The Perfect Ending

One Hundred Laps on the One Hundredth Day of School
 
Run my dear,
                 From anything
That may not strengthen
                                        Your precious budding wings.
Hafiz
 
 
It was going to be the perfect ending to Congenital Heart Awareness Week.  Kalvin’s class was running one hundred laps around their gym on the hundredth day of school. I couldn’t have written the script any better, one hundred laps for our very own one in 1 hundred and it was Valentine's Day to boot. What better way to celebrate hearts.
What better way to spread awareness.

Running one hundred laps on the hundredth day of school is an elementary school tradition in our town that goes back at least twenty years. No fundraising involved, just a pure sense of pride and accomplishment for these second graders. They start training in kindergarten and work up to one hundred times around the gym or 3.5 miles!!! What an accomplishment for any second grader, but for one with severe pulmonary stenosis and multiple CHDs, well that is just amazing. And that is what I fully intended this post to be all about. Until that wasn't the real part of the story for me anymore.


I decided that morning that I, myself, could not put off exercising one more day. If Kalvin was running 3.5 miles, than surely I could too. I headed down to the basement to run/walk my own 3.5 miles on my treadmill. A treadmill that has been collecting dust and storing toys for the last few years. But that is a story for a post all of its own.

It was an emotional workout. I tried to stay motivated by picturing Kalvin running around the gym. He had worked so hard preparing for this day. And the training had presented some challenging moments for Kalvin; including one bullying incident. I wiped away the tears as I trotted along on my treadmill thinking how hard this was going to be for Kal to accomplish. Praying it would all work out. That he would finish.  That his face would beam with pride in the end. I thought about how proud I was of Kalvin and all that he has accomplished in his eight years as I continued wiping away the tears and moving my feet.

 
I plotted in my head what I was going to say to the other mothers while we watched the kids run around the gym. One hundred times. It was the perfect way to spread CHD awareness. The perfect time to share Kalvin's story.  I was so excited to explain all about CHDs. 

I would brag about my boy who is functioning with a little more than one lung and multiple CHDs. I wouldn't even go into the facts about his one leg being shorter and having much less muscle mass than the other. No, I would just share Kalvin's heart story and let them know all the facts.  I was ready to field their questions. It would be the perfect ending.


Then, like so many times before, as I sat down to share the fun part of our day.  I was planning to write all about Kalvin's running game (as Finn calls it) until I realized that wasn't the story that was really on my mind. That was the fun part of the day, but not the part that was nagging at me.

It was suppose to be the perfect ending, the perfect way to wrap up Congenital Heart Awareness Week 2014.  Right?  I would share some facts and tell all the moms and dads about Kalvin's heart and lungs. I would share our story.  But as I stood there with the other mother's watching our children run around the gym, that old familiar feeling washed over me. That need for Kalvin blend in. For Kalvin to be known as Kalvin, and not by his CHDs.

I just couldn't get the words out of my mouth. I so wanted to share all that Kalvin has endured.  How these heart babies go through so much.  How Kalvin has been through so much.  So much more than any kid should have to go through.  And most of all,  how these babies can thrive and live a regular life. But I didn't have the courage to say it.

I wasn't sure that they would really listen.

I could picture their looks.

The fear that they would think I did something wrong to cause this to happen to my baby crept into my mind. It is still there. Even though I know, I know,  I did nothing wrong. There are no guarantees.


Even as I held his brother up to the window to peak down on the runners, and he asked me why Kalvin was so far apart from some of the other runners, all I could manage to squeak out was, "He is doing the best he can. That is all any of us can do."

Oh, I wanted to shout out, "Your brother, my son, basically ONLY has ONE lung. Do you realize what that boy has been through? What that boy goes through?"

But I could not find my voice.

And I am not completely sure why.

I wanted this post to be all about Kalvin and his amazing run, but I fear the situation I found myself in is far too common.  I fear it is one of the reasons CHD awareness is still so limited. So I wanted to share the real part of my story and see if any other heart mom's out there find themselves feeling this way?

I remember bringing Kalvin home from the hospital. The nurses and doctors encouraging us to take him home and treat him like any other normal baby. But he wasn't a normal baby. He had just had a ten hour open heart surgery sixteen days earlier. Sixteen days earlier.

You couldn't pick him up like a regular baby. He could not afford to lose any more weight or we would be back in the hospital. And he ate like a bird. A few ounces at a time was considered a good feeding.

His chest was held together with large black stiches that stretched down the entire length of his torso.

He couldn't go into public places. He couldn't be around children or anyone who might be sick.

What we had just been through was not normal. But we were told to move forward and pretend everything was normal. 

And we tried. The best that we could.  We tried.

I guess this is what I struggle with today.  We want Kalvin blend in and be a “regular” kid, because that is what he really wants.  To be accepted for who he is. To fit in.

He does not like people to know about his heart. 

He doesn’t like to be singled out because of his heart.

And he shouldn't be.  He is just a regular kid, doing regular things.

I don't ever want him to be embarrassed or ashamed of his heart. Of his situation.  To feel like an outcast.  Those are the thoughts that keeps me up at night.  That drives me to spread awareness. I want people to know about congenital heart defects so that they will understand them.  So that no baby will leave the hospital undiagnosed.

As I stood there watching the run, I could feel myself getting numb. Numb to the feelings that were beginning to creep in.  Those feelings of that scared momma in her apartment with her twenty one day old baby, pretending everything was normal.  Pretending. 

I stood there pretending this was just another regular event for a regular kid. Part of me wanted to scream.  To jump with joy. To yell from the roof top,  "Look at my boy.  He had complex open heart surgery when he was five days old.  He has little more than one functioning lung. Would you just look at him now.  Look at him now." 

I wanted to be the one waving the flags and shaking the banners right there with the gym teacher.

 
But instead I just pretended it was all regular stuff.  Pretty amazing regular stuff.


And I guess in the end, it all works out the way it was meant to.

I thought the day was going to go a different way, that I was going to be spreading awareness and yelling from the roof top as my heart baby ran 3.5 miles. 

Instead,  I experienced the best gift of all.

I was a regular momma. 

Eyes dripping with pride and joy.

Watching as her boy ran around the gym with the other kids. 

His face beaming with pride.


It really was the perfect ending.

 

5 comments:

  1. Kristen, *I* cried just reading this! I would have definitely cried watching him. Congrats to you both on this beautiful, symbolic milestone. I was touched and learned so much from the conflicting desires you shared in this post. And as a mama who hasn't been through the heavy things you and other moms have been through, I appreciate hearing your thoughts so that I can be more sensitive to other moms and children around me. Best wishes, girl!

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  2. Hi my name is Caryn Johnson and I found you on Little Miggy Stayed Home:Special Needs Spotlight. I wanted to get in touch with you because I also was born with heart defects and had VSD/Tetralogy of Fallot surgery when I was nine months old. If you want to contact me my email is maijarose09@yahoo.com or Facebook is Caryn E. Johnson/

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    Replies
    1. Hi Caryn. I will definitely be in touch. Sounds like you are doing well which makes me so happy. All the best, Kristen Xo

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  3. This is so so beautiful and so on point with my thoughts for the future for my own son For how I deal with CHD awareness ... Wanting the normalcy for my son and at the same time knowing how exceptional he is beyond the norm and wanting to share that with the world. Thank you for your blog and putting it into words I am glad that I stumbled upon it .

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  4. This is so so beautiful and so on point with my thoughts for the future for my own son For how I deal with CHD awareness ... Wanting the normalcy for my son and at the same time knowing how exceptional he is beyond the norm and wanting to share that with the world. Thank you for your blog and putting it into words I am glad that I stumbled upon it .

    ReplyDelete