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Gerard’s JourneyBy: Gerard’s mother, Kayan Myers“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” For anyone familiar with this verse from Jeremiah, you understand that it’s about surrendering to God’s will; learning to let go and have faith. This is exactly what my family’s story is all about, having faith in God’s greater plan for our son and for our family. For those reading this, I want to first apologize to you, as more than likely you too are on a journey of loss and grief. My heart, thoughts, and prayers are extended to you as you search for peace and comfort. I also want to forewarn you that this is a lengthy read. However, as much as I hope this article helps you in some way, I also hope you understand how, although, emotionally difficult this was to write, it was also extremely healing. So with that being said, here is our story, Gerard’s journey…“Well, here we go, ready or not,” is what we sat around saying and laughing as my husband, Adam, and I discussed the positive pregnancy test I had just taken. We were ecstatic. Others may have thought we were crazy since our first born was only 10-months-old at the time, but we couldn’t have been happier. We always hoped for a big family and having our kids close in age is what we had wanted. We both had great jobs, a house we called home, a healthy and happy little boy, with our second on the way. Life was great. Everything was going according to plan, our plan. Our first born, Corbin, was literally a textbook pregnancy and delivery. And as far as a baby goes, he was and remains about as healthy and as happy as a kid could get. We had truly been blessed and expected no different with our second. Throughout the first and second trimester with this second pregnancy everything had gone perfectly. I had no morning sickness, baby’s heartrate was always strong, my vitals were excellent, and our quad screen (a blood test to screen for Down Syndrome- Trisomy 21) had come back negative. I was eating all the right things, staying away from all the bad things, and then some, taking my prenatals, and really concentrating on staying healthy. Everything was right on track for what we expected to be another textbook pregnancy and delivery with a healthy and happy baby. Our perfect plan soon began to crumble following our 20-week, what we thought to be, a routine ultrasound. We knew the drill. The sonographer would take measurements of various things the doctor requested, listen to the heartbeat, and hopefully be able to tell us if Corbin would be getting a baby brother or sister. We were overjoyed to see our baby again on screen. Boy had she or he grown. Our excitement soon altered as the ultrasound seemed to be taking a rather unexpected turn. The sonographer was very quiet. She hardly spoke. We only knew the images that she was taking if we asked. And when she had to call in another lady for help, I really started to worry. She acted like she needed help to reposition the baby, so we could get a gender reveal, but I felt there was something else. Once the other sonographer entered the room, she began scanning all the same images, and taking lots of pictures of what we were told was the heart. When it was all said and done, we left not only not knowing our baby’s gender, but with a very unsettling feeling that we weren’t being told something. My husband and I both tried to play it off. Surely if something were wrong, they would have said something, right?The weekend came and went and Monday rolled around. It was a pretty typical day at work, until I was interrupted with a phone call from my OB. Again, I tried not to put much thought into it, but my fears were soon awakened as he informed me that our ultrasound from last week revealed some very concerning anomalies. My heart stopped beating. My body broke out into a sweat. No, he must have the wrong number; the wrong patient. Our baby is just fine. He’s wrong. The doctor called us into his office the following day to talk more in person. He revealed to us that the concerning defects (yes, as in more than one) involved the abdomen region, heart, and foot. He couldn’t go into a lot of detail, because the ultrasound performed was only 2D, which was pretty grainy. He referred us to Children’s Mercy in Kansas City, where we would have more scans and tests performed, and be able to meet with various specialists to have a better idea as to what we were dealing with. After the longest week and a half of our lives waiting for that appointment, and a zillion prayers and thousands of rosaries, we were finally headed to Kansas City. Adam and I remained hopeful, and perhaps even in denial, that nothing was wrong with our baby. It was all just a big misunderstanding. And even if something was wrong, we had a faith so strong in our Lord that he would surely heal OUR baby. We tried to remain hopeful. Our full day of appointments got started promptly at 8:00am. We met with various doctors from OB to cardiology, nurses, sonographers, geneticists and more. As we progressed through our appointments, the little hope we clung to began to wither away. Our nightmare became our reality the further along the day went. The anomalies and defects that were detected in our earlier ultrasound were made even more visible with the 3D/4D ultrasound and echocardiogram. The doctors confirmed that the baby had an omphalocele, which is an opening in the abdomen where the organs protrude outward, but contained within a membrane like a balloon. We were still unable to identify the baby’s gender, as the omphalocele was interfering with our view. As far as the heart, it was confirmed that our baby had hyploplastic left heart syndrome (HLHS), which means only half of the heart developed properly. The third chamber was extremely small and the fourth chamber was completely nonexistent. The cardiologist explained the severity of this syndrome, classifying it as one of the worst and most complicated known heart defects. She began explaining various options with us, including abortion. The maternal, emotional pregnant women in me wanted to leap across the table at her for even mentioning such an option. This was OUR child; a beautiful gift from God, regardless of any complications. I managed to calm myself, along with my husband’s squeezing hand under the table. We informed her that abortion was not an option, whatsoever, and that she needed to move on. She then discussed other medical options with us that still left us with extreme uncertainty and no guarantee, if even minimal, for survival. We wrapped our day up with one final meeting with the OB doctor to try and make sense of everything we had just heard and to map out a game plan. We had already asked so many questions throughout the day and taken in so much heartbreaking news that we were numb; physically and emotionally. We were so confused. Why? How did this happen? What did we do wrong? What now? The doctor continued to reassure us that there was nothing we could have done to cause any of this. He explained that with as many issues that we were witnessing, there was a possibility that a genetic abnormality with the baby could be the underlying factor for the defects. The genetic disorders that were characteristic to what we were dealing with were Trisomy 13 and Trisomy 18. Only a few words about that conversation stick out in my mind: “incompatible with life,” “lethal,” “severe retardation.” The only way to detect such a disorder would be with more testing. At this point, my body and mind couldn’t take any more. And besides, we just received terrible news about our unborn baby. Surely, there couldn’t be anything else? We opted out of the testing at that time, but said we’d consider it. We scheduled our follow-up appointment in a month and were on our way home. Our three-hour drive home was terrible. We cried some. We talked some. And we sat in silence a lot, both of us pondering all we had just taken in that day. We knew one thing for certain. Our time with our precious baby could not be taken for granted. The doctors had mentioned that there was a very high possibility the baby would pass in utero, given all of the complications. And if baby did survive, life would be extremely limited and restricted. We agreed that we needed to do as much as we could as a family during the remaining time of my pregnancy. The baby needed to be included in everything; not as just a baby in my belly, but as a part of our family. We also agreed that now was not the time to steer away from God and our faith. We needed Him more than ever. Fast forward a few weeks, after much consideration and prayer we decided to have a genetic blood test performed to screen for any form of trisomy. We figured if the test results screened positive, it would at least help us to be better prepared for the journey that lie ahead, and if negative, we could scratch that off our worry list and move forward. We opted for a screen called Harmony 21, which was completely non-invasive and 98% accurate. After waiting two weeks, we met with our local OB doctor to get the results. Well, if you haven’t already figured out the pattern to our story, I’ll help you out… it was more bad news. The test results showed a 98% positive screen for Trisomy 13, a genetic disorder that causes an extra third copy of chromosome 13, as opposed to the usual two, and can potentially affect every cell of the body, depending on the variation. Our hearts shattered. Again, another medical challenge that opened a whole new world of uncertainty and fear, and in reality changed everything we already knew. On a positive note, the first in a long time, the test was able to tell us the gender of our baby. We were having a boy. The tears began to fall. Finally, we could name our little one. From that moment on our baby had a name, Gerard, after Saint Gerard Majella, an 18th century lay brother, who is known as the patron saint of expectant mothers and difficult pregnancies. We had prayed to Saint Gerard every day of my pregnancy and asked for his intercession for protection and healing of our little one. Now we had the joy of naming our son after this saint so near and dear to our hearts. As soon as I got home from our appointment I started my research. I was given some medically sound sites to use for correct information. However, the internet is never a friendly tool for a desperate mother in search of information. All sorts of words popped up on my screen… “incompatible with life,” “1 in 10,000 births,” “physical abnormalities,” “severe intellectual disabilities” “demise within the first year;” the list went on and on. And all over again, my world began to crumble beneath me. I knew I had to stay strong though, for my family, myself, but most importantly, my precious son I was carrying. Often times, we would catch ourselves asking, “why.” Why us? Why our baby? But then our perspective began to change. Why not? Gerard was OUR son. God had chosen US as Gerard’s parents, and no matter what the circumstances, we wouldn’t have it any other way. God knew, not how badly Gerard needed us, but how badly we needed him. We embraced Gerard, our son, and all the challenges that lie ahead. He inspired us to be better people; to have more faith, compassion, and love. He inspired us to share his story. We wanted the world to know our son. It was initially difficult to share our vulnerability, but our friends and family were all quick to rally around us. They showered us with more support, love, and prayers than we could have ever imagined. We have been forever blessed by the warm hearts of our supporters, but more importantly, we have been blessed to know the lives that Gerard has and continues to inspire each day. Our appointments continued routinely at Children’s Mercy. We met with the same doctors, and had routine ultrasounds and echos to evaluate our son’s development. With time we grasped a better understanding of what Trisomy 13 was and what the road ahead had in store. We definitely gave our doctors a run for their money though. We did our research. Every appointment I came prepared with a binder full of new medical articles and research I’d found along with questions in hand. I surprised them on many occasions with the medical terms and procedures I had familiarized myself with. We connected with support groups and other families who had a child with trisomy. We listened to their stories and heard about their amazing children. We weren’t going to let trisomy and all the other complications, known and unknown define our son. We wanted him to be treated as Gerard, our son, not as the baby with Trisomy 13, and we wanted to know all of our options, in all medical scenarios. Our medical team helped us do just that, but they never sugar coated things for us, as we asked. They braced us for the harsh realities that lie ahead with every possibility. There was a very good chance our son would pass in utero. If Gerard did make it full-term, the likelihood of him passing during labor and delivery was also extremely high due to the condition of his heart. And statistically, if he was to be born alive, given the severity of all of his conditions, plus the unknowns, we should only expect to have maybe hours with him alive. They helped us prepare as best they could, and remained respectful to all of our wishes and demands that we had, even despite the “statistics.” We wanted what was best for OUR son, not what had worked or not worked in the past with others. Our medical team was very accommodating and always made us feel that Gerard’s life was valuable to them. As much as we tried to prepare ourselves and figure everything out, we also had to remind ourselves that it was in God’s hands, and that every day, every hour we had with him was truly a blessing. In between all the medical appointments we took full advantage of embracing our time together as a family. We included baby Gerard in everything we did, even though he was still in my womb. In the fall, we took our boys to their first pumpkin patch. On Halloween we dressed them both up. Corbin was a golfer, and Gerard was a pumpkin (I wore an orange pumpkin shirt). We took family photos and sent out Christmas cards, including Gerard in the signature. We went on a train ride and experienced all sorts of other neat adventures together. We gave Gerard and Corbin matching stockings to hang by the Christmas tree, to go with the presents Santa left both the boys Christmas morning. We went to Mass every Sunday as a family. We prayed together. We had our priest bless Gerard and myself as often as he could. Outside of our ultrasounds at the hospital, we had others done for fun, so we could see him more often. We even invited all of Gerard’s grandparents and great grandparents to meet him on screen at one of our ‘fun’ appointments. We read bedtime stories to the boys each night, and encouraged big bother to love on Gerard. Corbin always acknowledged his baby brother, and that Gerard was in mommy’s tummy. He would often give my belly kisses and share toys with Gerard (which was rather comical). We created as many memories with Gerard as we could in just a short time.Each day that we had with Gerard was an absolute blessing. Despite all of his struggles, he continued to impress the doctors and sonographers with his strength. Although he was expected to be small, he was still growing well (and so was mommy) . The plan was at 38 weeks we would relocate to Kansas City to be closer to the hospital for whenever Gerard decided to make his debut. Well, time sure did fly and there we were, at week 38. Thankfully, we had family that lived close by and was gracious enough to let us stay with them, as opposed to a hotel or Ronald McDonald House. With our anxious minds and the busy life of a toddler, having a place to call home and family to surround us was exactly what we needed. While we nervously waited, we too kept ourselves busy, enjoying many of the Kansas City family fun activities. Well, at 39 weeks and 2 days, the time had finally come. After spending a night in the hospital and then being sent home, Gerard finally decided he was ready to make his debut. My body was so torn. If I could have just kept him in there forever, I would have, to avoid everything he had to endure once he was out. But I was also so desperately ready to meet our miracle baby, and ready or not it was time. It was about 9:30 p.m., and we were on our way to the hospital. All of our family was headed that way too. A birth plan had been discussed with our doctors, both in preparation if Gerard was born alive or born still. A vaginal delivery was the initial plan, but an emergency C-Section was agreed, if at any time our son showed signs of distress, which according to the doctors was very likely. They didn’t expect his heart to hold up during the stress of labor and delivery. This is something we had prayed for, for so many months, that Gerard would have an uncomplicated labor and delivery, and that we could have the opportunity to meet him alive. We continued to pray for our little boy. I clinched my rosary so tight, the beads were almost permanently imbedded in my hand. God heard and answered our prayers. Gerard labored like a champ, and his heart remained stable throughout. He never showed any signs of distress and made great progress all on his own. Our beautiful son, Gerard Adam Myers, was born, January 28, 2015 at 2:37a.m. and weighed 6 pounds 6 ounces; 19.5 inches long (much bigger than the doctors had expected). He was beautiful, from the glimpse I got, but he wasn’t crying. Adam frantically cut his cord, and then Gerard was swooped up by the neonatologist and a team of nurses. I reassured my husband that I was fine, and to go be with our son; I didn’t want him alone, ever. As the OB was taking care of me, I lied there in panic. Why had I not heard my little boy cry? Was he breathing? Was he okay? Then finally, in the next room, I heard him let out the loudest, most beautiful cry. It was music to my ears. “That’s your baby,” the nurse whispered in my ear. Our son was ALIVE; praise God!After a few minutes, Adam entered the room holding our newborn son, with tears streaming down his face. “He’s beautiful, Kayan. He’s perfect,” he said, as he placed Gerard in my arms. The neonatologist informed me that Gerard was stable and doing well for now. We unswaddled Gerard and placed him on my chest for skin to skin. He was absolutely breathtaking. He had six fingers on each hand and six toes on each foot, extra digits to kiss and hold . He had swirls of light brown hair and matching birthmarks like his big brother. He had the most beautiful nose and chubby, kissable cheeks. He was perfect. In that moment, the entire world stood still. All of the pain, suffering, and anxiety we’d been through over the previous months was made worth it, even if just for that moment. Next, I was able to witness the most amazing sight. We didn’t know how much time we had with Gerard and getting him baptized was extremely important. A priest was notified and on his way, but again time was of the essence. My loving, and selfless husband baptized our son while I held him tight against my body. “Gerard, I baptize you in the name of the Father, and of the Son, and of the Holy Spirit,” he said as he traced a cross on Gerard’s forehead while anointing him with Holy Water. He was now spiritually perfect. We spent the next hour or so holding our son and enjoying his presence; smelling him, kissing him, and staring at him. We were ready for our family to meet Gerard, but first we needed Corbin to meet his baby brother. My mom brought him in the room and instantly, sleepy eyed and all, Corbin perked up, acknowledged his little brother in Daddy’s arms, said, “Gee-ar” and gave him the biggest kiss. I couldn’t have envisioned their first meeting to be any more perfect. We were told that Father Denis, a local priest, had arrived. We welcomed him, our parents, and siblings up to the room to meet Gerard in person for the first time and witness his formal baptism. Father blessed Gerard with a sacramental oil, rubbing it on his head. The smell is forever embedded in his hat he was wearing, and in my nose. It is the scent I’ll always remember my son by. Everyone, teary eyed and all, surrounded him in much love and prayer. We were completely touched by the graces God bestowed upon us in that special moment. Gerard was truly a miraculous blessing to us all. Over the course of the next few days, we were able to able to witness all of God’s glory work through our son and his amazing strength. We had prayed for time with our son, and although no amount of time would have ever been enough, God heard and answered our prayers. Doctors only predicted that we would get minutes to hours with him, but we had almost four miraculous days. During our time with Gerard we continued to witness miracles unfold before our eyes. We got to witness him being baptized, and as a family of faith, that was such an amazing experience for us to share together. He was also able to receive the sacrament of confirmation given by our home town priest, Father Borkenhagen, who made the journey to meet our special little boy and give his blessings. We got to experience so many things with Gerard that we never dreamed possible. I was able to breastfeed him, which completely surprised many, including the medical staff. We were told that due to his trisomy, Gerard may have complications sucking and may not even have the sensors to prompt him he was hungry. Through God’s grace, a mother’s intuition, and the help of a lactation consultant, I was able to nurse my son, while his dad was able to feed him a few bottles. We were able to change his diapers, even the poopy ones. We were able to bathe him and dress him. We were able to read our favorite stories to Gerard. We prayed with him and sang to him. We took naps together (well we didn’t do much sleeping, but he sure did). Corbin was able to show Gerard his toys and make an attempt to share with his little brother. We made family hand and footprints together and molds of us holding hands. Gerard was constantly held, snuggled, and kissed. He was always in the embrace of someone, not only by us but by his grandparents, great grandparents, aunts, uncles, cousins, and family friends, all who made the long trip just to meet him, if even only for a few minutes. Our days with Gerard were full of so much love and joy; more than many can say they’ve ever experienced in a lifetime. As they say though, all good things must come to an end, and that was our reality. We knew our end would be approaching, as Gerard’s heart would soon fail him. Late Saturday evening, on January 31st, 2015, Gerard slipped peacefully away in the arms of his dad and I. No amount of physical, emotional, or spiritual preparation for that moment could have prevented the immense pain we experienced as our son took his last breath in our arms. In that exact moment a piece of us died, too. All of our hopes and dreams we had for Gerard on this earth were forever lost. We would never witness him walk or ride a bike. Adam would never get to coach his little league team, and I would never get to experience our mother-son dance at his wedding. I sobbed. I cried. I screamed. I gasped for air. And all the original questions started in all over again. Why our son? Why us? Within a matter of minutes, in that same moment of despair, a feeling of peace and comfort filled the room as we held the lifeless body of our son in our arms. We moved to the hospital window to see what would have been a pitch black winter sky filled with the most beautiful and vibrant orange glow. The ground was a pristine white blanket as the snow beautifully fell. It was our sign from Gerard, our peace of mind that he had reached the gates of heaven and was now forever with the Lord. He would never experience pain or suffering, and all he ever knew on this earth was immense love. He was at peace. And, we would see him again, someday.I know how cliché that last sentence must sound, as for any who have experienced loss have heard it yourself a time or two, I’m sure. And, by no means does this statement take away the pain and emptiness of losing a child. However, this is the statement that gets me through my days. This is the belief that I hold on to each and every day that shakes me out of my despair and keeps my feet underneath me.I remember distinctly a few words from Father Borkenhagen’s homily at Gerard’s funeral (which that in itself could be a whole other book, on the backwardness of planning your child’s funeral and the indescribable pain and numbness that goes along with it, but that’s for another day). Father he pointed out that he had chosen to wear a white vestment, which is not typical for a funeral. He did this because as a child of God, we could rest assured knowing that our baby was in heaven with Jesus. And as parents, Adam and I are unique, because, of course, the fact that we hold the forever pains of mourning our lost child, but we also had the beautiful experience of parenting a SAINT, an angel now in heaven. As Gerard’s mother I was able to carry in my womb for 9 months our beautiful little angel. I felt his kicks and hiccups. He felt my heartbeat from within. And once born, I was able to nourish and feed our little saint. Adam was able to baptize our saint and hold him closely in his arms. Corbin was able to soothe his little brother by giving him his binky, and then also as big brothers do, quickly stole his blanket from him when he realized we had given Gerard Corbin’s blanket. Gerard’s life on earth was absolutely beautiful and forever touched the lives of many, but his journey isn’t over. His real journey only just began, the minute he left our arms. And I know this to be true, because of my beliefs, but more so, because I feel his presence every day. Gerard pushes me to keep going. He motivates me in all that I do; to be a better person, to do good in this world, to show kindness, compassion, forgiveness, love, and above all to faithfully serve God. He reminds me to appreciate all the blessings that I have: my beautiful boys, my loving and selfless husband, my health, faith, family and friends. Nothing and no one is guaranteed tomorrow, my family knows that too well. One day, it will be my turn. On that day, I plan to see my son again in heaven, but in the meantime, Gerard keeps me in check to make sure that I get there. For those of you on this journey of grief and loss, again, my heart and soul ache for you. I wish I had magical words to take away all of your pain and suffering, trust me I do. And I’m afraid, although I’m pretty new to this journey myself, that it is a never ending one. Yes, with time, somedays become easier than others, but no, time doesn’t heal all wounds. That, I’ve learned is a false cliché. And people, who don’t understand will try to tell you things like this, that really might even just upset you more. One thing I’ve learned is that most generally, when people say things they think are comforting, that really aren’t, usually their intentions are coming from a good place, they just don’t have the words. They can’t fathom what you are going through, no one can. Most days I can barely wrap my head around these roller coaster emotions I experience, so I shouldn’t expect someone else to. But just know, you aren’t alone. Chasnie has provided me a wonderful platform to share our story, and such a selfless act it was. And so, again, I apologize for making this such a long read, but just as any parent likes to talk about their children, the same is no different for me. However, while I can fill my family and friends in with the latest and greatest comical Corbin stories, all of I have of Gerard is our memories. So, I share his story, which gives me much comfort. Nothing means more to me when people remember our Gerard and speak his name. I love when people ask about him. Sure, I may tear up when talking about him, but they are happy tears; tears of joy knowing that he has been remembered. My advice for any you on this similar journey is to share your story. Whether it’s fertility issues, or the loss of a beautiful child through miscarriage, still birth, or infant loss, I encourage you to speak up. It’s always uncomfortable at first, because of the vulnerability and emotions you may feel, but don’t let that stop you. You’d be surprised of the amount of women or couples that can relate in some fashion, and it’s your story that may just help them. And if it’s a child you lost, don’t be hesitant to speak their name and remind the world of the angel in heaven that holds a piece of your heart forever. Yes, your angel in heaven. For it was Jesus that said “Let the children come to me, and do not prevent them; for the kingdom of heaven belongs to such as these.” Matthew 19:14. I hope you find peace and comfort in these words and believe that someday, you too, will have the opportunity to either meet your little angel for the first time or see him or her again. God bless you, and your family on this continued journey of life full of grief, struggles, joys, love, and happiness. May you find peace and comfort. In loving memory of Gerard. ................
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