Why I'm Scared For My Medically Fragile Son to Go to School

I thought I had this all figured out. This whole parenting a medically fragile child thing. 

I figured out how to be pregnant with a child with an unpredictable future. The scary parts, the uncertainty — I learned to deal with it. I learned how to remain cautiously optimistic for my baby’s future and for all our futures. I learned to focus on the kicks, the rolls and the reminders my sweet baby was safe and sound inside of me.

I learned how to be a parent to a newborn, an infant, in and out of the hospital (Ok, really, just “in,” punctuated by a few brief respites on the outside). The constant worry, the multiple surgeries, the beeps and alarms of machines. The steady hum of life inside the Intensive Care Unit. I learned to live life one day at a time, to anticipate the roller coaster and enjoy the highs as much as I could.

I learned how to parent a medically fragile toddler, celebrating milestones a little later than his peers. I worked with his pediatrician, his nutritionist and his cardiologist to get him finally, blessedly, on the growth charts. I navigated the regional center system, added therapists and learned the difference between a “developmental preschool” and a “traditional preschool.” I learned the buzzwords. And I watched him grow and thrive.

I learned to walk beside my preschooler and watched him try his hand at traditional preschool, excelling in some areas while being challenged in others. I saw him through another open-heart surgery, and learned to gauge how much to speak about it in front of “listening ears.”

Last month, I watched him don a cap and gown and graduate from preschool, ready to take on the world of kindergarten.

None of this was easy. It was fraught with fears and failures along the way. But my husband and I, we figured this out. We have a handle on what it means to parent a medically fragile child, and all the ways it was different than parenting our typically developing older daughter. 

But now, standing on the edge of his elementary school years, I realize I have no idea how to do this. I have no idea how to parent a medically fragile school-aged child. 

I’m so beyond grateful to be here. We were never given any guarantee we would get this lucky.

But, truthfully, everything is about to change. 

For us. For him. For his teachers. 

And I’m terrified.

We’ll have to start by letting go a little bit. Yes, this is true of every kindergarten parent, but is even more so when your child has a major complex medical condition. It’s so hard to let go of the constant surveillance and monitoring, and to let someone else step in and do it for you. I’ll have to start relying on a teacher to know when he’s “off.”

We’ll have to start having discussions about 504 plans and whether his school has an automated external defibrillators on site. 

We’ll have to start scheduling doctor’s appointments, not whenever the doctor is available, but so he’ll miss the least amount of school. We’ll have to face the missed days due to viruses. With a half a heart, every virus has the potential to take him down quickly and mercilessly, possibly landing him in the hospital. 

Things may be difficult for him that are not for his peers. With Hypoplastic Left Heart Syndrome, learning difficulties are very common. He may have trouble organizing his thoughts, his writing and his priorities. He will have to learn to compensate for all of this. 

He will have to know his body — what limits he needs to set for himself. How hard can he play? How fast can he run in P.E.?

And, more than anything, as he becomes more aware of his heart, what it means, and how it makes him different from his peers, he will have to decide how much of his story he wants to share, and with whom. That’s a lot to ask of a 5-year old. I think it’s this self-awareness piece that scares me the most.

Every bit of his journey thus far, I have been able to walk with him. I have been able to protect him, love him and encourage him. But the start of his elementary school years mark the part of this journey he will walk alone. This part is uniquely his. 

And I am not ready for this part of parenting a medically fragile child. 

Not one little bit.

But I know I will figure it out. And so will he. 

Just as I figured out how to remain upbeat after a doctor told me my baby would be born with a half a heart. Just as I learned to find hope amidst multiple open-heart surgeries and prolonged ICU stays. I will figure this out as well. 

I will reach out to hold the hands of my fellow heart moms, the ones who have walked this journey ahead of me and who are walking alongside me right now. I will learn from their experiences.

I will seek solace and support in my friends and family, who have held my hand and prayed over our sweet boy all along.

Together, we will help pave this next part of Bodie’s path for him.

Because my little guy, weak heart and all, is counting on us to figure it out. 

And I’m not about to start letting him down now.

He has risen to every challenge we’ve placed in his way.

So now it’s time for me to meet his challenge. 

Follow this journey on Hope for Baby Bennett.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.