A discovery that rocked our world

A week after the world shut down, our lives really changed. 

For months, I knew something was different about my newborn baby. At 2 months, I told my trusted pediatrician that our baby wasn’t meeting his tracking milestone, and I found him constantly staring at the ceiling. I’m sure he thought I was another overly obsessive mother. The doctor told me to be patient and let our baby move at his own pace. I mentioned it again a month later, and he told me to give it more time. After another month with no progress, I met with a different doctor at the practice, a woman I knew personally from our synagogue, and while holding back tears, I told her I really thought something was off – I felt it in my gut. She looked at me and said, “Ok, let’s get him checked out.” 

A rush of relief came over me. Finally, someone gave me permission to take action. With that started four months of desperately seeking available appointments for neurologists, specialists, and tests so we could figure out what was going on. I watched doctors twist and turn our baby into a pretzel, was asked to get him to sleep through an MRI, and even hobbled on an injured foot through the city just to get his eyes tested by an overbooked specialist.

I did what every parent would do to get answers. Each of the tests came back normal. Finally, we were sent for a genetic blood test – our last option. We each got test and left the hospital, knowing it would be a few weeks before we heard back.

And then the world shut down.

When the geneticist called, we were all together in our house, hiding from an invisible enemy and shocked by the severe turn of world events. The test was conclusive; our son had a rare chromosomal disorder. My body didn’t know how to react. I was still processing people dying from COVID and making masks from old t-shirts; how could I process this? I thanked the doctor, briefly debriefed with my husband about how I was glad we had an answer, and then continued to make the kids’ lunch. 

I was clearly in denial. Even if I wasn’t, there wasn’t much to do. We certainly weren’t going to allow ourselves to be exposed, and our community had gone into complete lockdown mode. We lived a block from the hospital and could hear ambulance sirens throughout the day. We knew we were lucky that nothing about his condition was urgent, but it left us without a strategy. Looking back, that time was a gift. 

See, I am very task oriented. I keep a shared calendar with my husband, and we would go over it together each morning, making our plans for the day. With lockdowns in effect, there were no plans to make, no school dropoffs, and no buses to catch. We were home indefinitely, and all we had was remote work, snuggles with our kids, and a lot of TV.

Instead of seeing our son’s condition as a problem to be solved, as I would have done, I was forced to accept and do nothing. I was given the gift of seeing him as a “regular” baby, allowing us to process and grieve our expectations for his life without rushing to take instant action. It forced me to chill.

Reflecting back, I often wonder why I wasn’t more upset? Why didn’t I throw my hands in the air and ask, “Why did you do this to us, G-d?” I don’t know why the world had to experience this pandemic and lose so many lives. For my family, it put the rest of our lives into perspective. What mattered was that we had two beautiful sons whose smiles lit up our lives, which was enough to get us through.

To learn more about my son’s genetic condition, please visit https://dup15q.org/.