I’m sitting here beside a sleeping girl, preparing to spend a night on a camp bed.
It’s my fault this surgery.Pearl drools massively and has already tried out a 98% effective tube tie.She was of course the two percent.
Pearl doesn’t have difficulty safely managing her saliva. She doesn’t get chest infections and aspirate her secretions, but she does drool.
Continuously and obviously.she drools Soaking her bibs and clothes rotting through dress fronts and causing other children to shrink away and pull faces.Her lips crack and her face gets sore.
So I told the Surgeon to do everything,all the excisions, extra ties everything do it!!
It would be finally and completely dealt with.
It is the one surgery that I have felt guilty about, because it seems cosmetic.
Drooling does not bother Pearl.In her world where she is self assured and loved and properly aware of her own worth she doesn’t care.
So I made the decision to cut and tie,and channel out and stitch and now she is lying beside me with two drains in her neck utterly exhausted.
I think of all the other Special parents who do this too.
Surgeries, electives, emergencies, sitting calmly by beds watching other parents come in who are terrified of their baby having an anaesthetic for a hernia Do they too feel for the ‘typicals ‘?
I find I want to comfort them at the same time as wanting to shake them and shout “it’s only a hernia and then you get to go home with a normal baby”
It’s not a competition this feeling of pain and trauma,of course their pain is just as real and terrifying as mine.But still.
I sit here,chatting with the staff,explaining Pearl’s problems to them for the millionth time.I intersperse this with careful explanations to Pearl checking she has understood.I’m so calm so professional.
Yesterday I tidied the entire house in the morning and have exercised so much in the last few days that I am quite exhausted.
Yesterday afternoon I was entirely unable to concentrate on anything and had to crash on the sofa watching trash.
But still sat here,writing I look like a woman who is coping. And I am.
The desire to run screaming through the hospital is uncomfortably close.
The temptation to creep away and let someone, anyone, cope with making these decisions and dealing daily with the emotional fallout of all it. It’s there.And it’s real.
And so I send good thoughts and hugs and tears and virtual chocolate to everyone of you who sit calmly beside a child hoping that you have made, are making, will make the right decision.
Because you are.You have.And you will.
Nobody said it was easy. Nobody said it could be so hard,
I believe somebody sang that once.
This my friends is what love looks like.
A special shout out to the man who supported me in this decision and struggled with it having to be done because his fathers eye sees only perfection in his small girl.You are an awesome Dad.