Saturday, March 2, 2013

Going on


A reminder showed up in my email today 

Hi 

"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

 Why-my-baby

Where-are-you-god

Its-not-fair

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

21 comments:

Þorgerður said...

What a horrible ordeal. I send you my hugs from overseas. I am so glad he is jumping about again...kids are wonderful in that respect.i hope the worst is over and tha from now on his condition will be manageable. Again I send you many hugs. Wishing you alll the best.

Yuji said...

K, my heart goes out to you. I did not know anything about Crohn's until your post prompted me to read more. From what I've just learned (and you certainly know now), medicines and a change in diet can make a difference, and as it looks like R is improving, I hope that is true in your case.

As always, and especially so with this post, your writing is so poignant. Best to you, DH, and most especially, R.

Kim said...

Hard news to hear. I am so glad he is starting to feel better! That is wonderful.

robin said...

R has the best parents in the world! I'm glad he's feeling better!! *hug* to you and DH!

Rachel said...

I agree with Robin!

I am so very glad R has you two and I am praying for healing for him and for wisdom in every decision you need to make.

Much love to you!

Bright Side of Life said...

K, I am so saddened to read this. Life is so unfair at times. I send you and R a huge hug and please know that you are in my thoughts. xx

Laurel said...

I am so sorry to hear this news and it certainly does seem unfair. I am glad that you do know what is going on and I hope, as you say, that this will be the precursor to continued improvement in his health and growth. Your secret wish about the puzzle piece brought tears to my eyes but maybe this will turn out to be a piece of the puzzle in a different way, allowing you to help R become healthier and stronger. I hope. Or at least to avoid pain and confusion because you will know what is going on when he has a flare.

Your last post on happiness brought me good feelings at a difficult time. I left it marked unread in my feed because I wanted to come back to it and savor it and print it out and pin it up. I hope that your support network is lifting you up as you have lifted so many others up.

Kris said...

K,
I am thinking of you and R and your DH. It is so, so hard to watch your child be sick. I am glad you got some answers. Hugs to you.
Kris

Floortime Lite Mama said...

@Kris Robin Di Rachel Robin Kim Yuji Porgerour thank you so much for the good thoughts
@Laurel - so glad my last happiness post was helpful - thank you for sharing that - I really appreciate that

Barbara TherExtras said...

Without referencing your 2012 posts, relying only on my memory, I'm certain R learned last year. Just think of how much he will learn in healthier-2013!

Love.

jazzygal said...

So sorry to hear that your gorgeous R has been so ill. I didn't realise. I do hope that now they know what i wrong that his Crohns can be efectively managed.

And yes, you CAN do this :-)

((xx)) Jazzy

ZisforZen said...

K, I have been reading your blog on and off for...could it be more than a year? I enjoy your posts though I've never said hello until now. I was very saddened to hear of your son's illness. My thoughts are with you and your family.

Tanya Savko said...

My heart is with you for this difficult second diagnosis. And you amaze and inspire me with your outlook and your wisdom. Thinking of you and sending love.

Li said...

K, I'm so grieved you and your family are facing this second diagnosis. I know you will get through the with the same grace you have shown throughout your life, but it seems terribly unfair. Much love to you all.

Looking for Blue Sky said...

That was such a powerful and moving post, I was so afraid as I read it, and then I didn't know whether to be happy that he is doing so well again, or sad because he has another difficulty to live with. Wishing you all the very best xx

Jenny S-A said...

I'm so sorry to read that you had to go through all that worry before, that your son had to feel so awful an all the worry & sadness of hearing that your child has a lifelong health issue. BUT, when I was first reading this post, before you got to his diagnosis, my heart was in my throat, fearing worse. So Crohns can be manageable - it'll always be something to be vigilant about - but already, he is feeling better & still has a long & bright future ahead.
I hope your hardest days are behind.

Floortime Lite Mama said...

Thanks so much for the sympathy and empathy
@Dr Barb That is what we were thinking too - surely this will help him
Z is for zen - love the name - thanks for saying hello - do u have a blog?
Tanya - thank u xoxoxo
@Li thank u so much appreciate your kind words
@looking for blue sky - my irish friend you got my feelings exactly as that was our emotional journey
@ Jenny SA - your words on UC at my last post were a great comfort to me and you are so right - it really could be so much worse

ZisforZen said...

Hi - yes I have a blog, just haven't yet figured out how to link it to this blogger ID!

I'm at zisforzen.com

Maybe see you there ;)

ZisforZen said...

Not sure if my comment worked last time, my blog is at:
zisforzen.com
thanks for asking
;)

kyra said...

oh, floortime lite mama, beautiful one, so sorry to hear this. and yes. you are doing this. and we are blessed to read your words. and yes. life is hard. and awful.

Julie said...

I love that even in the really hard times your spirit shines like a light. That is a true gift, and I for one, appreciate that so much about you. ((HUGS))

The minutiae of a random weekend

Dear Reader  I have been absent without excuses and now I am back just plunging you back into the excruciating minutiae  of my life witho...