February is Heart Month
The year Sullivan started kindergarten, I was already losing sleep by February. September may seem like a long way off to some of you, but it wasn’t for me. For me, it was the cause of sleepless nights. No, that sounds too cliche and too easy. I had broken down and cried in paralyzing fear and anxiety, really having no idea how to do this - how to let my son with half a heart go to school. It wasn’t because he's my baby, it wasn’t because I'm a helicopter mom, it wasn’t even a concern that our district might cut corners on his special education services. I knew they would not. My fear was because I don't want my son to die.
That may sound like I'm being dramatic. If it does, you don't live where we live.
And that was my fear. Sullivan is adorable. He's a bright, brilliant, happy, rugged, healthy-looking little boy. I wasn’t afraid that they wouldn’t love him. I knew they would. They already DID. I was afraid they wouldn’t take his condition seriously.
I was afraid they’d miss something, they wouldn’t call me when he said he didn’t feel well. They wouldn’t give him water at recess, because they're “going inside in 15 minutes.” Thirsty Sullivan couldn’t wait 15 minutes. Not because he was spoiled, but because dehydration for him is a matter of hours, rather than days. If he feels hunger, his body is already breaking down muscle, even if he ate a few hours ago. He needs more calories to simply not lose weight. He needed to have his oxygen checked. He needs to be able to sit and rest. He may have needed to be reminded to sit and rest. I afraid he would get dehydrated and go into heart failure. I was afraid he’d complain of tummy pain and they wouldn’t realize that it could be his liver, being slowly damaged by his odd blood flow. I was afraid they would miss something and he would die.
Everyone at school knew Sullivan.
I would pick the kids up every day and while we’d wait, he would run around the front of the school, play knock knock on the principal's office window with her (unless her shades were down, that's how she would tell him she's got serious stuff going on and then he wouldn’t knock).
They would see him being adorable and running around the school. They already loved him. But they had to understand. They would ask me how he was doing and I reply, "he's very stable." They’d smile and sigh a sigh of relief. But they didn’t understand. I had to make them understand that "stable" can turn on a dime. Sullivan's life depends on my ability to MAKE them understand.
I had to crush their souls a little bit.
It is always a cascading impact of understanding. They listen, starting with smiles, because he's adorable. Then they get that look of sincerity, really listening. They nod, and lines form between their eyebrows. And then..then, they start to get it, their chests sink, their shoulders slump. They look at me wanting it to be ok, pleading with their eyes. I can't make it ok, it is what it is, but I can tell when they get it, their faces look like I feel.
And it sucks.
I met with the principal of the elementary school one day in early February of that year, and the district specialist in charge of transitioning kids in special education to kindergarten. Sullivan received early education services under "other health impairment," which is often used for ADHD, but also for physical health impairments like hypoplastic left heart syndrome, or HLHS. The specialist knew nothing about Sullivan's actual health impairment, and as I voiced my concerns, I saw that cascade of understanding and my heart broke for them as I watched their reactions.
I crushed their souls a little bit.
But they got it. The principal said it was about realizing that if they don't take him seriously, they could "cause his death."
I looked at her and said, "yes. That's it exactly."
She got it. I *may* have seen tears in her eyes. There were tears in my own.
As hard as this journey is, I am thankful for our tribe. We have a strong, growing support network. Four years ago, I was on the floor sobbing worried about Sullivan starting school. When I pulled myself off the ground, I remembered that I don't have to do this alone. I reached out to Sullivan's early education teacher, I called upon my network of fierce and amazing heart Moms and Dads, I reached out to local family support organizations in our district, and four years ago, with a list of ideas, I met with the principal. Because of the amazing tribe we have, I felt confident that Sullivan would have all he needed to be, not only successful, but to also safe at school. We had a lot to figure out, but it no longer filled me with dread.
If you're reading this, thank you for being part of our tribe. Share Sullivan's story, spread awareness of CHD, save a life.
I had no idea what the next few years would bring - an illness that was a major threat to our tiny warrior, school from home for two full years for our kids, and moving to a new district, having to start all over. What I’ve learned is that, if I take the time to ask for help, to reach out my hand, to call in reinforcements, we can find solutions to any problem. Educators are a rare breed, once they understand, they’ve got this. The good folks at the school, they're gonna get it, I'm gonna crush their souls a little bit, but they are gonna get it every time, and they've got Sullivan. God's got Sullivan. Our entire medical team has got Sullivan. And he’s got us.
I still frequently need to do some deep breathing, and maybe some yoga. I still lift praises to God for the amazing friends, healers, and science He has placed in our lives – and for Sullivan being alive and surviving this far. I still cuddle that little boy every chance I get because every second counts.
