Is it selfish to want something for myself?
An escape? Something or someone who is only for me?
Something not touched by the suffering and pain that exists inside this house?
All I can see is the future with more pain and suffering.
I remember when I used to find solace in my Husband.
He's been touched by this. He's her Father.
He can't be the one I find solace in. He can't be my confidant. I want him to be, but he feels the same as I do.
We both bring the same emotions and mind set to the table. Together it just doesn't work.
We exist in a business relationship. When we are alone together we discuss the dealings of our life.
"This is the plan for when she's gotta have the spinal surgery." "So I got the pulmo doc appointment set up for the lung, the spinal MRI is next Friday."
"Ok so I'll come and be there for the surgery and the few days after and then come back home and work, you'll bring your Mom and Aria, and stay the course while she's recovering, sounds like a good plan".
And we thought it was a good dinner together.
Because we discussed business and got it all organized.
There's nothing but business left.
Its all business because we became people invested in the business of Alexandra's survival.
We left everything else behind.
He went to work and I spent every minute devoted to her survival. Because if she didn't survive I'd be lost.
What I've realized is if we do lose her we both will have nothing left.
And as the years go by and the diagnoses pile up - it becomes more apparent that we will bury our daughter.
There will be nothing left.
I try and keep myself from the truth but this is really the truth.
He's wrapped up in his psychological pain that has developed into a physical pain and I'm wrapped up in working and going to school and managing her care.
I take pills to get through the day. He took pills but now he says nothing works. He has a perpetual migraine and I fall asleep before 10pm.
It's a cautionary tale. Parents of medically complex children - listen to me when I say - do not neglect your marriage. Remember each other.
Remember that there was the two of you before there was this endless string of surgeries and doctors appointments and meds and therapies and financial issues.
Remember why you came together enough to have that child.
Remember why. Remember the love that existed before.