I have just looked at my stats and I haven’t posted since July. I have been too busy making myself crazy with a possible diagnosis for my son. My son is 8 months old and has developmental delays but the doctors are not sure why. When you are left alone with Dr Google and constantly carting your child to hospital tests and the physio and speech therapists.. You start to analyse every little thing your child does and before long you lose sleep and lose the ability to rationally think and finally you lose your mind.
When I was waiting for the results for the MRI, I convinced myself my son has Chiari malformation. Surely he was exhibiting all the symptoms? The MRI came back clear, no brain damage. Last month I was convinced he had a 22q deletion resulting in Digeorges syndrome. I compared facial features of children with Digeorges and my son and convinced myself that his curly toes and low set ears were obvious. We made a panicked phone call to the paediatrician asking why she hadn’t tested for this. She said it was the first thing they tested for, and he doesn’t have it.
Currently we are waiting for final genetic tests to see if he has a rare syndrome. Over 80% of them are already ruled out by initial tests but with a full genetic panel of both parents and baby maybe they will find some deletions here and there? Or does he have Cerebral palsy? Lyme disease?
Or maybe he has nothing wrong with him at all.
Last night friends were over with their son. They said, ‘my child had the same thing as a baby, he was slow and needed endless tests but now at age 9 he is only a year behind at school but he is otherwise fine’. I looked at Edward as he gazed absentmindedly off in the distance before giving my cat a creepy stare. It didn’t reassure me!
When faced with the possibility of a disability you start asking yourself hard questions.. Would you prefer a physical disability and no intellectual disability? what if both happen? what is the prognosis? Will my child ever walk or talk? have friends? a job? If I want another child will my next child get it too?
Needless to say I have now admitted I have lost control. I asked the doctor for a referral to a therapist and she said to call around because it will be hard to find one that speaks English here. Oh the joys of living in a small village in Holland and your family living on the other side of the world! The Dutch culture is extremely direct (sorry ‘authentic’) and I’m curious to how a therapy session will play out here.
I’m hoping the session contains a few laughs due to literal translation of words. My husband always tells me to use my ‘fantasy’ about things. He means ‘imagination’ but I never correct him because it sounds so funny. Once a doctor described my ovaries as ‘moisty.’ I don’t know why I burst out laughing and I made him feel embarrassed, oops. ‘Crowdy’ is another one I hear a lot. You don’t want to go to a beach/festival etc and it is too crowdy with people. I have used my fantasy and digressed. What I’m trying to say is sometimes a small laugh here and there brings light relief to a difficult situation like a therapy session.
We are enjoying an Indian summer here in Europe. This week it will be in the 30’s and I am determined to enjoy it. I will stay off Google at 3am and I will enjoy the moments swimming and playing with my little boy.