This post was written by Marla Garfield. Photo: clevercupcakes/Creative Commons.
One of the first posts I did for this site was about my son's hypotonia. He has low muscle tone in his back and he cannot support weight on the palms of his hands and the soles of his feet. He's 17 months old and can roll and sit, but he still cannot transition from lying to sitting, he can't crawl, he can't stand, he can't cruise, he can't walk. He can kick and stretch and throw himself around, he has good fine motor skills, he's rejecting his straw cup because he wants to eat like the big kids, but he cannot do these other things. When gross motor delays are present, that can lead to speech delays, then developmental delays in play and communication. It can be treated with therapy. Lots and lots of therapy. He has improved, but slowly.
There are worse problems. But it's terrifying.
My husband, Josh, and I haven't buried our heads in the sand. On the contrary, Stefen has been seeing a neurologist since birth, and he began physical therapy through Early Intervention in February. We'd known all along he needed more PT than he'd been getting. But at his 15-month pediatrician appointment, it became clear that his condition is more serious than we realized, we'd stuck with an ineffective neurologist because I was impressed with his sterling reputation and personable demeanor, and we needed to be more aggressive with Stefen's treatment and do some doctor shopping. We just saw his new neurologist and walked out of the appointment shell-shocked.
We haven't been blind to what's happening, but I think we've been in denial.
When something is wrong with your child, a thought runs through your head that can block out almost every other thought, and you allow this to happen because you want it to be true. That thought is: "He'll be fine. Other kids who have what he has are fine; why wouldn't he be fine?" So maybe for a while, if your child's problems aren't "pressing" (I put that in quotes because it's all relative, isn't it?), you convince yourself that things are going well and they are not as grim as doctors and specialists and therapists are implying.
No matter how realistic you think you're being about the challenges facing your family, sometimes you need a giant shove to become ready to take it in. And if you're not ready to really absorb what is required to treat your child, you have to be in a state where you're going to accept somebody else making you ready. In our case, what makes it complicated is that there is no known cause of hypotonia so all we're treating are symptoms of some mysterious thing. And when the symptoms overlap, his therapies overlap, so at every appointment, something else is recommended: a different therapy, a different specialist, a different test. It was difficult to make a decision on his course of care or to feel that we weren't spinning our wheels since nobody seemed to be on the same page. So when the new neurologist didn't tell us what we wanted to hear - that one day Stefen will function like a normal kid, and we're on the right track, and that there's a consensus on what to do next - and instead he was honest with us, saying it's going to be a long process and it's difficult to tell exactly how extensive Stefen's delays will be because he's extremely interactive and sharp but still so young, we weren't sure if we liked him.
And then we spoke with the pediatrician.
"I'm glad he told you what he did," she said. "You needed to hear it. It's what your old neurologist should have been telling you and didn't."
We spent two days hysterical, and have since been in fighting mode. Josh is a great researcher, so he's been looking up everything he can find about hypotonia. I've been calling EI, doctors, therapeutic programs affiliated with hospitals. I'm receiving advice and support through my neighborhood listserv. We're moving forward.
For a long time, I've been hiding behind my busy work schedule to avoid making playdates with friends so I won't compare their children's progress with Stefen's. I don't see him play at daycare. I know he interacts well with other kids, and I know he's getting stronger. But as much as I fear that his delayed mobility limits his ability to explore the world, I've been limiting his - and my own - exposure to other children because I'm so scared I won't be able to handle what I'll see: my son sitting, and my friends' kids running. And that doesn't help him at all, not one bit.
Denial is mental purgatory. Your brain rests at a certain point, waiting to enter nirvana or hell. In a great show of double negatives, I don't think it wasn't useful. Josh and I steeled ourselves to move forward full-throttle in a clear-thinking way. Maybe we couldn't fare as well six months ago. Now that I'm here, I find that talking and writing about Stefen's case helps keep me in this world. It's nobody's business, really. None of you needs to know what's wrong with my son. But for a long time I'm going to have to explain his diagnosis to kind people who ask me if he's walking yet, if he's talking yet. I'm going to have to explain why I'm carrying my toddler-who-doesn't-toddle. So I better get used to it.
A large part of facing the reality of your child's condition is having your medical team on the same page. It can be so overwhelming, especially when your child's care comes from resources who are linked in their disciplines but not linked by place. Appoint one person to coordinate everybody, to guide you. That person will keep you in check too, because as you learn to trust them, their honesty and knowledge are exactly what you will need to stay present and awake.
The point of denial is not that you felt it and lost time; it's that you needed that time to process and then finally jumped in to take the next steps. Josh and I are where we need to be now, really in it. We feel good about how we're moving forward for our son. And I hope that in the next year, I'll be able to tell all of you that Stefen took his first steps. But first I have to say to my blank computer screen, and to you, and to myself, to my heart, where we are today.