When we were first told of Harry’s diagnosis and the likely prognosis that goes with it I was devastated. However we were given some optimistic hope along the way – which usually slapped me in the face and left me a mess on the floor. These were things such as being told by the neurologist when Harry was only a few months old that there was a decent chance that he would grow out of his seizures in the first three to six months of his life. When Harry was three months old I attended his EEG completely expecting to be told by the neurologist that the seizures had improved or were gone completely – this was not the case. Again at six months I had convinced myself that Harry would be declared seizure free (especially since we had not witnessed any physical seizure symptoms). It turned out that Harry had a huge amount of abnormal brain activity going on in the background, and the medication he was on was preventing him from having actual seizures. Instead of being told that Harry was “better” I was told that he would be diagnosed as having epilepsy and we would be need to change his medicine to a “long-term” medicine.
It may not seem like much, but again I was devastated. I sat in the car park and cried for about 20 minutes before driving away from the hospital. Upon leaving the car park, my parking ticket would not work – I spoke to the car park attendant and he informed me that there is a specified time allowed between paying for parking and exiting the car park – 20 minutes.
A few months later, once we had a better understanding of the fact that Harry would have physical difficulties due to having left hemiplegia, we had the great idea of enrolling Harry in a toddler “learn a second language school”. We thought if he will be restricted physically then we will do our best to make sure he has lots of other options available. At that time we did not realise that Harry wouldn’t be able to speak…
Harry had some eating and drooling issues so was seeing a speech therapist through a Cerebral Palsy provider service. One day I asked about Harry’s speech, as I had noticed he was behind in speech development, having only one sound “dadadadadada”, while other kids his age had 25+ words. The speech therapist informed me that kids with CP often don’t speak until they are 5 or even 11 years old, or sometimes speech doesn’t develop at all. Once again, devastated. Why had no one ever told me this before?
So… in getting to the point of my story, I have learnt over time not to get my hopes up when it comes to Harry. That is not to say I don’t have hopes and dreams, I do. I put in 100% to help him achieve and develop the best way he can, however the goals I set are small, and when he achieves them I am over the moon and beyond words with joy. Somewhere along the way I stopped over-thinking about the future, and started living day to day. All I care about is what Harry can do today, and what we have planned for tomorrow.
Harry has been attending regular physiotherapy sessions since he was six months old. For the past YEAR , the focus of physio has been on standing and walking. Two months ago, Harry started to walk. Initially it was one step, then three, then six, and now he can walk across a room. He is wobbly and he falls a lot, but he is up and he is doing it!
I didn’t realise until I actually saw him walk, that I never honestly believed that he would ever walk by himself.