When I was young, I always hated gym. I was never good at it. The running and the throwing of things was just never my bag. I was always short of breath and sometimes even came close to fainting. I always chalked it up to being a fat little kid who was grossly unathletic.
I lived for ninth grade because I only had to take a semester of gym and then it would be over forever, or at least until I got to college. I finished 9th grade and gladly went on my merry gym-free way.
Fast forward to 2007.
I had been out of high school and was in my third year of college. I began experiencing back pain, the likes of which I had never felt. I finally went to the doctor, and while the Nurse Practitioner was listening to my heart, she looked up and asked “You have a heart murmur, don’t you?”
I had never heard such a thing.
After tests, including one where they sedated me, shoved a “probe” down my throat, and looked at my heart (after which I cried for want of a cheeseburger), I was diagnosed with a regular heart murmur with Mitral Valve Regurgitation (which I described to people as “my heart pukes”) and Sub-Aortic Stenosis.
Some time later (2010-ish) my dad, who has CHD, began having Atrial Fibrilation episodes.
He eventually got in to see the doctor his brothers go to, and we loaded up to see if he could fix my dad’s bum ticker.
The next phase of the story I wrote about earlier in this post. During this time I was re-diagnosed with a condition called Hypertrophic Cardiomyopathy or HCM for short.
All of the things that I had experienced as a kid, all of the shortness of breath while running, all of the blacking out in PE episodes – they all made sense now (granted, they still don’t account for my athletic abilities or lack thereof).
After my diagnosis, I was scared. I began taking my drugs like a good little girl and prepared myself. I scheduled an implantable cardioverter-defibrillator (ICD) implantation for July, the month after my dad got his. I recovered just in time to return to work for the school year, and I am feeling better than ever.
After all of that worry and fear I have come to realize some things.
Not every 25 (almost 26) year old can say that she is battery operated.
Before any of this happened, I used to tell my students that I had a plastic heart; now I (sort of) have a metal one.
I tell people that I am part computer, or even bionic.
I make sick jokes about being shocked all the time.
My dad and I even joke about starting a doo-wop group with 2 of his brothers who have ICDs called The Pacers.
I never knew that having HCM and an ICD could be such a source of amusement. I even love to freak people out by letting them touch it under my skin. There is nothing better than the slightly horrified look on someone’s face when they touch the hard, metal rectangle on my chest.
In the end, the laughter and the jokes far outweigh the fear and uncertainty that I had before I got the surgery.
Plus, I hope that in the 6-10 years that it will take for me to need a replacement, they will have integrated an MP3 player into the device.
My son is now 10 weeks old. He has a congenital heart defect and severe birth defects, limb differences with all four limbs affected.
I’m here now because I have a story to tell, a story with infinite ellipses and a looming question mark. It’s just the beginning of a story, really.
But does the story about my new son start the day he was born? Or the week before when we learned he had profound defects and would likely not survive? Or the start of my pregnancy when I learned he was one of three, two of whom did not remain viable?
I think to get the most understanding of who this boy is, what he means to us, I have to back up even more.
My older children are almost thirteen and nearly six. I joke about the seven year age gap being one of the “best kept secrets” of family planning, but there really wasn’t any planning involved. The big space, while wonderfully beneficial and I wouldn’t change it now for anything, wasn’t the result of careful decision making, but rather inexplicable secondary infertility. I always imagined myself as the wisecracking mom to a passel of feisty kids. I wanted the rowdy chaos of a big family. But my quirky biology didn’t comply.
I lost a pregnancy early in the second trimester, about four and a half years ago. I’ve had a number of very early miscarriages, which were disappointing, but nothing like the devastation of losing one after crossing into the proverbial “safe zone.” That loss resulted in lingering complications. It was a difficult time to live in my own body.
So when I found myself surprisingly expecting back in the early spring of this year, it was hard to believe. It was hard to tell myself that it was true, let alone to tell anyone else. It was too fantastic.
I felt like maybe I could protect the idea of it and make it stay real somehow by not breathing it aloud to others. And then I started bleeding. And I bled constantly for over a month, during which I learned I was losing two tiny embryos. How ironic that years of wonky fertility would find me knocked up spontaneously with three, each in a separate sac? But the irony turned around on itself, like a mobius strip, and it was a pregnancy loss after all.
There were weeks of not knowing if it would be a total loss or not.
When the bleeding stopped, there was one scrappy baby, holding on in there.
And suddenly, I was the caretaker of this tremendous and wonderful news. It was too unreal and too thrilling to me to want to share the news.
How could I tell anyone that I was pregnant and have them possibly understand what that could mean to me? Of course, such knowledge comes up organically, in conversations and double-takes (is she or isn’t she?), and it didn’t stay my sweet secret for long. But, even once the word started getting out, I didn’t make a deal of it.
I didn’t tell Facebook (also, fuck Facebook. while we’re at it.) and I didn’t make any grand announcements.
You’d think if I was so happy about it, I’d want to sing a song from the roof and do a mass postcard mailing, but it was just too precious to expect anyone else to appreciate, and I felt very protective.
Once the high drama of the first trimester passed, it was a long dull slog through ill-fitting pants and raspberry leaf tea and heartburn.
I had delightfully warm and chatty visits with my homebirth midwife; we organized the house and checked off an industrious home improvement To Do list; there was only completely glad anticipation.
I had what I hoped would be my last prenatal appointment on November 2nd, which was also my “due date”. My midwife didn’t feel certain about the baby’s position and had me zip down to an imaging clinic for a quick ultrasound. I had a lot of anxiety on the drive. I was down to the wire, for sure, and didn’t have any time to flip a breech baby.
The ultrasound tech saw right away that baby was head up. I sighed and tried to remain cool.
I’ve got this, I thought. Maybe the baby won’t have the exact birth we’d been planning, but it’ll be okay.
And then the tech asked me to wait in the room. I was confused by this, and called my husband. “Baby’s breech” I told him when he answered, “but it’s a baby in there, not, like a cat or something. I saw the head and I think the hands.” And then he asked me, “the right number of fingers?” And then I had to hang up quickly, the tech was coming back with someone else.
I was introduced, in that small dark ultrasound room, to an older man, the radiologist. He shook my hand and then blurted out, “Your baby has multiple abnormalities.”
He said the baby had deformed limbs, missing fingers, probably missing other parts. I could barely hear him from this whooshing sound suddenly throbbing in my head. I stood up and grabbed my bag. “I don’t know the words to say,” I remember saying. And that’s all I said. I walked out of the room, walked past the waiting area and said to my big girl, contentedly reading a book by a window, “We’re leaving now,” as I walked out the door.
I know by the time I got into the car I was crying. I know that I tried explaining to my daughter why I was crying, except I didn’t know. I know that I called my husband and somehow told him.
I know that my midwife called me and told me not to drive myself home. I know that I told her I’d be fine. I’m fine. It’s fine. Fine.
I know that I kept telling myself I can’t crash the car because I have to take care of my daughter.
I know that by the time I got home, about forty-five minutes away, my husband was also there.
I know that we left almost immediately to the city, where somehow I’d been fast-tracked into an appointment at a maternal fetal medicine clinic for a level II ultrasound and an amniocentesis to see what congenital birth defects that he had.
I know that I cried all the way there.
What happened next is we learned this baby we’d been expecting all along had “significant” and “profound” birth defects, in and out. We learned he was a boy.
We learned that he had syndromes that were considered “incompatible with life.”
Two days after that appointment, we had a consultation with a neonatologist and a meeting with the hospital ethics committee. Maybe you already knew that hospitals have ethics committees, but I did not. By this time, our baby’s file had been shared with a multitude of specialists who carefully analyzed his congenital birth defects.
The neonatologist told us that she did not think it would be unreasonable for us to proceed with an out-of-hospital birth. By which she meant, there is not a lot they can do for this baby, so maybe you just want to spend his last moments peacefully at home.
We were braced for the worst. The best was still very bad. Based on his rare and complex congenital birth defects, all best guesses determined that the likelihood of him having severe neurological impairment was very, very high.
Would he be able to eat?
Breathe?
Hear?
The ethics committee gave us their veritable stamp of approval, entrusting us wholly with all decisions. We discussed how long we would continue support for our child? What kind of support? I learned the phrase “palliative care”.
There was one week in between my world falling apart and his birth. One week of such deep despair I won’t even begin to describe it. One week of waiting for him to be born so he could die and we could say goodbye.
One week of listening to Pearl Jam’s Just Breathe over and over and over again, like some kind of prayer.
Among our ethics committee approved plan was my insistence on avoiding a C-Section. I don’t suppose that the hospital sees a lot of vaginal breech births. Probably fewer Pitocin-induced vaginal breech births. I also was firm about refusing fetal monitoring. Did I want to hear the heartbeat of a baby who would not live?
No.
And while my other babies were born triumphantly without pain relief of any kind, I assumed I would need something to get me through this dreadful thing I had to do. In the end, though, the drug made labor so hard and fast and intense, I was out of my mind with the hurt of it all and did not have time nor wits to request pain medication.
I say that not out of pride, for there is nothing to be proud about what was the darkest moment of my life, but just to illustrate what an unusual birth it was.
Everything about this boy has been unusual.
There was no tender welcoming a new life into the world. He was zipped across the hall, neonatologist and NICU nurses and cardiologist and geneticist and who the hell else at the ready, to check out his birth defects. I turned my head away and didn’t even want to see him go.
We heard him cry. It was a confusing sound. We thought he would need intubation. It was assumed that his heart defect would prohibit his lungs from working efficiently.
But he was crying.
And they brought him back to me. And they said he was healthy.
And I held his tiny broken body and I nursed him and he latched on better than my other babies latched on as newborns.
And I cried.
I cried because he wasn’t dead and I cried because he was alive. No one mentioned the possibility of leaving the hospital with a disabled baby. How do you even prepare for such a thing? There is no preparation. There is only disbelief.
His stay in the NICU was brief, just over a day, for monitoring. This little champ maintained a near perfect blood oxygen level, despite his heart defect. He’ll need surgery sooner than later to repair his broken heart. The pediatric cardiologist explained it as a common congenital defect, a routine surgery. But in my world, there is nothing common or routine about open heart surgery for a brand new baby.
Prior to this roller coaster, the most serious medical situation my family experienced was that time my daughter had stitches by her eye eleven years ago. How’s that for contrast?
How do I tell you about this baby?
I do not want the sum of him represented by what he is not, what he is missing, the challenges that await us.
But what else is there yet?
His issues are not minor. His bilateral leg condition alone occurs approximately once in every one million live births. He will never walk without serious, invasive surgeries and devices. Amputations. Prostheses.
Do you know what a mindfuck it is to hear such words about a newborn?
Can you feel the weight of this?
My big boy, the bouncy one, the easy-going one, the boy with the casual shrug of his shoulders, mentions his baby brother’s hands like it’s the most obvious, simple thing ever. “He only has three fingers on one hand,” he says, “and two fingers on the other one.” So matter of fact. No catch in his throat. No mourning the loss of future handprint turkeys or making the motions to so many kid songs.
I’m not there yet.
I’ve been looking at and loving on those tiny malformed hands for fourteen days now and it’s still hard for me, even as they tell me “it’s just mechanics” and “he’ll figure it out” and other encouraging platitudes.
I am usually so guarded and private. It’s out of character for me to share so much here, even as I’ve intentionally omitted specific diagnoses (a grouping of several, with no umbrella catch-all for them all together as of this point). But everything is different now. Since we’ve been home from the hospital, I’ve been hiding. A few people have met this surprising baby, but we haven’t yet left the house, save for doctor appointments.
I can’t hide indefinitely. I will have to be brave and bold enough to withstand whatever questions and curiousness occurs when the world meets Ulysses.
He looks an awful lot like his big sister did as a newborn. Same deep eyes, same frowny mouth. When he’s all wrapped up in a blanket, you would never know that he has such serious things going on. And I can assure you that he does not know. Everything else about him is just what you’d expect from any newly born babe. He squirms and fusses.
He makes those mysterious sleep smiles. He flails his arms when a loud sound startles him. His brain seems normal. Everything else about him seems normal.
There is nothing normal about our life now.
We have so many appointments scheduled. He has already had more doctors examine him than maybe my other two children, myself and my husband have ever had, all together. I don’t know how to get used to living such a highly medically managed lifestyle.
It’s been just three weeks since everything changed. So much information to process in such a short amount of time. I’ve blamed myself incessantly, even as I know there was nothing I did or did not do to cause this. That is the absolute truth, and yet, I worry that people will wonder… of course they will. People with murky knowledge of genetics, people who have grown lazy in their own good fortune, people who can’t possibly know how wanted and treasured this little baby has been all along.
Everyone’s delighted that he survived the birth, that he is thriving.
And yes! What a great outcome!
But now what?
Since I wrote that, we have laid out a plan for open heart surgery (soon) and orthopedic surgery (before his first birthday). He is growing plump and smiley.
I don’t like the word defect much. All of these children born with what we call “defects” are just perfect; they aren’t defective. She had a beautiful heart even though it had a deadly congenital defect in it that lead to her loss.They are the imperfectly stitched handbag sold at a discount. They are much more than their sickness or defect.
I used to think that birth defects only happened to babies of moms that were sick or did something, like smoke crack while pregnant, or to a family with a genetic history of congenital heart birth defects. Smoking crack was never my thing, and my family has no history of birth defects -especially congenital heart defects – so losing a baby to a heart defect wasn’t even on my radar. None of the babies in my family were in the NICU or really sick, and definitely none of these babies had ever died.
My daughter’s heart problems weren’t my fault. She might have been a sick baby, but it was something that happened at random.
The creation of human life is one of the most complex and shockingly beautiful things that our bodies are designed to do. The microanatomy that goes into this task is so astonishingly complicated that it’s a miracle any of us walk around at all. And yet, most of us do. Most…but not all.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.
It is through our stories that they live forever. These children were here and they mattered. They were loved. They are loved.
There are many, many difficult things about a stillbirth. First and foremost, a child is lost. Every pregnancy revolves around planning. You plan your due date, your delivery method, your parenting style, and your hopes for your baby’s future. The second that heart stops beating, you lose it all. What makes a stillbirth loss distinctive is that your baby never takes a breath. There’s no birth certificate and no death certificate. There’s no legal proof your baby ever existed. You pay for the delivery but you get no tax deduction. The world moves on as if your baby never was. For the person who carried the child, it was very real. Your dreams and hopes were real, the baby’s movement was real, your baby was real. The majority of the rest of the world, however, would just as soon forget it ever happened.
The simplest question becomes complicated. How many children do you have? I feel guilty if I don’t mention my son, but I know the other person really doesn’t want to hear about my deceased child. They were just asking what they thought was a innocent question.
I will never forget my son. This blog is my attempt to remind a tiny portion of the rest of the world that he existed. It is also intended to help anyone who might be going through a similar experience. Stillbirth is something that is not talked about. No one even tells you it is a possibility. It is not listed on the doctor’s agenda of things to warn you of when you become pregnant. And yet it happens to many, many people. In most situations, it cannot be prevented. There are no warning signs and no group of people to whom it is more likely to happen. The only thing we can do is increase awareness so the world will be more empathetic and will acknowledge the existence of all our children.
Declan’s Story
When I woke up that morning, I didn’t know that I had already heard my son’s heartbeat for the last time. It was just a typical day. We got everyone up and dressed for work and daycare. I was working for half a day since my maternity leave began at 12. I gave myself a day and a half before our scheduled C-Section to get just a little rest before all the fun began. I was nervous, excited, and scared for the child within me to be introduced to the world.
We had found out at the 20 week anatomy scan that our son had a heart defect and a 50/50 probability of Down Syndrome. James and I had celebrated the discovery that we were finally having a boy and then suddenly we were mourning his health and prognosis. We cried, sought spiritual guidance, commiserated over the unfairness of the world, hoped for the best, and planned for the worst. Many, many ultrasounds and visits to a pediatric heart specialist were endured to try to figure out when we were going to have to tackle the heart surgery. We were hopefully expecting for him to be stable upon delivery and make it to 6 months before surgery was needed.
In due time, we came to accept our son, however he would be presented to us. We loved him, and while we were very excited to meet him, we were extraordinarily apprehensive, as well. We named him Declan Raiden and anxiously awaited his arrival.
I finished up loose ends at work and went to a last lunch with all my co-workers. After ordering our food, I realized I hadn’t felt the baby move in a while. I had been at the doctor the day before for my last non-stress test to monitor the heart rate. It wasn’t reacting enough and the nurse brought me a Mt. Dew and monitored me for another 20 minutes. After that, the doctor read the scan and stated that the heart was reacting appropriately and we confirmed my C-Section date for two days later. I wasn’t too concerned the next day at lunch. I poked him a few times and joked about him being lazy and running out of room. I ordered a Mt. Dew, poked him a few more times and waited for him to kick me. I mentioned to the others that I couldn’t remember feeling him move all morning. My co-worker, Lisa, called her mother who is an OB nurse and they suggested I go to the doctor’s office and have them check the baby, just for peace of mind.
I texted James and told him I was going by the doctor to see if they would do a quick doppler so I could check the heartbeat since I hadn’t felt him move. When I walked up to the counter at the OB’s office, I actually felt a little silly. After a quick explanation of why I was there, the receptionist spoke with the doctor who agreed to the doppler. The hallway seemed very long as we approached the room. I sat down and lifted my shirt. The baby had still not moved and my heart was in my throat, beating so hard I thought it was going to be hard to hear the baby’s heart beating over my own. The cold ultrasound juice was squeezed onto my enormously pregnant belly and the tech pulled out the wand.
I knew. After about 3 seconds, I knew. Anyone who has had a doppler that late into a pregnancy knows you hear the heartbeat almost instantly. I heard silence. The tech started moving the wand around in a futile search. “Oh God,” I moaned, “No, no, no, God please no.” She searched for a while longer as I put my fists over my eyes and groaned. The tech said, “Maybe he’s lying on his side and I just can’t find it.” But even she knew she was lying. You could see the shock in her face as she stood quietly and told me she was going to get the doctor.
The mind is a terrible thing and hope dies slowly and painfully. I waited. No one had officially told me anything and even though I knew, hope was lingering. Someone came into the room and told me to go next door to the ultrasound room. I moved like a zombie and clambered my way to the next chair I could collapse into. I raised my shirt once again and looked at the TV screen as the doctor prepared the machine. I was terrified.
The image of my son showed up immediately. He was so still. And, again, I knew. The tears began to fall even before the doctor could finish saying, “I’m so sorry, Paula, there’s no heartbeat.” I buried my face in my hands and felt the full crushing blow of what she had said. She asked if I wanted them to call my husband and I nodded. One of the nurses left to find his number in my file. The doctor put her hand on my shoulder in an ineffectual attempt to comfort me. Then, at a loss for anything to say, she left me to my mourning.
I turned over onto my side, wrapped my arms around my heavy, lifeless belly, and sobbed. There’s no use in trying to explain what I was thinking or feeling. It’s a jumble of useless emotion. My son is dead. My body somehow failed him. What did I do wrong? Was there a multi-vitamin I missed? Did I overdo it at the pumpkin patch with the girls? Why? When? How? I was lost in a fog of confusion and grief.
After an indefinable amount of time, James was escorted in the room and the door shut behind him. I sat up and looked at him. Thinking that the doctor had already told him, I expected to see a mirror image of my own despair, but I saw only confusion. “What is it? What’s wrong?” I realized that they hadn’t told him and, for a moment, I didn’t know how to say it. How do you tell your husband his little boy is gone?
“There’s no heartbeat.”
“What? What do you mean?”
“There’s no heartbeat. He’s gone.”
He glanced up at the screen where the last image of our son remained, and I could see the realization flow over his face. He turned to me and put his arms around me. We stayed like that for a long time, grieving together.
The doctor returned to the room to make a plan. I’ve always been a meticulous planner. This very baby was planned because I wanted him to be born on 11/11/11. I planned my schooling, my volleyball career, my marriage, my home, my job. I just never thought I’d ever have to make a plan on how to deliver my deceased baby. We were told to go to the hospital and meet with the doctor on call. As I was gathering my things, James stepped out and called my parents. He explained what happened and told them to come. They live 3 hours away. James went to work to close up his office and I drove myself home.
After James picked up our 3 and 5 year olds, his parents met us at home to watch them and we went to the hospital. We had to go to registration and start the process of explaining our situation over and over. Signing my admission paperwork, I saw the words ‘fetal demise’ for the first time.So there’s a term for this, I thought. Great.
We waited for over an hour in a delivery room. We waited in a room in which hundreds of babies had been born to parents crying tears of joy. We cried as well. We sat together on the couch and said very little. When the doctor finally arrived, he explained that it was too late to do the C-Section that day. He wanted to do it the following day when a team would be prepared. I was shocked. I didn’t realize it would be an option to wait. We were sent home.
My parents were at the house when we got there. We hugged and cried and told them what the plan was. We didn’t talk much. No one wanted to alarm the girls. So, my mom made dinner and we ate in silence. James and I went to bed early. We laid in bed facing each other, with our dead son between us. Only 24 hours earlier, we had been watching him move and James had put his hands on my stomach and talked to Declan. He had been a very active baby and I loved feeling him move. All his energy made me feel like things were going to be ok. Now, my huge belly, the symbol of a glowing pregnancy, was a harsh reminder of what had happened. I couldn’t escape it: the stillness and heavy weight of our crushed dreams. I finally fell asleep out of pure emotional exhaustion.
The next morning, we rose early and drove to the hospital. Arriving at the delivery ward, the mood was somber. I felt that everyone looking at me knew why I was there and didn’t quite know what to say. The dismal situation seemed so incongruous in a place that was meant for excitement and joy. I tried not to cry much. Our nurses were incredibly sensitive and caring but I could sense the awkwardness of the situation. I felt bad for them. This shouldn’t be part of their job.
James was in the operating room with me. He stood and watched our son being delivered, just as he had for our two daughters before him. This time, however, the distinct cry of a newborn was not heard. There were no exuberant cries of “It’s a boy!” James didn’t get to place his finger into a tiny palm and feel the strength of that first grasp. The nurses quietly took Declan from the doctor and began the process of cleaning him. My surgery was finished and we were moved into the recovery room.
They brought us our son. He was wrapped up just like any newborn in a unisex blanket and cap. The nurse placed him in my arms. He was beautiful. He looked perfect in every way. His almond shaped eyes revealed his extra chromosome but that didn’t matter anymore. I stared at him as I held him and cried. James stood next to me and after a while, took him from me to hold him. It was the first time I’d seen James break down. It was painful to see him like that. He held Declan very close to his chest and buried his face in the blanket as his body was racked with grief.
After some time, I told him to call my mom. We hadn’t been sure how Declan was going to look when he was born and we had told my parents to stay with the girls. I found that I still had that urge of a proud parent to show off my precious child and I just knew my mom had to see him. James made the call and Mom arrived just a few minutes later. I handed her my son and I could see the mixed emotion of amazement and sorrow. Our priest came to bless the baby. After he left, we all held Declan one more time. We kept him with us as long as we could, but the time was approaching when we had to say our final goodbyes.
I was the last to take him. I held his tiny hand in mine and kissed his cold forehead. I told him how sorry I was that I had failed him; that for some unknown reason, my body had been unable to deliver him kicking and screaming into this beautiful world. I love you, I whispered against his smooth cheek, and I handed him to the nurse to take away. I had never felt so empty.
The doctor came in and talked with us. He explained that he saw no definite outward sign of what had gone wrong and asked if we wanted an autopsy. We agreed to an in-house examination. We didn’t want him sent away for a full autopsy because, at that point, it just didn’t matter. No test results were going to bring him back. They moved me to a different outpatient recovery wing so I did not have to hear the crying infants on the maternity floor. James and I recovered together. I took full advantage of the morphine pump throughout the night as it dulled both my physical and emotional pain.
The following day, my parents brought the girls to see us. It was time to tell them. James and I gently explained that their brother had gone to heaven. Annika, our 3 year old, was too young to really understand. At 5, Layna grasped the gravity of the situation. She began to cry and asked why. “Why couldn’t he stay here with us, Mommy? Why did he have to die?” I had no answers for her. Her questions mirrored my own.
At the end of their visit, Layna kissed me goodbye. Then she patted my hand and said, “It’s ok, Mommy, we’ll have another baby.” She was so young and hope was so quick to return to her. For me, it took a little longer. The unimaginable had happened and it had torn a dark hole right through my perfect little world.
We were sent home after a few days. I recovered from the surgery and James began the painful journey of making the final arrangements for Declan. My milk came in a day or two later. It was excruciating, physically and emotionally. I broke down one evening and groaned through sobs that my body was making milk for a baby I couldn’t hold. It was just so heartbreaking.
We tried to keep it together for the girls. Each day was waded through in a fog of disbelief and overwhelming sadness. We talked about a gravesite and coffin, but I didn’t want to live in this town forever, and I couldn’t stand the thought of one day leaving him behind. Cremation seemed like a ‘better’ option. The day James brought our son home in a small wooden box, we held it between us, held each other, and cried.
Declan’s memorial service was held at our church. I medicated myself as much as possible and greeted each “I’m sorry” and “Let me know if you need anything” with a polite smile and “Thank you.” Once again, we said goodbye to our son.
A small piece of advice for people addressing anyone grieving the loss of a loved one: just say I’m sorry. Every time I heard “He’s in a better place” or “God had a different plan,” I was screaming to myself: his place is with ME and any other plan is WRONG. I was confused and angry. It was grossly unfair that so many people abused themselves throughout pregnancy, or didn’t even know they were pregnant, and went on to have perfectly healthy babies. I tried so hard to do everything right. I gave up sushi and hot tubs, took my vitamins every night, and attended every appointment diligently. Why wasn’t it enough? How could this have possibly happened to us? These were questions that would never be answered.
Eventually, my pain meds ran out, my ‘maternity’ leave ended, and James and I found ourselves on the road to recovery. Days turned into weeks and weeks into months. It doesn’t matter how much pain is thrown at you; life has a way of carrying on. Thanksgiving came, followed by Christmas and New Year’s. I drank a lot of wine and spent many quality hours with my girls, albeit not simultaneously. We took a vacation to Williamsburg for a week in January and made new memories. We found the balance between moving on and never forgetting.
There is a rainbow at the end of this tale. During my journey of recovery, I came across the term ‘rainbow baby.’ The following is a description of it:
“It is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn’t mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy, and hope.” (Author unknown)
Our rainbow baby came one year and 20 days after we lost Declan. The beautiful Quinlyn Levay Bass was conceived in March, 2012 and, after a perfectly ordinary, drama-free (although not stress-free!) pregnancy, she was delivered via C-Section on 11/20/12. Her birth was bittersweet. I’d waited almost 2 years and 20 months of pregnancy for a baby to take home in my arms. The death of Declan scarred me, and I am constantly petrified that something is going to happen to Quinnie. Although it probably isn’t fair to her and she will most likely be in therapy 20 years from now because of it, two babies worth of love and anticipation have been showered upon her. She will always be my rainbow, kissed by her brother in heaven before being sent to us.
People say that I am strong.
I am not.
My marriage is strong. Many couples don’t make it through the loss of a child. James is as much reliable and supportive as he is sensitive and empathetic. He is a wonderful husband and we survived this together and came out the other side closer than ever.
My family is strong. I know without a doubt that my parents would drop anything, anytime we needed them. They understand that just because I don’t always show my emotions, it doesn’t mean I’m not feeling them. My mother was the only person other than me and James who held my son in her arms. She knows more certainly than I do that Declan is our guardian angel. She and my dad took care of our girls and our home while were recovering and their presence made it just a little bit easier.
But me? No, I’m not strong. What I am is present. I have three living children and a husband. I have parents, in-laws, brothers, nieces, and nephews. I have a job and a home. In other words, life goes on. I am persistently on the verge of tears and some days I feel as though I will explode with emotion. On the outside, however, I am very careful not to emote too much lest everything that is pushed down and backed up comes out with it.
I try to live each day.
I try to be present with my living children.
Everything I do in life is for them. Because, if you believe in that sort of thing (which I’d like to), my afterlife will be with my son.
Late at night, after every living creature in my house is asleep, I close my eyes and picture him. I no longer dwell on the life that could have been and I don’t focus on the things that will never happen. I know I’ll never mark his height on the wall, nor chase after him down the street as he rides his bike the first time. I’ll never stay up late worried if he’s ok and I’ll never beam with pride at his graduation.
I know this.
As selfish as this sounds, Declan was mine. I carried him for 37 weeks, nourished him, sang to him, watched him on the monitors at our numerous ultrasounds. I planned for him and worried for him and accepted him. His entire life on this earth was lived within me. He was mine and we will be together again. God can’t keep him all to Himself forever. In the quiet hours of the night, I focus on Declan and I know:
My little girl, Jillian, due Christmas Day has been diagnosed with Hypoplastic Left Heart Syndrome.
I feel like everything has caught up with me today. Emotionally and physically, I’m just worn out. I’ve tried to be strong for the last six weeks but… I feel like that’s slipping away.
I’m starting to realize that I need to be honest with myself: Yes, I’m optimistic. Yes, I’m hopeful. Yes, I believe we’re making the right decisions. But I’m also hurting. Deep down, this just hurts.
Through all of this, I’ve had amazing people come forward in support for us. I’ve met some people who have gone through this and other things parents shouldn’t have to go through, too. And while all of that makes me feel better, it can’t heal the hurt. It doesn’t get rid of the guilt I feel and it doesn’t ease the pain. It doesn’t make it go away and it doesn’t answer any questions. I’d like to say that my heart is broken, but I’ve been shown now, twice, what a truly broken heart is. I’d like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first?
I’ve asked myself a million times why this is happening? Why does this have to happen to my family? Why do all of my kids that have to go through this? Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?
It’s not like I’d wish this upon anyone else. But I wouldn’t wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn’t one enough? And why three or more surgeries this time?
What did I do to deserve this? Was there something that I was supposed to learn after Ethan’s surgery that I didn’t? Some lesson that I was blind to; that maybe if I’d understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family complete when I should have been happy with what I had? Why do I have to excitedly yet apprehensively count down the weeks until she is born? Why do we have to try to put on a happy, brave face everyday when really we’re mad and scared and hurt inside?
Why do we have to face the fears that our baby might not come home with us?
I just don’t get it.
The rational side of me says that it’s just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and twice now that recessive trait has been expressed.
But then there’s the other side of me. The side that asks all these questions and wants answers that aren’t based in science. Who cares if it’s genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people take for granted. I don’t blame them. After all, that is how it’s supposed to be.
A newborn shouldn’t be required to fight for their life. Ever.
