Friday, December 9, 2016

Oh how I wish I had known.

Last night my very handsome son was initiated into APO -- the national theatre honor society. Now let's be honest, I would be bragging like crazy no matter what. I would. It is who I am as a Mom. Sorry. But it is the end of Benjamin's THIRD semester of college and frankly, I am just so proud of all he overcomes every single day that I am bursting to tell you about APO -- and really want pictures but you know....I wasn't invited. ;)

But you wouldn't have the whole picture if I didn't tell you that just last week I read this statistic that spoke of the percentage of children with Cerebral Palsy who would walk unassisted (10%), who would walk assisted (60%), and who would roll through life in a wheelchair (30%). The graphic was from one of my favorite organizations. It was eye-catching. It was good information as far as educating people on what CP DOES and DOES NOT look like and it was applaudable for that.

But sadly, the comments broke my heart. I started responding to them one by one as a matter of fact before stopping myself and taking a deep breath (and texting Claire who knew the comments would upset me so much that she had sent me a text to avoid reading them at all costs!) before walking away from the computer and the rabbit hole I was falling down.

See, the comments were written by mothers whose precious little ones have not yet reached 19 years of age and just rolled into the last college final of the semester. The comments were from young mothers grasping and reaching and begging for someone to give them hope for their child's future and they have pinned all their hopes on whether or not sweet little will walk.

I get it. I understand it deep in my heart. I was you, young mom, not so very long ago. I sat in the playroom floor and did everything to pretend we were playing when really all we were doing was trying to sit independently (because a child that can sit independently by two will walk we were told.); trying to teach balance; and trying to coerce steps. I stood in toy store aisles looking for that magic helping toy that would push my boys to move their legs successfully. We went to weekly/sometimes daily therapy. And then surgery. And then more therapy. And all the while I kept thinking WALKING was so stinking super important. It was the goal to normal. It was the goal to being our best.

And so why would I take time to comment to each of those moms....why do I feel so passionate about telling the boys' story today??

Because hear me, hear me loud -- walking was NEVER Benjamin's goal. Never.

Can I repeat that in large letters? 

Walking was never BENJAMIN'S GOAL. Never.

When Benjamin had spine surgery at six-years-old, the surgeon asked him if he had any questions. Benjamin replied, "Will I be able to talk when you are done?"

Dr. P was clearly perplexed by the question as he looked at Benjamin and said, "Of course, I am not operating on your throat."

To which Benjamin reminded him that the previous year he had operated on his brother, Mason, and when Mason first came out of surgery his voice was very messed up. Benjamin wanted to avoid that at all costs. Dr. P assured him he would do his best.

When Benjamin first woke in recovery he tried to speak to me. His voice was raspy and he promptly threw up everywhere. The team increased his pain meds putting him back to sleep. When he woke, he tried to speak again and then started vomiting. The team again increased his meds and put him back to sleep. The third time he woke and started vomiting they moved to do the same until I stood up and said "STOP. This is not about pain. He needs to wake up enough to know he can still talk. Let's give him that chance." 

We did. He quit vomiting. 

See Benjamin was panicked that the surgery had affected his PERSONAL goal -- to talk, to speak, to act, to argue, to convince, to use his voice in every single way possible. Did I mention he was six?

College sophomores exercising their right to vote!

Yesterday, Benjamin rolled into that honor society initiation and today he rolled into his final exams. Walking is not a statistic he has ever cared about. And certainly today, he assures me that it wouldn't help him reach his dreams any faster. 

I chased him to catch a photo as he rolled into the van to go to his honor society initiation!

Oh, he admits that reaching his goals might be easier if he could walk, bathe himself, drive himself, etc. But he also admits that taking away his chair might silence the impact that his words have. And he really wants his words to be impactful.

I am going to repeat myself....I apologize for it in advance but I find in motherhood I feel the need to repeat myself often! 

Benjamin knows that his chair gives him a voice. People listen to him when he rolls into the room. He knows he makes an impact BECAUSE 
he doesn't walk.

So to the moms who are still in the throes of searching for statistics and buying toys that might help with gross motor skills and counting how many seconds your little can sit unsupported, may I hug you today? May I encourage your heart that walking is NOT the end all be all. Trust me on this.

I am not telling you to quit going to physical therapy. I am not telling you that working toward a goal of walking is a waste of time. What I am telling you is that making walking your BIGGEST goal, your largest dream, and the thing you dedicate ALL your time and energy to will short change your child.

  My boys are worth far more than the sum total of their motor skills. 

My job as mom to two boys with special needs is no different than my job as mom to two girls who don't have special needs. My job is to help them ALL explore their gifts and their talents as they flesh out their passions, and their dreams. My job is to ensure they have the tools to reach their goals -- to knock down barriers that might get in their way and to be here to hug them tight when sometimes things don't go as planned.

Lay down your own dreams, Moms. Pick up the mantle of helping your child reach the dreams that he wants to reach. I promise, you will not be sorry.

Carol - The Blessings Counter