“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.

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.

The Little Things – PTSD and the Preemie Parent

There have been numerous studies showing parents of preemies suffer from PTSD. Makes sense – you go through something so full of trauma, guilt, fear, anxiety, living minute-by-minute – you’re going to have ongoing emotional and psychological fallout. Most days, I don’t think about what we went through; it has been sixteen years after all since Little Man was born so early. But all it takes is one little sound, smell, sight and I am right back in those moments. I feel it, all over again. I forget we’re where we are, and I’m back in those days of fear, highs and lows, two steps forward and three steps back, having everything out of my control.

My mom had open heart surgery in 2009.  I went up shortly after the surgery itself to be there for her. She was in the critical care unit. I was in her room with my sister, all of us talking, when someone in a room nearby must have dropped oxygen sats and heartrate. The bonging alarm went off. My heartrate accelerated, and I broke out in a cold sweat. I heard that bonging every single day in the NICU, often coming from my own son’s monitors. You go into panic mode every time you hear that sound. I can still hear that sound in my mind. I will never forget that sound. I doubt I will ever hear it without reacting with panic.

I shave my legs almost every single day (TMI – sorry not sorry). If I go more than 48 hours without shaving my legs, I get twitchy. The reason? When I was on hospital bedrest, I went over  a week at a time without having my legs shaved. I can’t stand that feeling. It reminds me of laying helpless, lonely, bored, and terrified in that hospital bed. Same goes for washing my hair. I can barely make it 48 hours without washing my hair because it takes me back to those 16 days in that hospital room.  Seemingly little things, yes? But still – little things that can set me off all over again.

I spent months reaching for the foot pedal every time I went to wash my hands. If I smell that antiseptic soap ever, I’m back in the NICU, washing my  hands before I walked through the double-doors into the NICU pods. Half the time when I wash my hands, I still mentally sing the ABC’s as we were taught early on the NICU – because that’s about how long you’re supposed to lather and wash to make sure your hands are really clean. If I come across a foot-pedal sink, I’m back in the NICU too.

Seeing pictures and videos of preemies in the NICU send me right back to Big Man’s early days. There’s a distinctive way NICU babies move with all the wires and tubes connected to pretty  much every extremity. I’m reminded one of the things I hated the most – that board strapped to his arm or leg to keep the lines straight. God I hated that board. I hated the mass of tape over and around his mouth to hold the ventilator and feeding tube in place. I hated the nurse who ripped the tape off his face one night, tearing off layers of his too-thin skin, leaving him with a dark splotch on his face he carries to this day. I hate that I still cry when I think about this.

We played music for him throughout the day as soon as he was able to tolerate the stimulation. I had to toss those cd’s when we got home from the NICU. I couldn’t stand to hear those songs anymore. When I heard them, I could smell and hear the NICU again. I still get the sweats when I hear any of those songs, which blessedly isn’t often at all, but still.

Most days, I don’t think about the NICU, or hospital bedrest, nor all the attendant fear, grief, anxiety, pain, heartache, stress. But those little things, man, they’ll do  me in in a heartbeat. PTSD for parents of preemies – it’s a real thing.  Just ask a preemie parent.

It’s Just Different

As I was driving the Princess to cheer practice this morning, the first song that came on was “Wake Me Up When September Ends.”  If you’ve followed us for awhile, you’ll know that song hits me in the gut every single time. I spent most of September 2000 in the hospital – 16 days trying to stay pregnant with Big Man for as long as possible, and then 5 days recovering from childbirth and waiting to see how the doctors, and insurance, would handle my own life-threatening staph infection. No matter how many years pass, when September rolls around, so do the memories….the reliving of the fear and worry, the pain, and the guilt.

Big Man will be sixteen years old next month. That’s a rather significant milestone, isn’t it? When your micro-preemie survives, every milestone takes on an entirely different relevance. Learning to eat and breath at the same time, moving to an open crib, getting to wear clothing, losing each line, coming home, ditching this medicine, that medicine, this therapy, that therapy, gaining weight, rolling over, crawling, walking, holding a crayon, walking up and down steps, turning 1, then 2, 3, 4, 5…starting Kindergarten, playing t-ball, playing soccer. Every little tiny thing he does feels different. It’s somehow bigger because for days, weeks, months, you didn’t know if he would survive, much less ever come home or grow up to be a “normal” child.

The milestones have come fewer and further between. They still each have their own immense significance. Each step forward still fills me with awe, as much as it makes me miss the stage before, the stages before. I see his curled hands as he sleeps….in the same positions he held them as an infant and toddler. His facial features, while more mature and larger, are much the same as they’ve ever been, at least since most of the tape came off his face in the NICU and I could actually see his face. The tiny blond hairs on the back of his neck are still there as they were the first time I saw him. I still see that stupidly-tiny, 2 pound baby boy when I really look at him.

In a few short months, he will get his driver’s license. In a few short years, he will graduate high school and head off to college, to his future. Somewhere down the road, he will graduate college, start his career, maybe find *the* girl, maybe become a father, buy his first house. I will watch him reach each milestone, remembering the days I prayed and did all I could to stay pregnant with him, then wondered if we’d ever get the chance to see him grow up. His milestones are just different in my heart. And trust me, every September, I’ll re-walk the journey that brought him into this world. For a few days, I might ask you to just wake me when September ends, but then I’ll think about all the miraculous moments I’ve watched in his life, and I’ll smile with joy at the gift.

Inspired

I originally wrote this six years ago, but it’s still relevant, so I’m re-posting. Since those sixteen days in September 2000, I’ve never looked at the Olympics the same way. Maybe all the hours I spent watching them that summer ingrained the Olympics into Big Man’s subconscious. He’s just as obsessed with them as I these days.

Every two years, the Olympics comes along and we as a country seem inspired to watch sports we normally have no interest in, and we are inspired with pride in our country and its athletes. I well-remember historical Olympic moments from my lifetime…Nadia, the 1980 US Olympic Hockey Team (“Do you believe in miracles?”), Mary Lou, Dan Jansen, Michael Phelps…..the memories float through my mind as I sit and watch this year’s Olympics with my children. What will they remember? How will they be inspired? And with each race, each competition, I am amazed at the athletes who have spent much of their lives training for just this one moment.

I developed a special relationship with the Olympics in 2000.  The Summer Olympics in Sydney, Australia started two days after I was admitted to the hospital in very pre-term labor and bleeding with Big Man.  Looking back, I don’t know what I would have done had those Olympics not been on. I was on magnesium sulfate to slow down and hopefully stop the contractions.  The magnesium did its job, for which I’m extremely thankful, however, it’s hideous stuff.  I felt like my veins were on fire when that I.V. was started.  It slowed everything down, especially my concentration and brain function. Big Man was not the least bit affected.  Anyways, reading was out of the question…my brain couldn’t focus long enough to get through part of one sentence much less an entire book.  Projects of any kind were not on the list either.  Conversations were hard to carry on.  About the only thing I could do was watch TV.  I’ve never been a huge fan of daytime television. It just doesn’t do it for me. But I was stuck in the hospital, attached to two I.V. poles, ordered to stay in bed.   So I watched the Olympics. I watched nearly every televised moment of those Olympics, and then saw all the replays on the morning, evening, and late night news. Between that, the Today Show, Rosie, and Oprah, I got through each day slowly but surely.  I gave birth to Big Man the day before the Closing Ceremonies.

Now Big Man has heard his story a million times.  He’s heard me speak of those Olympics helping me through each day, but he didn’t really understand what the Olympics was, much less the role it played in our lives those sixteen days in September, 2000.   The last Summer Olympics, we watched a lot of the events.  He sat with me during much of it, and finally put it all together.  I think the Olympics will always be a special tie between Big Man and me. He’s watched a lot of this Olympics as well. I wonder if he is inspired.  I know I am.

I’m inspired by these athletes, but also by their parents who give up so much of their time and resources in support of their childrens’ dreams. I’m inspired by the hours and hours of training.  And my thoughts turn to inspiration in general.  I’m a sappy mom, I will freely admit. And I probably over think my kids’ every day lives.  I put myself in their shoes often, and I’m inspired by what they get through each day.  I spent much of my childhood paralyzed by fear and shyness, so as I watch my children walking into a sports practice in a sport they’ve never tried with kids they’ve never met, I panic for them. I feel my heart race.  When they’re playing those sports, I take on their nerves (they seem absolutely unperturbed).  When they have to read in class, or head out onto the big playground with all the other kids, I wonder what they’re thinking and feeling and if they’re scared, shy, or nervous. And don’t even get me started on Big Man.  That kid does make me truly “believe in miracles” and inspires me with the fact he’s alive today, much less the normal, healthy, active, smart, funny, loving boy he is.

Inspiration comes in all forms.  Those 2000 Summer Olympics were an inspiration, but that inspiration was nothing compared to what I would see and feel after Big Man was born and struggled and fought with every single ounce he had. Olympic athletes are pretty amazing, and I’m as proud as anyone of our US athletes. But my biggest inspiration sits with me each night these days watching those athletes. By that, I am truly amazed.

Inspiration

I normally spend much of my blogging efforts this time of year writing about our journey with prematurity. We volunteer with the March of Dimes and have had a family team for their annual March for Babies fundraising event the last nine years (this is our tenth event). Big Man was born 14 weeks early, the very first day of my third trimester of pregnancy,  after sixteen days of hospital bedrest due to a placental abruption. Research funded by the March of Dimes saved his life, from the steroid shots I received to help his lungs develop early, to the standardized Level 1 neonatal intensive care unit which was his home his first 93 days of life, to the surfactant therapy he received to help keep his tiny lungs inflated. We have no other way to say thank you and give back. We spend three months a year asking friends and family to support our fundraising efforts. After ten years, I’m sure they’re all tired of hearing from me, and yet we continue to exceed my expectations. To date, we’ve raised nearly $30,000 for the March of Dimes.

Behind every single family team is a story. Ours is prematurity. I was changed forever the day I started bleeding profusely. All my innocence about pregnancy and childbirth was stolen in that moment.  I can’t fully explain what it’s like to stare at your 2-pound baby boy whose very existence is threatened by the failing of your body to keep him safely inside where he belongs. I can’t fully express what it’s like as a mother to be told you can’t touch or hold your baby. There are no words to properly explain what it feels like to watch your baby forget to breath, turn completely gray, and have his heart rate drop like a rock, not knowing if he would come back this time. I can’t tell you, unless you’ve been there, the anguish of walking out of a hospital after giving birth, empty handed, nor what it is to leave your baby every single day for three months and go home without him to stare at an empty crib you can only pray he will someday be able to sleep in. Those feelings and that hurt doesn’t go away, ever. The passage of time puts scabs and scars on those wounds, but they are always there. And because every single year, half a million parents in the United States go through the same thing, we keep asking friends and family to support our team in our fundraising efforts. Don’t worry – I won’t ask you all for donations (unless you feel driven to that end).

I was looking at the photo of our family team t-shirts yesterday. The back is comprised of inspirational quotes, or quotes that somehow summed up our journey, or gave me hope. I’ll share the photo here in a moment. One of the quotes states, “Every blade of grass has its angel that bends over it and whispers, ‘Grow, grow’.” I chose that quote because I know without a doubt Big Man had at least one angel standing over him at all times. And he did indeed grow. He’s 13 1/2 years old now. The day he was born, I would not let myself imagine what he might be at 13. I could only focus on that one day. And that’s how it was every day in the NICU. I never, ever let myself picture him in middle school, or playing soccer, or golfing, or playing with his siblings, or asking me about girls. My mind protected itself, because if I imagined it, and then it didn’t happen….I don’t even know where I would have been. We focused on every ounce he gained, every milestone he reached, every challenge he overcame. I was afraid to believe he could and would continue on that path. He did, and he’s amazing, but I couldn’t let myself think about the future then. His first t-ball game when he was five, I cried….I cried buckets of tears, because he was doing the things I would never let myself picture him doing. I still get choked up watching him play, run, read, or take out the trash. Back then, we had no idea what the future might hold for him. He could be blind, deaf, have CP, and/or be developmentally challenged in so many ways.

All the words on the back of that shirt represent him to me. He is hope. He is miracle. He has grown. He is courage. He is love. He inspires me every single day. He set me on a journey that changed my life. I am blessed beyond belief to be able to sit back and watch him take his.

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Why that one and not this one?

When I was admitted to the hospital and put on hospital bedrest for the duration, M did what he could to make my room there like home. He brought me all kinds of things…a boom box to listen to my beloved A’s, a combination vcr/tv so I could watch movies, magazines, photos, a fan, the baby journal, and my Bible. Thanks to that fabulous magnesium sulfate, I could do little more than watch tv and movies. My concentration lasted hardly more than a minute. Reading was impossible. But my Bible was there. I spent a lot of time having conversations with God, granted much of that was bargaining with Him, but I did pray….a lot. After Big Man was born, the amount of time I spent praying doubled and tripled. As I’ve written before, I would hit my knees at home in his room, in front of his empty crib. My faith during that portion of our journey grew.

I’ve realized since we started down this road with autism, I have put so many walls up. My faith has floundered and failed. Prayers? Talking with God? Not so much. Or at least not what I know I need. I’ve turned away more than not. I’ve pulled back. I’m not even asking “Why?” much anymore. I’m too busy trying to survive, and trying to get my baby through each and every hurdle we’ve faced.

It is not an easy road, going it alone. I have lots of friends. I have people I can lean on, specialists, therapists, teachers, other autism moms. But doing this with that piece of the puzzle missing…it’s not working for me. Now I know not everyone believes. I’m not preaching here. I’m just talking about me, and trying to figure out why this time, in this circumstance, I have  chosen to turn my back on God, rather than leaning in to Him as I did with Big Man.

There is no end to Big Man’s prematurity. He will always be a preemie. I will always wonder how things could have been different had he been born on time, instead of 3.5 months early. I will likely always be waiting for yet another shoe to drop. But we are past the terrifying, life-and-death portion of his prematurity. He made it out of the NICU. He came home. He has soared to heights I wouldn’t even let myself imagine thirteen years ago. E-man’s diagnosis is not going to go away. He will always be autistic. We can do all the therapies in the world..he will never not be autistic. It will affect him every day of his life for his entire life. I struggle deeply with that. I know he will be successful on his terms. Someday, it won’t take as much work as it’s taking now, but it will always be there for him. He will always have to fight against his nature to succeed socially and emotionally.

God held Big Man’s life in His hands. He could have taken him back with Him at any point. He did not. I don’t know what would have happened to my faith had He chosen to take Big Man Home. I can’t even wrap my brain around that. But E has a lifelong sentence. And I think I’m pretty dang angry about that, so I’ve pulled back. I’m punishing Him for this happening to my child. How’s that for honesty? He gave me a miracle in my first child, so why not in this one?

I’m finding it hard to be joyful and thankful at the moment. The book I just read (and recently wrote about) keeps poking at me….be thankful. Start with the little things, but be thankful. Maybe that’s exactly what I need to do to start towards the end to my hurt and anger. Maybe I just need to start at the very beginning. Maybe just realizing where I am is the first step back to where I used to be. I don’t know why I leaned closer to God with Big Man, and why I’ve pulled away with E-man. I’m working on that. Why one, and not the other?