Friday, October 29, 2010

Quick Fix

Ok, I confess, I'm too tired from our week's "vacation" in the hospital and the subsequent dysregulation and lack of sleep that the change back to home has wrought for my boy.  He's on the mend now and, truly, I thought I would have the mental wherewithal to write something meaningful and inspiring between our return home on Tuesday night and my deadline for today.


The stress of the hospital, the round the clock breathing treatments, the meds, the unceasing parade of people —doctors, nurses, therapists, nursing students, medical students, social workers, child life specialists—has all taken its toll on my boy's already finely balanced state. (Seriously, the only person we didn't see was the hospital chaplain!)  He can't sleep unless I'm with him, he can't play unless I'm with him.  I can't go to the bathroom...well, you get the idea.

I have lots of wonderful things to share from our experience; really, I do.  It will just have to keep though.  In the meantime, here's the beginning of the story (as told on my blog):


Things have been kind of quiet on my blog lately, I know.  Let me assure you, that's far from the case in our offline life! There are probably a dozen or more half-composed posts in my head and a smattering more in my drafts; life has been moving too fast for me to collect my thoughts, my words and my energy at the same time to bring everyone up to speed.

Suffice to say, school is not great but it's not entirely awful, either; it's just not a good fit.  Everyone recognizes it and we're working to remedy the situation as soon as possible.  Meanwhile, there are sensory and behavioral ramifications to the poor fit— all of which have kept Niksfamily hopping.

We're still fighting too many sleepless nights and dysregulated days, wondering about possible metabolic causes and going through multiple rounds of blood-letting blood tests.  Toss into the mix a bout of bronchitis and an ear infection which have just cropped up and, well, yeah. Exactly.

Somehow, though, if I look closely enough, I can see the glimmers of progress amidst the chaos of dysregulation and I am left stunned, speechless and in complete awe of my child.


Yesterday, the worst of the illness was taking hold and my little one was a mess.  His fever spiked to 103F as he sat on the sofa, restless and uncomfortable.

Nik:   Fix, Mama. Fix.
Me:   Fix what, baby?  Your toy? (Nik always brings his broken toys or the ones which need new batteries to me and I tell him"Mama will fix it, sweetie.")
Nik:   (Vigorous head shaking to indicate no.)
Me:   Your music? Do you want Mama to sing for you, lovey?
Nik:   (More vigorous head shaking accompanied by pathetic whining and tears now) Fix, Mama.
Me:  Oh, baby, I wish I knew what you need me to fix. I want to fix it, I do.
Nik:  Fix.  Fix.  Fix (reaching near-hysteria and beginning some mild self-harm)

I gathered my boy onto my lap, cradling his hot little head in the crook of my neck so he wouldn't see  my tears of frustration.  His speech device tumbled onto the sofa next to him.  He squirmed in my arms; I thought he was just trying to get comfortable.  He leaned over and dragged his talker onto his slender legs.

Fix. Ear. Fix, Mama. Doctor.

Words I had begun to think I might never hear.  I'm not sure, but I think my heart filled to overflowing before it shattered.


  1. [Trying Mom-NOS's trick of posting a comment so I can get them all via email.]

  2. darling
    how i hope he is better soon and you can all get some rest
    I loved this post so much

  3. There are always amazing moments even in the most difficult of times, or maybe because of them. Glad you are all at home now.

  4. Oh, how amazing it is to have a way to communicate even if it is through a speech device. It's something we don't take for granted at all. I sure hope he feels better soon and you all get some sleep.

  5. I can only imagine how draining a hospital visit like that must be. So glad you are all home.

  6. OMG, sweet baby. I am SO GLAD he could tell you, and I weep for all the little ones who cannot. Sending you love and prayer and wishing you ease and rest.