). At six months an MRI revealed that she had severe brain malformation, an encysted fourth ventricle, and brain stem atrophy. We were told ‘she has weeks, or possibly months, to live. Take her home and let her die. If she survives she will not make any progress beyond what she is doing now.’
Well, a lot of hard work and fun later, and by the time she was 5 she was talking, commando crawling, self-propelling in a wheelchair, cognitively keeping up (at a slower pace) with her peers at preschool. Such a different outcome from what had been predicted. Unfortunately the encysted fourth ventricle is now taking away abilities she fought so hard for, and she is now in palliative care. Without this problem, I know she would have continued to grow and develop.
There is such a special thrill for the parents/carers of these special children in their learning the simplest things, because we can see how much effort they put into learning, and making sense of their world. An MRI cannot determine the courage of a child, or the love and committment of a parent – and these are what makes the difference. God bless.
Amazing. An absolutely amazing and inspiring story. Thank you!
Your little May looks like she has a spirit the size of a sumo wrestler! I will most certainly keep you girls in my prayers to get a referral from the Visual Development Clinic, a response from Tessa Jowell M P, as well as a response fro Ofsted. The love you and May have for each other is one of the strongest bonds in the entire universe. We will continue to hold you up in prayer and keep our ears open for anything that might be of value to you in your battle. My love to you and Baby May.
Janmarie Filpus