This morning I brushed my just turned five year olds hair to get her ready for school. I then tucked her in as she dresses herself but doesn’t tuck in her shirt. I also pull up her tights that bit higher to ensure that she isn’t soon waddling like a duck with tights around her knees, we are struggling to find tights that stay up!
Then we walked the seven minutes to school. It generally takes Erin longer than seven minutes and I often feel like I am dragging her along. She would prefer the car for the short journey as walking hurts her legs in the mornings. When I collect her we will walk home along the same roads. We might stop in the park for a few minutes first whilst she runs about with her friends and I chat with the other mums.
Erin will arrive home from school and probably lie on the sofa and tell me she hurts. It will probably be her tummy hurting. On bad days Erin will tell me she hurts everywhere and then she will point and run her fingers down her arms and legs just to illustrate the point to me. A warm bath may help a little. She will probably be in bed asleep by 6.30pm to be woken by me the following day at 7.30am.
Today the reception class will have visitors and the children will probably be excited to line up and be measured and weighed. Erin likes being measured, she likes to know if she has grown. She is measured and weighed rather frequently because of regular trips to the hospital and our GP. However today I refused to let Erin be measured and weighed.
The school nurses would have taken her measurements and they may have raised their eyebrows and Erin certainly would have been marked as overweight, possibly obese. The child measurement programme would have deemed it fit to tell me that my child was overweight and they may have invited me to parenting classes or such like. Yet they don’t know anything about me or Erin.
Whoever looks at that data will not know that until aged three Erin could barely walk, that she is two years behind other children in terms of mobility and that she hasn’t yet had time to catch up with herself. They would not know that she has hypermobility syndrome that can make walking difficult and slow and sometimes painful. They probably wouldn’t notice that she wears orthotics to help her find her central core and balance. That her ankles can’t always support her. They probably wouldn’t know how many times Erin has been in hospital on steroids because asthma taunts her breathing. They wouldn’t know that when she runs about she will often stop and cough and cough and cough with tears streaming down her cheeks. They wouldn’t notice the slight limp as she stood in the queue and they wouldn’t see the long scar that runs down across her hip and bikini line where the surgeons knife has been. They wouldn’t know that, would they?
They wouldn’t know that yes, she likes her food and sweets but no more than her slim brother and very slim sister. They wouldn’t have the bigger picture to see that my other two children follow the usual growth pattern and its not simply a case of piling her plate high with unsuitable food. They wouldn’t know that she swims like a mermaid and has amazing abilities in the water. They wouldn’t know that she now dances both ballet and tap on a Wednesday evening and practises by doing shows at home for us.
Instead they would see numbers on a chart. A chart that Erin has always had big numbers on. A chart that even before she was born we were exceeding hence why she was induced two weeks early due to being a big baby because of my gestational diabetes (which was just gestational and soon disappeared).
That is why Erin will not be weighed and added to the national picture. The only ones weighing her will be those consultants who know Erin and those GP’s who have the full picture of Erin and her medical notes. No one else.