“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?

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!

Something else they didn’t tell me

When you’re going through fertility stuff, you get to go through lots of bloodwork. When you’re on hospital bedrest for sixteen days, you get one or more IV’s, all of which are moved every two or three days. When you get a severe staph infection, you get a PICC line for four weeks (which might take three or four tries, including a trip to a surgery unit to finally get it in) accompanied by once-a-week bloodwork to check the status of said staph infection. Now, there were a lot of things they didn’t tell me when I was on that hospital bedrest, nor when Big Man was born 14 weeks too soon, nor when I was recovering from that severe staph infection. One of the things they didn’t tell me was that, for probably the rest of my life, my veins will roll and collapse when getting blood drawn or an IV line put in.

Phlebotomists and nurses get all excited when they see my veins. They look nice, pretty, and totally accessible, until they try to access them. Then forget it. Bye-bye veins. It’s not fun to them. It’s seriously not fun for me. I warn them, but almost to a t, they don’t believe me until they go to put the needle in.

I had to have blood work this morning. Right away, a pretty vein showed up on my left arm, but as soon as the nurse went to put the needle in, it disappeared. I told her what had happened to me, and this was not out of the norm anymore. She was really nice and worked with me, using the baby  needle and holding my arm in just the right spot. She got it in on the second go.

I’m whining. I get it. Worse things could have resulted from those experiences seventeen years ago. Quite honestly,  this is just an annoyance I rarely have to deal with anymore. But it’s a reminder, every single time, of 21 days of IV’s, four weeks of a PICC line, and just about everything else that went wrong that September. And it’s just something else they didn’t tell me would happen.

When the days line up

We have a whiteboard calendar above the desk in our kitchen.  I was super late getting around to updating it to August, so it was just two days ago I finally managed it. As we’re already well into August, I started with that day, and went into September. And then I wrote down  Big Man’s birthday, and it hit me…..the days line up this year. His birthday is on the same day of the week as his birth day.

I mentally count down the events leading up to his birth every year. That’s nothing new. The day I started bleeding and was admitted into the hospital, the day I found out I wasn’t going home until I reached 32 weeks or he was born (whichever came first), the day they discovered I’d lost 8 pounds in six days and the feeding frenzy began, the days I got my first, second, third, fourth, fifth, and sixth steroid shots to help his lungs develop early, the day I had the fetal fibronectin test and no one would tell me the results, and then the night I started running a very high fever courtesy of the severe staph infection which would result in his birth the next day at exactly 26 weeks gestation. I feel those days coming every year. I’m not as emotional as I used to be, but it still hits me. He’s come so very far…he’s perfectly healthy and “normal” in every way, but that doesn’t take away the toll his premature birth took.

There’s just something about the years the days line up exactly. It makes it that much more of a journey to navigate because it’s all the same as it was seventeen years ago. I started bleeding and was admitted on a Wednesday. I was told on Saturday I wasn’t going home. I was weighed on Monday and they found out I’d lost too much weight. It was on consecutive Thursdays and Fridays I received the steroid shots. It was a Friday when I had the fetal fibronectin test. I was a Friday when the fever started. It was a Saturday afternoon when he was born. I’ll relive that exact journey this year. It’s like a punch in the gut.

Don’t get me wrong – I feel incredibly blessed we came out the other side with the miraculous outcome we’ve had. He’s my amazing boy – my first born, nearly seventeen years old. But none of who he is or what he does nor how he is takes away the guilt, fear, pain, and sense of loss from his premature birth. NONE of it. I will always relive those days in my heart and mind, each and every year for the rest of my life.  And when the days line up with the year he was born, it makes it that much more difficult.

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.