On Liam’s first day of kindergarten in late August, we brought him to school with a mix of pride, fear, excitement, and tears. Okay, I was the only one who shed the tears, but we were all ready for this big day to arrive. Though I was nervous, I had spent a lot of time throughout the summer talking with the school nurse and the kindergarten teachers about what to expect. The week before school began, our wonderful HTC nurse joined me for a meeting at the school where we reviewed Liam’s emergency plan, things to watch out for, and the great resources created by HFAfor this very moment. We prepared in every way possible. Now it was time to let him take that big first step to the next chapter in his life.
After leaving him that rainy Thursday morning, I headed off to work. I had to drive 30 minutes north to do an off-site presentation in rural Vermont, so I was a little nervous about not having cell service. Both for my job and as a hemophilia mom, my cell phone is always on and always within reach, so the pockets without coverage in our area are annoying and somewhat anxiety producing. Nevertheless, I drove up for my presentation thinking that it was early enough in the day. What could go wrong at kindergarten in the first two hours of the very first day?
Presentation complete, I got in my car to head back to my office. As I got on the interstate headed south my phone sprang to life with a missed call and a voicemail. Naturally, it was from the school nurse. The message said to please call when you have a moment and so I pulled right over on the side of the highway, heart in my throat, and called back. Even now as I’m writing this, I can feel the visceral reaction of fear and nausea, the voice in my head chastising me for putting work ahead of sitting by the phone, ready for whatever my child may need. The nurse answered right away.
He had a hangnail.
It wasn’t even bleeding! Just a hangnail that was bothering him in class so off to the nurse’s office he went. And so it continued for the first 10 days or so: I’d get a call about Liam falling on the playground, lightly bumping his head on a chair, scratching a mosquito bite too much, just random 5 year old issues. I grew a little frustrated. I thought I had been clear about what was serious and what wasn’t. I felt like they were removing him from class and social time to sit with a cool pack on something that wasn’t problematic. I began to worry he’d be labeled by his classmates as different, and by the school as a complainer. After the first two weeks had passed, the “calibration period” ended. Then I worried they weren’t calling me enough.
How do we hold both truths at the same time? We want our kids to be treated more carefully because there are real, life-threatening issues at hand. On the other side, we want them to lead typical lives with few interruptions because of their bleeding disorders. We normalize the prophylaxis and try to make the couch-bound days fun and not completely frustrating. All the protective measures and treatments we seek and utilize all converge at the same question: what is normal for our child? What is normal for any child?
I know this is not the first time I will delicately thread this needle as I support Liam’s brave new world at school. I know we’ll get it wrong, and at some point he’ll be mad at us for a choice we made or didn’t make. Eventually, he’ll be empowered to navigate this social labyrinth on his own behalf and hopefully he won’t be too stubborn to take our advice and lessons learned. It helps to remember that sometimes a phone call is only a hangnail, even if you were expecting something far worse.
Kristi, her husband, Nick, and 5-year-old son, Liam, live in Vermont.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.