Going, Going, GONE!

Yep, it’s officially gone.  That slamming sound you just heard was my sanity, or what was left of it.  The past month has been a mixed bag of extreme highs and lows.  Just when we thought A seemed to be going up, something would knock her down…like food poisoning.

Wait, what’s that?  How does a child who barely eats anything wind up with food poisoning?  What could possibly be the cause?

Since you asked, it appears that it was mandarin oranges.  While eating out with a friend, A ate some mandarin oranges from the restaurant and a couple hours later was very sick.  But wait, how did we narrow it down to the oranges?  Easy, she refuses to touch them now.  Of the three, yes 3, things she ate that night, that’s the only one she hasn’t touched since.  Process of elimination?  Yes, please!

On a major downside though, we learned the beginning of this week that A has not gained weight in the past 4 months, in fact, she has lost some.  While for some of us that would be cause for celebration, for A it is not so great. (Have I mentioned I am a master of understatement?)

It may not seem like much but that combined with her growth rate dropping has her pediatrician and the rest of us a bit (there I go again – understating things) concerned.

Right now it would be so easy for people to point fingers and blame us as parents.  “Why didn’t you just make her eat?”  “Stop catering to your child and she’ll get better.”  “She’s just spoiled.”

Kind of makes you want to slap someone silly, doesn’t it?

Thankfully, no one has said anything like that to us, but we tend not to share too much with those outside our family and close friends (said the lady with the blog…).

Needless to say, in addition to the therapy that A already has, we are now adding back a few more.  We are revisiting our old friends feeding and occupational therapy and adding in a new friend, the dietician.  Sounds exciting right?  I know I have said this before but we are so blessed and lucky to live in a city that has an amazing children’s hospital that has a wonderful, no beyond wonderful outpatient therapy program.  The folks that work  there are some of the most wonderful (I need a to find a thesaurus and get a new adjective), kind, and helpful people you could ever hope to come in contact with when dealing with a child with special needs.  In all honesty, they make everything, from scheduling to paperwork, seem rather effortless and the therapists are just simply fantastic.

But enough of my rambling.  It’s a bad habit I have when I want to avoid, or at least try to avoid, things.  Ranks right up there with cleaning and other strange coping mechanisms I have developed over the years.

The worst part of all of this for me personally is that I thought I was finally coming to acceptance with A’s sensory integration issues.  I thought she was making progress and I was excited for her check-up because I expected to see some weight gain.  She has made amazing progress this past year and has fought for every little bit she has gained and we have all been there pulling for her.  Right now though, this almost feels like being pushed back to square one and I don’t like it.  It feels like someone knocked me down, took the wind out of my sails, hit me upside the head, insert the metaphor of your choice here.

I read once that coming to grips with having a child with special needs is like going through the grief cycle.  You start with denial and go through the anger, sadness, more anger, guilt, more sadness, maybe a bit more anger mixed with guilt mixed with sadness, and then you finally hit acceptance.  Right now I feel like I’m back at the anger/guilt/sadness stage.  I keep wondering if I could have done more, if I did enough.  Even when I know I’ve been doing all that I could and then some, it still hurts.

I look at my beautiful (yes, I’m prejudiced) little girl and I see a smart, sweet, happy little girl who is having to struggle to keep up because she can’t get enough calories in to support muscle growth.  Or who struggles with speech because the motor planning skill is rather elusive for her.  Or who wants so badly to follow her brother down the slide at the playground but she is terrified to go alone because she struggles to hold herself upright while sliding and the motion completely knocks her balance for a loop unless someone is holding her when she slides.  And that is if she can manage the steps to get to the slide.  But even with all that, she is still just so happy and so loving, especially towards her brother whether he likes it or not!

Deep down, in a small, dark corner somewhere I know that she will be okay and that as hard as it seems right now, she will get better.  All the same, I don’t think I’m ready to go back to acceptance just yet.  I’m still too angry that she has to struggle like this, I think the good Lord understands so it’s okay.

In the mean time, we’ll just crack open some more Pediasure, find something to toast (just ’cause the kids love to toast), and keep having as much fun as we can.  After all, if you can’t laugh in adversity, what’s the point?

 

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