"Um, it'll be just a minute."
Arizona's words hung heavy in the room between us. Jackson reached over and his stronger fingers grip onto my smaller ones, giving them a small, firm squeeze as he muttered an acknowledgment to her words. I want to speak but I couldn't find it inside of me. My heart was in my throat and I could feel it beating there, nearly choking me with each panicked squeeze. It was consuming me.
My other hand rested on my stomach. There was no movement, no little kick that most pregnant women felt in order to assure them that everything was alright. I was twenty-two weeks pregnant. By now, I should have been able to feel some kind of movement inside of my belly. It seemed like every other pregnant woman in the world had by now. But our little boy was just sitting like a Buddha inside of my belly, content in his current position. I was worried that he was never going to move from it. That was why we were here. To find out the test results, to know if my nightmare was about to be confirmed. I had seen the scans. They were bad. I didn't have to be a world-renowned fetal surgeon to know.
The door to the room opened again as Dr. Herman opened the door and stepped in. My heart skipped a beat, stomach suddenly replacing it as I'm overwhelmed with a wave of nausea that had nothing to do with my current condition.
"This is a big guns conversation, isn't it?" Jackson spoke.
"Yeah." Arizona nodded her head. She and Dr. Herman sat down across from us and my husband's hand tightened around mine. I hoped it gave him some sense of comfort, of being grounded. I couldn't find any.
"April, Jackson, we have your test results." Dr. Herman's voice was calm as she spoke.
I nodded for her to go on, unable to find my voice.
"Your son has osteogenesis imperfecta, type 3. The most severe type that lives beyond birth. At birth, we are talking about shortened and bowed limbs, small chests, and a soft calvarium. There may be multiple long-bone fractures at birth, including many rib fractures. Respiratory and swallowing problems are common in newborns. There are frequent fractures of the long bones, the tension of muscle on soft bone, and the disruption of the growth plates lead to bowing and progressive malformation. Children have a markedly short stature Spine curvatures, compression fractures of the vertebrae, scoliosis, and chest deformities occur frequently. The head is often large relative to body size."
Every detail of our son's condition upon birth was burned into my mind, replaying the words over and over again and absorbing the words, what they would mean. Our child would have a life. It wouldn't be the one that either one of us had pictured for him, running around and playing sports, a little soccer player…. that wouldn't be our kid. But we would still have our kid.
"What's… what's the prognosis?" My voice was barely more than a whisper.
"Life expectancy varies. Some people with Type III OI have severe, sometimes fatal, respiratory problems in infancy or childhood. Some children and adults with severe Type III OI may require supplemental oxygen. Some individuals succumb to respiratory problems in adulthood due to progressive rib cage and spine deformities that occur as they age. Other people with Type III OI will have a near-average life span. There's a good chance he'll never walk unassisted." Dr. Herman explained.
Tears slipped from my eyes and I released Jackson's hand as I wiped them away as they began to fall. Each breath felt difficult as if I was the one who was somehow burdened with breathing problems. But I wasn't. That would be our son, if he made it past infancy.
If.
"What are our next steps?" Jackson asked.
"People with Type III are usually born with fractures. X-rays may reveal healed fractures that occurred before birth. Surgical correction of long bone bowing and scoliosis is common. Deafness is also common in type III." Her words stick in my mind, haunting me.
"Fractures that occurred before birth?" I questioned, hand covering my stomach as I went as still as I could possibly go. "My babies bones are breaking inside of me? The place he's supposed to be safe, his bones are breaking." No one said a word. We were all doctors. We all knew that that meant. "No, I just – um, c-can he feel it? His bones breaking? I mean, he can feel it, right? So he's in… he's in pain."
"Again, I am so sorry," Dr. Herman spoke. "There is no cure for OI, but there are ways to manage the symptoms. Despite the obstacles, many people who have OI lead productive and fulfilling lives well into their adult years. The goal of all treatment is to minimize fractures, enhance independent function, and promote general health."
"But he's in pain now." I couldn't shake it. I couldn't get past it.
"April…" Jackson breathed out my name like there was something in the world that he could say to make this all easier, but there wasn't. This was our new reality and it hurt more than anything else. I had never felt a raw pain like this one.
"Wh–what can we do? About the pain that he's in now?" I questioned.
"A fetus is extremely sensitive to painful stimuli. It's why we give pain medication directly to the fetus when we perform fetal surgery."
Before she could get any further, I cut her off. "Baby. That's my baby you're talking about."
"Of course," she murmured. "There's not much that we can do about it. I'm so sorry. Given the current law, however," she sighed. "If you don't wish to continue with the pregnancy, you need to decide within the next two weeks."
"That's not what I want," I shook my head, wiping away a tear. "I want my baby. I just don't want him to be in pain."
"There has to be another option," Jackson's voice shook as he spoke. Glancing at him, he was holding onto the arms of the chair so tightly his knuckles had turned white. "There has to be something else that we can do."
"Well…" Arizona spoke up for the first time. "There is something. But I don't know if you'll like it."
Upon Arizona's suggestion, on the day that marks the pregnancy at thirty weeks, I have a scheduled c-section. It was safer for our son than a natural birth would have been, the pressure that going through the birth canal would have put on his body. Even if it wasn't necessary to have her given her worldly expertise, Dr. Herman performed the procedure herself. She promised us she would be there every step of the way.
Not having to feel a thing during the procedure, it felt odd to be inside of the operating room and to be the one who was cut open. Jackson sat by my head the entire time, holding my hand and stroking my hair over the flimsy paper that covered it to keep things sanitary. I can't see what was going on and truthfully, I didn't want to. Every waking moment carrying this child had been terrifying – trying to be as careful as possible, not wanting to accidentally bump my belly into things, being as gentle as possible with my body and increasing my iron intake. But nothing compared to the utter terror that I now felt.
Monitoring the progress of what was going on was difficult from my position but I knew that c-sections were not a long surgery. I waited and waited to hear the sound of my son taking his first breath and crying out. It felt like it was taking too long. It was taking too long.
"Is everything okay?" I asked, looking up at Jackson. He seemed calm.
"We're just about to take him out," Dr. Herman said. "We're being extra careful. Like we discussed before, you won't be able to pick him up that way you would other babies. You have to be more careful."
Forcing myself to fall quiet, I nod my head a few times, trying to reassure myself. Jackson's thumb rubbed against my cheek and I shut my eyes, wanting it to soothe me. Usually, it did. Today seemed like it was going to be the exception for everything. I count to sixty in my head.
"Dr. Herman?" This time, Jackson broke the silence as he straightened up. "He's not crying."
"What?" Given that I couldn't feel a majority of my body, I can't get up to look like I want to. One of the residents was still stitching up my inside but it doesn't stop me from straining my neck to try and get a look. "What's going on?"
"Just a minute," Dr. Herman spoke. There was no way for me to be patient or calm and my breath was getting tighter. The beeping on my heart rate monitor began to pick up as the panic settled deep in my bones. I can't move and I can't see, and I can't hear my baby cry.
Until I do.
A flat, high-pitched cry suddenly filled the O.R. as our son took his first screaming breath of air. Suddenly, I could breathe again. It wasn't loud but it was there and it was him. They must have had to suction off some of the fluids to get him to be able to breathe on his own. But he was here and he was crying on his own. He was going to be okay. He was really going to be okay.
"That's your son." Dr. Herman's voice was higher and kinder than I had ever heard before. "We're going to get him up to the NICU, but his lungs sound good. Congratulations."
"Go," I pushed at Jackson's arms as I spoke. "Go be with him."
"Are you sure?" He asked.
"Yeah."
Even though I want to stay up and see him when I'm finally stitched up and wheeled back to a room, the combination of exhaustion from the emotional strain and the side effects of the drugs pumping through my system is enough to take me out for a few hours.
The first time that they bring our son up to my room, he's inside of an incubator to keep him warm. Bringing him into the world so early was a risk for many reasons and though he'd had injections weeks ago for the sake of helping his lungs develop, there were other things to worry about – his ability to regulate his own temperature, whether he would feed without difficulties. There was a long, challenging road in front of us. But when he's laying in an incubator with a blanket wrapped around him, there's nothing to harm him or cause him pain. It was a risk but it was one to keep him out of pain.
"He's so small." My fingers pressed against the clean glass as I leaned forward to look at him. A blue blanket kept him snuggled up. His head looked big compared to the rest of the body. "He's beautiful."
"Yeah, he is," Jackson agreed. "Dr. Herman said we can hold him if we want to. We just have to pick him up the way that she told him to. Under the rump."
"You first." I wanted to but I was terrified.
I watched with wide eyes as my husband gently picked up our son, holding him securely but not too tight. His bones were gentle and I'd heard the run down. His legs were already curved, the soft spot on his head bigger than it should have been, and he was showing early signs of deafness. But now, I could hold him and love him without hurting him.
"Hey, little buddy," Jackson's voice was soft as he spoke to him. He held him close to his chest, bouncing up and down slightly. "Hey. It's me, your daddy."
Our son made a little peep. "He likes you," I smiled.
"Did we decide on the name?" He asked, glancing up at me.
"Yeah," I nodded my head. "Samuel Norbert Avery."
Jackson held onto Samuel for a few minutes before he sat down on the bed next to me and placed him down in my curled arms. He doesn't even weigh four whole pounds, nearly nothing in my arms. Carrying him around inside of me had been a huge weight because of the terror that had come with every waking moment. But now, he was light. That weight was gone.
Holding him fixed that weight and more.
"Hi, Samuel," I whispered to him. One of his little arms had escaped from his wrap. I ran my finger over his little ones. "Hi, baby boy. I hope you recognize my voice. I'm your mommy."
A muscular arm wrapped around my shoulders as my husband sat down next to me, his head leaning on top of mine. I leaned back into him and held Samuel a little closer to me, heart fuller than it had ever been. Sitting in this hospital and getting the kind of news that could change and break a life had been horrific. But now, sitting here and holding my baby boy, it felt like things had fallen back into place. I had persevered. We both had.
"He squeezed my finger," I breathed out with a pleasant gasp, looking down at him before looking at Jackson.
"He knows you're his mommy." Jackson kissed the top of my head.
Because of the complications that come not only with the fact that he was born two months earlier and the OI, he spent the first sixty-seven days of his life in the hospital. Breastfeeding doesn't work out but pumping for him and letting him take the bottle does, so I feel good about that.
There was nothing more terrifying than putting him in his car seat for the first time and driving home. I trusted Jackson behind the wheel entirely but I couldn't control and fight against every single other driver in Seattle. Nothing happened, of course. It was nothing more than anxiety getting the best of me, taking over more than my gut and controlling my thoughts. Holding him in my arms and walking into our apartment for the first time felt so good that I broke out in tears. He was home. He was finally home.
"Welcome home, buddy." Jackson cradled his head gently, still speaking to him despite the decline in his hearing. "This is your life now."
Our house gets louder and quieter. Samuel wakes up during the night crying and doesn't sleep it for the first time until he was seven months old. Jackson and I are the ones who get quieter as we begin to learn ASL for our son, signing to him and to each other in the circumstances when we can. Often, we do both. It's different than learning any language had been in school. It was more important. This was something that we were going to use for the rest of our lives if it was what he wanted. Getting fit for a hearing aid was more complicated because of the condition of his bones. I knew that it was probably what Jackson preferred, but we find small ways to have fun with learning ASL.
Do you want to take him to the park today? I signed to Jackson.
Do you think that's a good idea? Jackson replied.
My lips pressed together as I looked at Samuel, sitting up on the couch. He was two years old now. His legs were currently in casts from the rodding surgery that he had gone through recently, to fix the bowing in his legs and try to help him be able to walk with assistance one day. Rodding surgery by itself wouldn't guarantee it, but it gave him a fighting chance. He had proven that he was a fighter.
Yes. I finally answered.
In his little wheelchair, Samuel is happy to go to the park and get fresh air. It's his favorite place. Taking him out around so many kids always makes me a little nervous – people stare and ask questions and even if he can't always understand it, I worry for the day that he does.
"Momma!" Samuel shouts as he leaned forward in his chair, reaching for one of the pigeons that scampered by. "Birdie!"
"Yeah, baby," I encouraged him. "It's a pigeon."
At three years old with walking braces, Samuel took his first steps trying to chase after a bird in the park. He gets in three quick steps before he falls down and my heart skipped a beat, but he gets back up without anything breaking. He smiled and laughed and tried to go after the birds again, completely unbothered with stumbling around in the process. Jackson is always more relaxed about it than I am – he'd had a fair share of broken bones from roughing around as a kid, compared to the only one I had ever broken was my nose. Watching him run the best that he can and chase birds, something so simple that he should have never been able to do, it heals where the anxiety hurts.
On his fourth birthday, our big present to him is a pair of parakeets. They chirp like crazy but they make him the happiest that he's ever been – he gets his own pair of birds that he doesn't have to chase after, that are happy to sit on his shoulders or take a nap in the hood of a sweatshirt. They bring back some of the noise to our house.
Jackson talks me into a private school for the first years of his life, if only because of the smaller setting and better attention from the teachers would be ideal for his condition. His bravery for falling and getting back up came from his dad, but his love for books came from me.
Of course, school means nosy kids asking questions. There are days that he comes home from school bursting full of sunshine, and there are days where he was hard to get to open up. Most of the other kids at school were kind albeit confused, and once they understood, didn't push the issue. Some liked to push him around in the wheelchair if he would let him. But being in school was a good thing for him. He was a good student. All of his teachers adored him.
"Momma! Dad!" Samuel shouted out, grabbing both our attention.
"Yes, baby?" I asked, knowing he could read my lips with some basic things.
Am I ever going to have a little sibling? He signed to us.
My head turned toward Jackson, tilting slightly as I raised my eyebrows at him to try and get a reaction. There was a hint of a smile that brought some light to his already bright eyes. He gave a slight nod of his head, not wanting to be too obvious in front of Samuel. Five years old now, he was good at reading body language. It was one of his main forms of communication. I got more hugs than any mom could have ever hoped for.
Do you want a brother or sister? Jackson signed to him.
Yes! He replied enthusiastically.
Dad and I will work on it. I answered.
Do you promise? After Samuel had signed the question, he rolled himself forward in his chair and held out his little pinky to me. He wanted a pinky promise. Leaning down, I took his pinky with mine, wrapping ours together.
"I promise."
The day that the pregnancy test turns positive, of course, we're both thrilled. We had barely discussed having another child after getting the diagnosis that Samuel had because we knew that parenting him was going to be a full-time job. It was hard for me to keep an easy schedule, but Jackson always did a good job with making sure that he could be there for everything. But now he's older. We know his limits, and so does he. There have still been accidents over the years – fingers, wrists, a foot bone. Each one hurt me. Yet he was still a champ in his wheelchair and liked to walk with assisted technology in the park.
We wait a few more weeks to tell Samuel, till I'm close to showing to make it all a little more real for him. He was perhaps even happier than we were. It's during the second pregnancy that I cry with relief when the baby kicks, and the amnio and ultrasounds were all normal. Our daughter wouldn't suffer through the same things that our son did.
On the day that she was born, our six year old son waited patiently with his grandmother and Uncle Owen and Aunt Amelia. He loves both of them, even though he'd broken his wrist with Owen on one occasion. Owen still felt guilty about it. Samuel didn't care because he'd had fun.
He has to wait twelve hours while I'm in labor, able to deliver naturally and at term this time. That was longer than either one of us had planned for.
"Can I hold her?" It was the first thing that Samuel asked when he met his little sister.
"Of course," Jackson spoke to him.
Be gentle. I signed to him.
"Like with me?" He questioned.
Just like you.