Category Archives: Nick

Glass Half-Full

Truly I am not a Pollyanna.  I don’t go around wearing rose-colored glasses and looking at a pile of excrement as anything other than a pile of excrement.

That being said…

I choose to look at my life as a glass half-full rather than half-empty.  Please don’t say it.  I know it is a cliché.  But there is sooooo much more to my life than the difficulties involved with having a handicapped son…or disabled child…or special needs boy…whatever the latest terminology is.

And maybe I am being just a bit simplistic, but the truth is this is my life.  And, like it or lump it, it is mine. It is mine to struggle against…or embrace.  It is mine when things are going great…and it is most definitely mine at 2am in the ER with my beautiful boy struggling to breath, or fighting mad because he is in pain and he just doesn’t know how to tell me exactly what is going on inside of him except to say–perfectly clear, mind you–THIS IS BULLSHIT! My thoughts exactly Nikopop…My thoughts exactly.

Thankfully, we have very few ER visits these days.  But, the truth is that ER visits in our household are like visits from that one person in our lives we all have…that one who shows up unannounced when the house is a wreck, and you are exhausted…the one you can’t break away from no matter how hard you try.  He or She will come over…we just don’t know when…and it is always at the worst possible time.

My life is full of…surprises.  The biggest surprise was Matthew.  We weren’t trying for our first-born.  He just happened. And as I have said before, thank God.  He has been a joy.  And then came Nick.  Who we tried for.  The child I prayed for.  And he has been a joy as well.  Through all of the tears I have shed for that boy…he has brought me infinite joy.

I probably will never fully understand the WHY behind my Nick.  But occasionally, I am witness to miracles that I would never have seen if I hadn’t been blessed with him.  And maybe I look for miracles where others would see nothing.  If so…I would much rather live my life this way than constantly seeing the negative side of things.

Most of the miracles I witness involve the development of my youngest and oldest sons into amazing men.  While the oldest is approaching twenty-one years of age, the youngest is only almost seven.  I know he is still a little boy, yet he amazes me with the way he loves his brother.  Maybe they would both be awesome young men without ever having met Nick…and then maybe they wouldn’t.

Tonight, I saw the simplest little thing.  And I almost cried.  Nick and Isaac had been sharing a bag of Cheetos (Nick’s favorite) and their mouths were covered  with cheese dust.  Isaac ran out of the room and ran back in with a wipe.  And then I watched my little boy carefully and lovingly wipe Nick’s mouth off.  He did it without thinking…without being asked to do so.  Honestly I have never asked him to wipe off Nick’s face. He just did it all on his own.  And I was truly amazed.  And thankful.  And realizing how blessed I am.

Now I know I am not alone in this…I know there are many other mothers and fathers out there of special needs children…parents who can see the joy in their lives…even in the midst of their darkest days.  I just wish others could see this as well, and not pity me or canonize me…just realize that I am a mother of three awesome young men, by the grace of God alone.

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A Different Life

When I read the prompt from Mama Kat–“What one thing would you change about your life?”, the first thing that came to mind (of course) would be Nick’s brain.  I would love to be able to wave a magic wand and have those gaps filled in.  Wouldn’t I?

I mean…to never know what it felt like to have a doctor tell me that my infant son has this rare crazy diagnosis—Partial Agenesis of the Corpus Callosum?  To never hear those words-“severe brain damage”?  To never have a smug doctor, when I asked him what this means, respond “You are an intelligent woman.  You know what this means.”

If this had happened now, I may have slapped him.

To never have all these questions immediately come to mind–would he be able to have a semi-normal life?  Would he be able to play like other kids?  Would he be able to have a family of his own someday?  Would he even know that he has a disability?

Would it have been nice to have given birth to a “healthy” baby?  To never have known the world of neurologists, behavior therapists, occupational therapists, physical therapists, IEP’s,  cranioplasty bands, AFO’s, surgeries, nephrologists, gastroenterologists,  etc.?

Would it be amazing not to have stares from people ad nauseum?

Would it have been wonderful to never have to tell either the older or the younger son “we can’t do that because Nick can’t deal with the heat/lines/crowds/etc.”?

Would it have been a much easier life to just pick up and go to a baseball game and not look like we had 10 kids with us due to all the stuff we absolutely had to take?

Would I have been happier if I never had to deal with special education–which, for the uninformed–rarely feels special?

Would I have loved to be able to get anyone, perhaps even one of my sisters to watch Nick overnight so my husband and I could actually have just one night to ourselves?

The honest answer is of course.

But…and there is always a but…what would I lose by gaining all of this freedom?

I would lose my Nick.  At least the Nick I know and love with all of my heart and soul.   The Nick I know is assured of his place in heaven.   This is the Nick we were given, and we believe that he was designed.  I may not understand the design at times, but I believe that he was created and we were chosen to care for this incredible boy.

I would also miss out on seeing some pretty incredible things.

Just last night, the youngest said to me, “Mom, I wish Nick was able to do everything.”  He said he felt bad because Nick couldn’t do all the things he could do.  He is six and he not only realizes that Nick needs extra help, he is constantly trying to help him.  And that is a level of empathy and compassion that eludes a lot of adults.

My eldest is fiercely protective of Nick.  And I believe that is just how he is.  But I do wonder if he would have been nearly as awesome a young man had he not seen first hand the struggles and triumphs his brother goes through on a daily basis.  Would he have been as willing to defend others had he not had Nick in his life?

The truth is I will never know.

And what about me?  The first time Nick said “ma” I cried tears of joy.  When Matt said it?  Of course I was excited.  But I didn’t realize the true miracle of speech until Nick uttered that tiny word.

The same is true for every other milestone Nick reached.  I realized that I was witnessing a miracle for every accomplishment, no matter how small it would seem to the outside world.  And that is something I will never take for granted again.

On top of how having Nick (with his wonderful brain) in our family has affected us individually, it has affected our friends and family as well.  People in our circle don’t use the phrase “retard” or “retarded” flippantly.  They understand what that word really means now.

We have also seen who people truly are because of Nick.  You can’t hide who you are from him.  And we have seen both our share of gems and people whose hearts have to be made of ice.

So…yes…I would love to “fix” Nicholas.  But what if upon fixing him we all are so different I wouldn’t recognize or even like who we became?  Yep…this life seems tough at times.  But I love my family and wouldn’t trade this life for anything.

Corny, but true.

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Filed under Family, Nick, Uncategorized, Writer's Workshop

Just Can’t Say No….

So, here’s the deal.  I know I am supposed to tell my son “No” periodically.  I realize that I am setting myself and him up for failure for saying yes after just a few of those looks. Not to mention after just a couple of please Mommy’s. But almost since we were told of his diagnosis, I have wanted to make his life easier.  I want to do everything in my power to make him a little bit happier.

So, giving in to him has become like crack to me.  I just can’t say no.  Not to Nick.  Ask the little one…Isaac…and he will tell you that my favorite word is no, and that I hate to say yes.  Unless it is Nick.

I think the problem is that when he was little we were told he might never walk, and he might never talk.  The doctors just told us to be thankful for whatever he could do, because anything was just about a miracle, given what his brain looks like.  (To put it bluntly, a fellow parent , when given this diagnosis, was told her son’s brain looks like swiss cheese.)

So, every time Nick did anything we cheered.  The entire family.  Literally….it got to the point that every time Nick moved a muscle, he would turn around and anxiously await the standing ovation.

Through the years, Nick’s possibilities seem to diminish.  I know that he will never have a family of his own, or drive a car, or even live on his own.  He will always need someone on this earth to watch over him.  So, if he wants candy for breakfast–yes. Popsicle before dinner?  Absolutely!

The only thing I really deny him are things that I know will truly be detrimental to him.  And this has been especially hard with his whole gluten-intolerant thing.   So, he doesn’t get cookies, or doughnuts(his favorite!), and he can’t have milk because dairy has also become an issue.

So, maybe I say yes to him when I would say no to the older or younger son.  But, seriously, how can I say no to him when his life has so few yeses?

Plus, how can I possibly deny this face?

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Filed under Family, Kids, Nick