It’s 4:00 A.M. on a Thursday, and my partner, Sarah, and I quietly move into our four-year-old son, Jake’s room. We need to transfer him, still asleep, into the car.
“You do it. You’re better at it,” she whispers. This isn’t accurate—she just wants to avoid the blame if he wakes up screaming in the car.
Why 4:00 A.M.? I’m a morning person. (Actually, I’m not. My rock band dreams have long fizzled.) I pick him up and carry him down the stairs, through the garage.
After strapping him into his car seat, I mentally grade my parenting skills on car seat safety. An “A” would mean everything is secure—no wobbly harness and ensuring the climate control is set before he’s in the car. An “F” would be when you forget everything and run back into the house for your phone, leaving your child unprotected. (For the record, I’ve never received an “F”—I’ve just heard stories.)
We hit the road, and I’m at the wheel since Sarah tends to zone out on long drives. I tune into Howard Stern, chuckling at his antics.
“Brett, turn it off,” Sarah insists.
“He’s sleeping.”
“He can still hear it.”
“I need to stay alert.”
“Fine, pass the snacks.”
“You don’t need snacks,” she replies.
Sighing, I respond, “This is how addiction starts—constantly denied by loved ones.”
“Okay, put Howard back on then. He’s going to need therapy with us as parents.”
Boston Children’s Hospital – Waiting Room, 7:30 A.M.
I try not to focus on the other children around us. Some appear perfectly healthy, while others face even greater challenges than Jake. I’m stuck in my thoughts, weighing whether it’s a comfort to see kids worse off or just a painful reminder of our situation.
Jake was born with CLOVES syndrome, a rare overgrowth disorder, which has led to his right arm and hand being larger than normal, a deformed right foot, and port wine stains scattered across his body. His veins are also affected, which is why we’re here today for a full-body MRI.
Radiology Department
A team of doctors and medical students fills the examination room. One doctor leads the discussion about Jake’s case, while he, blissfully unaware, enjoys the attention.
They assess his vitals while Sarah distracts him with his favorite show on her phone. “It’s just an arm hug!” she reassures him during the blood pressure check.
But once the vitals are done, they need to take the phone away for the MRI. This prompts a meltdown—his biggest issue, but not the only one. They must put a mask over his face to sedate him for the procedure.
I step outside, unable to watch.
Waiting Room
The MRI will take three hours. Sarah has packed an entire office’s worth of work to keep herself occupied. I retreat to a corner, determined to catch some sleep but instead feeling overwhelmed by self-pity.
I wander the hospital halls, each step revealing the unique atmosphere of children’s hospitals. You feel a sense of purpose being there, yet also a deep helplessness as you rely on professionals who seem better equipped to help your child than you are.
Seeing other parents like me offers a strange camaraderie, but I hesitate to connect beyond these walls. Outside, I prefer to forget about the reality of our situation.
I pass by Sarah, who’s engrossed in organizing Jake’s treatment binder. “Relax,” she tells me, but I can’t. My mind races through my usual vices:
- Another Xanax? No, I’m driving home after this.
- No casinos here.
- And definitely no alcohol.
I decide to head to the food court. “Want anything?” I ask Sarah, but she’s too focused to hear me.
One Hour Later
I’ve consumed what feels like an entire feast, either starving myself when anxious or binging. Today, binging won.
My phone offers a momentary escape, but my thoughts spiral out of control. I want Jake and his sister, Mia, to remain blissfully unaware of life’s harsh realities for as long as possible. They’ll learn about death and suffering eventually, but at four? That’s too soon.
We do our best to shield him—turning his medical experiences into games and rewarding him with treats post-procedure. For now, it’s working, but I worry how long we can maintain this facade.
Recovery Room
We sit beside Jake, who’s peacefully asleep, connected to monitors and an IV. Today was just routine tests, but it feels invasive.
As another child is wheeled by, my heart sinks. I lean on Sarah, and we share an emotional moment.
“I sometimes snap at him,” I admit. “I treat him like he’s just like Mia.”
“He’s not,” she replies.
The nurse checks Jake’s vitals. “When friends complain about trivial stuff, do you ever just tell them to stop?” I ask her.
She chuckles, “Sometimes. But don’t we all want to have those small complaints?”
Jake awakens, yet he doesn’t ask why he’s here, which feels like both a relief and a concern. I dread the day he realizes this isn’t normal.
Epilogue
The next day, we receive troubling news about a vein in his leg that poses a clotting risk. He will need a procedure that involves anesthesia and surgery.
While I worry about the risks of surgery, the greater concern looms: how will we explain this to him?
His lack of understanding is bittersweet—he hasn’t truly suffered yet, but it feels like we’re keeping a major secret from him. The more invasive the intervention becomes, the more challenging it is to maintain his innocence.
As we start our long drive home after stopping for pancakes shaped like Mickey Mouse, I turn to Sarah. “What will we tell Mia?”
“The usual,” she replies. Our five-year-old will be jealous that we spent the day with Jake. We’ll tell her we got stuck at the doctor’s office, leaving out the good parts and the bad.
For now, Mia’s innocence remains intact. One out of two isn’t too bad.
For more insights on parenting challenges, check out this post. You can also explore Cryobaby, an authority on home insemination. For comprehensive information on pregnancy, visit Healthline.
Summary
The journey of parenting a child with a serious medical condition is riddled with emotional challenges, moments of helplessness, and the struggle to maintain innocence. As parents navigate hospital visits and medical procedures, the balance of shielding their child from harsh realities while preparing for the future becomes a delicate and ongoing task. Through it all, the bond between parents strengthens as they face these trials together.
Keyphrase: Parenting a Child with Medical Needs
Tags: [“home insemination kit” “home insemination syringe” “self insemination”]