This Boy

My dear, sweet, precious boy…..How can it be you will be seventeen years old tomorrow? I’d swear it was yesterday I heard your tiny cry for the first time. But here you are, taller than me, voice deepening, you’re driving, we’re talking college plans. You’ve grown up when I was busy being a mom.

You made me a mom first. I’ll never forget the first time I heard you, and knew you’d be a fighter. I won’t forget the first time I saw you, and it seemed impossible you were the same baby that had been inside of me just a few hours earlier. I won’t forget the first time I touched you, and you held on with all the strength in your tiny hand. I won’t forget the first time I held you, finally at peace, finally able to breath after five days of watching you through a 2-inch video camera screen. Was I scared? Oh yeah…I was terrified. I wasn’t ready. You certainly weren’t ready, but there you were. You taught me from day one things were going to happen on your terms and in your time. You’ve taught me more patience than I probably cared to ever have. You’ve taught me how it feels to live with my heart outside of my chest. You helped me learn to let things go, those little things that just don’t matter as much.

I love watching you, even still.  You walk into a room, and own it, whether you believe it or not. I love the way you connect with people.  I love watching people’s faces light up (especially your grandmothers, aunts, and great-aunts) when you give them one of your famous hugs. I love your quirkiness, your laugh, your spirit. I love that you’ve learned to battle your way through challenges, how to pick yourself back up and keep going. You will always be my first baby. You lead the way for your brother and sister.

I’ve walked those sixteen days over and over each year…..those days leading up to your birth. Your life is a gift. Your journey gave me a strength I didn’t know I had. You taught me how to be a fighter, even against the biggest odds.

Do you make me crazy sometimes? Uh, yep, ya do. Trust me, I thank God for even that.

Tomorrow is your birthday….seventeen. I don’t know why that seems to be a milestone, but it feels big to me. Big changes are coming, and you’re just on the verge of adulthood. I’m almost done the biggest part of my job as your mom. But know that no matter how old you get, or how tall you get, I will always see that little baby boy when I look at you. I love you. I’m proud of you. I’m honored and blessed to be your mom. Happy Birthday!

Your Guess

It’s been pretty quiet on the autism front in the Herd household this year, thank the good Lord. I said it earlier this year, but it’s worth saying again….we desperately needed a quiet, drama-free year for our Little Man. Last year was dreadful, draining, overwhelming, awful. But you know in the wonderful world of autism, there are lots and lots of roadblocks, speed bumps, dips, turns, and storms. They’re not unexpected, but still disappointing when they happen.

Little Man has almost five weeks left of school. Good golly – that just sucks, especially as the bigs are out in two weeks. He knows the end is near. They’re in the middle of the standardized testing. He wants it over with quickly. Routine has been busted a bit at school because of the testing, but he’s also aware the end of the year is coming,  which means an even bigger routine bust. He does not do well with changes in, nor lack of, routine. I see his anxiety levels rising. I see some old behaviors returning. I see less tolerance and patience from him.

I’ve had a couple emails from his SAI at school letting me know he’s pushing back on work, he’s spending more time out of the classroom again, he’s pacing, his breathing is elevated. She wanted to know if I had any clue why this  might be happening. Uh, nope. Your guess is as good as mine. I could point to any number of things, but there doesn’t seem to be one thing we can say, “Yes, that’s what’s making him behave this way right now.”

We keep reminding him of his tools. We keep reminding him what he’s capable of. We keep reminding him the many successes he’s had this year. None of that changes whatever’s going on in his head, nor how he deals with life. So we do what we can at home. They do what they can at school. We pray this is just a blip and not a sign of long-term struggles.

I know better than to borrow trouble, but next year is his last year of middle school. There’s a new building with classrooms for the 8th graders. They will do things a bit differently for 8th grade than he has in sixth and seventh. He will have to participate in his IEP meetings. And the transition to high school will start. He knows it’s coming. I can’t help but think that may be hanging over him a bit, even though it’s in the distance. I know it’s hanging over me.

So we hang on for the ride the remainder of this school year, hoping this is just a temporary dip. But as for what the root cause is of this particular dip, your guess is as good as mine. And thus goes life on autism street.

It’s his, but he doesn’t remember

I met with a  new local March of Dimes staff-person last week. As is typical, I shared why we volunteer, told our story – how we’re connected to the mission of the organization. She asked if Big Man does his own fundraising, tells his own story. Um, no. He walks, but when it comes to the talking, he leaves that to me. Why? Well…..it is his story,, but he doesn’t remember it, thank the good Lord. He knows my version of his story. He’s heard it a billion times. He did live it, but he has no memory of it. The baby in all the photos is him, but like any other baby, he has no memory of his early years, much less his too-early, dramatic entry into the world.

He does get why  his story matters. He does  understand prematurity was, is, and always will be part of who  he is, but all the emotions attached to his premature birth belong to others, not to him. Does that make sense? He lived it, but we lived the fear, guilt, pain of having failed him in any way. He was the feisty fighter who made it while we stood by, watching and praying. He did it, but we are the ones who remember.

He compared it to when people say I’m strong for having gone through all we’ve gone through.  My response always is, “You never know how strong you are until you have to BE strong.” He just lived – he doesn’t see anything amazing in that coming from him, but instead places the credit upon us, his nurses, his doctors. I say he had a strong will to survive right from the very beginning.

I keep encouraging him to own his story. I think he’s there now. He  had to write his own obituary in his psych class recently.  He did include his premature birth in his narrative. I was a little surprised by the inclusion. If you don’t know his story, you’d never guess his story. You can’t look at him and say, “Oh, yes, he was a preemie.” You can’t tell by looking at him, in other words. Well, I have to edit that a little bit – many preemie moms I know can tell by looking at a kid, but we know what to look for as we see it in our own preemies. The general population can’t look at him and know, without being told, he was born 3.5 months too soon.

I’m thankful he doesn’t remember at all, this story of his. I’ve always said I remember enough for both of us. But I’m glad he’s owning it, making it his, because it is his, even if he doesn’t remember one second of it.

Is this the next shoe?

I spent the first five or six years of Big Man’s life waiting for the next shoe to drop. When you have a micro-preemie, there are lots of shoes involved. Because I felt like we’d escaped his early birth and subsequent NICU stay relatively unscathed (physically and developmentally), I was certain there would be plenty of shoes falling from the sky. We couldn’t be that lucky, right?

He was diagnosed with high muscle tone on his left side when he’d been home just a few months. High muscle tone can be an indicator of cerebral palsy, often a result of very premature birth. We used massage and physical therapy, and within a few months, the high tone was gone. He had a speech delay at 15 months. We used sign language, sang and read to him constantly, incorporated some speech therapy, and by 2.5 years, we were begging him to stop talking. At four, he was diagnosed with reactive airway disease, which became full-blown asthma at 5 years old.This wasn’t unexpected – there was damage to his lung tissue from the oxygen he needed to survive. It was still a big speed bump for us. He would go from zero-to-pneumonia within a matter of hours every time he got a cold, an allergy flare, or the flu.  But then daily maintenance meds, and extreme vigilance became the norm. We tossed aside that shoe. At eight, he was diagnosed ADHD, and we learned he had something of a visual processing disorder. He got meds, and he got glasses. He became much more successful in the classroom, much more confident in himself. He was at 80% higher risk of ADHD just by fact of his prematurity. Genetics also played into that hand.

He’s a small guy. When he fell off his own growth curve a couple of years ago, we started with x-rays, bloodwork, a trip to the endocrinologist, protein shakes, diet changes, etc. Turns out he’s just dealing with delayed puberty. Again, fabulous genetics, from both parents. But it was a process. And I couldn’t help but wonder if this wasn’t another shoe. You know that growth chart doctors parade in front of parents at every visit? Yeah, that. Well, he wasn’t even on that chart for height or weight until he was well past three years old, and even then, he hovered below 3%. He still hangs out down on the lower end. His BMI isn’t close to being on the chart. That teeny, tiny, 2 -pound, 15 inches long baby is still a long, skinny young man. Another shoe….a handle-able shoe, but it still feels like a shoe.

With some consistently funky bloodwork, we were sent to a specialist at Children’s who put him in a study. Part of that study was a body scan, including bone density. I thought nothing of it. The initial purpose of the scan was to compare muscle mass, bone mass, and fat mass in his body to determine if he were at healthy levels. Do you see another shoe? I didn’t, until the results from the study came back. He has severely impaired bone density. I didn’t know what to do with that. I was calm about it for a couple of days, then kind of started to process what that might mean. Impaired bone density = easily broken, right? He’s an active kid. And he’s a normal kid. Rough-housing, falls, trips when he’s racing – they’re all normal parts of his day. So now we have supplements, and a trip back to endocrinology.

I thought  I was doing okay with this. It’s just another bump in the road, right? But then my preemie-mom-mind went there….Could this be another shoe? He’s a 16 year old, former 26 weeker. He’s kind of on the front end of micro-preemies being considered viable, and fought for. The medical community is still learning the long-term outcomes of saving these littles. Trust me, in NO WAY am I saying not to save them, give them a fighting chance. I’m just saying, when your baby is born at 24, 25, 26 weeks, they can’t tell you how that’s going to look when he’s 15 years old, 20  years old, 50 years old. Of course, not any one of us, preemie or no, knows what our lives are going to be like long term. So there’s that. But I couldn’t help but ask, could this new thing, this impaired bone density, be a result of  his premature birth? Is this some outcome they didn’t know could happen?

I wouldn’t change a thing done to save him way back then. Oxygen, steroids, lipids, caffeine, blood transfusions, vitamins, and antibiotics were a way of life for 93 days. Those are the things that saved him. But did one of those things do this? We’ll never know. And in all honesty, it doesn’t matter. I wouldn’t undo it. I have my baby. He came home, and he’s a thriving, normal teenager.

I do see that shoe hovering over my head. I keep looking up at it, waiting for it to fall. I don’t know if this new wrinkle is a shoe, but when you have a micro-preemie, pretty much everything the rest of your son’s life will look rather shoe-like.

GAH! with the medical labels already!!

Big Man had a doctor’s appointment today with a different pediatrician in our group.  His regular pedi wanted to get a second opinion on his ADHD medication regimen. He’s been on basically the same routine of meds since he was originally diagnosed at age 8. With teen years, and the immense difference between elementary/middle and high school, she wanted a second take on what we’ve been doing. We’ve seen this other doctor before – not for our standard physicals, ADHD, or asthma follow-ups, but when one of the kids is sick or injured, or when our regular pedi is out of the office.

Big Man and I were both excited to see the scale and height had moved up a bit even in the short amount of time since his last visit. The joy we felt at the (albeit small) gains was quickly shot down. Words I hate were said…..Failure to Thrive, and then a new one for us…Grossly Malnourished. The. Hell. I came *this* close to tears right in that very moment, with the doctor looking at me, and continuing to ask questions.

Big Man is not big. He never has been. He entered this world weighing two whole pounds, which was actually considered “big” for a 26-weeker. He didn’t hit the “normal kid” charts until he was three years old, and even then, he was on it by the smallest of margins. He’s always had his own rate of growth, but he always grew. Then a couple years ago, he fell off his own growth scale. That’s when all the fun started. But I have spent basically his entire life watching everything that goes into him – pumping up calories every way we can. We walk out of nearly every doctor’s visit with that pamphlet on ways to help your kid gain weight. He eats!!! Trust me, he eats. He eats better than my other two combined. Yes, he eats crappy snacks, which I don’t really worry about because they’re still calories and he can take it, but he also eats really healthy stuff every day, all day….eggs and oatmeal for breakfast, peanut butter and jelly for lunch, good helpings of chicken, pasta, tacos, steak, etc for dinner, fruit for snacks, and he’s a great milk drinker.

He’s had labels his entire life as well…micro preemie, very-low-birth-weight, developmentally delayed, high muscle tone, speech delayed, developmentally caught up, reactive airway, asthmatic, visual processing disorder, ADHD, failure to thrive, constitutionally delayed…..I’m used to the freakin labels. But Oh My, am I over certain ones. The “grossly malnourished” slayed me today. Let’s layer the guilt on mom, please? Just a little bit more? That stupid label makes it sound like I intentionally set out to not let my kid eat, grow, gain weight. It was a sucker punch I didn’t see coming, and it was tossed out there without a thought. My son looked at me as soon as it was said, and I think he knew what I was thinking, how much those words hurt.

I have spent sixteen years doing everything I possibly could to make sure that kid grew, gained weight, was healthy, well-fed, taken care of. I have fought hard for every single ounce since the minute I started bleeding. I still hold my breath every time he gets on the scale at the pediatrician’s office. I still cringe when I see him next to his peers – so thin, and still waiting to grow. My heart broke today. Enough with the medical labels, please? I get they’re necessary in some arenas, but us mommas don’t really need to hear or see them.

Why I posted that picture

As I’ve shared before, I’ve been struggling mightily with negative self-talk, self-image, and self-esteem probably more than any time since I was just out of college. There’s something about this 40+ age that throws the body into chaos. In spite of a regular, strenuous workout routine, and watching (most of the time) what I eat, not only is weight not coming off, it’s moved around, and keeps creeping up. It’s frustrating, defeating, intimidating. I’ve been working hard to a) overcome the negative thought process, reminding myself daily that I’m healthy and b) do what I can to maintain rather than focus on losing or gaining and c) keep a good attitude towards it all, especially when the Princess is around.

Yes, I ran a half marathon on Sunday. Do you know I still “felt fat” when I was done? I mentally chastised myself for my post-race lunch, once I’d eaten it, in spite of the fact I’d just burned about 1100 calories.

I’m particular about the pictures I post on social media of myself, and those others may post of me. Like most people,  I want the most flattering pictures posted. But Sunday, I posted a photo of me and Big Man following our finish. I didn’t like the photo. I didn’t look my best – all sweaty and gross from just running 13.1 miles – and the angle wasn’t all that great. My hair was pulled back in a pony, with a headband. I’m not pretty or cute when I run – it’s all about function (although I did make sure to match my headband to my shirt and shoes). I looked at the photo before I put it up, and cringed. But I posted it anyways. I needed to post it, for myself, and because that moment was bigger than how I feel about myself.

I’d done something not everyone does – I’d trained for, and run, a half marathon. And I’d run it with my 15-year-old former 26-weeker. And I am a healthy person, darn it. I posted it to remind myself healthy doesn’t equal rail-thin or skinny. Healthy equals me taking care of me. Healthy is mental as well as physical.

I still fight the battles, almost every day. I try to push back against the thoughts of “If you eat this, then you have to do that,” or buying into extreme diets and exercise plans that focus on numbers rather than the whole person. I posted that photo to remind me I am okay. I don’t have to see a certain number on a scale to be a healthy mom/wife/woman. The moment that photo was taken wasn’t about me fighting an internal battle, it was about sharing something incredible with my son. Finishers

Fifteen

We had cheer uniform fitting for the Princess last night. It really hit me – she’s starting high school in a few short months. As a cheerleader, she will be in the spotlight, and smack in the middle of the high school social whirl. And as long ago as it was, I remember being fifteen, being in high school, and  there is so much I would tell her, so much she won’t hear.

Primarily, I would tell her that high school isn’t the whole world. It feels like it when you’re in it, but it truly is such a small chunk of your life. They are formative years, but they don’t create a person who doesn’t change from then on out. I am not the person I was when I started high school, not the person I was when I finished high school. Oh, yeah, some of that is there, always part of me, but I’ve continued to grow as a person.

We talk about boys. Thank goodness she still talks to me about boys. I had to laugh as yesterday she told me she notices boys, notices if they’re attractive to her, but then notices how immature they are. I smiled, and let her know that definitely doesn’t change in high school.  She giggled.

It’s really interesting, and completely terrifying, to watch it from this perspective. There’s so much ahead of her, so much potential for heartbreak and disaster, so many dreams to be pursued and realized, so much reality to hit. There’s an excitement, but also a sadness, a nostalgia for the little girl with the long blond curls and a fondness for mud.  I’m excited to watch what the next four years will bring. I’m anxious about what she will face, how she will handle it. My heart aches to keep telling her there’s so much more to life than high school. My momma instinct wants to sit her down and tell her everything I think she will need to know to navigate high school waters, but my momma brain says she won’t hear it.

We were driving home from the studio last night, and Taylor Swift’s song, “Fifteen” came on. I wanted to pour every word into my Princess, wanted to make sure she heard what the song was saying, because even though it’s a song, it has so much wisdom in it. My prayer was that even if she won’t listen to me specifically, she might listen to those words and remember them.