Seven

There’s so much about life that I’ll never understand. So much that occurs I will question to the point that it causes me to lose sleep. Even as a child I was this way. “What is past the galaxy, and why is the sky blue?” evolved over the years. Now it’s “why does cancer exist? why do kids get sick? and why does my son, and so many other children, have to endure so much pain?” Above all else, though, the thing that haunts 38 year old me the most is “why do all of my babies have to die?”

I spend a lot of time thinking about the bad things I’ve done in my life. Actually, the bad things that I have not done. I quickly decide that my bad things are all, in actuality, just stupid things. Got married at 18 to a man twice my age. Got married again to a nightmare 4 years later. Fell in love with a man 9 years younger than myself. (That one wasn’t so stupid, was it?) Drank too much. Got talked into doing things I shouldn’t have. But I haven’t hurt anyone, that I can think of. Can’t even say that I’ve even broken a heart because it was always mine that needed putting back together. I’ve told white lies. Maybe taken candy as a child. I’m distant at times and not the most consistent friend but I assure you that if I love you I’ll do anything for you. And I love a lot. It’s just who I am.

I’m bullheaded, and stubborn. If I think I’m right I’ll go down swinging. I’ll stand up for a cause even if no one stands alongside me. I’ll tell you to stop being a jerk if I catch you being one to someone else unnecessarily. I’ve been known to get kicked out of places because of my big mouth. Don’t even think about messing with someone I love. I’ll tell the truth when no one else will. I’m not afraid to hurt someone’s feelings if the situation warrants it. I’m okay with that. It’s all a part of what makes me, me. None of that makes me a bad person, though. None of it makes me deserving of the heartbreak that I’ve been through so many times now.

Last week, 2 days after discovering that our baby was measuring right on target with a healthy heartbeat, we lost that baby. My 7th loss. This was the second loss where Arick was forced to hold my hand as I lost an actual baby. Not a cluster of cells like two of the other times when it wasn’t much more than a painful period (not to minimize this- it’s just different.) Not like the one he wasn’t there for because of choices that I made without him. That one, ironically, was the easiest. Not like the one 3 short months ago when my body wouldn’t let go and I was forced to have surgery to remove the baby from my body. This was another one where our tiny baby was delivered into a doctors hand. Another one where once more I didn’t want to look. Didn’t want to feel. Didn’t want it to be real. Another one of the real shitty ones.

You don’t forget the look on the doctors faces when they tell you. I have so many of them in my head now that it plays like a horror movie highlight reel in my mind. Just last week, her walking in and handing me a piece of paper. “I know you’ve done this before and I want to be honest with you.” She hands me the ultrasound report that details how the baby, measuring exactly what it should, was in the birth canal with no heartbeat. The sadness in her eyes was palpable. I apologized to her. To the ultrasound technician, too. I apologized to the two nurses who took care of me and helped clean me up as blood continued to hemorrhage out of me. Multiple times, I told them that I was sorry that they had to do this. That, again, is who I am. I was sorry that night. I still am. I’m so sorry that they have to deal with the kind of sorrow that was me that evening. No one goes to work and says, I want to tell a woman and her partner that they’ve lost another baby tonight. She didn’t want to be a part of my horror story highlight reel, but she forever will be. And I’m sorry for that, too.

Today was my follow up visit. I’ve been seen a lot because, the truth is, I’ve been bleeding massive clots and hemorrhaging two to three times a week for 2 months. From the day I found out I was pregnant, which is why I thought I’d miscarried for weeks. I found out today that the blood clot I had was perfectly placed under the placenta and because of that, along with its size, there was almost no way that the clot wouldn’t cause the placenta to detach, especially if it continued to grow. Our baby measured the exact gestation, 9 weeks 1 day, because he or she was likely perfectly healthy and growing well. Their heart didn’t stop until the placenta broke away. That clot was a ticking time bomb that exploded, taking our baby with it.

I wonder, why do I have to carry this burden? I’m strong, but I’m not sure I’m strong enough anymore. I feel the cracks. The roughness around the edges of what’s left of my sanity. I’ve slipped just under the surface. It is so hard for me to reconcile with myself that I don’t deserve this pain. In my worst moments, I hate myself as much as life must hate me. I’ve come to despise the sound of my own voice. The reflection in the mirror doesn’t even seem like me anymore. It’s just the broken shell of what used to be a strong person. The facade is cracking and with it, I am too.

I’ve spent so many years telling myself that I’m stronger than everything that has happened to me. After my first loss, long before I knew Arick, when I gave birth to a baby boy not much smaller than his little brother would be when he was born 7 years later, I thought I could endure anything. I didn’t leave the house for a month, and I cried myself to sleep for double that, but I made it. I survived that, so I thought that I could survive anything. Then it kept happening. Each time I’d tell myself that it wasn’t damaging me. Now I think about all of the things I wouldn’t do, people I wouldn’t face for months afterward and life events I would miss each time and realize that it already had. It always had. The thing is, it’s also the person who I am to deny that. To put on a smile like my mom did every day and move forward. Be strong for everyone. I learned from the best, you know.

I do understand that you don’t have to be bad to have bad things happen to you. Life isn’t fair, nor is it easy. There’s a message here somewhere, and I have to accept that I likely won’t understand it during this life. My faith provides me the comfort that one day my arms will be filled. I trust that my babies lives had meaning.

We all love hearing stories of triumph over tragedy. How many times have we shared stories on Facebook of someone who overcame odds stacked squarely against them but who won out in the end? Persevering is hell, though, and we often forget that this pain is where purpose is found.

My pain is where my purpose will be found. It has to be.

In the meantime, I add a little bird to my shoulder. The ones who are flying away, because they weren’t meant for this world. The life won’t be forgotten. Not my me, because I’m their mom. 9 times I’m a mom.

7 just wait for me in a much better place.

Number 6

This week, I had my sixth loss. For the third time in my life, I left a hospital with empty hands and an empty womb. Four, if you consider that we left Avery there for four months before we got to bring him home.

I used to wonder how much a person could endure before they broke. I even vaguely remember mentioning this to Arick after I woke up from surgery, but about my mom. She went through so much heartache and didn’t break. Not the same type of heartbreak, but a plethora of it nonetheless. Thursday I realized that without even knowing it, somewhere along the way I’d put on her shoes. They are well worn and not at all comfortable, but I guess they’re my shoes now.

For a long time, neither of us really wanted to even think about trying again. Our loss at 16 weeks right before Avery turned a year old changed Arick, I think. It killed the part of him that still wanted another child. He watched me labor and deliver that baby. When it was born, they left him/her in a basin in the windowsill for hours afterward. They didn’t want me laboring on the L&D floor and hearing all the babies, so I was on the regular floor. This equated to them having no idea what they were doing or how to handle a woman losing a baby. Arick eventually had to ask them to come get the baby and take it to pathology. Traumatic? Not even the word. Then, after 2 back to back early miscarriages in the summer of 2017, we were pretty much done. It was too hard. Your hopes and dreams are built on this idea and when it’s ripped out from under you, it’s kind of hard to find your footing again. We were done.

Were we, though? All of our friends and family would ask when we were having another. Are y’all going to try again? Nah, we’d say. We don’t have it in us. In our hearts, though, we both knew we wanted one more. We were just too scared to try.

That began to change as I started to become healthier. With every milestone I gained a confidence I didn’t have before. I was healthier than I’d ever been. Weighed less than I did when I had Abby. Off all medications. The only thing going against me now was my age. I didn’t know then just how hard it would go against me.

We were lucky, and got pregnant our first month trying. I found out at only 3 weeks and 3 days. I went to the doctor early and had bloodwork done as well as some testing to check my kidneys. My hormones were rising well and things looked really good. I couldn’t accept it though. When I hit 6 weeks and hadn’t thrown up yet, I just knew something was wrong. I convinced myself that it was a bad sign because I’ve had hyperemesis in prior pregnancies. I’ve NEVER not thrown up early.

A week later, my first ultrasound showed that the baby measured a week behind. It was at a private office not affiliated with my OB. We saw a weak heartbeat. The thought was, this was because it had just begun to beat. Realistically, it was because it was stopping. Three days later at my OB we had an ultrasound that showed no heartbeat where there had been one days before. Different facilities. Different protocols. We were told to go home and wait 10 days to see whether the baby grew. We both knew at that point that the baby was gone, so the thought of waiting 10 days was excruciating. I understand erring on the side of caution. But I broke down right there in the ultrasound room. Full on ugly crying, tech trying to calm me down, me feeling worse for her than I did for myself because even I didn’t know how to handle me. All the while, Arick sat in the car in the parking garage. Thanks, Covid.

10 days later, the baby still measured 6 weeks. The sac was continuing to grow, though, and measured over 9 weeks. That’s why I had a bump. That’s why I felt almost 10 weeks pregnant. Because technically, I was. Because the amniotic sac continued to grow along with my body’s inability to realize that the fetus wasn’t growing, I’d need a d&c. Another surgery on an already scarred and damaged uterus.

I had the surgery on Thursday, and it has been the opposite experience from my first d&c. My pain is severe and my bleeding is, honestly, scary. I can’t do anything. I’m struggling with lots of bad feelings. I don’t like who I am right now and I’m not afraid to say it.

As I lay in post op, the hospital called to schedule my appointment with prenatal genetics. I had to tell them I’d just lost the baby, so I didn’t need the appointment anymore. Then I had to wait 5 hours for the shot that is designed to protect any future children I may have from my body attacking them. I have an RH- blood type. If this baby’s blood were a positive type and it happened to cross into my bloodstream, my body could form antibodies that would attack any future children I became pregnant with that also bad positive blood types. Because this is usually given following the delivery of a healthy baby, the blood bank wouldn’t release it until very specific terms were met. They had to essentially beg them to give it to me. It made an already traumatic experience that much worse. But I got it, and that is critically necessary in the event of us trying again.

The takeaway is this. I’m 37. I have roughly 3% of the eggs I was born with left. By the time I turn 38 in October it’s estimated that 50% of those remaining eggs likely have extra or missing chromosomes. That’s probably what happened here. The egg was fertilized well, implanted well and at 6 weeks realized “oops, somethings not quite right here” and stopped growing. The good new is- I got pregnant. Easily. My body maintained the pregnancy (too well, since it didn’t realize that the baby had stopped growing.) My chances of a successful pregnancy are 50% according to both my OB and maternal fetal specialist. It isn’t out of the question. Women today have babies at 45. Healthy babies. The bad news is- I can’t tell you where that leaves us. The same place we’ve been stuck for years. Arick always said “one more try.” So we gave it one more. That try has passed and here we are, both still feeling incomplete. I’ll tell you this much. It’s a real shitty place to be.

I don’t understand why I’ve had to go through all this. Why I can’t do what I was put here to do. I mean, go forth and multiply, right? Why am I not worthy? Should I just accept my blessings and move on? I have the two most amazing kids, and some women don’t get that. Some women get far more and don’t appreciate them.

It’s just hell. The place I’m in right now. I feel like giving up but I can’t. My chances of bringing another baby into this world go down with each passing month. So we don’t have time. We don’t have two years to talk about what we’re going to do. But can I do this again? Can I mentally and physically handle doing what I am right now again if we get another bad egg? And let’s face it- they’re half bad, at best. I don’t know. I can’t tell you.

These shoes I’m wearing, though. The “strong woman” shoes. The “endure the hard things” shoes. The “keep a brave face on and keep on smiling” shoes. I want them to burn. I want to be weak, and vulnerable, and soft. I want to not need the damn shoes. Because I’m tired of being strong. I’m tired of smiling. I’m just plain tired.

My Summer Sadness

I don’t get the winter blues. There’s no dramatic change in me when the weather turns cooler and the leaves begin to fall. No depression at the start of shorter, darker days. My blues come in the summer. The longer, sunnier days are the catalyst towards sadness for me because they bring with them the memories. Memories that I hold at arms length lest they take me back to where I was. The place I spent literal years. The dark place.

I found out I was pregnant for the second time 6 short days before Abby turned 1. She was born 37 weeks into the pregnancy from hell. I threw up all day until 24 weeks when the nausea was quickly replaced with high blood pressure. High blood pressure that had me on bed rest by 28 weeks. By 37 weeks her delivery became necessary and I spent over 3 days being induced before needing an emergency cesarean. 3 days, y’all. So to find out another baby was coming was a shock to my system. I wasn’t happy, I was terrified. My fear only increased as I developed hyperemesis and needed iv’s to stay hydrated. As the baby grew though I came to love him in a way that only a mother can, I suppose. I began to get excited about the baby, and I felt hopeful.

Nearing 20 weeks, I couldn’t wait to have it confirmed that this baby was, in fact, the son I knew I was having. I’ll never forget a family member asking me 3 days before my big ultrasound if I’d felt movement yet. Now that I thought about it, I hadn’t. Maybe my placenta is in front. Maybe I’m mistaking it for gas. Maybe I’m just doing too much and haven’t noticed it. I found every reason I could. My first sign, I ignored.

I can remember every detail about the day- July 27, 2006. I remember what I was wearing. What Abby was wearing. Her little pigtails, 15 months old. All fat legs and rolls. I immediately knew something was wrong. She only moved the ultrasound on my stomach for about 2 minutes before she covered me up and said she’d be right back. I looked at Abby’s dad and told him “somethings wrong.” I was crying when she came back with my doctor. “I’m sorry Stephanie, but your baby doesn’t have a heartbeat.” It happens sometimes. You didn’t do anything wrong. We couldn’t have known. You can try again as soon as you’re ready. I wasn’t READY for this one…

They gave me the option of going home since it was Friday and coming back Monday for induction or going immediately to l&d. You see, I was 21 weeks. There would be no easy way out of this. I’d have to give birth to this child. I couldn’t imagine spending 48 hours knowing my body was my child’s coffin. I wanted it done, and over. Today, I regret so many of the choices that I made that day. They started my induction at 4 pm. My labor grew intense and I was finally dilated enough by 10 pm to get the epidural. They suggested that I get it, if only to soften the blow of what was to come. As soon as I got it and got comfortable again I felt it. These things I never tell anyone. These things I may have told Arick once. Maybe. I could feel my baby sliding out. No pressure, no need to push. The baby was much too small for that. At 10:50 pm on 7-27-06 my second child was born, still completely encased in the sac. Into a silent room. The nurses offered to break the bag so that I could see and hold my child but I denied it. In fact, I’d made them turn the lights down and let me deliver in near darkness so I didn’t have to see anything. They told me- we don’t want you to regret these decisions. They urged me to hold the baby. But I refused. A much too kind grief nurse came to see me to let me know that she’d taken pictures of him for me. You see, I was right all along. It was a boy. She told me she’d keep the pictures forever if she needed to, but when I was ready they’d be there.

Two weeks later I picked them up. It took me days, perhaps even weeks, to look at them. To this day, nearly 14 years later, I’ve only looked at them four times. Every year on his birthday I intend to show them to Arick. I talk myself up to it. Tell myself I’m going to. But at the end of the day it’s just too intimate. Too raw. Eight years together and I know the day is coming that I need to open that last remaining part of myself up to him. I know I will, one day. Maybe this year…

The first miscarriage. January of 2013, immediately before Avery. Alone. I chose to do it that way. Another regret.

Avery was 8 months when I found out I was pregnant again. I can’t even describe that terror. He’d only been out of the NICU 3.5 months and had just come off of oxygen. It was easy though. My first easy pregnancy. I felt great! Until 16 weeks, when I began having contractions. I drove myself to the ER where I was told, once again, that my child had no heartbeat. Drove back home to sleep in Arick’s arms before going back the next day to deliver the second child I wouldn’t bring home. After the baby came, I had retained placenta and needed emergency surgery. That night Avery was life flighted from my sisters house. The hospital wouldn’t let me leave. I was grieving one child and terrified for another. A situation I never want to repeat.

Between then and now I’ve had several early miscarriages. The kinds where the doctor will look at you and say “most women wouldn’t even know they’re pregnant yet and think they just started their period late”, “—% of pregnancies end in miscarriage, you’re just finding out early”, and so many other niceties that really just sound like bullshit you’d rather not hear because it doesn’t help. Tell me the medical code for “bad luck.” There isn’t one. I’ve had lots of blood work. Lots of testing. Nothing is wrong. Yet nothing is right.

I’m getting older and I feel that clock ticking. We don’t want to lose more babies. It’s as hard on Arick, if not even harder, than it is on me. It takes something from you every time. Something you’ll never get back.

I don’t want to hate the summer, but it’s the beginning of my season of sadness. The dark days from July until September where I am forced to relive the births of two babies I never got to hold. Some years I do well, some years I don’t. I get through it by recognizing the blessings that I do have. I have two children. I’m thankful for them. Both of them got me through the hardest losses because they were each so little when they happened. 15 months and 11 months. They were dependent on me and at times I think that their dependency on me saved my life. So I see the light, I really do.

I’m writing this now because I recognize the feelings setting in, and I don’t like them. They’re disheartening, and upsetting and so damn uncomfortable. They threaten to destroy everything that is so good in my life. I won’t let them. So I have to get it out. Whether my words fall on deaf ears, or no ears, or millions of ears makes no difference. They’re out here now, instead of inside me. I hope I’ll feel better for it.

Coloring Outside the Lines

I had a little breakdown today. I began to feel those thoughts that I try to so hard to avoid creeping in. The fear. The worry. Every now and then I’ll be struck by something and my mind will fixate on it. At times it’s only for a few minutes. Sometimes, it’ll drag on for hours or days. The proverbial monkey on my back that I just can’t shake. Well, that monkey is back today, and he’s heavier than I’ve felt in a while. What led to the breakdown? Oh, just “homeschooling” my kindergartener who has complex medical needs and disabilities. Specifically, the breakdown had to do with coloring.

I know my sons weaknesses just as well as I know his strengths. You don’t parent a child who chokes on everything and doesn’t walk until they’re 3 without being fully versed in everything they can and cannot do. Even today at 6 I’ll have to catch him before he gags on food, grab him before he falls face first and stop him from trying to jump across furniture.

In the same breath though, there are many things now that I’ve learned to allow him to do. Whether he is successful or he fails, I let him do the things that he is inspired to do. Many times that will mean accommodating tasks to his ability level. That’s fine, and a necessary part of learning for him. There’s things he can do at a level higher than some of his peers- like reading. He knew every letter and it’s sound before kindergarten. There’s things he can’t do as well- like writing and speaking. Things that, under typical circumstances, I wouldn’t notice as much because I’m his mom and I understand him perfectly. And how much does a 6 year old really write at home?

The pandemic and resulting “home schooling” (in quotations because let’s face it, our teachers are amazing and still doing all of the most difficult work while having to emotionally handle the fact that they lost the last 2 1/2 months with their students) has opened my eyes to many things as Avery’s mother. His weaknesses have become glaring reminders of the fact that he’s different. Atypical. And that he’s going to struggle.

Today, he was coloring. He’s not the best colorer and I have to constantly remind him that the entire point is to stay in the lines. Make it beautiful! Try hard to stay in the lines and make it neat. But he just can’t. He can’t. My son cannot and probably will never color in the lines.

His brain malformation left the left side of his body extremely weak and the right side unable to compensate for it. Try to write your name with one hand behind your back. It isn’t as easy as you think. Unconsciously, you use that other hand to steady your paper and help you write. Academically, writing is probably his only setback. But it’s going to be a big one.

My mind went to all of the holiday cards he’d ever bring home for me. All of the art projects that they take so much pride in. I still have many that I made growing up and I can remember just how I felt when I presented them to my mom so pleased with what I’d created. His will never be that vision of perfection that I strived so hard for. Or will they?

It took me about 30 minutes before I realized that I’m sitting here forgetting one of my own number one special needs parenting rules. Don’t measure your child by another, or by society’s standards of what is normal.

He may never color inside the lines, and I have to be okay with that. I have to embrace that difference and instill in him the knowledge that staying inside the lines is stinkin’ overrated anyway. Who wants to be just like everyone else? If I’m sitting here sad thinking he’s never bringing me home some masterpiece then I’m going to completely overlook the masterpieces that he’s creating every single day. He might not color in the lines but he dang sure knows the answers. He doesn’t write his name neatly but he can spell both his first and last name even if it takes him 3 minutes to write it.

He’s here, and we didn’t expect him to be. He’s painting a masterpiece on a daily basis that really is a testament to the power of love and prayer. With every breath he takes and thing he accomplishes he’s creating something amazing. He’s doing it the Avery way, with every single step happening outside of the lines. I mean, he’s MY son, so would I really expect anything less?

Kindergarten, Here He Comes!

Arick and I used to not allow ourselves to be hopeful. From the moment of Avery’s very early and very unexpected birth, “He will do what He will do” was the mantra we lived by. It made it easier, somehow, to not believe that Avery would be able to grow up to do things. That way we experienced less disappointment when he didn’t. As he’s grown, it has become increasingly clear that not only will he do what he will do, but he will do it in his own time and in a way completely unique to him.

Avery was born at 1 pound 3 ounces and struggled to stay with us for his entire first month. From a patent ductus arteriosus defect in his heart that led to surgery at around 2 weeks old to an inability to process feedings to not gaining weight- it was the hardest month of our lives. He very slowly started to improve and at 32 weeks gestation- he was born at 25- even though he was only a little over 2 pounds, he was given his first bottle. I remember them telling us that this could be a turning point. Either he took the bottle and did well or he wouldn’t and feeding would continue to be a challenge. He needed a little support but our tiny son took that bottle like he’d been doing it all along! And they were right. It was a turning point. He started to gain weight consistently for the first time. In another 8 weeks after a total of 111 days in the NICU, he came home. For every scare he gave us he did something amazing that renewed our hope and allowed us a moment of reprieve.

When he turned a year old, he couldn’t sit up. He didn’t babble or play with toys. He was about 11 pounds and essentially a newborn. He was also starting to show signs of cerebral palsy, which we knew from the NICU to watch out for. He kept his left hand clenched and his entire left side was tight. I got him evaluated and he started physical therapy. A month later he was formally diagnosed with cerebral palsy. Four months after that, with polymicrogyria. Those were some dark months, too. In our minds and hearts, it was back to square one. We’d watched our son fight for his very survival and now we had to accept that he’d be fighting for everything. Forever. But still we told each other, he’d do what he’d do. And we’d love him through it.

With lots of PT Avery took his very first, very unsteady steps just before his 3rd birthday. He did it! He walked!! The first thing that I thought he’d never do, he did. In Avery time. But he still didn’t talk. He had a few words he said but he couldn’t speak in phrases. We started twice a week speech and within six months he could say “more milk please” or “go play now.” He was talking. At his three and a half year visit with his neurologist he looked at me completely awe-struck. I’ll never forget the words he said. “Knowing what his brain looks like, I can’t believe he is talking like this.” Victory number two!

On his third birthday Avery started attending PPCD. The preschool program for children with disabilities was a scary thing. An all day program through the local school district, I was overwhelmed thinking about him being away from me for 8 hours a day. He cried every day I dropped him off until I finally decided I needed to give it one more week and if it didn’t improve, I’d withdraw him. It was no longer beneficial for either of us. That week he stopped. He stopped crying and I realized he knew the colors red, blue and yellow. We were driving one day and he saw a stop sign. “S-T-O-P” he said. So I kept on bringing him because I saw the benefit. We were warned at birth that Avery would most likely have severe developmental and intellectual deficits. And here he was at not even 4 knowing his colors and letters. Like…like…like a “normal” 4 year old!!

Kids age out of PPCD around kindergarten age and either go into general education or life skills classes. My goal for Avery from day one was to give him as normal a life as any other kid, and I’d have accepted either for him. He was impressing his teachers and school therapists (and everyone who met him). At the middle of this past school year I pulled his teacher aside and asked her if she though he would be ready for kindergarten. Her answer? A resounding “YES!” He was finally potty trained, able to move around the school freely- at his own pace- and had become increasingly self sufficient. I went to my car and cried for a good ten minutes. I cried tears of joy and tears of relief. And if I’m being honest, a few tears of fear. By early May it was confirmed. Academically Avery was doing better than most kids already in kindergarten. He was obviously ready. Avery will be going to kindergarten in August!

So many tears I cried over these last five years that wouldn’t have changed anything. Would I love him if he didn’t walk or talk? Absolutely. Nothing he’s ever done or not done could change that. But seeing the things he HAS done- those are the things that have changed not only him, but Arick and I. That have made us gracious. That have made us look at other parents and not for one second judge them or their situation. We’re all just doing the best we can. Sometimes we fall short but sometimes we excel in ways we never thought possible. Avery is this idea personified.

I want his kindergarten teacher to know what this journey has been like. Chances are that when I meet her, I’ll pull her aside and give her the abbreviated, cliff notes version of Avery. I’ll tell her to watch out for him because he isn’t the best walker. To listen closely because sometimes he gets excited and his sentences become one long, convoluted word. I’ll tell her to make sure that he’s included in things and allowed to do things in a way that he can. Because things are hard for him. But if you give him a little bit of time, a little bit of support and a whole lot of love, he’ll do it. He’ll do it the Avery way.

Seizing the Seizure

I haven’t been sleeping well. I’ve always been a light sleeper, waking up each time my sister would move around in her bed next to mine or when I’d hear someones heavy footsteps on the wooden floor of the stilted house I grew up in. Four years ago, it got worse. When you bring home a baby who can’t cry, your instincts are piqued to do what is necessary. The smallest rustling of his blankets would have me sitting straight up in bed, squinty and blind, shaking Arick and saying “look at Avery!” Sometimes, he’d pull his oxygen tubing down and try to suck on it. The almost silent swishing sound the air would make even woke me up. So, I’ve been sleeping badly for a while now. The past few days though…it’s become not sleeping at all.

We’ve had plenty of reason for sleepless nights with Avery. In the beginning, it was “will he make it through this night?” When would he gain weight? Will he have a brain bleed? Then surgery. When he’d stop digesting and go back on TPN. Infections. Fevers. Aspiration. Choking. Pneumonia. Pain. RSV. Then CP. PMG. Will he ever sit up? Crawl? Talk? Walk? Will he, like the majority of the population with PMG, have seizures?

Wednesday morning that question was answered for us, and not in the way we wanted it to be. “Avery had a seizure.” God, no. Please, no. Don’t let it be true. Let this be a dream. Wake up, Steph. But it wasn’t a dream, and it has cast a dark shadow on every moment since then.

An hour ago I heard a loud sound from his room so I yelled his name. He didn’t answer so I panicked and ran that way. There he sat, in the middle of the room, grinning at me. Gosh, Avery! You have to answer me. “Okay my Mommy!” Ten minutes ago, another loud thump. In my mind I see him on the floor, seizing. This time I don’t call him, I just run. Relief floods over me when I see him sitting there, softball in hand. I’ve had a hundred mini heart attacks a day since Wednesday. I told myself it’d get better as the days pass but it’s actually been the opposite. The more time passes without another seizure is the less time there is until the next one. That’s a pretty messed up way to see it, huh?

I’ve been waking up every thirty minutes or so at night, breathing fast and overcome with worry. I look over to see if he’s okay. Most of the time I can’t see and I wake Arick up to look at him with me. He assures me that he’s fine but if my anxiety is too bad I have to get up. I’ll walk over and look down at him to see the gentle rise and fall of his rhythmic breaths. That’s usually not enough, though. I reach down and put my palm between his narrow shoulder blades and I feel it. I feel the breaths. Only then do my own breaths calm.

I’m so scared. What happens when he has one in front of me? Is it a blessing that his first was at school so I didn’t witness it or do I wish I’d have been there to hold him? (Yes.) When we are alone will I panic or handle it? What happens if he vomits? If he has one in his sleep and I’m not there? How do we process all of this on top of what we already struggle with?

Then it hits me: it’s never been easy! We brought home a baby that used to weigh a pound. Gave him 9 medications around the clock and cared for his oxygen needs. Watched his monitor. Handed him to surgeons and healed his scars. Spent thousands of hours in therapy learning to crawl, then walk. Cried with each diagnosis. We’ve done hard. We know it well. So, he had his first seizure. Now we have the answer to that last question, the hardest question. It isn’t the end of the world. Just another thang. Yeah, it’s scary as hell. But who’s more qualified to deal with it than me and Arick? We’re freaking special needs parent rock stars at this point. So bring it on. We’ve got this, too.

Ultimately, us accepting it and managing to keep going is going to allow him to do the same. The last thing that I want is for him to live in fear of the next one and let it dictate his life. There’s too much life to be lived! If he sees us scared, he will be. We have to be strong so that he can be strong. Although I don’t see that being a problem. He’s the strongest little boy in the tiniest little body I’ve ever seen. And he always has been…

Avery enjoying a popsicle in this hospital the afternoon of his seizure.

The Trouble with Avery

This one isn’t going to be easy to write. I know, because I’ve set down and tried multiple times over the last few weeks. For years now I’ve taken pride in my ability to make the best out of the worst. No crying, no complaining and minimal begging for help. These days, though, I find myself doing all three, often simultaneously. Why? Because sometimes, our lives are beyond difficult. Life with Avery is anything but easy, and his behavior lately has only exacerbated an already growing problem. I don’t want sympathy, or even help. In fact, I don’t want anything except to get these feelings out. I’ve never had a problem expressing myself through words but writing this, which amounts to little more than complaining about life with my son…isn’t easy. So, here goes.

Avery cries for about an hour when he wakes up. Every day. When he wakes up he can’t walk and has to stretch his legs to get them to work. His muscles are tight and if he stands up he falls right over. He generally stops crying right before we have to leave for school and is fine once he goes into the classroom. He’s there for five hours before I pick him up for therapy three days a week. Cue another bout of crying because his nap is interrupted. Sometimes he will calm down when he gets to therapy because it’s the thing he enjoys most. Other times he doesn’t. When this happens it usually results in him crying on the floor, kicking for 10-20 minutes. Meanwhile his therapists are down there with him, cajoling and attempting to placate him. So I just stand there. Embarrassed. Humiliated. Ashamed. Feeling like a failure with an uncontrollable child. You’re probably thinking: he needs discipline. Yes, he certainly does. But what?

Am I supposed to hit a disabled child? He lives with chronic pain. Do I inflict more? It’s a constant struggle of “what do I do” vs “what is appropriate for him?” We’ve tried time out. Taking toys away. Taking TV away. No YouTube. No sweets. And, yes, spanking. With every attempt he’s remained defiant and becomes even more impossible to control. Discipline for Avery has been a complete defeat. Days like today have become normal- me sitting in the therapy lobby with red, puffy eyes from crying because he once again showed his rear. They tell me: we’ve seen worse, don’t be embarrassed. But how? How do I not see his insolence as a personal failure?

He struggles so much. I know it has to be frustrating. His peers can dress themselves, feed themselves, walk up stairs. He can’t. He can’t use his left arm at all. Imagine going through your day using only one hand. Having another one but it just won’t freaking work. That’s his life. I can’t imagine how it feels to be a child on the verge of realizing that they are different from everyone else. In my heart, this is what I fear is happening. I’m so scared that he’s acting out because of the many things he’s finding out are so much harder for him. I’m even more frightened because I can’t fix it. There is literally nothing that we can do except love and help him.

In many ways, Avery is still a baby. He still has to drink from a cup, be changed, dressed, cleaned, fed. We’ve had an infant for over four years. Sure, he does have some independence because he plays alone and spends time with Abby. But I’m tired. Running here, running there…so many therapies and appointments. Drop him off, pick him up. It’s all necessary to ensure that he always has the best chance of success. Of this, I can’t complain. I’m only thankful that it is available to us and that despite his behavior these people continue to love and nurture him.

The fact is, there’s more that scares me. I’ve done my fair share of research and I’ve read nearly everything I can on prematurity. So I knew…I knew 4 years ago…about the link between prematurity and ADHD. Extreme prematurity- between weeks 23 and 28- puts babies at the greatest risk of developing ADHD. Some research has indicated that the risk for these babies is greater than 60%. I see it beginning. I know the warning signs. And I’m scared. Not because that diagnosis is some terrible, formidable thing. But because it’s a lot to add to an already extensive list.

I know what you may be thinking. He’s so cute! How can he be bad? There’s no way! For a while, it was funny. I’d laugh with people when they said it. Now, I struggle with him so much that hearing it angers me because it just shames US. Makes Arick and I feel like not only are we inaccurately vilifying Avery but that we shouldn’t even say anything to begin with. When your every day is a struggle, that’s the last shit you want to hear. Frankly, he listens and understand now. Your “he’s not bad” is entirely less effective than an “Avery, you should try harder to be nice/not cry/not hit” would be. Because we aren’t lying. He’s bad. He throws tantrums and hits and breaks things- like TVs. These are facts. But he IS also cute. And sweet. And so damn smart. It’s a balancing act. It’s what kind of day we are having.

With that said, I love this little boy more than life itself. All three of us spend every day doing for him so that he is all that he can be. I’ll continue doing just that, even on the hard days. Even on days like today when my nose is still running from crying and I feel like a failure. Because later on, at home, Avery is going to crawl up in my lap and hug me. He’ll snuggle his head into my chest and say “I sorry, Mommy.” And I’ll know that he is. I’ll accept it and tell him that making up for the wrongs you do is necessary and the most important step towards gaining forgiveness. If I didn’t teach him that, THEN I’d be a failure. And I’m not failing. I’m learning. Just like he is.

This goes out to all the Mommas who are struggling to hold it together right now. The ones who haven’t had time to shower in days, who eat their kids leftovers instead of making a meal and don’t sleep at night. I see you. I am you. I know how hard you work. It isn’t going unnoticed. You’re an amazing mom and you should hear that more often!

Abby

She’ll be 13 this year. I look at her now and find myself in awe that she’s so close to being grown. She opens her mouth and humor and quick wit pour out and I realize that my days of having a little girl are quickly drawing to a close. We’re on a runaway train towards the teen years and the distinct possibility that one day soon she will wake up and decide that she hates my very guts. So while she still loves me and I don’t have too much that I can hold against her, there’s a few things I’d like her to know.

She’ll always be my baby. In essence, we grew up together. I was 22 when she was born and I learned more during those first six months than I have during any other period of my life. She, like her brother, had terrible reflux. Unlike him, though…she also cried nonstop. For six entire months. I’d turn the TV to static, turn off all the lights and cradle her. Rock her. Put her across my legs. And cry with her. Nothing soothed baby Abby. Those six months were harder than Avery’s NICU stay because I was so alone and isolated. There was no support system or help. We pumped her full of medications but nothing worked until that one magical day at six months she started sitting up and stopped crying. She became this fat little cherub. She laughed, giggled and played. I finally felt like her mom and not like the person who couldn’t fix her. There was just nothing better than her fat legs and all those chins! I learned my first lesson of motherhood: it’s okay to not be okay. It’s perfectly acceptable to cry and completely normal to feel not good enough. You know why? Because the ones who really aren’t good enough aren’t asking themselves if they are.

We were alone for most of her early childhood. The first and only experience she has in having a father is when 21 year old Arick entered her life when she was almost 8. And she was NOT happy. She’d had me all to herself for so long. Involving her in our growing relationship- when we were both ready- wasn’t enough. She made it implicitly clear that she did not approve. Boy, if she could go back now she’d probably take him, get rid of me and live happily ever after. (He’s much more easygoing and forgiving than this Momma is!) I hope she always remembers all the pre-Arick trips to the movies, the zoo and out shopping that we so often enjoyed together. The movie nights and slumber parties, nail painting and coloring. Even more than that I hope she remembers that when she met her Daddy it didn’t stop. We just gained a 6′ 4″ partner in crime. If anything, he accentuated our good times. Nowadays they both make me laugh until I can’t breathe and beg them to take it down about a couple hundred notches!

She’d asked for a sibling for a few years before she actually got one. I still have moments of guilt about the hand she was dealt. She so badly wanted a brother and when she got one she didn’t get to see him for four months. When he came home he was attached to machines she had no way of understanding. He couldn’t play with her like little brothers usually do. It didn’t stop her love, though. In third grade for show and tell she talked about prematurity. She brought one of Avery’s tiny diapers to show the class and endured little boys making fun of her for it to show them how special her brother was to her. Looking through her graded papers I found an essay she wrote about him. I still have it, tear stains and all. Avery’s problems never stopped her from being proud of him and loving him as much as a big sister could love her little brother. This alone makes me feel proudest as a mother.

Today at nearly 13, her level of maturity and self actualization amaze me. Little glimpses of myself come out, 13 year old Steph who spent all of her time with her tiny baby nephew, and I’ll hear her say “be careful” or see her just change a diaper or clean his face. Her life with him isn’t easy. She helps a lot with him. She runs baths, draws out medications, keeps him company. He truly is a full time job and he makes sure she puts in her hours, too! I watch her tying his shoes or putting his gloves on and realize that one day she’s going to be a pretty amazing mom if she chooses to be. I hope that, looking back, instead of being resentful of the difficult years she endured having such a high maintenance little brother she can be grateful for everything she learned.

I spend a large percentage of my time on Avery. Therapy, doctors, stretches, sandwiches and trips to the potty to please Jesus try and pee! I know she doesn’t feel neglected. We’ve been totally transparent with her from the beginning. We told her: if you ever feel left out or forgotten, hit us over the head. She’s never needed to. Whether that is because she’s too much like her Momma to make a fuss or because she’s too busy learning to be selfless, I can’t say. I just know that I’m watching her blossom into an amazing young woman who will without a doubt do great things.

She’s silly. Squishy. She never stops talking. Ever! She isn’t the best student but who cares, she’s so much more than that 70 in math! Loves to draw and sing. Has wild hair. Loves scary movies and anime. She’s mature and responsible. Always tells the truth because in our house we value truth above hurt feelings. Will sleep all day and eat all your snacks. Has a serious weakness for takis.

She’s half of me, of everything I am. She’s everything we’ve taught her and every value we’ve given her. She’s amazing.

Please be easy on your Momma these next few years, Abby. I’m getting old and my hair is turning grey. Always remember who you are and what you stand for. If you do that, you’ll do well…

To My Son’s Teacher

Last October, my boisterous but tiny three year old started school. For weeks we warned him that big changes were coming with his birthday but the gravity of the day was lost on him. That Tuesday morning, the very day he turned 3, he left my side for the very first time as he entered the preschool program for children with disabilities (PPCD). In those seven months between October and May, ironically it was I who became the most educated. I learned how to cope and how to trust. I learned that my son was more capable than I ever dreamed him to be. And I learned that there are a few things I’d like his teacher to know, going into year two.

1-

He’s three. In his heart he is just a three year old boy. He sees himself as just the same as any other boy his age and, at least of yet, he hasn’t perceived himself as different. Disabled isn’t anything to him. There is no meaning in that word. He’s just a boy who falls a lot and wears special braces on his legs to make them stronger. In the same way, I expect you to not only see the braces and the clumsiness. He’s so much more than that. He’s strong, determined and brilliant. I’ve always feared his dismissal by small minded people who couldn’t see past his imperfect exterior. Don’t be that person. And don’t baby him. See him as the boy he is.

2-

I want you to be honest with the other kids about his disability. Don’t be afraid to say the words “cerebral palsy” or “premature” and to explain them in ways they can understand. Much of their initial life experiences with the disabled community could stem from their first meeting my son and playing alongside him. They’re kids- nearly blank pages who will absorb the knowledge that we give them. Tell them not to fear him or pity him. Ensure that they know that he is just like they are. He may need a bit more help than them but that isn’t a bad thing. By doing this, you can teach them an understanding and empathy that they may not get otherwise. The world can only benefit from this. Lead by example and the kids will, too.

3-

Don’t say “can’t.” Because he can! I haven’t yet failed to find a way to adapt or modify an activity to Avery’s needs. If you’re in PE or doing something physical and it requires running, let him use a scooter board and cheer him on as he goes. His little hands don’t work as well as they should, so perhaps give him a larger crayon or marker. Guide his hands the first few times. Instead of working with smaller objects, give him something big that he can manipulate easier. Know that the mess may be bigger and it will undoubtedly take more time, but it will be time well spent. Time spent teaching a little boy that he can do anything he wants to.

4-

For the love of all things holy, don’t make your room an obstacle course! He has no center of balance and he falls often. The more items are crammed into his space the more likely he is to fall on them. And bust open his eye, or his lip, or his head. Make it as toddler friendly as possible to ensure that he has enough space to move around without injuring himself. This one might seem petty, but you’ll thank me later. So will the nurse!

5-

Keep me in the loop. Send me a picture of him with ketchup or chili all over his face at lunch. Show me how proud he is standing in front of the class as they say the pledge of allegiance. That single snapshot could be what gets me through a day spent worrying about him. Text me if you think he’s not feeling well so that I can watch out for it at home. Invite me to the classroom to help with crafts or read to the kids. Make me feel welcome. I want to feel good about sending my baby to you every day, and you can make that happen. I want to be there as much as I can. If you do, I promise that you can come to me first if you need cupcakes for Christmas, candy for Valentines or a donation for class T-shirt’s. I’ll even make crafts for every kid in the class on holidays. Better yet, invite me to the classroom and we’ll do them together!

6-

This last point I want you to hold nearest your heart. Love my baby. If he falls, pick him up. Kiss his ouchie quickly but don’t dwell on it. Tell him that it will be okay. Encourage him to never stop trying just because he falls. We don’t always succeed the first time and he will learn that. I promise not to be jealous if he decides that when he’s mad at me, you’re his favorite person. That tells me that he loves and trusts you. He needs you in his corner.

One day, Avery will see that he is different. My mother’s heart knows that this is coming. With your help, we can soften the blow. Together we can better equip him to deal with a world that oftentimes will be determined to tear him down. Help me show him how special and loved that he is. How capable and strong. Help me teach his peers tolerance and acceptance.

Away from his Mommy now, you are his champion. Trust me, I know that those are pretty big shoes to fill. But you’re up to the job. You’re a special education teacher, after all. And that’s pretty much synonymous with super hero.

Harvey

Sitting here now, I wish I’d have written this days ago. I couldn’t, though. The feelings were too overwhelming and the fear took my words away. Now, however muted, I need to put them out there- if for nothing more than myself.

I’m only acutely aware that today is Monday because it is Labor Day. I can’t tell you what day Harvey first hit Rockport, or how long it hovered over Houston before it came in for its second landfall right here at home. For over a week I’ve lived having no concept of what day it’s been. Maybe today is finally the day that the calendar begins to make sense again. I can only hope.

For days we only slept in spurts between harrowing news broadcasts. I still taste the panic I felt the night I listened to an elderly Port Arthur woman call in to the news hyperventilating, water a foot up her recliner and begging to be rescued. I looked over at Arick and saw that he, too, was struggling with feelings of complete helplessness and fear. If we’d had a boat I think we’d have been on our way to find that woman. All I can think about now is that I hope she was rescued. I pray every night that she isn’t one of the growing death toll left in Harvey’s wake.

I’ve struggled so much with social media the past few days. I’ve so many friends who live in other states and seeing posts not related to Harvey left me with a strange feeling. It was almost as if the lives of every person in Southeast Texas was put on pause. Houston was on pause. But everywhere else, life carried on. 

I’ve watched as people I know and love lost everything they have. Family, like my sister, friends that I’ve known as far back as my memory goes, even NICU nurses who took care of Avery. I’ve felt tremendous guilt that we’ve only endured days with no water and hours with no power. I’ve seen houses stripped empty, down to concrete and two by fours. Belongings floating in murky floodwaters. And I’ve heard that old adage so many times…

“They were only things, and things can be replaced.” The truth is, most of it can. Sofas, tables, beds and clothes come and go. Some things, though- some things you only get one of. My children’s baby books. My childhood pictures. The tiny footprints of my first son who died. The pictures of him. Avery’s NICU mementos. The only pictures I have of my Dad. Things that I’ve picked up over the course of nearly 35 years of life. All the things that make me, me. Snippets of the lives of every member of a family. You can’t get that back. I beg you to remember this before you unintentionally trivialize a grieving persons “things.” 

And, I’ve watched people come together in such a unique way this past week. Private citizens have come together to save lives and feed the hungry. A non government organization was more prompt and prolific in the early hours and days at conducting rescues than was the government. I can’t say that this surprises me. But it definitely gives me hope. So much hope.

Today, we are all praying for normalcy. For the water to return and businesses to open again. Praying for the day that we don’t need help. But while we do, you can bet that you’ll hear a whole lot more about these neighbors helping neighbors. Whether it’s demolishing and remodeling a house, going on supply runs, sharing meals or handing out supplies. 

We aren’t going to let a little thing like a Hurricane get us down. We will rebuild, Texas strong!