Being Thankful Everyday

Yes, I know, not a very original title.  I’m sure we’ve all heard it a “bazillion times” (to quote my son) and are tired of it.  But coming up on Thanksgiving tomorrow, I realized that I no longer reserve my “what I’m thankful for this year” reflection to one day.  Every day I find at least one thing I’m thankful for, no matter how small.  Sitting here this evening, putzing around on Facebook, I realized just how big those daily small things really are.

This year, I am beyond thankful for A’s progress so far.  We have struggled to get her weight up and managed to succeed. Yay! No G-tube needed!  We have fought to get her muscle mass built up, and are making amazing progress. Plus, all those trips to the playground and chasing after her on her tricycle are great for Mama too!  I never knew you could run a mile without leaving your own block!  Amazing.

A is talking in small sentences (2 to 3 words) more often than not, she is engaged in the world around her (most days), and is just an absolutely amazing little girl.  Yes, that is my parental bias speaking, but I’m sticking by it!

G is an amazing big brother and little boy.  I won’t be able to call him that much longer as he turns 7 next month and is quite insistent that he is a “big kid, not a little boy!”  Despite all, he is caring, patient, and kind to his sister.  He helps her when she struggles and is endlessly patient (for an almost 7 year old) when she falls apart and lashes out at him.  Now, I’m not saying they don’t fight.  Believe me they argue and antagonize each other on a daily basis, but there is not a deliberate maliciousness to it.  It’s more of a I-want-to-see-how-far-I-can-push-this sort of thing and they resolve it fairly quickly and usually without needing me to step in (thank goodness!).

Tomorrow, while we’re all enjoying our Thanksgiving PB&J, yogurt, graham crackers, and Pediasure….wait, sorry, that’s A’s menu.  While we’re all enjoying our Thanksgiving turkey, stuffing, cranberry sauce, assorted veggies, rolls, and pies, let’s take a minute to remember those out there that may have a harder time finding a small moment each day to be thankful for with their children with special needs.  Maybe the one’s whose progress can’t be measured yet, or who have just received a diagnosis and have no idea what their future holds or it they will be able to make it through each day.  Let’s remember that while some of us may be lucky enough to have coverage for therapies, be it Medicaid, Medicare, or private insurance, not everyone has that luxury.  Some families are left with no resources and no idea where to turn or what to do.  Let’s take a moment to remember those families too.  After all, we can’t always see the heartache and struggles people go through until we take a moment to look a little closer and open our hearts a little wider.

I hope this Thanksgiving Thursday, whether you live in the US and celebrate it or not, you find at least one reason to be thankful for what you do have and not what you wish you had.

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Celtic Thunder, Separation Anxiety, and Pasta

Yes, believe it or not, they are all connected.  In a weird, roundabout, only-in-my-universe-could-this-happen kind of way.

Last Saturday (November 3) I had the pleasure of seeing Celtic Thunder in concert.  Now, this is the sort of show you could bring children to, but not if that child happens to be A.  The first time I saw this group perform, G came with us.  He was almost 5 and these guys were and still are his idols.

Excuse me for a moment while I wipe away a tear of pride…

Okay, moving on.  Bringing him was a no brainer.  G has always been a bright, well-behaved, sweet kid who has endless patience (thank God for that), so we knew he would be able to make it through the show.  Actually, he had so much fun dancing to the music that the people around us paid more attention to him at times than the guys on the stage (and if you know about Celtic Thunder, that’s saying something!).

But I digress.  This go around, it was decided that this would be a grown-ups only outing.  Myself (obviously), my husband, and two of our best friends who are basically family.  We went to the matinee so that I wouldn’t have to rush A’s bedtime routine, which is always a catastrophic failure.  My parents (who I cannot thank enough) agreed to watch the kiddos for the day so we could have lunch then go to the show.  Sounds like a win-win right?

Well…it would have been except for one minor detail.   A was having a horrible day and I had to implement what I call the “5 foot radius rule.”  Basically, it means don’t get too close to A or she might hit, bite, punch, or otherwise attempt to injure you.  I know, it sounds horrible, but on the days when she can’t cope she lashes out.  Let’s face it, she is a communication-challenged 2 year old, what other reaction could you expect?

Still, we got through the morning, she seemed to settle so off to Omi and Poppy’s house we went.  She settled just fine, so off we went to enjoy our show.  And yes, we enjoyed it immensely and even had the pleasure of meeting several of the guys along with the creator/producer of Celtic Thunder afterward.  All in all, a wonderful “Mommy’s Day Off.”

Over the next couple of days, I noticed A was quite reluctant to let me out of her sight and even more reluctant to eat.  Wait, I may have understated that a wee bit.  It was more of a cry-hysterically-because-Mommy-left-the-room and refuse-to-eat-solids-especially-around-anyone-but-Mommy sort of thing.

On top of this, we throw feeding therapy into the mix.  Now, this is not a new thing for A.  She has been in feeding therapy for about 2 months  now and this is our second go with it (her first was at 13 months).  No surprises here.  We are starting to work with A on tolerating foods she has textural aversions to (sounds like fun doesn’t it?) and I thought pasta would be a good start.  Let’s face it, it’s cheap, higher calorie, and it’s really easy to hide veggies in the sauce.  What could be better?

Apparently, anything but pasta.  Let’s just say it’s not going so well.  I thought we were making some progress since she seemed to be tolerating utensil contact with it during therapy.  Too bad, no matter what I tried, it didn’t carry over to home meal times.  Since Wednesday, I have spent more time cleaning pasta off the table, chair, floor, sliding doors, cabinet, and anything else that was within about 3 feet of A’s chair.  And it’s not like she had a plateful to toss around!  We’re talking about 4 to 6 pieces of macaroni!  That’s talent.  On the upside, my dining room floor (thank goodness it’s a small area) was really clean by Saturday night!

How am I handling all this?  Well, after I stopped banging my head against the wall, I realized that A will adjust back and she just needs time and space.  LOTS of space.  She also needed some “Mommy time.”  So I took her to the Clearwater Marine Aquarium (I love having freebies to amazing places!) since marine life relaxes her.  Plus, she loves the movie Dolphin Tale so any chance to see Winter is “awhum” (“awesome” to the rest of us) in her book.

The upshot of all this is that I have learned some important lessons.  The main one being do not, under any circumstances, introduce (or attempt to introduce) any form of pasta to A when she is struggling with bad days.  The secondary lesson is that “Mommy’s Day Off” will trigger separation anxiety in A that will leave me absolutely exhausted afterwards but it’s absolutely worth it!  After all, no matter how hard it is to remember this sometimes, I have to remember to take care of myself too.