“You should just be grateful”

I was talking with another preemie mom this morning about our precious gifts, the NICU, how terrifying and devastating and overwhelming it all was. She said that someone had told her, once she brought her daughter home, she should “just be grateful.” What in the ever-lovin? But yes, I’ve heard the same. I should just be grateful – my son is here. He dodged pretty  much all the bullets. He’s amazingly perfectly normal and healthy. Damn right, I’m grateful, every single day. But I’m also sad, heartbroken, guilt-ridden, maybe a tiny bit angry still for all we lost. Don’t ever tell a preemie parent they should just be grateful. You have zero clues.

Seventeen years later, I can still cry over his photos. I can, and do, still frequently cry over all he’s able to do. Every milestone is that much different because I  know very well what could have been, what probably should have been. I pull out his first hat, and am just stunned that it once was too big for him, and my fist barely fits into it. I see his first diapers (clean ones of course) and know they’re the size of a credit card. For real. I remember clearly how it felt to hold two pounds in my hands.

I think about the new mom that I was…..wheeled past the registration desk and all the people waiting in the ER, straight to Labor & Delivery, where I nearly fainted to hear his heartbeat on the monitor, so sure I’d been he was already dead inside of me. I think about all those stats they threw at us each day – his prognosis for survival, then his prognosis for survival without lifelong debilitating disabilities. I think about how much pain I was in, running a 104 degree fever for 16+ hours, knowing there was nothing we could do and that he was safer outside of me. We saw Wonder last weekend. That moment they whisk the baby out of the delivery room, no words said, just silence when there should be joy and laughter and the sound of a newborn crying, I started crying. That’s what it was like. That god-awful silence…..I hate that memory. I hate no one even told us if we had a boy or a girl. I hate that I know how many grams he weighed when he was born (under 1000). I hate that a hospital-grade breast pump was rolled into my room not two hours after giving birth – it became my companion for three months, every two hours. I hate I didn’t even know how to find my son in the NICU when I was finally released. I hate that I went home every night from the NICU to sit by an empty crib….a crib that waited 93 days to be filled.

Don’t tell me I should just be grateful. I am grateful. But I also hurt, I also grieve what we lost, the horrible things we faced that no parent should face. Don’t ask me to be grateful for that. Please. I wouldn’t wish prematurity or the NICU on my worst enemy. I’m grateful – my beautiful, precious miracle child survived. That is amazing. He is a joy. I am thankful and very aware our blessings. But dammit – nothing, no amount of time, takes away the scars from that experience.

Dark Places

November is Prematurity Awareness Month. I’ve been participating in a 30-day photo challenge, with a list of photos from our NICU time….everything from photos of him with all his tubes, to his feedings, first outfits, and so on. It’s been something of an emotional haul, going back through his baby scrapbook and all the other photos we have from those 93 days. Most days these days, I can recall his early birth and NICU time without getting caught up in the horror of that time. I have a normal, healthy 17-year-old young man. I have much to be thankful for, and he miraculously came out the other side, so those bad memories can take a backseat for the most part.

Here’s the thing….once you’ve lived that, you’re changed forever. There are deep scars that remain. And once in awhile, something will happen…a song, a sound, a smell, a photo…will take me right back to that time. Once in a greater while, something will really get to me, and I go to those dark places I rarely allow myself to go. It’s like a punch to the gut, my breath catches, and my heart races with grief and fear.

Those dark places are pretty intense and painful.  I hate that I fully believed my son was already dead the minute I saw that toilet full of blood. I feel I’d lost faith in him, his life, his will to fight. It messes with my mind, brings up all the what-ifs, should haves, could haves, would haves.

I was away from him for five days following his birth. God those days haunt me. Logically, I know it was completely out of my control, and it could have been so much worse. There was one point, due to the need to properly treat the severity of my staph infection, the doctors discussed keeping me where I was for four weeks so they could monitor my recovery closely and administer the strong antibiotics I needed in a controlled environment. I can’t even imagine what that would have been like…four weeks locked up in that hospital, ten minutes away from my son’s hospital, unable to see him. As it was, five days nearly drove me insane. I wasn’t there for him. Spouse saw him, touched him, held him, knew how to find him in the NICU, knew his doctors, knew the routine, knew what our son’s face looked like. Spouse had to show me all of that when I did get out. I still feel guilt over that. Stupid guilt, yes, but guilt nonetheless.  I hate those five days. I hate how they make me feel when I let myself go to this particular dark place.

When I did get out of my hospital and went to his, they could have told me any boy in that NICU was mine and I would have believed them. I had only seen him for a few minutes before he was transported to his NICU. Most of his face was covered in tape. I hate knowing I wouldn’t have recognized my own child if  you’d lined up five boys in their isolettes in front of me.

I didn’t spend 93 days and nights in the NICU with  him. The world continued outside, and I was encouraged to take care of myself…..go home at night, get rest, do life as much as possible. I dreaded leaving him every evening. I hate that I left him to the care of doctors, nurses, and machines while I went home and did normal stuff….bought groceries, made meals, cleaned the house, fed the dogs and cats, watched tv, and slept. I hate that the world went on, that I participated in any “normal” while he lay there battling to live.

There was one point he was developing an infection of some sort. They needed to do a clean blood draw, and then transfuse him. I broke down and fell completely apart. He was maybe three weeks old. I’d only been in the NICU for a little over an hour that day, but I left. I couldn’t take it. I could see his tiny face, red with anger and hurt. I could hear his muted cry, and I couldn’t take it. I went home and just cried…I’d failed him again. I wasn’t there for him again.

See…..dark places. They, as much as anything else, are a part of premature birth. It is rare I let myself go to these dark places. They are my worst memories, my worst fears, my deepest pain from his prematurity. They shouldn’t matter anymore, shouldn’t affect me anymore, but they do……very rarely, but they do.

Reach Back

When Big Man had been in the NICU just over a week, and it felt like we would never bring him home, his neonatologist introduced us to a family whose 26 week baby boy was just getting ready to go home.  Dr. S wanted to give us hope, let us know it was possible, there was a light at the end of the tunnel. That was the first clue we had an amazing doctor taking care of our boy. I am forever grateful to him for that introduction. It did give me hope – hope that carried me through so many bad NICU days. Later, close to the end of our own NICU stay, Dr. S brought a new family to meet us, to let them know there was hope, there would be an end to their own NICU stay, that they could make it, and our journey was the impetus for their hope.

Then when Big Man was four, I found an online community for NICU families. I knew I had to make sense of his early birth, and one way to do that was to reach back, and help families just beginning the journey. I shared our story repeatedly. I was honest about our journey to that point, and the challenges we were still facing. It became a mentor-and-be-mentored opportunity…..moms with preemies older than mine reached back and helped me; I reached back to pull up moms with preemies younger than mine. We built a community, and some of my closest friends today were formed then. And among family and local friends, I am the bedrest/premature birth/NICU “expert”.

My days were dark when Little Man was first diagnosed on the spectrum. It seemed there was an entirely new language to learn, new processes to develop, a new routine to become acquainted with. I was overwhelmed. I was heartbroken. I was terrified. It all seemed too much. But once again, there were people in my life further into the autism journey who reached back, shared stories, gave advice, suggested resources and different therapies, and offered a shoulder to lean on.  I still lean on them to this day, as they are still ahead of me on this  particular path.

We are six years into this life on autism street. We have some experience under our belts. We know what usually works. We have our toolbox. We know what to avoid, when to push, when to hold back. We know we can’t parent him out of being autistic, but we can parent him through it. Do we have absolutely shitty days, as we’ve had recently? Oh heck  yeah. Being an expert on MY autistic kid doesn’t mean we don’t still face many difficult battles and challenges.

Again, though, I feel a responsibility to reach back to those just starting this journey, to once again share our story, mentor, suggest, provide resources, let them know what we’ve learned and used to get to this point. In that reaching back, I find hope, and I find a purpose I can handle. It doesn’t make me happy he’s autistic, but it just helps me make a little bit of sense out of it. I wouldn’t wish autism street on anyone, but if we have to be here, we may as well help each other through it, right?

What this day means

It’s been seventeen years since that day, and no matter how far we’ve come, this day is a sucker-punch every single year.

The minute we found out we were pregnant with Big Man, after more than 18 months of trying, a year of fertility treatments, and one early miscarriage, I started dreaming and imagining. I knew exactly how it would go…..I never thought anything would go wrong. That just wasn’t even on my radar, not for one second.  I firmly believed once we were past the first trimester, we were in the clear and it would be smooth sailing from there until the day my newborn was laid upon my chest.

That moment, on September 6, 2000, when I looked down into a toilet full of blood, my dreams were shattered….dreams of a picture-perfect, full-term pregnancy and birth. Those dreams were gone forever, replaced by fear, guilt, the possibility of death for my child as well as myself…..reality became steroid shots to help my baby’s lungs develop sooner than later, multiple ultrasounds, strict hospital bedrest, being away from home for who knew how long, and the lovely effects of magnesium sulfate. Reality became long, lonely hours in a hospital room. Reality became odds and percentages. Reality became praying every day for one more day. Reality became the knowledge that our baby was likely going to come too soon, too small. Reality became knowing I would never, ever take pregnancy for granted again…not for myself, nor for anyone else.

My son is here, seventeen years later. It was a battle, but he’s here. And prematurity does not end when you leave the NICU. His physical scars are minimal. My emotional scars are forever. I know exactly the fight my brave boy has inside of him because I watched him fight every single day. I know just how stubborn  he is, because it’s been his timeline from day one for every single milestone.  I know how tender-hearted and caring he is because I see the hugs he gives everyone, how he connects and relates to people. I truly believe that comes from him being handled by so many caring, loving nurses for three months. I know his eyes don’t close all the way when he sleeps, and I know he holds his hands in loose fists, with his thumb out, because I spent 93 days watching him intently, especially as he slept.  I know the long, narrow shape of his head is due to him laying on one side or the other in his isolette and then crib for months on end (and is a common look for preemies who do extended NICU time). I know more medical terms than most lay-people, because we lived in the medical world for a long time.

September 6th, especially when it falls on a Wednesday, will always be a pitfall for me. It will always bring back the worst of the memories. It marks the beginning of a journey……

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.

It didn’t feel right

I remember distinctly the first, and the second time, someone called me “Mom”. It was hours after Big Man’s birth, and I was being wheeled to his bedside just before he was transferred to his NICU. A nurse said, “Here comes Mom.” I looked around. I didn’t feel the least bit like a mom. I certainly didn’t feel like this baby’s mom – I’d failed him in every way in my mind, my body booting him out well before it was time, not protecting him the way I should have. There was so much guilt wrapped up in that word, “Mom.”

The second time I was called “Mom” was five days later, when I finally got to see him again. I walked up to Big Man’s isolette, and his  nurse whispered to him, “Your mom’s here.” I still didn’t feel an ounce his mom. I had been pumping every three hours faithfully since his birth days earlier. Spouse had brought video of him for me to watch every day. I’d signed the form for his birth certificate. But I still didn’t believe I was a mom. Everything about the process was wrong at that moment in time.

I was afraid of my child. He was so tiny. He was connected to so many tubes and wires. His face was covered in tape, his eyes covered by goggles to guard them from the bili lights he was under for jaundice. In my heart, it was my fault he was laying there, when he still should have been inside of me. I held him that night. He was too small for me to hold in my arms, so I held him on a pillow. One of my biggest heartaches is that they could have put any baby boy before me and told me he was mine, and I wouldn’t have known the difference. I’ve never said that out loud before.

Days passed. I spent hours every day next to his isolette. One day, I saw him kick out one leg, stretching beyond the boundaries of his cuddler, and I realized that was the exact same leg, the exact same motion he’d made while still inside of me. I connected the baby in front of me with the baby that had been in me. Suddenly, the name, “Mom” didn’t seem so wrong. His primary nurse encouraged me to take an active part in his daily care, even if it were just to take his temperature a couple of times a day before diaper changes. I gained faith in myself, and started to not flinch when someone would call me “Mom.” Eventually, I was the one changing his diapers, flipping him from side to side, watching his color instead of the machines so much, even occasionally pushing his feeds through his feeding tube. Once he graduated to an open crib, and was off the vent and CPAP, and able to be dressed in more than a diaper or hospital t-shirt, I changed his clothes as well, and then gave him baths. I read to him. I talked to him. I held him. I grew into my Mom name. By the time he came home, three months after his birth, I knew him, I knew me as his mom.

The guilt never leaves…the guilt over his birth, the guilt over being afraid of him, the guilt over not knowing him, the guilt of not being there for him his first five days of life. The first time I was known as Mom, it didn’t feel right. It took me awhile to get there. I don’t know if that hurt ever quite goes away.

And I thought that was hard

Big Man was born 3.5 months too soon, and spent ninety-three days in the NICU. I spent countless hours driving back and forth to spend countless hours sitting by his isolette. I watched him forget to breath, watched his heart rate drop, watched him turn gray, watched him battle his own infections, watched machines keep him alive, watched him fight to survive. And I thought that was hard.

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Big Man on his birth day

Big Man came home from the NICU, and we had a home health nurse out every other week, a developmental specialist out every month, bi-weekly doctor visits for weight checks, monthly doctor visits for synagis shots to keep him from getting RSV. My life, my schedule was not my own. He didn’t want to be put down, ever. I had to learn to let go of my want for routine, schedule, time. And I thought that was hard.

When Big Man was four months old, I discovered I was pregnant with the Princess. I faced a pregnancy certain we were going to be back in the NICU. I was full of fear and anxiety. I saw a specialist OB (perinatologist) every other week, until we got past the gestational age Big Man was born. Then she had to be induced at 41 weeks 1 day. And I thought that was hard.

Big Man was developmentally nine months old when the Princess was born, so I basically had two infants under one roof. They are twelve months and nineteen days apart. Sleep was at a premium. Bottles were everywhere. We all three cried for hours every evening. And I thought that was hard.

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Big Man had high muscle tone on his left side, and a mild speech delay. Enter therapists visits to the weekly routine. And I thought that was hard.

When Big Man was nearly two, and the Princess eight months old, we moved….400 miles away.  I left my career of ten years. I left my family. I left my friends. I left my church. We moved in with spouse’s  (awesomely amazing) parents for eight months while our new home was being built. I found a new job I hated. It took forever to build new relationships. I had two toddlers in a new place, and I wasn’t entirely happy…yet. And I thought that was hard.

I had two toddlers under one roof – two toddlers who were like the wonder twins. I couldn’t keep up with their creative disasters. They finger-painted with baby shampoo in the middle of Big Man’s room. Baby shampoo NEVER comes out of carpet, ever. They unraveled a Costco-sized package of toilet paper up and down the upstairs hallway. They threw another Costco-sized package (out of the plastic wrapping) into my big jacuzzi bathtub. They ran away, down the street and around two corners, while I fed their six-week old baby brother. Big Man cut ALL of the Princess’ hair off, to the scalp, twice. They colored the underside of the pool table. I caught them, frequently, eating frozen waffles underneath the dining room table. Ditto bags of candy they’d climb on top of the fridge to retrieve. And I thought that was hard.

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I had three kids under four. I can’t even list all that drama, but I thought that was hard.

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The Herd in earlier days

There was a time they were all three involved in multiple sports….baseball, soccer, dance, piano lessons, golf. I lived at whatever field it was the season for.  I spent hours and hours in the car getting them each to whatever practice, game, lesson, or recital. And I thought that was hard.

Big Man was diagnosed ADHD, and with a mild visual processing disorder in second grade. We chose to medicate the ADHD. He fought the medication for the first year. I’d find pills hidden in the kitchen drawer, under the lazy susan in the middle of the kitchen island, and pretty much anywhere but in him if I didn’t watch him take it and make sure he actually swallowed it. He got glasses, and we got an every-six-months schedule of appointments with the pediatric opthamologist. And I thought that was hard.

I had three in elementary school. I went on field trips. I taped, glued, cut, copied, read to kindergartners and third graders, ran the book fair, was on the PTA, and basically lived at the school. We lived in nightly homework hell. And I thought that was hard.

Little Man was diagnosed on the autism spectrum, and ADHD, in second grade. It nearly broke me, but we finally had an answer, and a plan, and help. We entered the world of IEP’s, special education, accommodations, speech therapy, psychiatrists and therapists. And  I thought that was hard.

We moved on to middle school for the older two – ugh, middle school and middle schoolers. They each got their first phones, and we had to start talking about internet safety, data plans, and had to come up with rules of how we would handle things. And I thought that was hard.

Now here we are…..two days away from having three teenagers under one roof. Two are in high school. I was ill-prepared for the drama, the angst, the emotional rollercoaster, the pushing back against rules we’ve had in place forever, the angry words that instantly bring tears to my eyes, the eyeball rolling, the intense search for independence, the life-lessons they are learning through which I just want to help but know I need to stand back and let them have at it, come whatever the natural consequences will be. I’ve watched my biggest baby boy struggle to find his way academically when it used to come to him so easily I think he took it for granted. I’ve watched P fight to find herself – somehow losing (hopefully temporarily) the brave, bold, confident girl we used to know. Then, recently, came the day Big drove himself and P to school, his driver’s license finally earned. And I think this is hard.

Within the next five years, I will watch as they have all the rest of those “firsts”, as they graduate, and leave for school, only ever to come back for what will essentially be visits between semesters and school years. I know I will look back on all those things I thought were hard and will know that was nothing, because watching them go be their own people, away from us, my heart living outside of me (possibly far away from home), now that, that will be hard.

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