Preemie Mom Confessions

It's been a long time since I really thought about being a "preemie mom". Because I'm able to forget most of the awful stuff that happened at the beginning of my kids' lives, I don't dwell on it. Better to work on the problems than linger on the potential causes for those issues, I say. And, the truth is, I've found that words are wholly inadequate to describe those days. There's no way to convey to someone with no experience just what it was like. None.But every now and then, there's a day that takes me back to some of those really bad times...not necessarily in a bad way, but in a contemplative sort of way. Yesterday was one of those days.

Yesterday, we went for our conference with Mam's preschool teachers. This is the conference where they discuss your child's readiness for kindergarten. "Do you expect any surprises from them?" Daddy asked on our way there. "No," I said. "But then, they wouldn't be surprises if I expected them, would they?"

There have certainly been surprises along our way to this point. Some of them very bad, some of them not so bad, some of them fantastic. At moments like this, where judgement (no matter how kindhearted) is going to be passed on one of my children, I often remind myself how far they've come. It plays out like a movie...with flashbacks in muted colors, but with strong emotions still attached.

[FLASH]
Me: (in a hospital room, waiting not-altogether-anxiously for word about my baby girl, whose delivery was so scary, I didn't dare ask about it) What were her Apgar scores?

Disembodied voice: Zero, two and six.

Me: Huh. I didn't know you could be alive with an Apgar of zero.

Dawning realization...She wasn't.
[FLASH]
Mam's teacher: She traces and cuts with scissors very well, she knows all her letters, she writes her name...

[FLASH]
Neonatologist: She has a small bleed in her brain. There isn't anything we can do about it. We'll do another ultrasound next week to see if it's gotten better or grown. As long as it stays this size, it should be meaningless.
[FLASH]
Mam's teacher: She counts very well, both out loud and in her head. We don't do them in class, but I asked her if she'd ever done a dot-to-dot. She was so excited to show me.

Me: (laughing) The byproduct of many children's menus!

[FLASH]

Neonatologist: The scan shows a cyst in her brain where the bleed once was. It may be nothing. It may also develop into something we call PVL, which is often linked to severe learning disabilities.
[FLASH]

Mam's teacher: And, of course, she can walk, run, jump and skip like nobody's business.

[FLASH]

Me: (trying to get the attention of a doctor who had so far avoided me) Did the PT [physical therapist] come to see my baby when she was here last week?

Neonatologist: Yes.

Me: What did she say?

Neo: We're really concerned about her. She had very low muscle tone and didn't respond well. It's not a good sign.
[FLASH]

Mam's teacher: We'd really love to keep her, but she's totally ready to go.

Me: Yeah. I know.

But there was always that lingering doubt. That little tiny voice that said..."But she was dead."

I don't know that I believe in miracles. I'm a science-y sort of girl. I think we were exceedingly lucky. I'm very grateful for that, despite the terrifying days that were Mam's beginning.

I'm painfully aware that not all parents, especially those of preemies, but many others as well, get such good news. Some parents never get the chance to hear about kindergarten at all. And the fact that Mam is almost five and perfectly prepared for kindergarten isn't something I can take for granted. It's so much more than we were given reason to hope for.

What it's like

The other day, I took the kids to a playdate at a friend's house. During our visit, my friend asked me how things were going with Smunch's speech. People don't usually ask, so I hadn't give it a lot of thought lately. I shrugged. "Is it pretty frustrating?" she asked. And that got me to thinking. Well, no. It's not really frustrating anymore. No more frustrating than parenting any other kindergartener, anyway. I'm sure Smunch is still frustrated from time to time.

I realized that I've let go of that desperate hope that he's going to overcome his stuttering. Over the past year or so, with the stuttering constantly waxing and waning, regardless of what kind of therapy we try, I've come to accept that this is something he will struggle with, to some extent or other, for his whole life.

To be very clear, it's not that I've lost hope for my kid. He's got plenty of things going for him. I've just accepted that he may never be typical for a kid his age. He will probably get teased and picked on more than his peers. I can only hope it somehow builds fortitude.

Most days, I forget that Smunch is struggling to talk. Most days, I forget that this makes him different. Most days I make the time to stop and listen carefully when he wants to say something. Other days, I find myself watching him struggle to speak as though I'm watching a train wreck. In the back of my mind, I'm horrified that he has to deal with this...even though I know there are worse things. Just asking his teacher a simple question can be a long, painful process. I watched him do this the other day, just to say he needed to use the bathroom. And once in a while, I just don't have the patience to try and understand him, especially if he's not making the effort to use his speech tools.

This is the price we all pay for his being alive...no minor feat in and of itself.

It also becomes increasingly clear that it's not just stuttering. There are a lot of little things that say it's more. His current speech therapist thinks he might have something more recently recognized, called "cluttering". I think she's right...to a point.

The truth is, it's just the way Smunch speaks and we need to do as much as we can to give him tools to be intelligible, or at the very least not let it destroy his fragile self esteem. That feels a whole lot more daunting than just putting him in speech therapy.

Smunch has a lot of minor issues, most of them are connected to his being a preemie, I suspect and the speech issues are no different. Stuttering is a neurological problem, they say. He had lots of scary drugs and a case of meningitis before he weighed even 4 pounds. Coincidence? I doubt it. Research suggests that more than half of preemies born as small as he was have learning disabilities by the time they are in school. He seems to be doing fine. But I'm watchful, just in case he needs extra help in the future.

I have a prescription from the neurologist for medication (I've never filled it), I take him to the chiropractor with the idea that it's a neurological problem and good spinal and cranial alignment theoretically helps with neurology. He gets private therapy in addition to speech therapy at school. We'll be taking him for a second occupational therapy evaluation this weekend, with a woman who specializes in "sensory issues". I hope she can help, but I don't know that it'll be any more successful than a chiropractor...which hasn't done a thing for him, as far as I can tell, but he likes to play on their machines.

His teacher recently told me that the other kids are starting to point out his difficulties speaking...loudly and publicly. I asked Smunch about it. He said it didn't happen. I don't know what to make of that. Does he care so little, that the criticism didn't register? Or is he so embarrassed that he won't admit that he's having a hard time? The teacher suggested having a talk with the class about differences. I just don't know.

I know that kids are naive and cruel without necessarily meaning to be. I know they're just in kindergarten. I know I was hoping this wouldn't start happening just yet. I also know Smuch's speech has gotten markedly worse in the past week. Connection? Maybe. But I've stopped trying to make those too. It's an exercise in futility. His stuttering changes so much and so often that trying to figure out a reason is usually pointless.

So, I'm not particularly frustrated. I'm tired though. I'm tired of doing our own speech therapy sessions with him each night. I'm tired of worrying that he'll fold under the pressure of his peers. I won't hesitate to make my own life more difficult if it might make his easier, but I sometimes wonder if the best therapy for my little boy might be just to leave him alone.

The important people in life

I realize it's almost 2008 and I still haven't written anything about Christmas. In fact, I still haven't written anything about the things we did before Christmas. This was one of them. Our local community hospital recently launched a big campaign to make it sound like some kind of medical center of excellence, with slogans like "Tough on Heart Disease, Easy on You." If I sound a little snide, I don't exactly mean to be. Perhaps it is an excellent hospital. I know many people prefer it to our local teaching hospital. I can only say that my L & D experience there was far from stellar...but it was also complicated and ugly and they just didn't seem to be prepared for my method of childbirth (way too early and way too fast).

But, I digress. Shortly before Christmas, I spotted one of these advertisements as we stopped for pizza downtown. Rather than one of the hospital's many heart or cancer specialists displayed larger than life, this one was someone I knew. As much as she's not a close personal friend of mine, I still have very strong feelings about this woman. She had to give me some really bad news about my babies...more than once. But she has my admiration and respect because without her and a whole lot of other people like her, I might have no children at all.

She's the director of the Neonatal Intensive Care Unit (NICU). She took care of Smunch for two weeks of his 14-week hospital stay at the teaching hospital (where neonatologists do two-week rotations) and she is in charge of the NICU where Mam was pulled back from the brink of death after her birth. If I sound a little too sappy, it's not because I have an overblown sense of the drama involved here. It's because that's what life was like with a baby in the NICU. I'm so, so pleased to view that experience only in my mental rearview mirror. And it's getting further and further behind us in most ways.

I can't say I believe my kids came through the prematurity experience unscathed, but I can say that this woman played a very important part in their lives and I'll be forever grateful for that.

So, we went back a week later and took some photos. It wasn't a good hair day, it wasn't a terrific behavior day, even, but I love these and somehow, they feel important.