How it all started
My name is Aimee. My daughter, Emily, was born with Spina Bifida and Hydrocephalus. Emily is 11 now, and just started senior school, or high school in the US. We live in southern England. I have created a blog for parents and carers to share their experiences of having a child with a disability: www.rollinwithmama.com.
I found talking to people in a similar situation to me to be very good therapy. I found that a lot of other people didn’t understand at the baby groups which I took her to, so finding charities and other children with a similar condition as Emily really made life a little less difficult.
Walking is overrated
When Emily was a baby, there was so much to learn, not only about how to change a nappy, but the complete workings of her bowel and bladder, how to give her physio on her legs. We learnt what to do in an emergency, because she has a VP shunt inserted to drain the fluid from her brain, that is Hydrocephalus. Shunt’s can be trouble, so we were given instructions on what to do if it stopped working, and it did, quite a few times.
As soon as Emily was born, I kept getting asked the same old questions. “Is she crawling, is she walking yet?” “No, no, no and …..no!” It took a long time for our relatives to get the hint. Walking is overrated anyway. My husband and I decided immediately that as long as Emily was happy and confident, then everything else was not important.
Fast forward to today
Fast forward to today, and Emily has a wonderful group of friends. She has an amazing sense of humour (no not a typo, I am English!) She is extremely confident, I think even more confident than me. She is very independent in her wheelchair. Emily plays wheelchair basketball and goes to martial arts, Choi Kwang Do.
As a family, we have a lot of hurdles, but continue to tackle whatever life throws at us, by talking, sharing and helping other families going through the same thing.