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.

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.

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.

Those Nights – Empty Crib

I’ve written lots about the days I spent on hospital bedrest, Big Man’s premature birth day, and his many days in the neonatal intensive care unit (NICU).  There’s one thing I haven’t really ever talked much of, except for with friends who experienced it themselves, and that’s all the nights I left his bedside and drove home, leaving my son behind to the care of doctors, nurses, and machines.

I was released from my hospital five days after Big Man was born. I’d gone five days without seeing my son in person, staring at the two polaroid photos we’d been given, and watching video of him on the 2 x 2 inch screen of the video camera Spouse had bought the day our sweet boy was born. We sped to his hospital where I saw him, and held him, and began a “new normal” routine.

My days were full of routine – wake up, pump, get showered, eat breakfast, pump again, and begin the forty-five minute drive from home to the NICU. I was typically there by 9, and I’d sit there with him until 3 or 4, only leaving to pump again or go have lunch during shift change. To get to and from his hospital, I faced all the commute traffic the Bay Area could throw at me, so I generally tried to get out of there before rush hour started, or stayed until long after it was over.

I hated those drives home. I hated walking away from my baby boy to go home. I hated leaving him. Many of those nights, I cried nearly all the way home. I can’t even really begin to tell you what I did at home each night…I’m sure I made dinner, maybe stopped on the way home to get groceries, paid bills, returned phone calls, walked the dogs, fed the cats, watched tv. But mostly, my brain was wrapped up in the fact my too-small boy was not with us. We were a family, but a split family. He was not under our roof because my body had failed him. He was 4o miles away. His crib in his room was empty.

Blessedly, I didn’t have to walk past his room to get to mine each night, but too often, I found myself in his room, sitting in the glider beside that empty crib, thinking about all I could have done, should have done, all we’d lost, all we were waiting for, all that could go wrong, had gone wrong. When I was with him in the NICU, I focused purely on him – how much weight he’d gained, how many times he’s stopped breathing during the night, where he was on the developmental chart, how he looked. But at night, with no baby right there before me, I felt all those awful things I wouldn’t let myself feel when I was with him during the day.

The empty crib, my empty arms, are the things I remember of those many long nights before he came home. I don’t talk about them often because those are the really dark memories of that time. But they happened, and they are part of the reality of having a baby in the NICU.

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.

The Hand We’ve Been Dealt

Some might say we’ve been handed a less-than-stellar parenting hand. Trust me, before we got pregnant with our oldest, I didn’t intentionally sign up to have a micro-preemie nor an autistic child. And I know well too many parents who live a much more difficult parenting road, some too painful to even think about. So I don’t complain, much. Are our lives easy? Nope, but there’s never a promise of easy when you start down your life path.  You deal with the hand you’re dealt. That’s my take anyways.

I suppose we did have a choice. We could have told the doctors to not take any extraordinary  measures to save Big Man.  We could have quietly let him pass, fears of what his future might  hold taking precedent over his chance of survival. We could have walked away. We could have chosen not to fight. But I knew him – I knew his fight, even before I saw him face-to-face. I’d felt him within me, I’d heard his strong, fast heartbeat. I’d seen his tiny arms and legs on the ultrasound screen so many times. I knew long before he took his first breath we would fight as long as he had fight within him. We didn’t  know, even when we brought him home from the NICU, what his future might hold, but honestly, do you ever know what your child’s life is going to be? Life holds no guarantees. We took him as he came. We loved him, we watched him, we cried, prayed, laughed. We continue to advocate for him, raise him, fight with him and beside him.

The day (and admittedly for a few days afterwards) we found out we were pregnant with the Princess, I cried, so not ready to face pregnancy again so soon after Big Man’s birth. He was 3.5 months old. Our babies would be just a year apart, if I made it to full-term this time. I fretted, I worried, spent days full of anxiety, so sure we were going to end up back in the NICU again. I eventually reached a place of knowing our family was going to look a bit different than I’d planned, but we were blessed. And oh  how I fell in love with that little girl.

I recall so clearly the drive home from the psychiatrist’s office the day Little Man was diagnosed autistic. I called my friends. How would I do this? Why was this happening to him, to our family? What had I done wrong? Why did my baby have to suffer? A wise friend reminded me my baby was still my baby – a diagnosis did not change who he was. I would have to fight for him at times, I would have to find the strength inside to deal with the hard parts. I would go to the deepest depths when my nine-year-old told me this was too hard and he didn’t want to live anymore. I’d have to remind myself all the amazing things he’s capable of when it seemed all I was hearing was what he couldn’t do.

I guess I could have walked away, said this was too hard, too much, could have chosen not to fight for him and his needs. But I  never saw that as an option. I’m not amazing. I’m not extraordinary. We aren’t special because we continue to parent him. We deal with the hand we’re dealt. Our hand  may not look like yours, but you take what you’re given and you deal, or you don’t.  We just never imagined there was a choice for us, never considered any other option than loving our babies.

I Found My Voice – Prematurity Awareness

I wasn’t much for causes as a young adult. Oh, I had opinions, and I respected people who fought for what they believed in, but I just never spoke out. Nothing drove me to that point. I participated in walk-a-thons and read-a-thons for MS and other things, but I wasn’t engaged. Nothing mattered enough to move me that far.

And then I had a very  premature baby. Life as I knew it was upended, changed forever. All my dreams were shattered. I had a baby fighting for his life, dependent upon me to advocate for him. I prayed, I begged God to save him, I watched him battle for every breath, every second of every hour of every day. I thought to myself, “If this tiny boy can fight this hard, I can fight just as hard for  him.” I discovered a voice I didn’t knew I had – a strength in myself I never knew existed.

Fast-forward four years, and my discovery of how research funded by the March of Dimes had essentially saved his life. Add to that their providing of an online support community in which I found others who spoke my preemie-mom language, who understood my fears, my anxiety, my grief, my pain. And then an outlet, a focus….we formed a family team to fundraise and walk in that organization’s annual March for Babies. I haven’t looked back. We’ve served as a local Ambassador Family, speaking at numerous events, participating in radio, news, and print interviews, my precious boy’s photos splashed across all sorts of media.

Then there came the autism diagnosis for Little Man, four years ago now. I had to again learn to advocate for my child, reach down deep inside and gather a strength I didn’t know I was capable of, to fight for my child’s needs and a place in a world completely NOT designed for him.

My voice – both written and spoken – was found through my children. I didn’t choose this path. I didn’t choose these battles. But they are our story. I speak out. I write. I advocate. I research. I help others just starting similar journeys. More than this, I’ve been given the courage to use my voice in other areas of life.

Today is World Prematurity Awareness Day. I’m wearing purple in honor of my beautiful survivor, for all those other precious babies who have come out the other side of a too-soon birth, and those for whom their early birth took them from this earth. We in this house are perfectly aware of Prematurity. We’ve lived it. But the voice I gained sixteen years ago, and the voice I have continued to develop over those same sixteen years, enables me to reach out and help others around me be aware of the severity of the problem of prematurity.