A Thank You Letter to my Son’s Physical Therapist

I’ll never forget the day you came into our lives. It was a humid early October morning, the kind we often remember as the last of the warm days before the brief reprieve we call winter here. You were there that morning to evaluate my son for ECI, and within minutes I could see the love and dedication you have for what you do. Before long, I saw that same love and dedication become not only for your job, but for my son. It was through you that I’d learn to think big and never underestimate what he was capable of.

For the entire time I have known you I knew I would end up writing this. I could see myself sitting here now typing painful, but so necessary, words. In my heart, the circumstances were far different than a move six short months before your time with us would end when he aged out of the program, but the emotions are the same. So here I am, writing a goodbye two years in the making.

You told me from the beginning that Avery was capable of anything. Far before his formal diagnosis of CP or polymicrogyria, you stressed to me that he was strong and determined. You saw such potential in him despite the fact that at nearly one year old he could not roll over, sit up, or do much beyond laying like a newborn. I wouldn’t let myself feel the kind of hope that you felt. My heart needed protecting. If he did not do all the things you thought he would, I didn’t want my heart to be broken.

Only a month into our time together I watched him roll over with you. I cried. A year’s worth of emotion poured out of me so effortlessly, as you would find it often did when you were around. You’d say “If I’m here and you haven’t cried yet, something must be wrong!” Normally I’d be saddened by this, but every single tear I ever cried, save those last ones, were happy tears. I want you to leave our family knowing this.

If it weren’t for you I would not have the skills to help my son continue to progress. You gave me the tools I needed to strengthen and support him. Your hard work saw Avery go from completely immobile to taking steps. We got to celebrate Avery learning to sit up, crawl and stand. All of those things are credited to you.

Sometime when you’d first began seeing Avery, in those early, fear filled days, I asked you if you thought he would be able to walk one day. You gave me a crazed look of disbelief and asked me if I knew my son. Of course I did! “Well then yes, he will!” And he did.

Avery walks because of you.

I want you to know that we love you. You have done something for our family that only you were capable of. Not only will it be your therapeutic skills but also who you are intrinsically that we will miss. Your cheerful disposition and no-nonsense approach would turn Avery’s bad attitudes around every week. Even when he fought you for every kneel or stretch you never gave up on him.

Your dedication to our special kids shows me how much good is left in this world. Every family entering ECI and beginning the blind journey of special needs parenting should be gifted with a Leanne of their own.

From the bottom of my heart I want to say thank you. I’ll do everything I can to ensure than my son grows up to remember you and what you’ve done for him. What you did for us. What you will do for countless other kids like him.

Physical therapists become the unsung heroes far too often. Your job is a difficult one. And emotionally taxing and sometimes sad one. I know it isn’t always easy. So please, know how much your work means to us. Without you, I don’t want to think about were Avery would be today. I know without question that he wouldn’t be the sassy, headstrong little boy who now takes independent steps. That’s all you.

A physical therapist changed my sons life. You changed my sons life.

Thank you, for everything.

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Preeclampsia- Raising Awareness

My oldest child was born at the end of a long, tiresome pregnancy. That pregnancy itself nearly broke me; I sometimes forget just how closely I came to not surviving the entire thing. Today, Abby is eleven. Despite what you might think, especially if you know me and are aware than preeclampsia in its milder form played a part in the birth of my micro preemie, it is Abby’s story that terrifies. It’s the one that to this day gives me nightmares.

I had a fairly normal pregnancy during the first few months. All of my tests came back indicating that we were having a healthy baby girl. I was giddy anticipating the dresses, hair bows and tiny shoes I would place on the little girl that, by my 28th week, I decided would be named Abigail. Unfortunately, it was also around that time that I began to feel what I can only describe as “off.” I started to become unusually tired, my feet and hands began to swell and I would get dizzying, debilitating headaches. My midwife- I had this intense desire for a completely natural birth, thus my decision to see a midwife and not an obstetrician- grew concerned when my blood pressures started to creep up. She put me in the hospital the weekend of my 29th week and it seemed as if, if I stayed in bed, my pressures stayed at manageable levels. I went home on Monday, diagnosed with transient pregnancy induced hypertension. She recommended I start bed rest immediately.

I gave bed rest a valiant effort. I still showered each day for as long as I felt able and made my own meals. I was alone much of the time and there were simply some tasks that I had to accomplish myself. It was incredibly difficult to have life going on everywhere around me and mine standing still. I managed until 36 weeks, when I noticed that I still felt badly even when laying. My midwife took one look at me that week and knew I was going downhill. My blood pressure was 160/90. She sent me home to collect a 24 hour urine catch- one of the tell-tale signs of preeclampsia progressing and becoming dangerous is increasing protein levels in the urine. It just so happened to be a Friday so I would not return with my sample until Monday morning. I remember sitting in the waiting room and watching the Michael Jackson trial. Turns out I didn’t need that urine. My blood pressure was 180/100 and I was sent to the hospital to be induced. It was April 11, 2005.

I was induced immediately and within four hours I was being ripped apart by pitocin induced contractions that I wouldn’t wish on my worst enemy. After 12 hours with little progress, they allowed me rest for 8 hours. All the while, my blood pressure soared and I was hooked up to a magnesium drip. The mag itself felt like fire flowing into my veins. I sweat profusely. It slowed my central nervous system and caused me to be weak, confused and lethargic. My 8 hour break was from pitocin and contractions, but not the magnesium. It was necessary in an effort to lower my blood pressure. Early the next morning they came to tell me we had to start the pitocin again. That natural birth a distant memory, I begged for pain relief. They refused me an epidural until I dilated to 5 cm so every hour I got a shot of stadol that, while it didn’t relieve my pain, it sent me directly to sleep. Just before midnight the second day I finally dilated enough to get the epidural. They broke my water and attached a monitor to Abby’s head. The end was coming.

My epidural didn’t work. Twice they came back to re-position it and twice more it failed. Twelve more hours of contractions indescribable. At noon on April 13th I’d been stuck at 8 centimeters for 8 hours and a surgeon came to see me. He told me I’d never deliver a baby naturally and I needed to have a c-section. I’ll never forget what I said to him. “I don’t CARE as long as you take me and do it NOW!” An hour later, at 1:06 PM, Abby was born. I was happy because my pain was over. As bad as it is to admit it, my daughter’s very birth was overshadowed by the fact that my nearly 3 days of pain was finally over.

I spent the next 24 hours still on magnesium. When they turned it off, they seemed satisfied with my average pressures around 150/80-90. I told them this was still quite high for me. Then, I caught sight of myself in the mirror and didn’t recognize myself. My face was puffy and swollen. I’d just given birth, been through hell and back, so I thought maybe it was normal. I complained about my dizziness and got pain medicine, which exacerbated what I was already feeling. I shut up. No one was listening to me anyway.

On Saturday morning, we were discharged. The nurse who came to take my blood pressure placed the cuff on me and went about checking my temperature. When the machine beeped she frowned, so I turned to look at the screen. My blood pressure was 175/100. She said “Here Momma, let your arm dangle off the bed and let’s see if we can get a better pressure than that.” It came back at 169/89. She wrote it on the chart and I was allowed to be discharged.

I was unprepared for a hospital stay so when I got out I had no extra clothing. I had to wear home what I’d worn to my last appointment. Except, it didn’t fit. I wore it 6 days before, 37 weeks pregnant and I couldn’t even pull the pants up my hips. There were so many warning signs.

If the hospital was hard, home was impossible. I had to do everything for the baby myself. The day I got home I spent three hours at the stove sterilizing bottles. By day two, I could no longer wear shoes. Day three came the unrelenting migraine. Each day I felt exponentially worse than the day before. On the fifth day I had to take Abby to her first pediatrician visit. He told me I needed to go home and get into bed, that I looked like death. Little did we know…

On our way home we ended up stopping at my sisters. She had a baby 5 weeks before so we wanted to visit for a bit before going home. We’d been out for quite a while and I was tired. As I sat there I began to lose my sense of time and apparently became disoriented. The world spun around me and I couldn’t get my arms and legs to move when I wanted them to. My head pounded with each quickened beat of my heart. I felt like I was in a tunnel, at the very farthest end. I remember someone saying they were calling 911. The EMTs who came couldn’t get an accurate blood pressure on me. It was that high. I was having a stroke.

Had I not been with my family, I’d have died at home with my baby. I’d have died a completely preventable death due to medical neglect. I should have never been released from the hospital in the first place. My doctor would contact the doctor who discharged me and tell him that I had developed post partum preeclampsia and, eventually, ecclampsia, and that his neglect played a part in it. I was just glad to be alive.

For the five days I was home my baby wasn’t a joy to me but a burden. I couldn’t care for myself and here I was trying to care for this needy, colicky newborn alone. I didn’t bond with her until after my 10 day hospital stay. I didn’t have the energy, the life, in me.

When I was released this time I needed clothes 6 sizes smaller. I lost 60 pounds in 10 days.

I’m lucky to be alive today. I’m fortunate. Preeclampsia is scary. It is vengeful and diabolical. Preeclampsia takes the lives of women and their babies every. single. day. And not just in third world countries. Right here in the United States.

There is no cure and doctors still don’t know exactly why it happens. For the majority of women, delivery of the baby cures preeclampsia. For some women, like me, this is not always the case. We know that it seems to run in families and that there are certain risk factors. The idea that my daughter could one day fight this silent killer terrifies me.

My wish is for every woman to know the risk factors and signs and symptoms of preeclampsia. If you don’t feel well, speak up. I was told with my second preeclampsia baby that 21 weeks was “too early” to begin seeing signs. Four weeks later my son was born. Remember when Kim Kardashian was pregnant with her first baby and she was ridiculed for gaining too much and being fat? She had preeclampsia. It can affect anyone. It doesn’t discriminate.

May is preeclampsia awareness month, we should all share our preeclampsia stories and bring awareness to something that too often goes overlooked and unspoken.

Your story could save a life.

A Year’s Fears- How Life Has Changed a Year After Diagnosis

A year ago this week we were waiting on MRI results for our 14 month old son. In the throes of Spring Break, our days had grown busier and longer than the typical weekdays that were ruled by the routines of homework, bath, and bedtime. I had all but forgotten about the MRI when my phone began to ring, a caller that in a glace I recognized as Texas Children’s Hospital. I can remember so many of the small, acute details about that day because for a brief moment of it time stood still. Even now my mind returns to that ratty t-shirt I was wearing with the stain on the shoulder and the Spongebob theme song on the TV. It was the soundtrack to which I found out my son had a brain malformation.

On that day a year ago I feared most that Avery would not progress. That he would not accomplish the things his father and I dreamed of from the moment we knew he was coming. If I am being completely transparent, I even feared he would never be perceived as “normal.” I, in all my rationality and acceptance, was worried about normal.

When you are told that your child’s brain formed abnormally in the womb, it crushes you. In our case, a routine MRI to check on a brain bleed he had suffered during his premature birth led to the unexpected diagnosis. Somehow missed during his 16 weeks in the NICU, Avery was born with excessive folds in the perisylvian region on the right side of his brain. I had never heard the term Polymicrogyria before that afternoon when time stood still. Even now, medical professionals will often turn their heads to the side and request “can you spell that?” when I rattle it off in his list of diagnoses. In the beginning, the fear was worse because the term itself was so foreign to me. How can you be brave in the face of something you know nothing about?

Arick, Avery’s father, and I did not talk much that afternoon. There was no small talk, no conversation about our days. The gravity of Avery’s diagnosis hung between us like a wall. We sat in relative silence together making the calls to loved ones to let them know the news. We knew enough to explain polymicrogyria but beyond that, beyond describing what his brain looked like…we knew nothing. So we Googled. And we cried. As we turned out the lights I promised Arick I would stop Googling. Our fear that night was palpable. Sometimes, it still is.

It is only with the clarity of time, of a year fast forwarded, that I can recognize how wrong I was. In my moment of weakness I let myself doubt my son. My son who fought for his very life when he weighed just 1 lb 3 ounces at birth, my son who’s survived things I would say I cannot imagine but I can because I was there. I feared he wouldn’t progress. I thought he would never understand me or be able to communicate effectively. Last week, I asked him if he was ready to go to bed. He looked at me, shook his head emphatically and said “NO night-night!” So, naturally, we stayed up.

Our dreams for him are still very much alive. The truth is, our dreams for him changed the moment he was born. “I hope he’s healthy” became “I hope he lives through the night.” Arick’s dream to coach his son’s football team became a prayer that he was physically able to play a sport. We were forced to instantly reevaluate our child’s future and make changes accordingly.

If there’s one thing we know about Avery, it is that he will accomplish great things. At 17 months he sat up and I cried heavy, burdened tears because I thought he never would. Within weeks he could army crawl like he was made for it. The first time he looked at me and said “mama” a piece of my heart that was broken by fear mended. At 28 months old now, he is trying to walk. I had this vision of my disabled child who would never be anything more than my disabled child. Avery is so much more. He is bright, beautiful and loving. He has polymicrogyria, cerebral palsy and so many other diagnoses. But those diagnoses do not make him. They are simply small fractions of who he is.

What has changed the most since his diagnosis? Me. I am happier because I get to spend each day watching my son grow and learn. I get to teach him and see his eyes light up when he gets it. I am here to see him fall and struggle with a left hand that simply will not work. I am grateful for even those sad moments because I recognize how different our lives could be. I know how debilitating that fear was.

I know that we will always fear the future for Avery. There will never be a time when we sleep deep, restful sleep. We will constantly question if, when and how he will be able to so something. Each day will be a new beginning though; each day a blank canvas for Avery to paint. He will paint it like only he can. He will paint it with progress. He will paint it with each feat he accomplishes. My son’s life will be a masterpiece.

He may not be normal to another family but he’s our normal. He was meant for us, and we are so blessed to have him. Polymicrogyria, cerebral palsy, fear and all.

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Avery recently while hospitalized for RSV.

Dear NICU Nurse

There was a time when I didn’t know you. A time of ignorance, when I didn’t know what went on behind those double doors where your work is done. See, my vision of my child’s first days never involved neonatologists, isolettes, and a weight measured not in pounds and ounces but in grams. You weren’t in those visions, either, so in the beginning you’re a terrifying reminder of how wrong my baby’s birth has gone. It isn’t you I don’t want to accept, though. It’s the crumbling of my hopes and dreams that causes my fear. The unknown and unsure. The almost indescribable moment when reality slides into something you’ve seen in a movie. Accepting you meant it was real; it meant that my ignorance was over. Awakened, I watched you keep vigil over my tiny son…all 540 grams of him…and love him. I would soon begin to understand how badly I needed you.

It felt like an eternity before I got to see my son. Arick would place me carefully into a wheelchair, hang my pain pump on the IV pole and slowly he’d wheel me to the double doors where the tiniest, most fragile patients were housed. In his first day as a father he’d become an expert at the only two things he could control: calling you every 15 minutes to check on Avery and scrubbing in and standing helplessly at his bedside. That first time I set eyes on all of him you soon came to tenderly change his diaper, no bigger than a packet of gum. His little corner was dim but for the single light shining down on him, illuminating your hands as you then worked to take his temperature. I’d never seen anything so delicate as either my son or your hands as you touched him. Your words would bring me the first comfort I’d feel in nearly a day. He was stable and breathing 21% oxygen. It was you who explained to me that night what room oxygen, TPN, the vent, the six IV pumps and all of the other overwhelming things meant. We stayed for a while- I was weak and still very sick- and you were there with us until we left. It wasn’t until I was back in my bed in my own room that I realized your only patient might have been Avery. I was stricken with the thought that you were given the unlucky job of watching, and waiting, to see if he’d survive his first night in this harsh world.

Over the course of Avery’s four month stay I feel that I witnessed the very same thing occur before my eyes with other babies. I saw you, worn, the concern evident on your face. I watched you care for a baby like it was your own knowing that this child’s time might be coming to an end. It was in those moments that I realized how strong you were. How you can face every expectant families worst fears and still go on. You’ve been with families as they say goodbye to their precious child and the next day you’re back knowing you could be doing the same thing. I believe that during those four months I saw the scariest, most heart wrenching aspects of what it means to be a NICU nurse. I probably experienced a great deal of them first hand. But I know in my heart I’m wrong. I can’t imagine what those moments are like. I’m just glad that you were there for those families. I’m just glad you were there for US.

It was you who taught us how to feed our two pound baby. A daunting task, feeding this child was. You wrapped him tightly in two receiving blankets and showed us how to remove him from the isolette safely while attached to so many wires. You showed us how to get him to suck and how important supporting his chin was. You facilitated the very thing that saved him- eating. You knew he liked to sleep on his tummy if you wanted to step a foot from his isolette. There you’d bundle him, long legs tucked under him like a little frog. You taught us how to stimulate him to breathe when he forgot to and showed us how to read the monitors, especially how to recognize the false alarms. When we watched him stop breathing and almost lose his fight you sat with us nearly all night. You were there in the darkest moments, when fear outweighed all other emotions.

Then again, you were there for the good days, too. When he gained weight for the first time you wrote on his board in big bold print, 1 lb (giant 5) oz. We walked in and the first thing we noticed was that enthusiastic note. You took his tiny footprints on his one month birthday and created beautiful keepsakes for us. It was you who celebrated every single hurdle he jumped beside us. You cheered when he successfully transitioned to CPAP after five long weeks on the vent and participated in an epic photo shoot four weeks after that when he finally went onto the nasal cannula. It was you who gave us that knowing smile the first time we walked into level 2 to see our newly minted “feeder and grower.” And it was you, every single one of you, who came to us the night he went home to say goodbye. You told me to dry my tears. You said we’d do fine. I wondered how, why, you had so much faith in us. Now, I know how you knew we’d make it. It was because everything we knew we learned from you.

NICU nurse…
You held my baby before I did. You touched his thin red skin long before I could. You took mercy on me and let me hold him for the first time at 6 weeks old, still vented, knowing it was a burdensome task and that he might not tolerate it well. It was the only time I held him until a month later when he could be fed and it was the single most precious moment of my life thus far. You knew our sons cues, his likes and dislikes. Before I knew enough to know him, you already did. Each night we walked out of those doors and left a piece of ourselves there with you. We called at all hours of the night and you never got tired of telling us he was “just chillin’.” You cared for him like I know you would care for your own. Thank you will never suffice.

When I think of Avery’s early days, it is you who stands out because your presence was so strong. You saved our son. YOU were exactly what our family needed.

To the ladies and gentleman at Clear Lake Regional Medical Center NICU: Thank you for doing what only you could do. To the families of sick babies it means the world. It equates to their fears being eased, intimidating medical terms being understood and trust being built. You did all this, and so much more, for my family.

When you’re tired, weary from long hours of doing something that is intrinsically emotionally draining, think of us. And always realize how important you are. Know the difference you’re making each day and with every baby. Know the difference you made for Avery.

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To Arick and Avery:

To the two guys who hold pieces of my heart on the birthday that they share:

Arick,
Have I told you lately how much you mean to me? How deep my love for you is? You and I, we are intertwined in so many ways that I have lost myself to you. I can no longer tell where I end and you begin. Even the beats of my heart pound in perfect harmony with yours. We have something magical that I’ve never before experienced and I hope I never experience again because that would mean that this love is my last. And I’d go to the ends of the Earth to maintain it.

I’ll always think of you as my birthday present. Turning 30 wasn’t easy for me but you singlehandedly made it better. When I needed someone the most it was you who came to my rescue. They say that the best relationships grow from friendships and in our case this couldn’t be more true. With you I laughed until I cried. Before a thought could form itself into spoken word you knew what I would say. We are two halves of a whole. Two perfectly imperfect halves. My 30th birthday, and the weeks following it, were made bearable because of the light you brought to me. Thank you for that.

I remember joking, in a way that now turns my stomach, how Avery would be viable (24 weeks) the week before your birthday. That meant that he could technically be born on your birthday and survive. I remember qualifying that statement with “but we don’t WANT that.” How sickening is it that this would be exactly how it would transpire. You’ll probably never get another gift as special as the one you got your 22nd year. On that day I didn’t- I couldn’t- get you anything. Instead I gave you our son.

We’re so resilient now, after everything we’ve endured together. I clung to you so needily in those weeks following Avery’s birth. Nothing was certain and we lived NICU visit to NICU visit. Little did we know that after those four very traumatic months the gut punches would keep coming. Cerebral palsy. Polymicrogyria. Your vision of your son, gone in medical terms and syllables that sent us reeling. My guilt over not giving you the perfection you deserved was suffocating. But I can’t say that your embracing Avery exactly how he was surprised me. He was the son we were meant to have. Together we understood that he WAS perfection.

I want you to know that Avery (and Abby) couldn’t have a better father. I’ve watched you teach our son to use a walker we never knew if he’d even be able to stand inside. Paint Abby’s nails and put Lego houses together with her. You’ve sacrificed so much to be the father that you are. You’re no longer the 20 year old I met three and a half years ago. You are the man you wanted to be but thought you couldn’t be. There are no two kids with a better Daddy than you. One day I hope that God sees fit for us to add another little monster to our mess. I hope she (or he) has your hair, your eyes and my attitude. And my spelling. Definitely my spelling.

I love you, Arick Elijah. For everything you are and everything you will be. For the non-stop laughs and being my anxiety medication. For having my back till the end, even if I’m wrong. For being MY best birthday present.

Avery,
We, Abby and I, we wanted you long before you came to us. My girl wanted a playmate, someone else to adore like all of her friends had. I just wanted my only child to have what she desired most. No, you didn’t come as I expected. But from the moment I knew you were coming I knew you. My son. I’d finally get to have the son I’d wanted for so long.

When you were taken from me our connection didn’t weaken. It grew stronger. I instinctively knew if you were struggling even when we weren’t there. We’d stay just a little longer because I felt like we just needed to, right before you had an episode. Our bond was, and still is, tangible. Your Daddy and I lived and breathed you for the first four months of your life. We watched you grow from a red, thin-skinned little creature into, essentially, a newborn. And now here we are, you’re turning 2 years old today.

We knew before you were born that you may have difficulties. Cerebral palsy was tossed around quite a bit, it being so common with extreme preemies. When we got your diagnosis at 13 months, I expected that to be it. We were sucker punched by polymicrogyria. By the realization that you would have endured CP had you been born full-term. But we’ve all grown so much since then. Having your diagnosis has brought answers and a small bit of closure. We accept you as the child we were meant to have. I cannot imagine an alternative to precisely what our lives are. Or to who you are. You are amazing, son. You’re determined and tough, loving, head strong, feisty and so smart. Can you believe that I used to worry that you wouldn’t be smart? That you’d suffer unnecessarily. I don’t anymore. The light that shines from within you is so bright, son. You’re perfect, and I’ll spend the remainder of my days ensuring that you know this.

I looked at you yesterday as I changed your clothes. I saw something I rarely see. All of your scars. We’re just noticing many now as you grow, evidence of those long forgotten IV’s and surgeries that saved you. I realized I don’t see you as the broken child, the one who’s been mended so many times that you can see the seams. You aren’t that to me. You’re just my son.

I promise to always be your biggest supporter. To be your loudest cheerleader. To stand behind you in all of your endeavours in life. I promise that I will do whatever is in my power to make your life better and to make you stronger.

I can’t wait until you wake up, and I can kiss your smiling little face good morning and proclaim you two years old. You’ll get excited and try your best to hold out two fingers, but that second one just doesn’t stay up as well as the first. And that’s okay. I can’t wait to watch you go pick out your favorite toy and crawl back to me with it. You’ll kiss it, stand up in front of me and demand I kiss it, too. I hope you always have that love for everything. I hope that it is an extension of my love for you, you perpetuating the love you’re always shown. I just can’t wait Avery, to pick you up and hug your tiny little body, my two year old disguised as a one year old. I can’t wait…

You’re still the child of my dreams. You always have been. I love you as far as the east is from the west, and then a little farther.

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Momma

Published

This piece began as a blog post and ended up an (accepted and published) submission to The Mighty. I am proud to say that it was then shared by Peek-a-boo ICU’s Facebook page and as a result it reached the exact audience for whom I wrote it.

I’m honored to have been published and to have a piece I’ve written be successful. Writing means a great deal to me and sharing Avery’s journey has been the catalyst to seeing some of my personal dreams realized.

Henceforth, I will post all new works here to easier facilitate sharing them with potential publishers and to have a more concrete place for people to “find us.”

Tremendous thanks to everyone who has been here for us through it all and especially to those who told me bite the bullet and just do my thang.

❤❤, Steph

http://themighty.com/2015/09/5-things-id-tell-all-new-micro-preemie-parents/

Nine Years

Another year has come and gone where once again I’m inevitably forced to realize that I’ll never be quite “over it.” No matter how many years pass, no matter how much my heart is healed by time- that’s how it works, right?- I’ll never be able to force myself to ignore the significance of this day. The truth is, I don’t want to forget. In my mind, forgetting his day would be forgetting him. And I won’t allow that to happen.

Nine years ago today the thing that would most define my 20’s occurred. I experienced the death of my child for the first time. The death of my second child to be precise. Sad how I’ve now experienced the devastation of loss so heavily, so often, that instead of saying “I lost my second child” I find myself saying “The first (second, third) that I lost.” I fondly remember my pre-loss days when I blindly assumed that pregnancies lasted 9 months and resulted in healthy, screaming infants. That blissful innocence was stolen from me. Ripped from me by a force that leaves me reeling to this very day. Now, I am having the same thing define my 30’s with a much more malevolent tone than before. Now it’s become: I’m 2 for 5 and the clock is ticking. 2 for 5 and it’s quite possible I’ll never get the chance to change that ratio whether for the better or worse.

I can’t think back on this day without being filled with regret. I regret not going home that night, not attempting to pull myself together. I should have given myself time to get over the shock and fear so that the decisions I made wouldn’t have been driven by that fear. Instead I chose to be induced immediately. I wish I’d have held him. They offered. One nurse who was there during his delivery came back hours later in the middle of the night and whispered to me as she took my vitals. “I don’t want you to regret not seeing your baby. Don’t be scared.” Still, I refused. The next morning, 19 hours after first learning my baby had died, I left the hospital no longer pregnant. I know in my heart that my decisions wouldn’t have been the same had I taken time to digest what was happening. I just wanted it over. And that’s what I got. Along with this burden of regrets. I hate that I didn’t  question the paperwork I signed when they hastily explained that I could send his remains to the state for research purposes. I didn’t realize that he wouldn’t ever be coming back to me…that I’d feel his absence in every fiber of my being.  I was 21 weeks and even by state law my baby was entitled to burial. (I’d have chosen cremation.) Two years later I’d go on a quest to find out what happened to his remains. Now, I regret my curiosity because I wish I didn’t know. Ignorance, in this case, was the best option. Bliss. I wish I’d given my first two children a better father. Does that sound hateful of me? Stupid? I know if not for him Abby wouldn’t be Abby. And I don’t -can’t- regret she or her brother’s existences. I just regret that I didn’t provide them with a father who would be everything they needed and deserved. Doesn’t our son deserve to be remembered at the very, very least? But regret won’t get me anywhere and will only cause me exponential pain in the end. I’ve got to find a way to let go.

I have this idea that, from this year forward, I’ll celebrate the births of all my children. I don’t want to be depressed and mourning anymore. I can’t imagine a life where I feel like this three times a year. Where my life stops and I become the mess I am right now. I believe in God and I know he’s prepared a place in Heaven for me. I know my dad is there and I find peace in the fact that my babies are there with him. I’m here, destroyed over what I’ve lost without realizing the gifts I’ve been given in the first place. All of my children may not be here with me but I know that we will all be reunited again. In the past, I don’t think that belief was enough for me. Now, it’s everything. The comfort it provides me cannot be described.

So I’m going to make him a cake today. I’ll try not to cry while I talk about why this day is special and must be remembered. Maybe I’ll succeed, maybe I won’t. Either way I know I’ll have the support that I need. Between Arick and Abby I think I’ve got the two most caring, loving souls God himself ever created. So I know I’ll be okay. We’ll all be okay.

In the end, I have to thank my first son for giving me my second. I’d love to have him here with us, almost nine years old. To have both of them. But the fact is that if he were, our Avery wouldn’t have been given to us. One thing that I know without question is that Arick and I both NEEDED Avery.

The good news is, I no longer feel compelled to question God. He knows me, he knows my heart and my desires. And He certainly knows what He’s doing.

Happy 9th birthday, Damian Alan. I can’t wait until the day I get to hold you in my arms for the first time. Because I’ll have waited my entire lifetime to do so.

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Eternally grateful for the kind nurse who not only took these very tiny footprints for me but took pictures of him and kept them safe until I was ready to see them.