I take a right turn out of the elevator and walk toward the wall of windows facing the street. It’s not quite eight in the morning on a cloudy day, and I think to myself, “How the hell did I get here?” Like a knight going into battle, I pause to put on the coat of armour that protects me from the struggle ahead: the fight for my son’s health. The most important piece, the breastplate, covers my heart. The tears and dark fears will not show themselves today.
As the days and years pass by in my son’s medical journey, pieces of armour start to fall off. The procedures, tests, IVs, blood work, feeding tubes, injections, infusions, transfusions, all become routine. (Somehow the blood transfusions never became routine.) The other parents become comrades, though the diagnoses of our children differ. We find quiet moments for raw conversations about the struggles and frustrations, the fears and the triumphs while supporting one another. We also talk about books, theatre, and life outside these hospital walls; we strive to feel some semblance of normalcy.
The feeling of us — parents — versus them — doctors and nurses — slowly dissipates. We grow to know each other on a personal level. We share laughs, hugs, and understanding. We strive towards the same goal: to make my son stable. I find comfort in the medical staff’s dedication to determining what is wrong and treating my son’s symptoms.
In everyday life, I wrap myself in the coat of armour more often than not. I learn to shield myself from the ignorant, hurtful comments that sometimes come my way. There was that time, early on, when a mother suggested that I feed my severely orally averse son, who uses a nasogastric feeding tube, avocados to “get him started.” My armor went missing when a friend got a job opportunity in the United States — a dream for our family when our son is medically stable — and yet she complained to me about the details. I stood on the corner of the street, trying not to scream at the top of my lungs, “Take the job! You’re not stuck here!”
At some point, I stopped relating to others who seemed to have “normal” lives. I didn’t know how to answer the question, “How’s your son doing?” I don’t question the kindness of their intentions, but people rarely want the real answer. My son’s disease is invisible to the outside world; I decide to keep the details invisible as well. In taking a step back, I leave the armour on, snug as a cashmere blanket.
It’s a long day at the hospital. My son is having his sixth endoscopy and colonoscopy in five years. The friendly anaesthesiology assistant, Steve, is coming to check on him before the procedure, and to take a look at his loose upper front tooth, which they may need to remove. Though known for his endless smile, my son’s lower lip trembles, and his little hand wipes tears from his eyes. He’s in a hospital gown, wearing a pull-up, and afraid that his body will be exposed during the procedure. We assure him that he’ll be covered. He’s used to the routine, unfazed by these things, but this time he’s scared. I wipe my cheeks and realize that, for all the armour I wear, my son is the true warrior. I must help him go into battle.
Six years ago, we named our son Nechemya — no middle name. Hashem comforted us in our journey to start a family with Nechemya’s birth, and we chose the name to teach him that no matter what the challenge, Hashem will always be there as a comforting force.
I’m learning that we can’t struggle alone. I beginning to understand that it’s imperative to let family and friends see the messy side of our lives. I am starting to believe that it’s okay to ask for help and let my guard down. Every clinic visit, our doctor compliments our resilience. At this point, Nechemya hasn’t been admitted in over three years.
I’ve maintained a quiet connection with God throughout. I talk to Him. I know, without a doubt, that He, in his immense kindness, is the reason I have the privilege of tucking my son into bed every night.