Saturday, March 2, 2013

Going on.

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

Frighteningly thin

 ( 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 


  1. As always... you speak straight to my heart. I am so very sorry for this diagnosis - especially as it means any kind of pain for my much-loved R.

    I knew exactly what you meant when you say you think you are done with the difficult thing and that nothing else will happen to you. I felt that way when they told me I wouldn't have children. First deaf, and now this dream too?

    But I am so very glad that he is feeling better - that a whole, whole lot of people care for him and love him. That you and DH can laugh and cry and do your very best in making decisions for your beloved boy.

    Please... do not give pause - and instead immediately text or email if you need anything!

  2. Dear K,

    I am also the mother of a child with many new diagnoses. As I read your post, I wept. Your description of the mixture of feelings a parent endures of fear and relief, anger and hope are all so familiar to me too. Thank you for expressing it so beautifully.

    Your positive spirit, your loving and supportive husband and the love you have for your family will, as before, help you to cope and find peace once again. I admire your courage.

    There are also many parents here who understand your feelings and are willing to just listen. Please know that I am one of them.

    Sending you and your family peace, strength and love. Am happy to hear that your beautiful son will receive the medical help he needs to feel better.

    p.s. you should think about publishing this beautiful writing.

  3. Lisa , Rachel
    Thank you my friends for your kind words

  4. ((K)) I know, sweetie. I know exactly what you mean. Can we hold hands?

  5. holding your hand Brenda-I am overwhelmed sometimes by all this extra stuff