To the People Who Watch Our Special Needs Family From the Sidelines

Last week, I picked my son up from preschool and lingered on the playground for a bit, just watching him play. I watched the kids swirl around him in dizzying circles, up and over the playground structure, around the sandbox, running with effortless ease. Laughing and calling to one another in high-pitched toddler squeals. Kids, truly, without a care in the world.

I looked over to my sweet boy, watching him climb up and down the play structure, full of life. And yet without the same boisterous energy of his playmates. He has energy for miles, but it’s a different kind of energy. A heavier energy. Perhaps an energy born of a lifetime of experiences no one should ever have to endure. An energy honed after four and half years of literally fighting for his life against one of the most severe heart defects, hypoplastic left heart syndrome. And I was sad for him, sad for how hard he has fought just to play on the playground like other kids. 

And I found myself angry. Angry at a group of 3- and 4-year olds. Seriously. Ridiculous, right? My son has the sweetest classmates, and I love them. But, in that moment, I was angry. And sad. And I was resentful of their sweet lives, which are devoid of any pokes, prods and horrific procedures.

The feeling passed quickly, but it surprised me.

I don’t often feel like my son has “missed out” on much in life. We really do try very hard to let him live as typical of a life as possible in spite of being medically fragile. He goes to preschool, he “plays” (as long as it’s a very loose interpretation of that word) sports, he loves to color and crash his cars, he has chores just like his sister. By most accounts, he lives a rich life.

And yet, sometimes, the reality of what he’s been through still hits me.

So this is what I would say to those who watch from the sidelines and wonder how we do it: This life is tough on the inside.

Not always. Sometimes it’s amazing, and the blessings are overflowing. And 100 percent of the time, I am confident this is where God has called our family.

But even so, sometimes it is freaking scary.

Of course it is when you’re in the hospital and in survival mode. That’s kind of a no-brainer, right? Everyone can see that.

But sometimes it’s hard even when it doesn’t look like it.

There are the times when my mind races back to appointments that ended in unexpected hospitalizations, which triggered a massive amount of anxiety and stress, having almost lost my child more than once. And my mind races towards the inevitable — will this be the appointment where we finally start to see his heart function decreasing or his body not liking his circulation?

Times when sweet chubby little hands reach out for medications, as much a part of life for him as playing with his little cars. And times when he can name all of his medications without skipping a beat.

Times when a new pediatrician stops short upon walking into the room, saying, “Wow. I just read his file, and this was not the child I expected to see.”

Or times when you watch him play on the playground, and realize that his life is so, so much bigger than any 4-year old’s should be, his worries deeper, his life experiences more colorful.

And it hits me again, almost as hard as the sucker punch from the initial moment of diagnosis. For just a moment, the clarity of it all, of everything he has been through, hits me. And it brings me to my knees.

For those of you on the outside, I say thank you for still keeping those of us on the inside grounded. Thanks for sticking around. Thank you for asking me how I’m doing, how my husband is doing, and how my son is doing and how his sweetheart, healthy big sister is doing.

Thank you for recognizing this journey isn’t always easy, but it’s the journey we’ve been called to.

Thank you for praying for us up close and from afar. Thank you for interceding on our behalf when we’re too tired or too scared to.

Thank you for not making it all about my son’s heart, about what makes him different, because it’s not always all about his heart. Someday, his heart will dictate decisions he makes in his life.

That day, it will be all about his heart.

But today is not that day.

Today, he just wants to be a boy, playing on the playground.

Thank you for letting him be that kid.

Follow this journey on Hope for Baby Bennett.