In honor of Wobbly Wednesday, I am very pleased that Laura has offered to share her and her son Samuel’s story of congenital nystagmus. – Ann
From Samuel’s very first check up at the doctors at 8 weeks I knew something wasn’t right. Even though he said everything was fine I couldn’t settle. I asked for a second opinion and was referred to the local screening clinic. It took around 6 months from then to finally get a diagnosis.
Samuel never tracked objects, he never acknowledged you when I entered the room, never made eye contact while feeding and those precious first smiles took a long long time to come. He still couldn’t sit up very well at 12 months and has only just started to properly crawl at around 20 months. We cannot wait for him to start walking. But when he does it will be such a special and emotional time.
After attending every baby group I was left wondering why Samuel was so behind all the other babies and felt I always had to make excuses for him. I am sad to say it affected the bond between us I spent all my time worrying about him worrying what was wrong. Looking back I regret this and I wish I cherished every moment.
After many appointments Samuel was finally diagnosed with Nystagmus. Nystagmus is a eye condition which means the eyes constantly and involuntary move. After reading the little information online it took me a while to come to terms with the fact my beautiful little boy is likely to grow up partially sighted. It did explain why things happened a lot later as his vision has taken a lot longer to develop.
Now I realised just how amazing Samuel is he went through a lot of his short life with not seeing very much. His vision is improving and he is developing into such a cheeky chappy. What I would like to tell people is to not get to hung up on the milestones. Don’t worry what other babies are doing and try not to compare. Don’t be afraid to ask for a second opinion if you are not happy with what your doctor has to say. You are the parent and going off your instinct is so important.
We have seen eye specialists, neurologists, paediatricians, ears nose and throat specialists, physiotherapists, visual team and probably some that I have forgotten and that is all before he is even 2 years old. The services we have received have been fantastic and Samuel is even more amazing then I can put into words and everything he has over come just proves what a trooper he is.
We attend the eye hospital every 3 months and they have been so good with him. They can’t tell us much at the moment we won’t know what his vision will be like until he is 6 years old. I am ready to face any hurdles as they come. I will do all that I can to help Samuel develop into a happy and confident child and young man. I’ve promised myself that I won’t project my fears and concerns on him instead guide and encourage him the best I can!