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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12 Comments

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

12 responses to “A Different Life

  1. You made me teary lol, I’ve had ALL those thoughts, every single solitary one of them. Especially the part about finding ANYONE willing to watch your boy overnight. It’s been almost 13 years since the hubby and I have spent a night alone. Takes it’s toll doesn’t it, you’re right though, how much would you have missed? How else would you be able to impress people by being able to use words like endocrinology in a sentence properly without having been to medical school! Great post Leslie!

  2. I love your post! Although I can not say or even imagine what it is like in your shoes, I am in awe of your courage. Keep up the good work!

    • Like a good friend of mine has been saying for years, “God doesn’t always call the equipped, but He always equips the called.” I am by no means courageous. I stumble more times than not…but He always finds a way to pick me up again:)
      Thank you for stopping by:-)

  3. I do not know what it’s like to walk in your shoes, but your post made my heart ache. You are truly blessed parents, with equally blessed kids.

  4. What a powerful post– well written and deeply touching! I have teary eyes and goosebumps! You touch on some really profound levels of understanding here about what change really would mean if we could actually go back and make something different. I love your perspective. Thank you for not only a great read, but some things to think about. Stopping by from Mama Kat’s and your comments on my blog. I look forward to reading more of your blog!

  5. OMG this was such an inspirational post…I don’t always read the entire post, sometimes my mind wanders…but I was riveted to yours. You are a gifted writer, and your son, all of them, are gifts. I agree, if Nick had been born differently, your family would be different, but in what way? I was…am touched…truly…

  6. I’ve sat here for 5 minutes trying to come up with appropriate words for a comment on this post. Something well written and flowery to convey properly convey my feelings for you. All I can come up with is one simple sentence.

    You are absolutely amazing.

  7. Wow- what a way of looking at things. It is easy to see how life would be easier for Nick, but more difficult to know the change in the surrounding people. Great perspective…

  8. WOW! Thank YOU for this post. My how hearing someone else’s story puts things into perspective. I cannot even begin to comprehend all that you have been through but I do see God’s Grace and his blessings on your family. I also see the life lessons that you have learned and how Nick makes those who choose to be good students, better people. Now following you!

  9. My how reading someone else’s story puts things into perspective. Thank you so much for this post. It is amazing how God’s Grace just comes in the midst of what society sees as a “problem”. I am so humbled to hear how you have persevered!

  10. I am the mom of a boy who has agenesis of the corpus callosum. His name is Matthew and he is 16 years old. He was diagnosed with ACC when he was four months old. The past few days or so I have also been thinking about this very topic in my own situation with my son (and have thought about it many times in the past as well). Then I stumbled upon your blog but definitely not by accident because I believe those moments are carefully orchestrated and perfectly placed in our path at just the right moment in time…and I am so very glad to have had the pleasure of finding and reading your blog about Being Nick’s Mom.

    My own thoughts just the other day were that yes I would want to make it possible for Matthew to not have ACC and to be able to do all of the things that I dreamed he would do when he was born….then I immediately thought….but who would he be if he didn’t have it?

    Thank you for sharing your post and your perspective.

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