Taking out the Trash

One of the most lasting memories from our NICU journey is something I still think about often. I replay the scene in my mind and, like most of those memories, they transport me right back there. I can hear the monitors beeping and the slight whooshing sound from the ventilator as it forced air into his tiny body. I see him there, lit up under a bright light in a dark, quiet room. A beacon of helplessness calling out to me. Needy, puny, sick. Pencil legs and transparent skin. Our little Avery. It’s not just those sights and sounds that are brought back. It’s the conversations we had, too. The ones Arick and I had late at night, huddled together in front of his isolette doing the only thing we could: look at him. Or the ones we had with some of the many parent friends we made. The quick, hurried meetings with a neonatologist or neonatal nurse practitioner or the late-night, personal exchanges between us and the many nurses we fell in love with. And that  is where this particular memory lies.

We grew extremely close to some of Avery’s nurses. Probably too close, at the time. One in particular- she will know who she is when she reads this- became what I can only describe as our safe place. When we’d walk into the NICU at 8 PM and she was there, we’d exchange a knowing look and smile. She spoke to us like we were Avery’s parents and trusted us to begin helping with his care when he was ready. It’s so easy to get lost in the meticulous nature of caring for a micro preemie and not realize that these two people standing before you are this child’s parents. The nurse is, in all honesty, the parents’ #1 source of information and support. We found that there were nurses who did what needed to be done and moved along and then there were nurses like her. Those who asked us questions and listened while we asked ours, answering them to the best of her (or his) ability. With her, we just clicked on a different level. We grew to love her. That isn’t to say that she was the only one we treasured. There were many nurses at CLRMC like her. We were blessed with a fantastic team. We owe them our son’s life. Unquestionably. But her…she was special to us.

Arick and I spent hours every night standing, sitting, praying, holding each other and just staring at the tiny little boy we’d created. It was all we could do. There were many days when I didn’t think he’d make it. When I’m sure even THEY didn’t think he’d make it. We’d stand over him and talk about the future because it was the only way I actually believed that he would have a future. We’d joke, play and talk to Avery the same way we always have. Our unique, quirky senses of humor kept us going. Laughing to keep from crying? That type of idea. And we did laugh. Between every single tear.

This night in particular Avery was behaving himself. We’d gotten to touch him as she did his diaper change and even held the thermometer in place to check his temperature. I remember well because it was this nurse, this beautiful soul, who first trusted us enough to begin teaching us these things. He was still tiny, under a pound and a half at the time, so as quick as we started he was back fully secured in the safe warmth of the closed isolette and we went back to our conversation. Arick, more faithful than I was for the entire NICU stay, looked down at Avery and did the unthinkable. He made a joke that soon, Avery would be cutting the grass and taking out the trash. My head snapped upwards- he’s over a foot taller than me- so fast I’m surprised I didn’t get whiplash. “He will NOT be cutting any grass and taking out any trash! NO!” His innocent joke turned me into sad, depressed, mess Steph. How could he say that this tiny baby would have chores? How could he expect him to do things other kids are expected to do? How could he imply that he’d be normal?

A few minutes later his nurse came back by to check on him and we asked her opinion. If anyone was qualified to end this debate it had to be her. “What do you think?” Her answer pulled the rug out from under me.

We didn’t debate it any more that night. I mean, I knew it was really me that was right. It’s a simple task- taking out the trash- an easy idea. But goodness all the internal conflict I’d have over it across the next year. Who knew that little conversation would haunt me so? That it would cause me to examine myself on a level that made me so uncomfortable?

Well, I can say it now: he was right.

Prematurity was just the first bad card in the mess of a hand that Avery was dealt. Within eighteen months he’d be diagnosed with cerebral palsy and a rare brain malformation to boot. Both completely unrelated to his prematurity and congenital. If you look at his chart, that inches thick book with the myriad of problems listed, and marked off prematurity, no one would even notice. He has virtually no medical problems that can be tied directly to it. But polymicrogyria? Go ahead and bold that word. So we learned pretty quickly that Avery’s life would be far from normal. In fact, we’ve flown by the seat of our pants from that very day. We can’t tell you what Avery will and will not be able to do. A year ago I may have said “He might not ever walk.” But now he runs. Awkwardly, and a little sideways. And he falls a lot. But boy does he run! So that little word took on an entirely new meaning to me. I was forced to do something that I really didn’t want to. I had to define normal for myself. This is what I learned.

Normal is clearing airways while your son chokes and gagging on most foods. Normal is not sitting up until 18 months and not walking until days before your third birthday. Normal is neurology, gastroenterology, pulmonology, ophthalmology, physical medicine and rehab, pediatrician, physical therapy, occupational therapy and speech. Normal is AFOs and SMOs and hand braces and diapers until the end of time. Normal is aspiration pneumonia, surgery and hospitalizations. Normal is a 3 year old who is just beginning to be able to communicate his needs but still can’t tell you if he has pain. Normal is ARD meetings, IEPs and the preschool program for children with disabilities. Normal is fear and tears and fight. Normal is analyzing every single thing he does because our only real certainty is that the chance that he will one day start having seizures far outweighs the chance that he won’t. Normal is watching your child do things you feared they never would. Worrying when they’re sick and stressing about every cough. It’s feeling isolated and alone and like you have no one in your corner. Normal is Avery.

So I had to think…I knew what my definition of normal was. Now I needed to decide what Avery’s would be. And the cold, hard truth? It’s going to be whatever we make it. I decided from day one that I didn’t want him to be different. So why would I place limitations and labels on him when the world is already going to do plenty of that? Who am I to say that he shouldn’t- that he can’t- take out the trash? Or clean up behind himself? Or potty train or finger paint or do the things typical three year olds do. If I tell him he can’t, he never will.

I’ve resolved to never use the word can’t with him. He can and he will, whether he needs accommodations or he can complete the task alone. I’ll never tell him he isn’t capable. If he was capable of surviving everything he has, taking out the trash will be nothing.

That one conversation brought all of this. I think about it quite a bit because it was a moment that my tough façade crumbled and you could see the weak person hiding behind it. I’m ashamed of that fear I felt but at the same time I’m grateful that it happened because of the growth it led me to. So to that nurse, the one who knows who she is- thank you. You made so many of our hardest days bearable and your love and devotion to Avery made you irreplaceable. I hope that you know, even today, what you mean to us.

You’ll be pleased to know that, as soon as he outweighs the bag of trash, he’ll be taking care of that.

And anything else he wants to tackle along the way.








Letting Go

As I walked out of Avery’s school this morning I paused just before I stepped out onto the sidewalk. I squinted my eyes and looked back through the double doors past the office and could just make out the back of his little blond head bobbing on the last seat of the cafeteria table. Tiny little Avery, aide’s arm wrapped tightly around him lest he fall from the chair he’s much too small to be sitting on. In the seven weeks since he began going to school, I’ve become a master lingerer. I’ll stand just outside the door of his classroom or just down the hall. Or perhaps behind the bookshelf between the door and the carpet he’s supposed to be sitting on. Once, I spent 2 hours in the parking lot, anxiety in overdrive after I saw an ambulance pull up just as I dropped him off- phone in hand, struggling to control the urge to ask. Is Avery okay? Is he crying? Bleeding? Coughing? Is his nose running? Are his shoes too tight and do you know how to tell if they are bothering him? Is he warm? I’ve had weak moments where I ask but for the most part I resist, because we all know what I’m really asking. Are you capable of taking care of him?

For the first two and a half months of his life, and if I’m being really honest, the full four months of his hospitalization- Avery wasn’t really mine. I couldn’t hold him, feed him or rock him to sleep. I made no decisions for him save for those regarding surgeries and medical procedures that needed parental permission. He lived in a box, in a hospital, behind locked doors. And for that, I’m grateful. His life was saved by some of the most capable, loving hands and minds that you will ever come across. But he wasn’t ours. After two and a half months, we began holding him in order to feed him and were able to change his diaper and do other small parts of his care. We’d visit several times a day to take part in this, making sure we fed him as much as we could. Then we would hold hands, say a prayer, kiss him goodbye and walk out those locked doors. Without him.

On his one hundred and eleventh day of life, he became ours. We signed a mountain of papers, learned to operate medical equipment and took him out those locked doors with us. I cried more tears that day than any other day during his stay. Why? Complete and utter fear. Nurses and doctors had been caring for him his entire life and now they were just handing him over to Arick and I, trusting that we could do everything they’d been trained to do? But what if I didn’t give him one of his nine medications on time? What if he had an apnea episode? What if he stops breathing? My fear was justified but eased by every nurse who came to me that night and told me that I’d been doing it alongside them for weeks. They wouldn’t send him home with us if they didn’t know we’d be able to do it. I know now what that fear symbolized. I was asking myself: are YOU capable?

I’ve doubted myself nearly every day of his life. When he’s got a fever I instinctively want to run to the ER. A strange cough from him can send me into a panic because he simply isn’t a typical child. He gets sick easier and stays sick longer. RSV or bronchitis are automatic hospitalizations. But, I’ve learned on the fly. I know his cues, and I’ve never been wrong when I feel like he needs to be seen. Across three years I’ve taken those nurses places and become his caretaker. I became his Mom. Well, I became THAT Mom. That he CAN’T eat that, stay away if you’re sniffling, no he can’t have a sucker, I’m not trying to hurt your feelings but can you please not do that, you better be patient he just learned to walk, please teach your children that we’re all the same inside and all the world needs is more love Mom.

Which brings me to my point. School. And the release of some major control.

Avery goes to a regular elementary school with kids from pre-k to fifth grade. Well, except for his class. The best class: PPCD. The preschool program for children with disabilities is a special place, to say the least. Avery is one of seven kids ages 3 (although he’s the only three year old) to six with disabilities ranging from down syndrome, intellectual impairments and speech difficulties to him: the little one with cerebral palsy and a brain malformation. They have structure and are taught their ABC’s, 123’s and all of the other things they’d learn in a typical “preschool”. There’s PE, breakfast, lunch and our kiddos get physical therapy, occupational therapy and speech therapy as needed, all in the classroom setting. From the moment I walked into the classroom I knew it was special and that Avery would thrive in that environment. But letting him, that was a different issue.

And he hasn’t made it easy. In the beginning, when we’d drop him off he’d fall to the floor in tears. Or he’d look back at us while they drug him down the hall, fat bottom lip sticking out and Texas-sized tears falling from his eyes. That was when I’d linger. I’d hide and wait to see if it stopped. And it did. It always stopped. Sometimes within seconds and others in minutes. By the time the morning song started he would be singing and dancing with his little (big, haha) classmates. Mommy left him but he is okay with it as long as he is having fun. And when he isn’t? He throws a fit, takes off his clothes, fights with J (who I’m told he can actually hold his own against!) or throws things. He’s three. It happens.

Aside from one hospitalization Avery has never been away from us for longer than a night. He’s never been to a babysitter, to daycare or to stay with anyone who isn’t related to him. Now, I drop my son off each day with three strangers to take care of him all day. To feed him, clean him, change him and teach him. To keep him safe, warm, and happy.

*I paused here while writing this to go to the grocery store. Standing in the produce section, my phone began to ring. I looked down. Avery’s school. Normally, if there are issues, his teacher calls me herself. Confused, I answered. It was the school nurse, letting me know that Avery had fallen and hit his head and wasn’t acting right. They insisted I take him to the hospital. He smiled when he saw me and perked right up in the car so I think I’ll say he’s okay. I mean, he falls quite a bit. He’s got cerebral palsy and he has only been walking for two months. All of this to say, told ya. I worry. I worry a lot. See why?*

But back to keeping him safe, warm, and happy. Can they? Do they?

Yes. Last week, a cold front came through during school hours and I, not realizing it would be that cold, didn’t pack a sweater. Avery came home wearing a hat. Today, they called me immediately when they felt that he was acting unusually. His hand is held and his nose is wiped. His teacher has often told me: wipe your tears, Momma. He’s gonna be fine. It’s you I’m worried about.  So, I wasn’t ready to let him go. I didn’t think I could do it. But I want him to go into a mainstream kindergarten class alongside your children. I want him to have every opportunity to thrive and succeed. So I made the decision that was best for Avery, not for myself. I let go and let him go.

This morning, I made it all the way to the sidewalk before I looked back. That’s real progress from the me who stayed in the classroom until they asked me to go. Will I ever stop looking back? Probably not. But one day, when I look back and I can’t see him…when his little blonde head isn’t visible anymore because he’s off somewhere having fun and changing the world, I’ve made a promise to myself that I won’t freak out. I’ll take a deep breath, turn around, and go home. And I won’t even text them.




The Upworthy Article

A few weeks ago I got an email from a writer at Upworthy. He was working on an article and in researching he had come across a piece I’d written for The Mighty and, in turn, my blog. He wanted to know if he could use excerpts from my piece within his piece. Before I could answer him I needed to know more about the tone of the piece and the content. What would he be telling the world that my name would be attached to? Turns out, he was working on a piece about random acts of kindness by strangers involving kids. After hearing this I was sold and gave him my blessing to write about our experience.

The world needs more kindness. Less judgment and more of people helping one another. Three years ago, I was the first to judge the mother whose child sat naked in a diaper in the Wal-Mart basket. To question “What is wroooong with that child??” when hearing a kid throw a tantrum. I thought that because my child was fully dressed, clean and quiet I was succeeding where they were not.

Then, I gave birth to the tantrum thrower. The child with the messy face and hair who may not always be wearing pants. The kid who has needs that may not be visible to the naked eye. I’ve learned not to judge anymore. Now, I want someone to say something. I beg them to give me their opinion. I wish some ballsy old version of myself would try to shame me. Because then I could put them in their place like only a Momma bear, therapy three times a week, braces and Baclofen twice a day, gotta get my son a wheelchair special needs kinda Momma can. I don’t want that.

Be kind to one another. Oftentimes that Momma is doing the best she can. We don’t know her story. She doesn’t know ours.

With that said, I am so humbled by the opportunity to have my work recognized and used for the greater good. A writer appreciated my work enough to use it in his own. That’s huge for this amateur! And also, so much love to Arick for inspiring me to write the original piece with his love and dedication to our son. He has my whole heart.


Finding My Nemo

We decided months ago that Finding Dory would be the first movie we took Avery to see in theaters. Since he’s 2 and a half now, he enjoys watching TV and understands a great deal despite his brain malformation. Polymicrogyria has taken his ability to use his left arm and given him a speech and learning delay- so far- but it hasn’t stolen his sense of adventure or attention span. He loves cartoons! He also has cerebral palsy as a result of the PMG and we are realizing that, as he grows, it will become increasingly more difficult to make accomodations for him. So now, while he’s small, we decided to do what may be too difficult to do often in the future. To do something normal.

This isn’t about Dory, though. It’s about Nemo. My Nemo.

The night before we took him, we decided to watch Finding Nemo since it had been years since his father and I last saw it. So many years that I wasn’t a special needs parent the last time I watched it. So many years that all of the little things that jumped out at me this time weren’t even given a second thought before. Why had I never looked at Nemo and seen his disability? Sure, I realized that his small fin was part of the storyline. But I never realized how integral it was to the story.

Avery was born weighing just a little over a pound. You may wonder, what is such an extreme preemie made of? Strength. Determination. Fight. Courage. For the first four months of his life, Avery lived in the NICU. Fighting for each breath. Just like Nemo was determined to return to his father, my son was determined to fight for the very chance to come home to his. They both fought insurmountable odds to return to their families. Realizing the parallels, tears began to stream down my cheeks.

Me? I’m Marlin. I’ve taken on the role of helicopter Mom with fervor. “Avery, be careful.” “He CAN’T eat that.” “Make sure he is breathing well.” “I’m just checking his breathing.” “Yes, again.” Don’t go to far, or crawl too quickly, or stand near that person who just sneezed. Like Pavlov’s dogs, I’ve been trained. I expect the worst because, historically, I’ve gotten the worst. Marlin and I, you see, I think we suffer from PTSD. We fear for good reason.

As the movie went on I realized I was being taught a lesson, not only as a mother but as a person. If Nemo’s imperfect fin could be his “lucky” fin, why can’t Avery’s left arm be his “lucky” arm? Why does it have to be a disability? We’ve been taught to look at differences as imperfections for so long and instead of embracing them we’re embarrassed by them. I don’t want to see the day that my son isn’t proud of every unique part of himself. So what if he isn’t made like everyone else. He was given a journey all his own. That journey just so happens to include a unique brain and a lucky fin.

Avery’s journey is far from over. He will have many more mountains to climb in the future. I’ll have many more worries. New, terrifying worries. How will we ever make it? That’s easy. One breath, one flip of a lucky fin, one “lefty did it!” at a time.

Just like Nemo did.


Here I am, again.

I had a gut feeling, I guess. From the moment that second line showed up I was skeptical. The part of me jaded by loss whispered in my ear, “it won’t work out.” Arick insisted that I stay strong and grounded. I tried. I tried so hard to be positive. But that nagging feeling wouldn’t leave me.

While I can’t say this baby was planned, I will say it wasn’t prevented. For the first time in three years we weren’t surprised by a pregnancy. We embraced it, both truly happy to have chosen to add this child to our family. We’ve never been disappointed or unhappy without our surprises but this one felt different in that we knew it was a possibility.

My previous losses have always been late. Neferious losses that caused me to endure induction, labor and emergency d and c’s. Eleven weeks, sixteen weeks, twenty-one weeks. I was always past that “safe zone.” We’d heard heartbeats, seen squirmy little legs on grainy ultrasound screens. And then they were gone. We were forced to retract our announcements. To tell the world the news that we were sadly no longer expecting.

Now, once again, we are no longer expecting.

With each loss I would swear I’d never tell a soul should I ever be pregnant again. Not until the baby was snuggled safely in our arms. Like a fool, each time I go back on my word. I get too happy and end up sharing the news. It was no different this time. I’ve never had an early miscarriage so that fear wasn’t strong. It’s weeks 10-20 that terrify me. Yes, I had that nagging feeling. But I always made it safely through the first trimester. So we shared our joy with our loved ones. Now, we shamefully take it back.

It’s embarrassing, humiliating and demoralizing. I cannot adequately perform what my very body was made to do. I am woman…I should grow and give birth to children. But for some reason the ability to do so effortlessly was lost on me. Instead I am a wasteland. A dry, unwelcoming desert. And there is absolutely nothing I can do about it.

The hardest part has been seeing Arick as heartbroken as I but unable to express his pain. It isn’t the same for a man, I know that. He’s got the added burden of being my protector and source of strength. Meanwhile, not only does he hurt but my pain causes him to hurt more. This time I told him, he doesn’t deserve to be going through all of this. He said,”No one does. YOU don’t.”

I stopped asking myself “why me?” long ago. I never want to grow calloused to the gravity of loss. Each and every child has been very much loved, and very much wanted. But when is enough, enough? I know Arick struggles most with this. Why get pregnant at all if you don’t know that you’ll bring home a child in the end? My answer to this is faith. I have faith that whatever is in God’s plan will be. I’m not super religious but I believe each life created is sanctioned by Him. And it is His to take away.

I’d like to say that I’ll never again tell you that we are pregnant. I despise the way I feel right now. It’s so uncomfortable, so raw. But I can’t say that with certainty. We both feel as if there is room for one more child in our family.

So our plan going forward is to not have a plan. I don’t know where that will take us. I just pray that the road is paved smoothly, with less bumps and more sunshine. And maybe, if we’re lucky, there will be a rainbow on the other side.

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.


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.