Sorry it has been so long since I last put anything on here but I have been busy learning to walk! I decided I was a bit tired of always being the one crawling around when my friends could all walk. I love walking. I am still a bit wobbly but I am getting more confident every day.
Before the Summer my Mummy and her friend Louise had a clothes swap party and people were so kind and generous. Lots of shops in Mold gave things for a raffle and he has asked me if she can write it here and I thought I would let her.
Thank you to everyone who helps me and also who give money to help other children like me. The charity Moebius Research Trust now have over £50,000 raised and only need another £50,000 before they can hopefully start research and trying to find some answers.
Big hugs
Isaac.
Before the clothes swap event I sat down and thought about how it felt when Isaac was born and wrote the following. I was unable to explain properly on the evening as I was quite emotional having just met two parents of people with moebius for the very first time. I hope this gives you a little more insight.
I remember the first time he smiled at me, a big toothless grin followed by a chuckle. I was so surprised I nearly dropped him! He has lying on my knees whilst I did some work on the computer. I was so surprised I rang his daddy and told him. It was a moment I will always treasure.
I don’t have that memory with Isaac, only with his older brother. The memories I have from Isaac’s first months are filled with fear and worry. I remember like it was yesterday how we were woken every hour so they could stick a needle into his foot to measure his glucose levels and battle to give him a feed. I remember the terror of waiting for his genetic test results and the relief when they were negative. Most of all though I remember the day we were told we would never see him smile. The day we were introduced to Moebius Syndrome.
I can try and replace these memories with the first time he laughed, a strange animal type sound that made me wonder what he was doing, or the day he climbed up a step and I cried my eyes out with relief as this had been a long time coming. No matter how hard I try though the other memories overtake them and I wish they were different.
Jealousy is a terrible thing and I admit I am soooo filled with envy when I see friend’s babies smile at them or screw their faces up in delight at some wondrous experience. I want to tell them to treasure every smile and not take it for granted but they would not understand. You don’t miss something you have always had.
Isaac has his little smile of course. One side of his mouth curves up ever so slightly and a little dimple appears. I love that smile and as he gets older we can see it more. Every now and again his eyes have that naughty twinkle about them. Usually when he is about to take a plate from the cupboard and he is waiting for my stern ‘No’. His mouth twitches and he reaches for it anyway. These tiny expressions have to be carefully looked for and are never taken for granted. They are cherished and put away, carefully preserved to be brought out when we have a bad day.
A bad day with his big brother is usually a whining day. Constant moaning from the moment he wakes due to some unknown dream that has put him in a bad mood. A bad day with Isaac nearly always involves a third party. A ‘specialist’ (which does not really exist with this condition) saying something without thinking – too many examples to write here. With a syndrome as rare as this (only 200 people are thought to have the condition in the UK) the learning curve is slow. It took months before we realised that Isaac could not squint and that the sun hurt his eyes, and no one ever told us he might have problems with eating – it took several choking episodes and a frantic call to emergency services before we learned that one. Thankfully we have spoken to other parents now via the Moebius Research Trust Forum and their experiences have helped enormously. As has knowing we are not alone with this condition.
Isaac is two now and whilst he is not walking very well on his own yet he loves his special walking frame. He can run, stand up straight and look at things his friends can see. His favourite game is trying to walk down steps – not a good idea with a four wheeled walking aid behind you! He cannot say many words but he recently said ‘night night’ at bedtime so we look forward to more words following. We have tried to teach him some signs and his favourite is ‘food’. He signs it so often I am not sure if he wants food or is just delighted at being able to communicate. He will get very large indeed if I feed him each time he signs it!
We have moved on in so many ways from a year ago but the constant uncertainty is always with us. So few children have this condition it is hard to know what the ‘normal’ is and as such we just have to wait. His peers are certainly ahead of him but we have been told by other parents he will catch up. We have to hope that is true and try not to worry about the future. Not easy for any parent.
Thank you for taking the time to visit Isaac's blog.
Isaac's Mummy
