The End

While I’ve talked about the frequent weight checks for Big Man, I haven’t really talked about all  he’s been going through the last few years, and part of the reason for all those weight checks.

It wasn’t something entirely unexpected, but it was frustrating nonetheless.  Back in late-seventh, and eighth grade, nearly all his friends started their growth spurts. While Big Man didn’t stop growing, he didn’t spurt. Suddenly, most of his friends were significantly taller, while he stayed much the same height. My brother grew late. Spouse grew late. So did my BIL apparently, so we weren’t too worried. But then he fell far off his own growth curve….like REALLY far off his own growth curve. It was enough his pediatrician called in the troops – ordered blood work, and started all the referrals to any specialist applicable. We’ve spent the last 2+ years getting follow-up testing, blood work, bone age scans, visiting endocrinology a few times.

What it came down to is the fact he is just constitutionally delayed – by a bit over 2 years. That means his body is two years behind his chronological age. That’s kind of a big deal for a fourteen/fifteen/sixteen year old. He took it in stride initially, but then when even the “small” kids in his friend group grew taller than he, the struggle began. He never said much about it, but I knew it was hard for him. It was miserable for me to see the difference, to see my little big boy walking around, significantly shorter than most of his peers. I prayed continually for him to grow. Like when  he was in the NICU, we began to celebrate every ounce gained, every part of an inch grown. We watched for any sign he was entering his spurt. Days, weeks, months passed, and nothing.

He’s nearly seventeen. He’s grown almost three inches since January 1st. I really have to look up to him now. His voice has changed. His face looks different – more adult, more defined. He sleeps constantly. He eats when he isn’t asleep. He’s shot up three lines on the growth curve. His ADHD doctor now says he can’t even guess how tall Big Man will be (just a year ago, he was telling me Big Man would maybe end up at 5’9″ or so).

I can’t express my level of relief – moreso for him than anything. I don’t have to see that look on his face anymore. He’s catching up to his friends. We saw his pediatrician last week and she was surprised, but not really surprised. We’ve reached the end of this particular medical journey. He is fully in his growth spurt. Whew. We do have one more visit with endocrinology in September, just to dot that final i and cross that final t.

I’m once again reminded of his NICU days…..in the beginning, in the middle, and even towards the end, it seemed we would never see the day he would come home. The last few years, it seemed we would never reach the end of this delay, we wondered he would ever grow. This child has always done things in his own time, on his own terms. This shouldn’t have been any surprise to me at all, yet it was. But now this too will be put behind us, and I will look up at my getting-taller-every-day big boy, and be thankful.

Finished

Finished – that word applies to so many things today. It’s been the word on my mind most the last few days. Finished. We are finished, we have finished, we will finish, we have yet to finish. Sigh….I’m in a funky place.

Big Man and P finished their school year Friday. P said she actually didn’t want the year to end. Wait, what? From my point of view, it’s been an exhausting, mentally and emotionally draining, dragged out, up-and-down/high-and-low year. I was not sad to see the door close on this one for them.

I am proud of Big Man – he pulled it together enough to have an almost-respectable GPA for the semester. It was a near-miracle, considering how deep a hole he’d dug himself. But he did it. We did have to push, and check in almost hourly to make sure he was doing what needed to be done, but he did it. Oh trust me, his final report card for the year wasn’t amazing, but it was nearly as ugly as it had been. For that, we say “Thank you Jesus!”, and heave a sigh of relief. Pray God he’s figured it out and we won’t have to face these same issues next  year.

After a long season of training (for me anyways  – Big Man didn’t really train at all), we ran the Rock-n-Roll Half Marathon yesterday morning. I was really worried about this one, as my training was cut short due to various injuries. My last 11-mile run was five weeks ago. My last run of any significant distance was three weeks ago. My last run was a week and a half before race day, and that just 4 miles. I spent 10 days gently stretching, icing, heating, and praying it would come together and I’d be able to push through. I had a 2-hour massage. I went to the chiropractor. I faithfully used my foam roller.

Race morning arrived. There was a LOT of frustration early – parking was an unmitigated disaster. It took us nearly an hour to get into the lot from the time we arrived downtown, then we had a mile walk to the shuttle busses. We got on our bus at the time we should have been arriving at our corral. We were in the bathroom line when our corral started, and ended up crossing the start with a corral 9 behind our assigned corral. I’d decided with my training partner to just push for the goal we’d trained for – a 2-hour finish. I knew 2 miles in I wasn’t going to be able to maintain that pace – the three weeks without any significant running had killed me. I slowed to my old half marathon pace and regrouped. Three miles later, my IT bands started tightening and my knees started to hurt. I pushed on, with short stretches of walking, until I hit mile 7 when I knew I’d have to just let go of this race. It became a matter of finishing, and nothing else. I walked when I needed to – which was quite a bit – and ran when I could. There was a downhill at 9.7 that almost did me in. But I pressed on. My training partner finished (I was getting texts for her and for Big Man) – I was at mile 10 I think. Then  Big Man finished. I was closing in on mile 11. I was frustrated, in pain, tired, and so disappointed. At mile 12, I started running again, determined to finish the race running. I knew there was nothing structurally wrong with my body – just IT bands that like to knot up and make it feel like there are knives going into the side of each knee – and so I pushed, and crossed the finish at 2:41 – my worst half marathon time ever, by 16 minutes. I headed to the medical tent and had my knees wrapped in ice.

My training partner had a PR, under 2 hours. Big Man didn’t meet his time from last year of 1:58, but he really didn’t train at all (oh to be 16!). He finished at 2:09. But we finished. The race is more about the culmination of training – a cap to a season. I’m trying to let it go, the disappointment of a bad race. Training had been going so well. I’m trying hard to focus on the fact I ran my 8th half marathon and not everyone gets to say that. I am so proud of Big Man – there were 114 boys on the course in his division. He finished 51st of those 114. That’s pretty awesome, isn’t it? Out of 30,000+ people running (between the full, half, and half-relay), only 114 15-17 year old boys were running, and one of them was my son. I love that I got to share yesterday with him. What’s really fun  is being able to talk about it with him, remembering miles and sections like a football player will remember a play, a golfer will remember each hole on a course, a pitcher what pitch got launched out of the ballpark by which hitter. I love that shared experience. I’m proud of the fact he fought when things started to hurt; he didn’t give in when the course got rough, when he knew he wasn’t going to match his time from last year, when he got tired and wanted to quit. He finished. We finished.

Eleven more school days for Little Man. Then we will be finished completely with this school year. He’s hanging in there. He has had some increased anxiety – it’s so typical of this time of year for him. We will fight through, and then breathe another sigh of relief. It is so weird to manage two out of school and one still in, especially for the significant amount of time 2.5 weeks is. We’re almost finished.

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.

The place we’re in

I came across an autism parenting meme on Pinterest the other day, and I had to save it, because it perfectly describes exactly where we are right now with Little Man. The meme said, “If things are going right, don’t touch anything, don’t change anything, in fact maybe don’t even breath. Celebrate it for as long as it lasts.” Amen, and pass the weighted blanket. This is where we are. This is where we’ve been for a few months now. I’m afraid to even type that out loud, for fear it will all come crashing down, and we’ll head back into the storm once again.

Most of his life, I’ve felt I didn’t have even the slightest handle on Little Man. Every time I’d get hold of one straw, everything would change again. He’d have new triggers, new sensitivities, new food aversions, new behaviors. When that baseball memory came up in my Timehop the other day, I read all the “rules” we’d given him before sending him out onto the field…..Don’t make dirt angels behind second base, don’t fill your hat with dirt and put it on your head, don’t throw your gatorade bottle at any of your teammates in the dugout, don’t pick the grass, don’t look for bugs. So. Many. Don’ts. I was a nervous wreck every game, every practice. We never knew quite how it was going to go. That was much of life with him.

The summer before he was diagnosed autistic, I spent every minute of every day micromanaging his life, trying to keep him from melting down or having a tantrum. I was exhausted. I believe he was too. I spent a few years on high alert 100% of the time. Third grade was relatively calm, but in fourth grade, we went right back to that hell. Fifth grade was good. Sixth grade was a nightmare. Sensing a theme here? This time last year, I started counting down the days left until summer. I was beat down. The beginning of this year was much better, and since Christmas, he’s been amazing.  I’m not on high alert all the time.

Sure, we have our routines and tools in place. But it mostly runs like a smooth machine. We just know what to do and how to do it. Am I feeling safe and secure here? Um, no. I’m like that meme….don’t change a dang thing, don’t touch anything, don’t even breath for fear of upsetting this precarious balance. That’s life with autism.

A friend told me long ago – and I’ve written of it too – that life with autism is like living in Seattle. It rains….a lot….but then you get those sunny days, and you just revel in them. The rain will come again, and it’ll be dark, but the sun will come again, for however long. The older he gets, the more tools we’ve given him, the more he learns and develops, the more sunny days we have.

The place we’re in now, it’s still that Seattle, but the sun in shining brightly. If I’m honest, though, I’m not really breathing, definitely trying to keep everything exactly status quo, and I’m seriously not touching any part  of his routine. I am enjoying every second of the sunshine. IMG_0560

Weight For It

When you have a micro-preemie, how much he weighs is an obsession from day one. Every ounce, or part of a ounce gained, is a huge win, a step in the right direction on a very long journey. We waited, so very anxiously, to see his weight on his chart each morning he was in the NICU. It seemed to take forever for him to get back up to his birth weight of a whole two pounds. We had a mini-party when he reached three pounds. When he came home at 6 lbs 7 ozs, he seemed huge compared to the day  he was born, that is until I took him to the pediatrician for a weight check and initial visit a few days after he came home from the NICU. Surrounded by “normal” full-term babies, he diminished.

Weight checks have just been part of his life, his entire life. He received synagis shots October through April the first two years of his life to fight him getting RSV. That meant we were in the pediatrician’s office much more than other infants and toddlers. And he was weighed every single time. I always had anxiety on doctor-visit days, and would hold my breath until his weight came up on the scale. His growth chart didn’t look like any other I’d seen. He had his own way of doing this, his own growth curve.

When he was diagnosed with ADHD, and we began medicating him, regular weight-checks were re-introduced. Blessedly, the medication didn’t seem to affect his appetite. But then he fell off his own growth curve a few years back. Bloodwork, visits with specialists, bone-age scans, and even more frequent weight-checks ensued. We pushed calories, good calories, as best we could. I could still wrap my hand around his upper arm. I found myself back in that place, the one I’d been in while in the NICU…breath-holding every time he had to get on the scale or be measured. Failure to thrive, malnourishment (oh yeah, that one really pissed me off at the same time it nearly broke me), constitutional delay….all those words were thrown at him. Few asked what dad had weighed at the same age. And every time, I felt like a failure. I hated to see the look on his face when there were no gains, or the gain was too little, when he hadn’t grown since the last visit three months previous.

He has a weight-check appointment today.  I know he’s grown, thank God. But has he gained any weight? We’ll find out in a few hours. I’ll be holding my breath, and my heart will get that little hitch. Even knowing how much and what he eats every day, I wonder if it’s enough to make a difference, to make it so I don’t have to hear those words from the doctor, see that same number on the scale.

Send some heavy thoughts this way. And weight for 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.

The Hardest Thing

Our kids have various social media accounts. We have rules – they have to let us be “friends”/follow them; we keep their passwords; if we tell them to take something down, they must comply (they’ve always been conservative); they can’t “friend” anyone unless we know who it is. We collect their phones every night. But all this isn’t really the point of my post today. Because I am “friends” with them, I do see what they post. I find it an interesting look into their days, their thoughts, in addition to a layer of protection over my babies.

Yesterday, Big Man posted a photo on Instagram of his Rock n Roll Half Marathon medal. He’s understandably proud of his accomplishment, and acknowledged the challenge of the race. He said it was the hardest and most rewarding thing he’s  done in his life. I’m so glad he sees it that way. I am thankful he doesn’t remember the truly most difficult thing he’s done in his life….that of surviving a birth 3.5 months too soon. He doesn’t remember having to learn to remember to breath. He doesn’t remember all the times he forgot to breath and his heart-rate would plummet. He doesn’t remember the blood transfusions. He doesn’t remember the eye tests for retinopathy of prematurity (I’m scarred for life by that one), the hearing tests, the ultrasounds on his head to watch for and then keep an eye on brain bleeds, the tape being ripped off his face by an insensitive night nurse, the daily weigh-ins, the numerous lines running to all parts of his body, the days he spent under the bili lights, the way the CPAP would push up his tiny nose; the various antibiotics he had, the tests too numerous to count, the times I would sit there by his isolette crying my eyes out, the day I fled the NICU when he had to have another transfusion and my heart couldn’t take sitting there and watching. He doesn’t remember me begging God for my son’s life. He doesn’t remember me begging God to block all those days from my son’s memories. He doesn’t remember.

That tiny boy was the bravest person I’d ever met in my entire life. He fought so hard, every day, for his life. He did everything on his terms, much to our frequent frustration. He obviously loved openly, so happy when any of his nurses talked to him or held him. He defied odds on a daily basis. He still defies those odds. But he won’t ever remember the truly hardest thing he’s ever done in his life. When I saw his post yesterday and read his words, I was so relieved that in his mind, that race was the hardest thing he’s ever done, and the most rewarding. For me, he is the most rewarding thing I’ve ever done. And I hold enough memories in my heart for the both of us.