Six days. That’s how long we had to wait. Six long,¬†excruciating days until Avery would have his first brain scan to check for bleeds. Those first six days he was on min stim (minimum stimulation) in an effort to keep him calm and still. Diaper changes occurred every 3 hours like clockwork, expedient and no nonsense. If he did have a bleed, they’d need to ensure that it didn’t worsen. In those six days I touched my son once. A compassionate nurse looked at me across his isolette as she changed his diaper. I watched everything; true to my nature I had to soak it all in, see it for myself, study it. “Do you want to touch his foot?” Boy, did I. I reached out, opening the portal gingerly. My right hand darted inside and I ran my pointer finger along the length of the bottom of his foot. It felt like velvet, satin. Luxurious and unadulterated. As quickly as it entered I withdrew my hand lest anyone see the rule breaking pity that had been offered to me. One touch in six very long days. That one touch got me through.

Brain bleeds are common among micro preemies. A micro preemie (versus just a preemie) is defined as a baby born before 28 weeks gestation and weighing less than 1 lb 14 ounces (some sources say 2 pounds). The technical term for a brain bleed is an interventricular hemorrhage or IVH. These hemorrhages are graded on a scale- level 1, 2, 3, 4. The worse the bleed, the worse the prognosis. Sometimes, babies will need pressure relieved when they have a bleed and require shunts or other procedures. I won’t pretend to be an expert because I don’t know much about them and that’s fine because as it turned out, Avery didn’t have one. We celebrated the good news on that sixth day.

It wasn’t all roses, though. The doctor explained to us that Avery DID have a bleed inside his tiny head, but it wasn’t inside the ventricles of the brain. Instead he had a parietal (right side) subarachnoid bleed. This means that bleeding occurred in the fluid filled region below the arachnoid and above the pia mater on the right side of his head. This is right under the skull’s surface. We were simply told that they would watch it with scheduled brain scans and that they expected that it would begin to heal. It was no longer bleeding and was thought to have been a result of his quick and violent birth. Ok. As long as it wasn’t an IVH, we were good. I’d been researching them from the time they mentioned the brain scans. Funny, I never read about subarachnoid bleeds.

Except to say that it was absorbing, nothing else significant was ever said about the bleed. Periodically we’ve been asked if he had an IVH by doctors, nurses, therapists and my answer is always the same. No IVH but a subarachnoid. Let me be clear, I’m not placing blame here. Until the day I expire from this earth I’ll be grateful for the doctors and nurses who saved my son’s life. Their hands work as God’s hands each and every day. I owe them my son’s life. There is no place for blame here, only gratitude that my son is laying here beside me asleep right now. We just didn’t know.

For the first few months out of the NICU, Avery seemed to be on schedule with his adjusted age. It wasn’t until around 9 1/2 months actual, 6 adjusted, that I began noticing things. His clenching of his left hand and foot. The tightness in his arm and shoulder. His preference for his right arm. He couldn’t roll yet from either his belly or his back. He wasn’t babbling or trying to talk. That’s when I called ECI and asked to have him evaluated.

Avery is delayed in all areas. He can now, at 15 months, roll both directions effortlessly. He gets onto his side and pushes himself semi-upright using his stronger right arm. He can’t sit unassisted or stand alone. He’s said 3 words: mama (3 times), Dada and baba. He just began mimicking expressions but it is hit and miss. He’s silly and ornery and does things his way so you never know what you’re going to get. He works hard though, and impresses both myself and his therapists on a regular basis. A month ago I was lucky if he’d eat a half jar of food a day. Now, he eats voraciously. If you don’t spoon it fast enough he will slap the tray and cry. He’ll easily finish two jars a day even with cereal added in. We’re beginning to add textures so that he can begin table food within the next few months. We’ve had people give him a bite of something and he chokes and vomits or they’ll insist we should just GIVE HIM A FRY. You can’t do that with Avery. His tiny throat is scarred and damaged. He had a breathing tube down his throat for 5 weeks and a feeding tube for much longer. He isn’t a typical child. He needs to be worked up slowly, gradually, to new textures and foods. Believe me, if it was that easy, I’d be doing it. The last thing we want is him associating eating with choking or pain and becoming scared to. Once he’s orally adversed its very difficult to overcome. He’s getting there in his own time.

Around his birthday we noticed his right eye going inwards. At first it was just a passing thing, maybe once a week. Recently, it’s become difficult to take a picture of him without his eye crossing. We scheduled our yearly with Dr. Hittner and last week we saw her. Flipping through his chart she stopped at parietal subarachnoid hemorrage. That’s it, she said. That’s what is causing this. He’s got a loss of muscle control as a result of that bleed. He needs to see a neurologist immediately. His cerebral palsy symptoms, everything can be attributed to that.¬† His eye is healthy and has no damage. It is the muscles around his eye and within his eye that just aren’t strong enough to function properly.

The news was hard to swallow. I began to tear up as I always do when they’re telling me something is “wrong” with Avery. That brain bleed wasn’t so minor after all. Outside the office that morning I did what Arick refers to as “my thing” and I googled. I don’t know why I’d never googled it in particular before but now was the time. I typed in “parietal subarachnoid hemorrhage.” Expert googler, I looked for a reputable medical source and clicked. The first line read “parietal subarachnoid hemorrhages usually result in death.” I closed the window. Crap. Seriously? Death? Logical person that I am I was behaving completely ilogically. My son was alive…I was holding him! He survived it. Time to move on.

Avery hasn’t seen the rehab doctor or neurologist yet but his therapists and pediatrician are certain that he has cerebral palsy. He’s a classic case of high tone on one side. Soon we’ll see those doctors and know what type he has and have a game plan for the future. We don’t know that Avery will walk. There’s so much we don’t know. I work with him daily, stretching his tight muscles and working on movement. He can do things now that I only dreamed about 3 months ago. He isn’t content sitting in your lap if there’s things that can be explored. He twists himself until he’s out of your grasp and then dives. Usually he’ll be stuck within a few minutes and Momma has to rescue him but it doesn’t slow him down.

I have faith both in God and in my son that this will not stop him. His determination is something like I’ve never seen before. If we knew that the brain bleed was cause for concern before, it wouldn’t have really changed anything. I’d have still had to wait for the signs and symptoms to manifest. Some babies have bleeds and they heal fine and go on to not have any delays. Each child is different. So we’ll see. I know he won’t let this stop him. So I can’t let it stop me. I can’t cry about it or spent time pitying him. We have too much work to do!

At least now I can take comfort in snuggles with him when I’m feeling sorry for him. I’ll say his name and when he looks up I’ll smile and he will return his crooked little smile as if on cue. I’ll tickle his foot and he will laugh until he turns red. I’ll tuck his little head into the crook of my arm and we’ll nap together in the middle of the afternoon.

Yeah, six days was nothin’.


Six days old, we carefully touched our tiny son’s body for the first time.



I’m damaged. Irrevocably broken. Like Humpty Dumpty, I’ve for years considered myself doomed to never be put back together again. I’ve kept no secrets from anyone. In fact, I remember the exact moment that I issued Arick my warning. It began something like “I need to tell you now, I don’t want to mislead you…” followed by the inevitable “but.” But: I’m broken. Proceed with caution. He assured me that wasn’t true. I scoffed, left him to his delusions. What did he know, the guy who went from work acquaintance to best friend to lover in less than 6 months? Not enough, that’s what.

I grew up in a volatile home. Alcoholism. We feared my dad and had good reason to. I can’t say he ever hurt us kids because it would be fabrication. But my Mom…gosh. We were the kids hunkered in hiding until the fight was over and when it was we’d usually witness Mom’s blood. I’ve forgiven my Dad, he made peace with me before he died prior to my 20th birthday. So that’s all I’ll say about that except to say I believe he made peace with God as well. I pray that he did. I miss him, now, because when he cared, you knew. In the months before his death, his “sober, AA days”- he became a different person. Loving, even. He began calling just to talk. One day I was busy trying to make a pie for my husband before he got home from work and Dad called as I was gathering the ingredients. I realized I had no baking powder so I mentioned I’d make it the next day- Ray’d taken the car and left the standard truck I didn’t drive so I couldn’t go out for it. I hung up with Dad and started supper. 45 minutes later I heard a knock at the door. It was Dad, baking powder in hand. Silly how this one thing, that small thing he did for me, matters so much. It was his way of saying “I love you.” I wish he was here now, like he was then, to know my kids.

Then came Ray. Three years of my life that inevitably added damage. I had everything going for me. I was early accepted to college and wanted to go more than anything. I’ve always loved to learn, read, study…figure things out. I wanted to be an English teacher or an anthropologist. I met him when I was 17. Within a month I’d left home and quit school. We got our marriage license on my 18th birthday- October 10, 2000. He was 25 years older than I was, a recovering alcoholic himself. Just as damaged as me, maybe more so. I can say with complete honesty though that I never doubted his love for me. I know he loved me, but more than that I know he loved the idea of me. His 18 year old wife who he perhaps loved too much. He’d never tell me no, I had all I needed and more. He took care of me. They say girls look for their Dads in their mates, that they’re drawn to those inherent qualities they’ve seen in their father whether those qualities be good or bad. I think that I did that the first time. Temper, alcohol. The fights got violent by the second year and I knew I wouldn’t lead my mother’s life, I’d always told myself I’d kill the man who laid his hands on me. I still would. I tried to leave him 3 times but twice I went right back hours later feeling guilty. The third time I really did leave. I knew I wasn’t going back this time. He thought I’d cheated on him. For weeks he’d obsessed about my supposed transgression. Three days before the day I left for good he took an entire bottle – a little less than a month’s supply- of his mood stabilizing medication. For the remaining 3 days of his life I can’t say that he was “normal.” So we inevitably fought when I got home from work that evening. My mind made up for at least a week, I said I was done and packed my bag; I left to Mom’s. Between 3 and 4 am we were awakened by knocks on the door. I assumed it was Ray coming to get me and take me home, mad but repentant. It wasn’t. It was the Sheriff’s department coming to notify his next of kin. Ray was dead. He’d called them and said he was setting fire to the house and killing himself. And that’s precisely what he did. I became a widow at 21.

Within a year I was married to Abby’s Dad and pregnant with her. I’d found myself lonely and needing that parnership so I kind of just settled quite easily. At 28 weeks I was diagnosed with pregnancy induced hypertension. By 36 weeks I had preeclampsia and within a week I was so sick she had to be born immediately. Preeclampsia is generally cured by delivering the baby but in our case it wasn’t. When Abby was 7 days old I went back into the hospital for 10 days on a magnesium drip in a dark, quiet room to eliminate stress. By her delivery and my sickness I learned that pregnancy was traumatic. I never wanted to be pregnant again. I never wanted my life, or the life of my child, hanging precariously over that precipice again. Ever. But life has a way of messing with us, and we a way of messing with ourselves and a week before Abby’s first birthday I found out I was 6 weeks pregnant. I cried like a child, for weeks. The heavy, burdened tears of the unknown. By 16 weeks I had to go on medication for my debilitating depression, and I also suffered from a rare pregnancy side effect called hyperemesis gravadium. I threw up so much I needed IV fluids. I’d vomit spit I’d swallow. I was miserable. So when I lost that baby, my first son, I placed the blame appropriately on myself. I was selfish…stupid…blind. I didn’t deserve him anyway. It’s been 8 years but I remember every detail about that day. Waiting for the wheelchair to take me to L & D in the office full of round bellies and smiling women. Me, the one with the small bump crying silent tears. Scaring them. The last room down the farthest hall in L & D, furthest from the rooms with wreaths on the doors and expectant families just outside, waiting. The purple leaf on my door indicating to visitors that this wasn’t a happy room so don’t mention the baby. There’d be no screaming newborn in here. But I heard those screaming newborns all through the night. I wasn’t as tucked away as they thought. I remember my fear and refusal to hold my baby. His grandiose birth, still completely encased in the amniotic sac. My insistance that everyone just go, please just let me sleep. And don’t send the chaplain because I’m mad at God. He took my Dad, my 4 year old niece and now my son. In 3 years. Their Dad and I only stayed together 2 more years but on our son’s first birthday, he said nothing. Me: Do you know what today is? Him: Yes, it’s July 27th. Unemotional, unsympathetic. I got more from his 75 year old boss when I dropped him off for work for the first time after we lost the baby. He motioned to me from his truck, don’t go yet. He wobbled, shaky from numerous back surgeries but always refusing to use a cane or walker, over to the side of his shop where beautiful white lilies were in full bloom and he cut several. He painstakingly came to the car and handed me a bundle of them. “I’m so sorry. My wife and I went through the same thing almost 50 years ago. You never forget it.” He’d just put his wife into a home where she could be watched all the time. Alzheimers had stolen her from him and she now went on dangerous, pointless joyrides and found herself lost. She flooded the entire house, left things cooking until they burned away. I cried the entire way home that day for both his boss and I. And I never forgot. To this day he’s never mentioned our son. Not on his birthday or any other day.

I met Arick in July 2012. I was working and taking care of Abby, 7 at the time. We became fast friends. He often says that I’m the female version of him. As alike as we are, I knew that when he said he wanted a relationship, a real one…but he wasn’t ready for kids…that he was being honest. At 21 kids were the furthest thing from my mind; I too knew then that I wasn’t ready. I was 9 years older than him with a 7 year old. I broke things off without giving him half a chance and distanced myself from him for the next couple months. I was scared of how I felt those moments I allowed us to cross those friendship boundaries and I knew, just knew, no one would approve. He was 21, I was 30. I backed away.

In January I felt off, exhaustion sleep didn’t cure. This was unusual because I’d just lost 75 pounds and I’d recently had more energy than I had in years. But the weight loss also left me irregular, it came so fast that my body was shocked. Racking my brain it crossed my mind that I had no idea when my last cycle was. I took out my phone and checked my app. Late October was the last I’d recorded. October? No way. There was no way. When the test came back positive I swept it immediately into the trash can in one fluid motion. For years I’d imagined the way I’d find out about my rainbow pregnancy (as in a rainbow after the storm, rainbow baby is a common term among those who’ve experienced pregnancy loss and stillbirth). Not even knowing when I got pregnant wasn’t how I’d imagined. The truth was there was only one possibility. Just one. I was pregnant with Arick’s baby. And he wasn’t ready. I decided that night I wouldn’t, couldn’t tell him. Ever. Three days later I began to cramp at work. I went to the restroom and I was already bleeding. I went home early and miscarried by myself the next day. Only my closest friend knew what was happening and I swore him to secrecy. It’s been 2 years this week. Two years tomorrow.

What I didn’t know then was that Arick and I wouldn’t be able to stay apart. After I lost the baby I felt sickeningly drawn to him. He was still trying to mend things with me and for the longest time I resisted. He was so Arick though. The way he’d smile at me, deliberately hit me with a box as I passed. Invite me to a movie. Movies are still so “Arick and Steph.” By Mother’s Day we were together and had been, officially, for a few months. He made me feel so special that day. Something a husband had never done for me. I lay that evening with my head in his lap, thanked him for everything. The subject of January and my wall, my distance, came up. Those 8 or so weeks after I ran away like a scared cat. Him trying to get me to see that he still cared. I started to cry but couldn’t speak the words. Arick, I just can’t talk about it. You’ll be mad at me. Please, forgive me. “You were pregnant, weren’t you?” I was. 12 weeks to the day. “I’m so sorry I didn’t tell you.” Him: I’m sorry I made you feel like you couldn’t. I’ll always carry guilt and wonder: if we hadn’t gotten together, would I have told him? What if I hadn’t lost the baby and nine months later gave birth to a little red headed baby? Could I look him in the eye? Regret is a funny thing in the way that it can torture you.

I think back now to the night I told him I was broken. The night I warned him he didn’t want to deal with my issues. And I’m glad he dismissed my fears. Yes, he was young. He’ll sometimes try to confide that he doesn’t know how to be a father, a husband. I wish he realized that he didn’t need to know. There’s no handbook to a ready made family and if there was, he didn’t need to read it. From moment one he supported me and accepted what I was, flaws and all. He taught me not to be scared, not to worry what people thought. Do you love me? Well then stay with me. He eases my anxiety like only he can. When I start to come unwound he grounds me, even if that means taking me by the shoulders and telling me to shut up, that I’m being an unreasonable idiot. Its happened. That’s what husbands do. He may not have been ready to be a dad but when he found out he’d been robbed of being one I watched the tears fall from his eyes. Five and a half months after that very day he’d be a dad and I wasn’t even pregnant again yet. And we all know that he’s been amazing with Avery. I’ve been a mom for nearly 10 years but together we learned how to care for a medically fragile child and it’s been a whole new world. There’s no doubt our son made us better people.

When we lost our baby in September Arick was amazing. Present, loving, a gift. I know in my heart he was trying to make amends for not being there the first time. I’ve told him often that is my burden to bear, not his. But I understand. In the end he is a man and it is his job to take care of his family, the woman he loves. I get that. And I’m incredibly remorseful for what I did, or didn’t do, back then.

Arick has taken the pieces of me and reshaped them into something new. I’m no longer who I was; I’m no longer broken. For the first time in my life I feel as though I have what I need, the support and love that is necessary in a relationship. He’s 23 but that’s plenty man enough for me.

Sometimes I feel myself beginning to crack again and I fear the broken pieces will show. My facade will fade away and the pieces of broken Steph will be there for all the world to see. I’ve spent years fearing my past, worrying about how broken I am. Not wanting anyone to come in.

Now I can confidently say- welcome, come inside. It may not be the nicest place but it’s lived in. Loved in. And that’s what matters. It’s who I am. It’s Steph.