Thursday, October 23, 2014

High Five for Counting!

Once upon a time when Mason set up this little blog for me (way back in 2008), I made the mistake of labeling posts with the child's name that the post was about. Oh for the love of mercy, would you believe these children keep tabs on who has the most. Try as I might to convince them sheer numbers aren't always a good thing -- I blog a lot when one of them has surgery for instance -- they still insist. So knowing that I am totally skewing the number for Benjamin this week, I must share another email about that dear boy (Sorry Mason and Claire!)

Botox (Botulin Toxin) is used in children with Cerebral Palsy as a non-surgical means to fight the spasticity of their muscles. Benjamin and Mason have had Botox in their legs, arms and hands all in an effort to remove the tightness of those areas. Often, children are sedated for Botox injections but my boys have never been sedated for those. As a matter of fact:

June 22, 2001 -- "Benjamin flinched when the first needle went in, telling the doctor to hurry and get it out; flinched less for the second and then told the doctor, 'Thank you. Now, let's go, Mommy!' when the procedure was over. He is an amazing kid."

Benjamin was four years old and these injections were in his hands.

"Benjamin told Dr. Nash, 'I need botox so I can say give me five.' We won't know if it has any effect for a few days to a couple of weeks and even then therapy is key -- so please keep praying! It's the little things -- and this kid wants to be able to say 'give me five' and turn his hand, palm up!"

Often we have to do things -- Botox, surgery, therapies -- for reasons that are not motivational for Benjamin at all. But this day -- this day in 2001, enduring the big needle for the Botox injection was well worth it to my son. Why? Because telling a friend he did a good job, giving him a high five, is something this child felt -- and feels -- passionate about.

I don't know about you, but I am pretty sure Benjamin has a good handle on counting what counts.

Carol - The Blessings Counter

Wednesday, October 22, 2014

Using Exclamation Points for What Really Counts.

Hindsight offers wisdom, insight and sadly, judgement. I read today's email with a lump in my throat, and a knot in my stomach. 

August 13, 2000 -- "Benjamin had his casts removed Wednesday. The doctor has placed him in a brace that will hold his legs in basically the same position the casts did while allowing him to move, and walk! Hopefully, this will help even further the development of that left hip! Please keep praying! He is a trooper and still insists he thinks the brace is cool! He had done a little walking since the cast removal but seems to really hit a wall quickly. Please pray that he will regain his strength and desire to walk soon!!"

Benjamin in his little brace, reading with Mommy, Claire and Mason.

If exclamation points are what we are counting, I tally no less than six in this one paragraph written to my friend begging for prayer support for Benjamin. And let's be honest, I am begging for prayers that he will walk.

Perhaps, I sound like a broken record by now. Perhaps you are absolutely exhausted with my repetitive posts about walking. But please, dear ones, know that I WAS in fact writing about that in a lot of my emails. I was in fact praying about that a lot in my prayer time. I was in fact worrying, hoping and thinking about that most of every single waking moment.

Because remember, my lopsided paradigms thought walking equalled wholeness. If he walks then he is...dare I say it?....normal.

Thank goodness for a young man who is not limited by lopsided paradigms. Thank goodness that I am capable of learning from him. And thank goodness that I laid down that close-minded thinking before he started kindergarten -- allowing him to roll right into that school and shine!

Because his ability to shine is what really deserves no less than six exclamation points -- it is what really and truly counts!

Carol - The Blessings Counter

Tuesday, October 21, 2014

Kindness definitely counts.

Day 21 of my writing challenge and I fear I am boring you to tears with my recounting of stories from emails written to my dear dear friend -- a wise friend who printed them out and mailed them to me years after they were written. But even as I fretted this morning about this, I realized that my writing is such an active way for me to process feelings, emotions and to give weight to the things that deserve weight...that I must continue learning to count what really counts regardless.

July 2000 -- "Arthur the aardvark made an appearance at the Rochester Public Library. Because of Benjamin's surgery, Wade was home so we decided the Arthur appearance would be a great outing for us. With B's leg casts, it took great effort to make it to the library auditorium. As we were leaving I saw a 'No Strollers Allowed' sign at the door. I thought this would be a great time to check on the rules and so asked the librarian if they ever made exceptions. I explained about my children and told her I would have to use the double stroller if my husband was not along to help. My exact question was 'Do you ever make exceptions to this or do we have to stay away from these events?'  She did not hesitate before replying that my family 'should just stay away.' I was mortified and stared at her open-mouthed before simply walking away."

I am furious just typing this. I had completely forgotten this interaction -- and perhaps that was for the best -- and even wondered recently why the triplets and I had not spent more time at the public library when they were preschoolers. Ah, yes, now I remember.

Parenting children with special needs offers many challenges that I often outline here. There is grief in watching your child struggle. There is grief in knowing your child faces surgeries, therapies and medical crises for life.

There is grief.

But there is also joy. 

But hear me when I say loudly that dealing with ignorance offers no joy. None. Zippo. Nada.

I was exhausted from Benjamin's surgery this day in the library. Instead of standing up to this crazy woman and stomping my feet, I let her crush my spirit and I walked away. And we did not return.

It was not the first or last time that a lack of education about Cerebral Palsy would upset my emotional apple cart.

We have had people tell us they couldn't spend time around the boys. It was too hard.

We have had people block the boys' view of a myriad of events -- swim meets, parades, ball games -- with no remorse. (And even some smack talk at the swim meet!)

We have had police officers park in the one accessible parking space preventing us from getting into the  trio's preschool.

We have had mothers allow their children to stare open-mouthed at us while the mom says "Oh how awful" within our hearing.

We have had mothers scream at their children NOT to stare at us -- again within our hearing. (Of course one such mother also screamed at her child when asked what happened to the boys, that "THEY ARE BLIND. TURN THIS WAY!").

We have been excluded from parties, from group dinners, and even from scouting groups.

We have faced ignorance in its ugliest forms.

But -- and this is important:

We have had preschoolers ask for walkers from Santa so they could be like the boys.

We have had teachers re-arrange classrooms to more-fully include Benjamin and Mason.

We have had little girls ask their daddies to build a ramp to third-floor apartments so that the boys could play! (That didn't happen...but she asked and that is enough.)

We have had friends move to parts of the country we have never even visited buy houses that accommodate Benjamin and his chair because they want us to be able to get in if we ever are blessed to make it there.

We have had friends build ramps and move furniture so that our family can gather at their dinner table.

We have had theater directors incorporate ramps into the set design so that Benjamin can get on and off the stage safely.

We have had strangers work to lift the 300 lb. wheelchair and Benjamin out of potholes in New York City.

We have had strangers lift the 300 lb. wheelchair and Benjamin onto hayride wagons.

We have had strangers gather around and hold onto the wheelchair as Benjamin travels down a wet slick ramp at our beloved Mississippi State football stadium to prevent him from sliding.

We have had strangers part the waters at the same stadium to allow Benjamin front-row access to the end zone.

We have had strangers stop, drop and search in the dark for the joystick that drives Benjamin's wheelchair when it fell off leaving the football stadium.

Oh, we have faced the pain of ignorance, but we have far more often felt the joy of kindness. And kindness is what really counts.

Carol - The Blessings Counter