The Truth Hurts

You know the saying, “if you don’t have something nice to say, don’t say anything at all?” Today I’m wishing the parents at the pool would have taught that gem to their children.

I’m nervous in new places with Cooper – the stares, questions, comments. Due to his rare disease, my sweet, funny, sporty 9-year-old has many skeletal deformities and is only 38” tall (among other issues). Today I figured I’d get in trouble with the lifeguards for letting what looks like my toddler play in the deep in the end of the pool without a parent in arm’s reach. But instead it was a comment Cooper overheard from a child that ended the pool day.

Cooper came hobbling from the pool with his imperfect gait, grabbed his towel and curled up on a lounge chair to cry. He didn’t want to tell me what happened. I assumed it had to do with a pool noodle and his big sister. Cooper mentioned something about “everyone was bullying him”. I initially dismissed it. “Oh, buddy, I’m sure no one meant to hurt your feelings”. He said that what he had heard was so terrible, he didn’t want to repeat it to me. Somehow I got it out of him. He had heard, “He’d be a better swimmer if his chest wasn’t that way”.

I don’t disagree – he’d be a better swimmer if his chest, ribs and spine weren’t deformed. He’d be a better swimmer if his arms didn’t have a limited range of motion. He’d be a better swimmer if he were the size and shape of a typical 9 year old.

But those words hurt. They hurt so bad Cooper declared he didn’t want to be in public anymore.

He recovered. He chatted and snacked and laughed with our friends who were at the pool with us. As we left I noticed two boys staring at Cooper as we walked out. I perked up and said “Hi guys! Have a great day!” I was hoping it would be enough of a distraction, but also an example – let’s use words to be kind.

Are you ready for more truth that hurts? Cooper needs surgery again this summer. Spinal decompression and fusion, this time in the thoracic spine. (For those counting, that’s surgery #6). The good news is that recovery for this is one of the “easiest” ones yet! 5 days in the hospital (AI Dupont in Wilmington, Delaware), no brace, no cast, probably no physical therapy. He’ll be up and running again in a month. But this truth is so hurtful that we aren’t telling Cooper until mid-July. Please be mindful of this in your interactions with us! We want him to be happy, carefree and have fun this first part of summer break – not to be anxious and sad.

So today’s story gets better. We went to watch Cooper’s friend play baseball, and ran into more of Cooper’s friends and stayed to watch them play too! Watching Cooper be surrounded by the kids he knows and loves – that’s what we needed to end the day. One of Cooper’s friend’s grandfathers approached and wanted to tell me how he loves how Cooper gives his ALL in everything he does. True, this man had seen Cooper play basketball and not clean his room…. But yes, this kid has a heart a million times the size of a typical 9 year old.

So we need to protect his heart. We’ll tell him about surgery when the time is right. Until then, we make plans in stealth mode. Flight to Philly, 2 weeks in a hotel, rental car, hopefully time with friends and family the weekend before surgery. I pray for peace for his heart (and ours) as we navigate these decisions. I pray for smooth surgery and recovery. I pray for smooth travel. We’ve “been there, done that” with this trip, so we know the hotel, the road to and from Wilmington and the shady spots at the Wilmington Blue Rocks baseball games. If you are motivated to help our travel, we could use Hilton points or Southwest miles. But really all we need is support. Lift up our little guy. In prayer. In spirit. Good vibes. Be an example of kindness to and for people who are different.

I suppose Cooper may find this blog some day. Cooper, everything we do for you is out of love. I think you see it that way anyway.