Tuesday, June 23, 2015

I don't know how to do this.

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, to remain cautiously optimistic for my baby's future, for all of our futures. I learned to focus on the kicks, the rolls, the reminders that 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 constant and steady hum of life inside of an 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, and added therapists and learned the difference between a "developmental preschool" and a "traditional preschool." I learned the buzz words. And I watched him grow and thrive.

I learned to walk beside my preschooler, watched him try his hand at traditional preschool, watched him excel in some areas and still struggle mightily in others. I saw him through another open-heart surgery, and learned to gauge how much to speak about in front of "listening ears." And 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 all along the way. But my husband and I, we figured this out. We got 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. 

And now, we stand on the precipe of his elementary school years, and I realize I have no idea how to do this. I have NO idea how to parent a medically fragile school-aged child. I mean, I really don't. 

I am so beyond grateful to be standing at this place, because 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 am terrified.

We will have to start 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 is SO hard to let go of the constant surveillance and monitoring, to let someone else step in and do that for you.  I will have to start relying on a teacher to know him well enough to know when he is looking "off." We will have to start having discussions about 504 plans and whether his school has an AED on site. And, most of all, we will have to watch him start to figure out how to live amongst typical peers with this big huge thing that has fundamentally shaped his formative years in a way they cannot even grasp.  

We will have to start scheduling doctor's appointments not whenever the doctor is available, but so as to miss the least amount of school possible. And have to face what will likely be missed days of school due to viruses. Bodie fares pretty well with viruses in general, but with a half a heart, every virus has the potential to take him down quickly and mercilessly, possibly landing him in the hospital. 

Learning difficulties are very common among school-aged children with complex congenital heart defects, particularly Hypoplastic Left Heart Syndrome. Things may be difficult for him that are not for his peers. He may have trouble organizing his thoughts, his writing, his priorities. He will have to learn to compensate for all of this. 

He will have to know his body, and what limits he needs to set for himself. How hard he can play. How fast he can run in PE. And, more than anything, as he becomes more aware of his heart and 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. And when not to internalize it when others aren't receptive to his story. That's A LOT to ask of a 5-year old. I think it is 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 where I could and to love and encourage him where I could not. But the start of his elementary school years mark the part of this journey that he will walk alone, that will be uniquely his. 

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

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

Just as I figured out how to remain upbeat when a doctor has just 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 am 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. 


  1. Awwww Amy, I remember the same feelings. I just want you to know that Bodie will thrive and grow and you will be amazed at his progress.
    It's just some hours during the day and he's back with you late afternoon to help him with any difficulties.
    Helping in the classroom for a few hours a week (if possible) is the way to get through and ease any fears.
    I was a wreck when College time came and we both made it through and were that much stronger for it.
    I guarantee you Bodie will outshine the others and be just fine with a great mom like you, big sis and Dad watching out for him.

  2. Amy,
    I had the same feelings as you. My special needs child will also be entering Kindergarten next year. Because of my anxiety, I created a company called Someone Special: Uniquely Personalized Books. We create personalized picture books for children with special needs. They are specifically designed for taking to school. We would love to help out Bodie. Please feel free to contact me at HeatherMcCarthy@someonespecialbooks.com or check out our Facebook or Webpage at www.someonespecialbooks.com.
    Thank you for sharing your story!