From bad to worse


This week I can say that I have pushed beyond new levels of crazy. It is finally dawning on me that my son has a disability and he will not be able to live the life I have dreamed of, For example day care, school, birthday parties, football games etc.  I think I have taken it particularly hard as it was by careful planning we tried to have a baby that does not have my husband’s recessive eyesight disease.  Perhaps in the manipulation of the cells and all the drugs I went through for IVF, some genes were messed up and couldn’t quite form properly?

We have not been given a diagnosis yet as our full genetic sequencing will take 6 months plus to complete. Basically my son has hypotonia in his arms and he doesn’t reach for things.  This stops him reaching his other milestones.  He also has Laryngomalacia and Hypospadias but these things won’t stop him achieving his potential.  As I have not received any genetic proof I am constantly hitting up google as to what genetic syndrome he could have.

One syndrome leads to another and before I know it I have been up all night reading totally unrelated syndromes.   This turns into a vicious cycle of being tired during the day, not sleeping at night, doom and gloom about the future and not enjoying ‘the now’.

The doctors have no idea either. We are constantly going for new appointments that we are not sure why.  For example last week we went for an hour-long hearing test, where the LO had to fall asleep whilst they measured how his ears were working.  As expected, his hearing was perfect.

Last week at the Early Intervention assessment, we asked what they think our son has? the psychologist and Doctor both looked at each other and awkwardly said a beautiful happy and satisfied baby.  I cried some more and they wrote in the report summary that the dad was positive and happy whether the mother was going through her mourning period.

I have since found out that a ‘mourning period’ is where you cry for all the hopes and dreams you had for your child. I’ve been mourning for 8 months now I’m wondering when I’ll stop?!!

I keep telling myself to get a grip, thousands of kids are born with syndromes each day and their parents just get on with it.  1 in 150 kids gets autism. (1 in 68 in America!)  Now I wonder what I could handle, knowing your child has a syndrome from birth,  discovering after a year of testing, or finding out they have autism at 2 years old.  (when most get diagnosed).

Maybe it’s the label I’m afraid of. Will I be labelled with;

“She’s the one with the “insert syndrome” kid. Or,

He’s not quite right in the head etc..  or,

Oh that couple with the baby with “insert syndrome”.

Maybe it’s the fact that my family live on the other side of the world and they can’t just pop over to help.  Or the fact they won’t acknowledge there is anything wrong with him because he looks fine on Skype.

Why am I asking all these morbid things? I would normally just suck this up and then fight as hard as I can for my child.   However, What could be the worst case scenario for a women with post natal depression and a husband  and child with a disability… I’m pregnant again.  How the hell that happened with the one or two times we’ve shagged since having the baby, I’m flabbergasted and super angry with myself for being so dumb.  I immediately fell into another hole at the thought of what could happen.

My husband is a dominant carrier of the condition he has. There is a 50% chance that he will pass it on to the baby.  I will only find out if the baby has it after CVS sampling at 14 weeks.  By that stage it is too late for a D&C in Holland and I have to terminate by having the baby.  I have been unlucky 3 times before.  Now we have an unknown genetic condition thrown into the mix and possibility one of us is a dominant carrier of this gene.   Therefore at 14 weeks there is a 25% chance that I could have the baby.  Therefore I made it clear to my husband I wasn’t going to wait for 14 weeks to find out.

Naturally he put up huge fuss as he knows it’s my last chance to have a child and he ignorantly believes there is nothing wrong with our son until he is told by a doctor. I told him my fears and I have reluctantly agreed to wait until Friday next week.  By this stage I will have seen a therapist and we would have spoken to our paediatrician about it.


5 thoughts on “From bad to worse

  1. Oh my goodness, what you are going through, and I’m sure pregnancy hormones aren’t helping either 😦 Wish I had words to make it better. At least it sounds like your son is happy and not in discomfort. I hope you can find a way to just live in the “now” for a bit each day and enjoy him without worrying for a time about what the future holds.

    Liked by 1 person

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