The Guilt never stops.
Somedays it feels like is all consuming and other days its not to the surface but always bubbling away underneath. I cry, In the early days i cried for what he would never have and i guess i grieved. Every parent with a special needs diagnosis grieves for the dream of how we thought they would grow up and turn out.
I still cry for what he’s missing out on – sometimes its when he goes to sign to people and i realise so few people can communicate with my gorgeous monkey. He is a beautiful, happy confident and loving boy but he misses out on so much.
He’s been tested for every known cause for deafness and he doesn’t meet any of them. No one can tell me why everything else developed normally and his auditory nerves did not grow. The doctors say these would have developed at 6-10 week stage of gestation. I never drank, i never smoked, i drink decaffinated coffee, I took my vitamins, i took my folic acid. I did everything by the book – except work. I worked 14-16 hours a day – 90 plus hours a week, I travelled, i flew, i never let my body rest – I ask myself is this the reason he was born deaf? I will NEVER know the answer and it doesn’t matter what people tell us I will always blame me as he’s my son and I think its my faulty genes. Stephen always says – theres nothing you could have done but as a mum you feel responsible.
9 months he was in my womb in silence – that breaks my heart, how lonely and scared was he in the dark. They say its easy to get a baby to sleep in a car as the sound of the engine is like the sound of a mothers heart beat. Theo has never heard this and i feel sad when i think of this or someone says aw i bet he will sleep in the car on the way home.
We have submitted our bloods for Geonome Testing in the Geonomes 100000 project but have been told this will take 5-6 years to get anything back and even then it might not ever tell us. I no longer have the same need to find out but I would like to know for the boys future if it was a gene mutation or just one of those things.
I feel guilt for taking my family to Italy for a surgery that didn’t work, i feel guilty because so may people raised funds for a surgery that didn’t work.
I feel guilty that Theo has had 2 lots of brain surgery – choices i’ve made for him. He’s been through so much in such a short space of time.
I feel guilty for not signing early enough – will he ever be age appropriate?.
I feel guilty for all that Harry has seen and witnessed at such a young age.
Through the last 2 years i’ve realised that i have 2 choices 1) i can be over protective and wrap him in cotton wool or 2) I can pave the way for Theo and help him make his own mark on the world.
I’ve chosen 2
One day the guilt might lessen. The lesson i’ve learnt is don’t let guilt eat you up. Show your baby the best of you.