A reminder showed up in my email today
"Your digital library book will expire in 3 days. If you purchase Curious George Goes to the Hospital from the Kindle Store or borrow it again from your local library, all of your notes and highlights will be preserved."
Its took me back to three weeks since DH downloaded this book, as we were trying to find a social story to comfort R to for hospital stay
At this point, 3 weeks ago, R had been sick on and off for almost 3 months.
Eating little, vomiting much
( And there was a time when he was at the 99th percentile on the weight chart - we used to joke if he gained one more pound- he would be the fattest kid in America )
Lots of GI visits and no answers
And R in a lot of pain.
"Mama belly hurt, hug me, rub my belly "
And DH and I, knowing the dreadful helplessness that parents of ill children know.
Finally we are at the hospital, as the only way to get some answers is to have some scopes
R is still asleep
The GI specialist has told us before that he thinks that it will take a while probably to get answers - that most likely he will have to get his lab to look at biopsies .
That most likely its a sneaky pathogen or bacterial infection- that the regular antibiotics cannot get rid of .
That we should not expect any answers today.
As we wait for the doctor to come out, I tell DH my secret wish. That R, like Curious George in the story, has eaten a puzzle piece.
Which is stuck in his tummy.
That this will be a funny story one day
But its not to be
Once again, like another day , almost exactly six years ago, DH and I are holding hands
And the doctor is telling us that "Your son has crohns"
And we are saying things like" But didn't you say that only white people get crohns?
How do we keep taking these wrong turns in life?
I cry a lot the next few days.
All the sad things that mothers of ill children think
And most of all, how could this happen to us again?
For when Autism happens , you think you are done with the difficult thing and that nothing else will happen to you
R's crohns is bad ( For Crohns like Autism is a spectrum )
But also like Autism, even though Diagnosis day feels like the worst day ever, it actually is not
Finding out is the necessary precursor to helping
(For R was very sick last year as well, but seemed to get better with just a few rounds of antibiotics -the particular antibiotics coincidentally that help Crohns
So he probably had a mild "flare" last year )
He did not grow at all last year - and people mistake him often for a 5 year old.
So finding out has probably been a good thing ( however hard its felt )
Just two weeks of starting treatment and R is a different child
He has gained weight
He is running around and jumping again
That horrible unsafe feeling- that anytime , some thing un-good can happen to you - has gone
That unsafe feeling is true.
Bad things can come out of nowhere
In the 3 weeks of the borrowing period of a library book - I have gone from being the mother of a child with Autism to being the mother of a child with Autism and Crohns
But other things are true as well
You know things you did not know
How strong you are
How weak you are
That you are lucky to be married to a a man you can laugh with.
But that you are even luckier to have married a man that you can cry with
That your mum and dad and sister feel your pain like you do.
That nurses are angels
That medicines heal
That you have many friends
That life is terrible
And life is good
I look around my new normal and think
I can do this
I am doing this
K writes at Floortime Lite Mama about love, life and autism