Input and or advice would be appreciated

[Guest guest]

My daughter, a,  will be 10 yrs. old in April.  She was diagnosed with

MDS at the age of 16 months.  I have travelled along her medical journey from

the start on my own.  Her dad and I are now divorced.  When she went to the

geneticist for her initial testing, I went with her by myself.  When the results

came in, I had to hear the confirming news as well on my own.  Her dad and I

were still married at this point.  All the doctor visits including the

geneticist, cardiologist, psychologist, etc. have been without him.  We have

been seperated since 2008 and the divorce was final last year.  All the time he

was still at home, he never showed any interest in her doctor visits or actually

anything she was involved in.  We belong to a local DS group where we have

several social activites a year, including summer BBQs, pumpkin picks in the

fall, and a yearly holiday party.  Through the years, he has never attended one

event with us.  When

the seperation happened, he pointed at our daughter and point blank told me

that 90% of our marital issues was " because of that thing " .  ( Yes, he truly

said that ).  Recently, she has had seizures that include rolling of her eyes,

rapid heart beat, and like a swelling of the throat that when she talks it

sounds like she has a mouth full of food.  He asked my son, who is 14, how often

she has these seizures recently.  This sort of scares me.  For his lack of

interest all these years, why the sudden interest?   All I can think of is a bad

nightmare he put me through years ago.  I was working on the midnight shift at a

local convenience store and one night he was angry and upset about life in

general.  He punched the wall about 1/2 way through our conversation when I

suggested a seperation.  This was  back about 2006.  He said if I ever thought

about leaving him, I would come home one morning and him & the kids would be

gone and I would never

see them again.  In early 2007, I left my job that I had of almost 10 years to

stay home with a because twice during the night she got out of our home

and he didn't hear her.  By the Grace of God, she was not seriously hurt on

either occasion.  Of course, our financial situation took a turn for a worse. 

And about 8 months later, he told me I was self centered, non caring about the

kids, and told me how worthless & lazy I was because I had stopped working. 

Told me at that point I shouldn't have had kids.  This is why with a's

situation now, I am a little scared about his " concern " .  Is he finally come to

his senses about our daughter or is he trying to fish around for things to try

to take her away from me just to be spiteful?  Sorry for the long post &

ramblings.  Thanks in advance , however, for any input and or advice.

 

Tina