Our little Jack.

So. I’ve been worried about Jack for a while.

Here’s the thing: I’m full of anxiety about everything. If you’ve been reading this blog for any length of time, you probably realize that already. It doesn’t take a lot to worry me. If I had one baby, I would be the type of mom who would always want to know at what age other people’s babies crawled, walked, or talked, so I could compare that against my baby and figure out whether to worry or not. But I have two babies. That means an automatic focus group of two. If they were both progressing and developing at the same rate, I wouldn’t worry at all — I would just assume that they were both either a little behind, right where they should be, or a little ahead. But they’re not developing at the same pace: Emme has done everything sooner than Jack. She held up her head faster, pushed up on her arms faster, and rolled over faster. Additionally, Jack’s arms and shoulders have always seemed “loose” to me — he’s hard to pick up, because everything feels kind of slack.

All of these worries were just kind of vague, niggling, back-of-the-brain worries for me until his six month check-up, when the doctor casually mentioned that his head was measuring in the 97th percentile while the rest of his body was still in the 18th percentile. She measured Justin and my heads to see if either of us had abnormally large noggins, commented that we didn’t, then noted that she wanted to see Jack again in a month to track his head growth.

I didn’t think much of this until I got home, and thought to google what excessive head growth could mean (note: Google is not the friend of the anxious mother). Hydrocephalus and Down Syndrome were the two front runners. Thus began my downward spiral of intensified worry and anxiety.

Down Syndrome was something that had worried me for a while. Now I started googling to see if it was possible for the condition to have been missed at birth and undiagnosed at six months. It was. I called Justin into the room and made him sit down. “Look,” I said. “I have something to tell you. I think Jack has Down Syndrome.”

Justin is a great husband. He didn’t laugh, roll his eyes, or call me crazy. He listened to me patiently and then suggested that he call the doctor the next day. He did, and asked her if there was a chance Jack had Down Syndrome. She told him that she had absolutely no indication that he did and told him not to worry about it. He told her that I had been worrying about the large head issue and she very kindly offered a referral to a neurologist so that we could check it out right away rather than wait the month she had previously suggested.

Since at that point I had decided Jack didn’t have Down Syndrome but, instead, had hydrocephalus, I eagerly accepted the referral.

At the neurologist appointment, the doctor ran Jack through about ten minutes of tests, consisting of twisting him one way or another, holding him up in the air, lifting him by his arms, and checking his balance. When she finished, she said he had hypotonia — low muscle tone — and recommended physical therapy to start right away. When I calmly accepted this news, she looked at me quizzically.

“You don’t seem upset by this,” she said.

“Well,” I answered, “I have two babies and one is very different from the other. I figured that there was something wrong.” From what she had said, it sounded to me like physical therapy would fix things right up.

There was a long pause.

“Wait. Should I be worried about something?” The temporary calm I had felt at her suggestion of physical therapy was beginning to dissipate. I didn’t like the way she was looking at me.

“Frankly, yes,” she said. And she told me that it was entirely possible that Jack had cerebral palsy or, as a result of his amniotic fluid dropping so quickly, had had a stroke in utero. The MRI, she said, would help us figure out whether he had a neurological condition. But it required sedation. In shock, I told her I would talk to Justin about it and be in touch.

I immediately called my pediatrician, who was so nice. Without exactly saying so, she implied that she thought the neurologist was overreacting and that Jack’s slow development had everything to do with his large head size and prematurity. She suggested I call Early Intervention, who was supposed to come back out in late July/early August, and ask that they re-evaluate him earlier. Hearing her no-nonsense opinion went a long way towards making me feel better, so I followed her suggestions and Early Intervention was at our house less than three weeks later.

That visit did not go well. Five therapists showed up, and  I could tell by the way Jack was responding to their actions that it wasn’t what he was supposed to do. When they were finished, they told me that they agreed with the neurologist: that Jack was hypotonic and, while they were careful not to diagnose, several of them indicated that getting the MRI might not be a bad idea. He was measuring 2-3 months on some of the tasks that they were asking him to do. The therapists started talking about goals, and where I wanted him to be at 11 months, when they were suggesting they would return; I was at a loss for words and just said, I want him to be where he should be, I guess. Crawling? Maybe? The physical therapist gently told me that based on what they were seeing, it was entirely possible that at eleven months he wouldn’t be crawling. That’s when I started to cry, which was embarrassing, so I used the excuse of taking Emme into the bedroom for her nap to step away for a bit.

Of course I will love my son no matter what. And of course a developmental delay, whatever the reason, doesn’t change that fact. It was just the thought that my child would have to struggle for something that was making me feel so choked up. I mean, there was also the specter of a serious neurological disorder that was causing some anxiety, yes, but at the base of my distress was thinking about my child’s life being difficult, for whatever reason (I feel so spoiled, just writing that — so many children in this world have to struggle from the moment they are born. We’re so lucky. Our children are so lucky.). The day after this visit from the therapists I saw a teenager in a wheelchair fighting to cross the street at a stoplight and thought: his life is so much harder than a child who does not have his disabilities. How does his mother watch him, day in and day out, fighting this fight that she can do very little to help him with? How do you live through that?

My anxiety was at a fever pitch at this point; Jack’s developmental delays were all that I could think about. I found out what kind of medication would be used to sedate Jack for the MRI, did a little research, and talked to a nurse at the hospital. The sedation was oral, was very light, and Jack would be assigned his own nurse and anesthesiologist, who would be monitoring him through every step of the process. We decided to go ahead and go forward with the MRI.

It was totally negative. When the neurologist called, she sounded surprised. I wanted to punch her through the phone. “I really thought there might be some issues there,” she said. Our regular pediatrician was kind enough not to sound smug, but instead said she was happy that we could relax a little bit now. “You’ll see,” she said. “Once his body grows into his head, he’s going to start doing everything he’s supposed to do.” The paperwork for the physical and occupational therapy recommended by the Early Intervention team took about five weeks to come through; by the time the first therapist arrived to work with Jack, he was sitting up by himself; pulling himself up on sturdy objects; and was moving towards crawling. In other words, in the words of the physical therapist, he was right where he should be. “Why am I here?” she asked me, and I have never heard sweeter words in my entire life.

We’ve continued with the therapy, though the physical therapist dropped to once a month and the occupational therapist to twice monthly, almost right away. We’re hoping to be finished by December. Both therapists are thrilled with his progress. We had an impromptu EI visit last week — two therapists, one of whom had not seen Jack before, came over to take a look at his progress. This time around, he measured late on some social development tests. He stared at the therapist, as he usually does, for a long time before any kind of reaction crossed his face. He also didn’t play with her on the level she said she would expect him to do at his age. She recommended more therapy. I declined, politely. Here’s what I wanted to say: every baby is different. This is what I have learned. You are seeing a Polaroid snapshot of a minuscule part of his day. Maybe he doesn’t really like you. Maybe he’s weird. Maybe socially he is a little behind. But you’re not going to worry me this time. Because whatever is going on with him, we’ll handle it, and if it looks like it’s going to be something we need help with, we’ll call you.

I’m trying very hard now not to measure them against each other, nor to measure them against other children. To celebrate their differences instead of worrying about them. If you’re surfing the Internet for four hours, typing in searches such as “baby isn’t crawling at 7 months is something wrong” and “at what age did your baby sit up on his own” (not that I’ve ever done that, oh no), you’ll find the huge range of ages at which babies hit these points. Honestly? I think we would all be better off not ever looking at any of the literature that tells us when babies are “supposed” to do certain things.

The other thing I’m trying hard to remember is that we can handle whatever is waiting down the road for us. I mean, I was 41 when I got pregnant. Prior to the twins I had a miscarriage an ectopic pregnancy; it was looking likely that we wouldn’t be able to have babies at all. Now, we have these two beautiful children; that’s the miracle. Whatever else is waiting down the road for us, we can handle. I just need to believe that.

Maggie - April 4, 2017 - 4:39 pm

That’s what we’ve all been waiting for! Great ponsitg!

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