Four months ago, days before Christmas, my sweet toddler spiked a fever and seized in his sleep. His dad sped down the toll road to the children’s hospital in Washington, DC, as I held our child’s limp and unresponsive body in my arms, pleading with him to open his eyes and look at me, to hear me.
Because of COVID-19 restrictions, when we arrived, I sat alone with our baby for eight hours in the ER, asking medical folks to help, to listen, to please hurry. Finally, imaging showed that a recent surgery site was infected and he was admitted to the hospital. For hours we weren’t sure if he’d need another surgery, but thankfully, because we got to the hospital quickly, an aggressive course of antibiotics was enough to stop the infection.
It’s been four months since that terrible day, but I’m still shaken by it. It scared me to hold his unconscious body and not be able to reach him. It scared me to initially not know what was wrong.
That traumatizing day was just the latest in a long line-up of days during which his future seemed uncertain.
To start, it took years for us to have him, after an unexplained infertility diagnosis, and I worried every day of my pregnancy that I could lose him. A few hours after he was born, we were abruptly and traumatically separated when he was taken by ambulance at 3 a.m. to a larger hospital that could give him the intensive care he required to survive.
In time we’d learn he was born with three rare diseases and a disability and that he has a body more complex than even most specialists can fully understand. Overall, across his short life, he has had 10 surgical procedures and 15+ hospitalizations and scary ER visits, including a two-week NICU stay.
At one point, when he was 18 months old, his single kidney was in danger. We finally found a specialist who knew what was wrong and gave us instructions and supplies for round-the-clock interventions.
Last May, a month past my child’s 2nd birthday, I took him to see the specialist again and the imaging showed those on-going interventions had saved the kidney. The specialist said we found help in time, when his body was still young enough to more easily recover. Now our child has an improved life expectancy.
Thank goodness for medical advances and for everyone who has taken care of our child or whose work has ensured that he hasn’t died. And thank goodness for health insurance.
In a different era, or a different place, I know he wouldn’t be here.
Instead, he is here, and he turns three this weekend. I’m more grateful for this truth than I can express. He amazes me each day. I love him and I love being his mom.
After our brief separations during the day, he greets me with his arms raised and calls out, “My baby!” because he knows I’ll scoop him up, hug him close and say, “Awww my baby! My baby, I’ve missed you!”
He gives me hugs and kisses on the cheek and usually wants to hold my hand wherever we go. He still likes for me to carry him and he sits on my lap as we read books. We snuggle all night, co-sleeping so I can watch out for him. I’ll miss all this when he’s older.
“Let’s run!” he suggests several times a day. Then he flies around the house, or up the paved paths near our neighborhood, or across the high school tennis courts or a field, blonde hair bouncing.
“Will you tell me a story?” he asks over and over during the day. When we’re in bed, he snuggles against my body or lays across my stomach (“baby otter” we call it in our shorthand language) and contentedly listens to me weave together true and far-fetched stories about my childhood dog Snowy. He also likes the stories I compose that star him and his cousin his age and their magical yellow crocs.
He’s creative, athletic and caring and can tell us his own stories now too, run a mile, nurture stuffed animals, send little cars flying down ramps he builds. He colors and paints and climbs at the playground. He can identify more than 20 birds and goes on long nature walks with me.
He howls with mirth as he throws pieces of dog food to our two dogs and they scramble around searching for the brown pieces against the brown hardwood floor. At the library, he’s so excited by the books we select that he wants to sit down and read each one right then, immediately.
I appreciate how our house often echoes with his laughter and small stomping feet and sometimes with the screams and yells of a frustrated toddler. He makes our house noisy and full of life.
Yet all is still not well, as his infection four months ago clearly showed.
Almost weekly, I take him to the hospital for medical appointments, to get an x-ray, to try to figure out the best way to keep his bowels empty and his diapers clean between the 45-minute enema flushes he sits for each evening. If we can’t figure out his bowels, he may need another surgery soon, to return to a colostomy bag like he had from when he was 3 days old until 8 months old.
We don’t know all that his complex body needs or will need. It worries us.
But as he reaches this milestone of three, I feel more confident that he’ll keep thriving in many other ways, thanks to medical interventions, the guidance of specialists and advice from people in support groups. I feel more confident that he’ll keep having birthdays to celebrate.
Many days, him reaching this age was hard to envision, we were living moment by moment, in crisis. But he’s made it. He’s three. My baby, my love, my sunshine is three.