At the time of Isaac’s medical evaluation in the spring of 2009, we knew that our Chicago era was coming to a close. Todd was in his fifth year of residency, and we would be moving to Houston at the end of June for a one-year fellowship. 

I remember walking with Isaac in his stroller down the city streets to Advocate Illinois Masonic Hospital for his therapies. It was still in the 40s in the mornings, and everything I was doing felt foreign and strange. But at least they were scheduled appointments, something concrete and measurable. Much of the time, I didn’t know what to do with baby Isaac. Maybe because it wasn’t clear he was doing the things he was supposed to be doing according to the books. (See my blog post leading up to this story, Not Knowing.) Maybe because I felt like I had to make things happen when we were alone together that weren’t happening on their own, which just left me confused and upset. 

One bright spot was Music Together, a program I learned about through my Friday mom’s group and immediately added to our small weekly repertoire of activities. Music had always come naturally to me, like a first language or something I had always known, and maybe it was Isaac’s first language, too. He started clapping with the beat when he was eight months old, right in line with the other babies if not before. We listened to the CDs every day at home, and his enjoyment and responses seemed blessedly typical. It was something I could do with Isaac and feel a genuine connection while the worries abated, if only temporarily.

A change of real estate

Isaac was 10 months old when we moved. We registered with Early Childhood Intervention (ECI) in Clear Lake, our temporary home, and I found a Music Together program at the Motherhood Center in downtown Houston.

Our new neighbor was a real estate agent, and one day when Isaac was fussy, she said: “Everyone needs a change of real estate from time to time, even a baby.” By that, she just meant a change of scenery, like moving from the house to the back yard. Just walking through a doorway can be all it takes. It was a simple statement but one I’ve always remembered. Still today, when Isaac is struggling, I try to think about getting him out the door—literally—to something different from whatever has him stuck. And it almost always helps.

Moving away from Chicago was hard because Todd and I were leaving what had been our first home together, the place where we’d started our married life and had our first child. But some part of me thought moving back to Houston—which was home for both of us, and closer to our families—could help us. Maybe it would give this looming feeling of the unknown some sense of grounding or at least lessen the burden. And I think it did somewhat, at least for me. All these years later, looking back, I realize this next span of months didn’t feel quite as heavy as Isaac’s first months had, even though we still had significant concerns.

Developmental milestones

Like so many developmental milestones, I never knew what to say when asked at what age Isaac started sitting up. Because he could sit up, no problem. But he didn’t always stay up. We knew from his evaluation that he had hypotonia, or low muscle tone. If he was on carpet and fell forward or backward, no big deal. But if he was on a harder surface, I felt like I had to be right there, vigilant, the hovering mother I never intended to be. (That was the only anxiety I took with us every week to Music Together, where there was a hardwood floor.)

At 12 months, Isaac still wasn’t crawling. Many babies his age were already walking. Of course we were worried. And yet, Isaac would do things from time to time that made us realize he was progressing, just in his own way. 

Our therapists encouraged us to put toys just out of Isaac’s reach on the floor so that he had to try to advance forward. Isaac had a hamburger toy that came apart in pieces—buns, burger, lettuce, tomato, cheese—so that you could separate them and put them back together. I’d placed a piece of the hamburger just out of his reach one day and was watching him intently to see what he would do. He rolled over onto his back, used his legs to push himself up on the carpet, then rolled back over on his tummy and grabbed the burger. It was brilliant, actually. Even though he didn’t know how to crawl yet, Isaac used the skills he did have to get what he wanted. And at twelve and a half months, he started to crawl.

This is how it always seemed to go with Isaac. He might be behind, but he would not be counted out. 

Genetic testing

As time went on, we knew that Isaac was also on the verge of a speech delay. ECI Texas was doing a statewide screening for Velocardiofacial Syndrome or VCFS, a condition we didn’t think Isaac had (and they didn’t think he had either), but since he had three-ish of the known signs—hypotonia, motor delay, and speech delay—he qualified for free genetic testing. We set an appointment with Texas Children’s Hospital in the Houston Medical Center and took him in for a blood draw. Isaac must have been 14 months old at the time. The test was called a genetic microarray, and the results would come back in a few weeks. 

I had conflicting thoughts. I remember thinking maybe they would finally be able to tell us what was causing the delays. Something small, surely, because he was always just a little behind. I also remember assuming the results would be like all of the others: inconclusive, with no known reason. I was wrong.

Three weeks later, I was standing in the kitchen by myself—Isaac must have been napping—when the phone rang. And I kid you not, the thought ran through my head, “This could be the phone call that changes your life.”