Just four years ago, on June 25th, our family’s life was changed forever. Our 26 year old daughter, Jamilyn Renee’, was killed in a car accident just a day after returning from a trip to Haiti. Nothing can prepare a parent for the loss of a child or how to navigate life as you attempt to pick up the pieces and make sense of the new normal you find yourself in.
Although we are brokenhearted, we have been overwhelmed with peace and comfort that can only comes from our Father. We know without a doubt, that she went from this life to the presence of our Heavenly Father in a matter of seconds. The Celebration of Life Service ended up being a life giving service that celebrated Jamie’s life and her devotion to the Lord. Because of a post she had written on Facebook while in Israel on her last birthday, November 21, 2014, a theme of saying Yes. to whatever God asks became a central theme at her service and continues to today. As we continue to walk this road of grief and loss, we have met many others that have experienced deep loss as well. Our hope is to point them to the source of where true comfort comes from.
When my son, Nick, was diagnosed with cancer just 3 weeks before his 15th birthday, he needed to have a double hickman central line surgically implanted into a large vein in the middle of his chest.
The line was partially under the skin of Nick’s chest but about 12 inches of it hung on the outside. Three times a day, every single day, I gave him antibiotics through that line. Every other day I had to take off all the bandages, clean the skin around the line, and replace the old bandages with fresh, clean ones. The exposed part of the line was then wound up and taped to Nick’s chest under a neat little square of bandage.
In the months to come Nick would also receive blood, platelets, chemotherapy, and fluids through that central line. It is also the place where he would have blood drawn about every other day. The central line prevented him from having to be stuck by needles numerous times a day for months on end.
After 6 months, when Nick had finished treatment and was in remission, the central line was pulled…yes, pulled out…and we were sent home.
Nick was doing well. We were so happy to be moving back to our home in Ohio after living for so long at St. Jude Children’s Research Hospital in Memphis, Tennessee where he was treated.
THE ONLY TATTOOS I HAVE ARE SCARS
For 2 ½ months in the summer of 2006, while he was in remission and before he relapsed, Nick enjoyed spending time with his brother and sister and his friends. One day, during those months, he was invited to go swimming. I sat by the side of the pool that day and watched as Nick dived, swam, and played around in the pool with his shirt on.
A bit later I asked him privately why he didn’t take his shirt off to swim. He told me that he felt weird because of the big scar right in the center of his chest. One of our St. Jude friends recently talked about her central line scar and described it, very accurately, as looking like a bullet wound to the chest.
I told Nick that his scar was a badge of honor that marked what he had just been through and that he should never be embarrassed about that. He didn’t respond but I assume that he was thinking about what I had said because about 5 minutes later he stood up, flung off his shirt, and ran off to cannonball into the pool, making quite a splash!
THE WOUND IS WHERE THE LIGHT SHINES THROUGH
After Nick died, I wanted to know everything I could about where he is, what he’s doing, what it’s like there, what he’s like. Every good parent wants to know these things about their living children, so why would I stop wondering about these things after my son left for Heaven? My questions sent me on a journey that I am so grateful for because I now live with an eternal perspective that I never would have discovered otherwise.
One of the things that I wondered was if Nick will still have his scar when I see him again. The automatic, churchy answer is to say “No one will have scars because they have been completely healed.” That’s a great thought, but is it the truth?
As I searched for the real answer, I found this clue…
In the book of John, there is this great story that took place after Jesus died and then was resurrected. There was a period of 40 days when He walked around showing Himself to people so that there would be eyewitness accounts that He was still alive.
One day Jesus visited His friends and they were so excited about it that they ran to tell others.
“We have seen the Lord!”
One man, named Thomas, didn’t believe it because he had not seen Jesus with his own eyes. He told his friends…
“Unless I see the nail marks in his hands and put my finger where the nails were, and put my hand into his side, I will not believe.”
He was asking to see Jesus’ scars because they were the identifying marks that made Jesus who He is.
A week later, Jesus showed up again. This time Thomas was in the room. Jesus walked over and said to Thomas, “Put your finger here; see my hands. Reach out your hand and put it into my side. Stop doubting and believe.”
Jesus still has scars!
This was a revolutionary thought to me. Will we carry the significant scars from this life into the next? If so, why?
No one chooses to have scars. They are usually the result of an accident or a surgery. But think about it…each scar is a part of what make you uniquely who you are. Each scar has its own story to tell. But while the story usually has to do with illness or injury it is possible to use our scars to make a better story.
I am confident that when I see Nick again we will look at the scar in the middle of his chest and tell stories of our time in Memphis together. We will marvel at how that scar prepared the way for a shift in the culture at a very well known hospital and set it on a course that would make it the leader in reaching bereaved parents around the globe with support and hope. That scar represents the beginning of teaching doctors, nurses, psychosocial team members and other support staff around the world how to better help families when they get bad news, when a child is at the end of life, and beyond.
There is a great line from a song that my son, Josh, shared with me during a time when I felt so overburdened by the weight of sickness and death.
“Your scars shine like dark stars. Yeah, your wounds are where the light shines through.”
Your scars are different than mine. Different than Nick’s. Some are visible. Some are hidden on the inside. But each carries a story. Let the light shine through your visible and invisible scars. Find a greater story to live because of them.
My name is Karinne Greve. My husband Landon and I live in Dillon, Colorado and have been married for six years. We have three boys, Gunnar 3.5, Griffin 2, and Grady, who is now with the Lord. I am grateful for this opportunity to share our story with this amazing Hope community because we appreciate any chance to talk about our sweet Grady Jake and bring honor to his short life. Each of our stories is unique, and yours’ have deeply impacted me. Even though the common thread is loss, pain, and sorrow, we have discovered that amid the sadness and grief, we also find hope. When I read your stories, I experience your emotions as my own. As parents with children in heaven, our similar journeys provide me a safe place to cry, grieve, and experience all that is associated with our aching loss. Every story has touched my heart, and I realize it takes courage to express our pain with words. I applaud your bravery and willingness to share. Here is our story. Thank you for reading it.
Our story began in September 2016 when we found out we were pregnant with our secondchild. We went to our first doctor’s appointment in anticipation of seeing and hearing our baby’s heartbeat but was surprised to find out there were two! It was early in the pregnancy, so we were instructed to return in two weeks to make sure things were progressing normally. That next visit, the ultrasound screen confirmed what we had expected: identical twins! Completely surprised, I was flooded with anxiety as I thought about what life would look like with three small children so close in age. At the time our first child was 12 months old and I was breastfeeding once a day and still trying to adjust to being a new mom. After the initial shock and stark reality of seeing two babies on the screen, my feelings of joy, excitement, and wonder of what identical twins would be like finally arrived! We were full of excitement as we anticipated this new season in our lives.
In January 2017, our 20-week ultrasound showed both boys doing well; both happy, growing, and healthy. A twin pregnancy automatically places the mom in a “high risk” category, so as a precaution we had our first appointment with a high-risk doctor the following week. We arrived excited to see our babies again and observe how much they had grown in two weeks; we had no thoughts of worry or concern especially since our 20-week ultrasound was so positive. Little did we know; our lives were about to take a dark turn. The ultrasound tech began the scan on our boys and then abruptly left the room. Looking at the picture, I never suspected a thing and only saw my sweet Grady Jake looking back at me with his hands pulled close to his face. I never even considered that something might be wrong. Looking back at those pictures I now see that something was wrong, but my mother’s love for my child saw straight past it. The ultrasound tech left and returned twice, and at that point, I began to feel concerned.
We completed the scan and were ushered back to the doctor’s office, where we received the grim news. The scan had shown that our sweet Grady Jake now exhibited severe fetal anomalies that included clubbed feet and hands. The preliminary diagnosis was arthrogryposis, but the physician also mentioned the possibility of Trisomy 18 as well. There were no apparent signs that Griffin was also affected, but concerns were high since they were identical twins.
Hearing this news made my heart feel like it was exploding into a million pieces. Every parent’s worst nightmare was suddenly our stark reality. Not only was something wrong with one of our babies, but now both of their lives were in question. As identical twins, the boys shared placental blood flow which put both at risk. Tears immediately poured down my face as I began trying to process this overwhelming nightmare of thoughts and concerns for my unborn children. This devastating news started us on one of the most demanding and challenging journeys of our life.
After being blindsided, I was overwhelmed by agonizing guilt. Guilt takes many forms in our story, and this was only the first glimpse of what would soon emerge regularly. Almost immediately, my thoughts were filled with questions like, “What did I do to cause this?” “It must have been my fault that my son’s hands and feet developed like this.” I combatted those thoughts with logical information like “I’m 27 years old and have never tried drugs or exposed my babies to anything harmful; I didn’t and don’t drink. I took prenatal vitamins and did everything possible to keep my babies healthy.” Even with all the logic, I still questioned myself and wondered why. “Why was this happening to us?” The agonizing weight of guilt was unbearable.
The high-risk doctor put us on the schedule at Children’s Hospital in Denver for a full day of testing to determine what exactly was going on with our boys. We had to wait two grueling weeks for the test results to come in–I couldn’t eat, couldn’t sleep, could hardly take a breath. I had thoughts of not wanting to live if I was going to lose both of my babies. I repeatedly called the hospital to see if we could schedule an earlier visit in hopes of getting definite answers so that this nightmare would end, and the feelings could go away. I just wanted my babies to be ok.
The two brutal weeks passed, and we entered the hospital for another round of tests. MRI, heart echoes, and more laborious ultrasounds. When the tests were done, we were again escorted into a room, but this time it was a conference room filled with fifteen people–doctors, nurses, social workers, and some of the best surgeons in the country. Terrified out of my mind, I spotted two empty chairs in the middle of the room waiting for my husband and me. Trying to hold back tears, and bracing myself for the outcome, we walked in and sat down, while everyone in the room awkwardly stared at us. I avoided all eye contact and silently prayed that somehow God would heal our babies so that everything could return to normal and silence this cruel nightmare. I prayed over and over, “Please God, don’t let us have to make decisions that involve the fate of our children. Please save our babies…if you need them back; please take them with your hands, not ours.”
The doctors began to talk and show us images of our little Grady Jake. I looked up, and there he was. He was perfect. Still growing, still thriving as a twin, but his hands and feet weren’t typical. The doctors explained to us that the tests had come back normal, with no signs of stroke, all organs functional, all ultrasounds and heart echoes, healthy, and no indications of Trisomy 18 or any other genetic condition. Essentially, the experts were saying that they had no idea what was wrong with our son and they had never seen anything like this before. The doctors warned that even though his organs appeared to be functioning normally, ultrasounds are unable to determine if they are fully functioning. The doctors also suspected that his clubbed feet and hands most likely indicated some mental dysfunction as well. Trying to keep from bursting into tears and using every inch of my body and mind to hold myself together, I sat unsure of what all this meant. The doctors then began to explain the most complex and devastating aspect of our unfolding story. They said that our son Grady was sick; they just weren’t sure the extent of his illness. They also said that Griffin might also be sick because they were identical twins. They were unable to fully tell without an amniocentesis, which was far too risky; so we would have to wait till they were born.
We then received more devastating news; there was a high likelihood that our son Grady would pass away in utero. The physician said that if he made it to birth, he would probably pass away shortly after; if he did survive, he would most likely suffer severe and challenging handicaps throughout his life. We then discovered that identical twins uniquely share 100% blood flow, so if Grady passed away, it would cause a severe drop in Griffin’s blood pressure, which would result in either Griffin’s death or possible mental handicapping.
Our minds were overwhelmed with information and data and words we had never heard before. We sat stunned and shaken in the middle of all that confusion, as the physicians presented us with three possible scenarios.
The first option was to continue with the pregnancy and let it run the natural course. Things would be allowed to progress organically, and we would stay consistent with routine check-ups. If Grady passed away in utero, we would run the risk of also losing Griffin or him being disabled the rest of his life. Depending on how far I made it, and if both boys survived, one of the following would be a likely outcome: Grady would experience serious physical disabilities and possibly severe mental disabilities; Griffin could be entirely healthy, or more likely suffer mental effects from Grady’s genetic inclination. Both could be stillborn; or both born prematurely, potentially causing one or both to have cerebral palsy.
The second option included medical intervention. Generally, in this type of situation, they have the technology to split the blood flow between the babies which creates a separate outcome for each child individually. In our case, this wasn’t possible due to how close the cord insertions were. The only other option in this scenario was to perform a procedure called RFA (Radio Frequency Ablation). This procedure completely stops blood flow to Grady to save Griffin from the effects of the blood pressure surge. They assured us that the procedure was 80% effective and if all went well, I would most likely make it to 36 weeks, giving Griffin the best possible chance for survival. This procedure came with a significant number of potential risks, including infection, premature delivery at 23 weeks (due to ruptured membranes), Griffin’s reduced chances for survival, and an increased chance that Griffin would suffer the ill effects mentally,
Our final option was to be admitted to the hospital at 24 weeks for the duration of my pregnancy to monitor our sons till birth. If anything looked like it was taking a downturn, they would endeavor to respond quickly enough to save Griffin. The physician then added the caveat that this option carried the risk and possibility of a delayed response time that still put Griffin’s life and condition at risk, along with the likelihood of early labor and delivery, which lowered both boys chance for survival outside the womb and increased the likelihood of cerebral palsy.
We left the hospital that day overcome with emotion and having no idea what decision to make. We continued to pray like we have never prayed before– prayed for our babies to be healed. Prayed that if God were going to take our babies, he would do it with his hands, not ours. Prayed that if we were going to have to make this choice, God would give us some solid direction by revealing regression and decline in Grady, so that we could absolutely know that his hand was in this heartbreaking decision. My husband and I are strong Christians, so we would never consider an option that required an active choice on our part. Never would I have thought that God would even remotely put us in this kind of situation. We knew God was big and that he was in control and firmly believed that God wouldn’t give us something we couldn’t handle. But wow, we were completely and utterly overwhelmed.
We felt paralyzed at a crossroad, unable to move. The brutal reality of having to select one child over the other consumed my anguished thoughts. It felt like our children were standing on opposite sides of a cliff; one was falling, and the other was trying to save him. If we reached to help pull them up, we knew there was a good chance of saving one but only a minuscule chance of saving the other. We also knew that our “help” could potentially cause an irreparable loss. Ultimately, we understood the reality that if we didn’t do something, we’d most likely lose them both.
Our hearts ached, and all we could do was cry and pray. We made an appointment for the following week and made space for God to answer and act. We fervently hoped he would respond in an apparent and divine way, but we were also acutely aware that God sometimes answers with silence. Nevertheless, we secretly dared to hope and pray.
During that week, we began to pray that if we were to intervene medically, there would be measurable regression in Grady’s condition by our next appointment. We asked God to show us that Grady was headed to heaven. If we weren’t supposed to intervene, we asked God to have the ultrasound indicate that he was thriving, rather than regressing. Our prayers became specific and intentional—we had to hear from heaven to make this agonizing decision.
A week passed. At the follow-up appointment, the scan revealed that Grady’s condition had deteriorated and he was experiencing backflow to the placenta along with an abnormal Doppler reading in his liver. Both confirming indications that his condition was grave and that his passing was imminent. Tears poured from my soul and streamed down my face. God had spoken, and we were compelled to listen. He had heard our prayers and confirmed the direction we were to take. His timing is always perfect.
We returned home for two sad and mournful days. We arrived at the hospital on February 16th, 2017, which would forever be the last day that I would carry Grady’s spirit in my body.
The hardest day of my entire life.
We were admitted early that morning and prepped for the procedure. The ultrasound tech did one last scan that would be the final moments we would ever see Grady alive on this earth.
The tech told us that Grady was in an abnormal position for a baby in utero, which confirmed my belief that he would have passed away soon after, if not that day, and was just holding on to save his brother. Just one of the many confirmations that we received from God. The decision was made. We would have the procedure.
On the way to the operating room, I experienced a panic attack.
I couldn’t breathe–I couldn’t move–all I wanted to do was back out and go home. I had never had a panic attack before, and I was terrified. I had no idea what was happening as I was overcome by every possible emotion I have ever experienced at once. Thoughts of what was about to occur overwhelmed me. The attack was severe, and I felt satan looming in the background trying to attack at my weakest moment. God’s presence and grace came through and gave me the strength to walk into that operating room. I left my husband, who was unable to go back with me and took the biggest step of faith in my entire life. I would not have been able to walk back into that operating room had God not been right by my side. I was only lightly sedated for Griffin’s safety, and aware of everything that occurred throughout the procedure. Each minute detail of that hour and that entire day replays in my mind repeatedly and often.
After the procedure, they wheeled me back to our room where I saw my husband again. The ultrasound tech was with us monitoring Griffin and said how smoothly everything went. The smoothest she had ever seen. Again, another confirmation from God.
I laid there and wept. The realization that I would not get to meet Grady till the day I see him in heaven was throbbing and raw. All I had were his ultrasound pictures (which I regret not getting more), his movements in my belly, and now only his lifeless body inside of me. His spirit was now with the Lord.
We were released later that day, earlier than expected. Another confirmation from God because things were going so well. I was on modified bed rest for the duration of the pregnancy. That precaution created another painful, guilt-inducing point in our story–I couldn’t pick up our oldest son, Gunnar or care for him the way I felt a mother should. My relationship with him languished and struggled as I physically and mentally could not be the mother I wanted to be at the time.
Days, weeks, and three months passed. Doctors’ appointments and stress tests every week to monitor Griffin’s progress and condition made for a long, arduous journey…We continued to be hopeful that Griffin would have every possible opportunity to thrive and be healthy. Always hoping and praying that we had made the right decision.
At 35 weeks 5 days, I went into labor and delivered the boys on May 22, 2017, at 9:01 p.m. We celebrated Griffin’s entrance into the world and then given the opporuntiy to see Grady and spend time with him. Griffin was born a healthy 6.2 oz. and 19 in. long with no signs of any health or genetic issues… Praise Jesus! A joyful and difficult day for us. We were so grateful that God allowed us to have Griffin.
Despite the mountain of relief that Griffin was alive and healthy, my heart still ached and cried that I no longer had any physical connection with Grady. I had allowed myself to hope and imagine that when Griffin was born, I would finally be able to breathe normally again–and that the stress and multitude of emotions would subside. That did not happen, and the tension between gratitude and searing loss continues to battle in my soul, every day.
Grief is my daily companion, and no doubt will continue to be until the day I see Grady in heaven.
We think about Grady every single day and have a tangible reminder of him when we look at Griffin. God was sweet to make them identical twins so that we could get a glimpse of what Grady looks like and who he would have been.
Grady’s brother, Griffin will be two next month. He is a happy, healthy, thriving toddler, developing normally, and meeting all his milestones. We watch him running, walking, laughing, and teasing his older brother and realize what a gift he is to our family—such a special soul. He is our affirmation and daily evidence that we made the best possible decision for both our sons.
When we look back and replay all the options and possible outcomes, we realize now that guilt would have been a factor in every single one of them. Our family is still learning how to process and face grief and guilt—two steps forward, three back some days. We intentionally seek wisdom, people, and connection to keep guilt at bay in order to move forward, all while being intentional about carrying Grady with us. In reality and through all of this, one thing that I have learned about guilt is that you can’t avoid it, you can’t run from it, and you can’t hide from it. In some ways and if I’m honest, I almost feel that if I don’t feel guilty, I am not honoring my son…That I am forgetting about him. I know this is a lie from Satan and understand that guilt is a paralyzing, fear inducing monster that he uses repeatedly to keep us stuck and lifeless. We are intentional about turning our hearts toward God and seeing the pain in our journey as a result of living in a broken, disconnected, and fallen world. We know that God is always redeeming these painful and broken places and making good growth out of them, despite how difficult it is to see at times and in those painful seasons. We choose to honor God and Grady by honoring our story and being authentic with our pain.
As we continue this journey, we are learning to navigate our story with our boys; especially about how to guide Griffin through his story. The bond that identical twins share is uniquely special and one that will be implicitly present in him throughout his life. Doctors tell us that he will most likley sense a part of him missing and will likely express these feelings through different outlets throughout his childhood. For example, he may draw two of the same objects, experience an imaginary friend, or include an “extra person” in pictures before ever being told that he has a brother. With this in mind, we are preparing for how best to guide Griffin in this tender process. We openly speak of Grady and want him to be a normal part of our family just like our sons, Gunnar and Griffin. We take each day one at a time and through counseling and wisdom from our family, friends, and mentors, we hope to guide our sons toward a healthy, fulfilling, and redemptive life empowered by God. Fueled by his grace and inspired by their brother Grady. We hope Griffin finds purpose and joy in his life and that he never feels unworthy or guilty for the life he was given.
God ultimately gets the glory in our story, and I can genuinely say that I am honored that God felt he could entrust us with this journey, with his children, and with this agonizing and painful decision. I wasn’t able to see this prespective until we met our pastor for coffee not long after the boys were born. During our conversation, he told us that when he heard our story, he was deeply moved and that he wanted to get to know the people that God entrusted with such a momentous decision. This really moved me and thankfully altered my perspective of our story. It really made me ponder the meaning and reason for our story. In many ways, our story resembles that of God giving his son Jesus for our life. Jesus died for our sins so that we could live in eternity with him and have connection with him now. Grady’s life sweetly resembles Jesus as he sacrificed his life so that his brother could live. I love all three of my children so very much. People may judge, and thoughts will loom, but I know in my heart that we made the best decision we could have possibly made.
Hear Cammy share the story of losing her son Lewis… and the miracle God provided her in her darkest hour.
This vine…I bought it last year in early Spring with high hopes for it to become a plush and bountiful thing of beauty. Fresh blooms after a long winter always refresh my soul, and I just knew that this would bless me for years to come as it continued to grow and fill out my trellis. Unfortunately, it wasn’t long before it turned brown and died…there was seemingly no hope. I tried several things to bring it back to life but to no avail, so I gave up. But, last week a miracle occurred…from the brown crunchy vines left behind over the winter, sprouted NEW LIFE! A tiny bit came from the soil below, but the greenest came from the very top of the vine! Those darn brown vines still had something left in them after all and produced not one, but five big blooms and a sixth on the way!!! I went out and stared at it…I found it fascinating that it was the old seemingly dead vine that sprouted those giant purple blossoms. You would think that only by starting over, and starting fresh, you would see such rich color and life…but no. It was the vine that stayed the longest, endured the most, lived, suffered, and died…and now it comes back to life bringing with it such beauty and hope. Sound familiar?
You see…God is not done with me. He is not done with any of us! Tears well up in my eyes because this vine represents so much of Gods love and faithfulness in my life this past year! I too was once planted in rich soil, loved, and showered with living water…the water of life. I grew bountiful leaves and flowers from the “true vine” as Jesus describes so beautifully in John 15. However, it wasn’t long before I found myself brown, dry and crippled in the loss of my son. The leaves and flowers gone…and all that was left was this thick brown vine clinging to the trellis. There seemed as though there was nothing left…and that life was to be restored only by ripping out the old and growing brand new. Daunting…the idea of completely starting over. I have walked this past year with only hope in my heart…trusting that in time my soul and the very essence of me would bloom again…and that all of me was not lost in the wake of losing my boy. That becoming whole again wouldn’t mean starting over and losing everything that made me who I am in the process. Would my laughter come back? Would there be joy? Would I ever recover from this? Will there come a day that I feel the peace that comes with knowing God is at work even still? Isaiah 43:18-19 speaks of NEW THINGS and that God is making a way! But what was the way for me? Where would these new things come from? When will I come into my life again and produce plush green leaves and beautiful flowers…when will I produce the fruit that is promised to come?
When I look at this vine on my trellis, I can see what God is doing. I am reminded that God is capable of restoration no matter how far gone we are. No matter how dead we think we are…no matter how broken and crippled we are “after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you.” (1 Peter 5:10)
My first picture with Lewis.
Each day I am reminded of my Lewis…and thoughts of the loss of him are slowly replaced with thoughts of the gift of him. I see his baseball hats that float around the house and smile thinking about that curly hair that used to pour out from underneath them. I look upon his pictures around my house and remember that sweet smile and I glance over at his ashes on my dresser only to be thankful for ever knowing him much less being the one chosen to bring him into this world. Now I look upon this vine and I see what God is showing me, “Arise, shine, for your light has come, and the glory of the Lord has risen upon you.” Isaiah 60:1…and a few verses later it even says that I will be “radiant” and my “heart will throb and swell with joy.” Bless it…I feel you God…I know you are working miracles in me.
To me, these blossoms represent my family…me and my boys…and the bud on the left side is for the one on the way…our sweet Thatcher growing inside of me. God is this vine…we are the branches. As John 15 says…”If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing.” My favorite thing in this picture below is that this beautiful new growth and life comes from the vine that I thought was once dead. It grows bigger and faster than it did the year before. I didn’t have to rip out the old to grow the new…I just needed to wait upon the Lord…and “He shall renew their strength; they shall soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” God keeps His promises…and He brings hope for our future.
My last picture with Lewis.
As for my roots? I will leave you with this…Ephesians 3:16-19 “I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ.”He’s not done with me yet…He is not done with you either.
Our lives were forever changed when our twin girls, Anna and Ella, were born the morning of July 19, 2015 at 27 weeks. Anna was born at 3:31 am and weighed 1 lb. 15.9 ounces and Ella was born at 3:32 am and weighed 1 lb. 15.8 ounces. They were both immediately taken to the Neonatal Intensive Care Unit (NICU) and we were told to expect them to remain in the hospital for at least 13 weeks (until their due date).
We knew we had a long road ahead of us, but we were hopeful they would both come home with us. I am a pediatric nurse practitioner, so I made it my full-time job to know every detail of their care. After they were born, Anna seemed to take off and thrive, but Ella was the one who always seemed to struggle. The doctors discovered that Ella had a large hole in her heart that needed to be closed. At four weeks old, she had heart surgery to repair the hole. She did amazingly well that following week and we thought she was finally going to catch up to her sister. Our hearts were shattered when she developed a widespread bacterial infection at five weeks old. She fought hard for two long weeks, but we had to watch her endure more pain than anyone should ever have to experience in a lifetime. In the end, the infection was too much for her little body to overcome. She passed away the morning of September 7, 2015. My husband and I are incredibly grateful that we were both with her when she passed. She took her last breath as the nurses moved her into her Daddy’s arms. That was the first and last time my husband would ever get to hold her.
Something broke in me the day that Ella passed away. I truly did not think that I was going to survive losing her. All I kept thinking was, “Why is this happening to our family?” I did not know how I could continue to live my life when one of my children was no longer here with me. How could I be a mom to our 2-year-old son, Luke, and to Anna who was still in the NICU? I’ve always loved the poem “Footprints in the Sand,” especially the part where it talks about God carrying us through our trials. Looking back, I realize now that the only way that I survived the first several weeks and months after we lost Ella was because God picked me up and carried me through it.
Ella at 4 weeks old.
In those early days of grief, I remember thinking, “I’m not strong enough for this.” I want to encourage you today by saying, “you are stronger than you think.” 2 Corinthians 12:10 says, “That is why, for Christ’s sake, I delight in my weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” So how do you put one foot in front of the other when you feel like your life has been shattered into pieces? The answer I have come to learn is that you face each new day by leaning into His loving embrace. Let Him be your strength.
I have always been an anxious mom but the fear that I experienced after we lost Ella was on a different level. I constantly worried that something bad was going to happen to Luke or to Anna. How could I possibly trust God to protect them when he didn’t protect Ella? I had so much anger towards God. We had struggled for a long time with infertility before we were finally able to get pregnant. I did not understand how God would allow us to get pregnant with twins only to take one of them away. I constantly cried out to God asking him why He didn’t answer my prayers to heal Ella.
Anna’s newborn picture (she was actually four months old because we waited for her to come home from the NICU before having the pictures taken)- she is holding the picture of Ella. The girls never had their picture taken together so this picture meant the world to me.
In the last three years, God has slowly started to mend the broken pieces of my heart. I can see now that God did heal Ella, just not in the way I wanted Him to. He gave us a miracle by taking her to her heavenly home. I am learning that God does not promise that we will not experience disappointments in this life. What He does promise is that He will never leave us, and He will be there to walk with us through that disappointment. I used to ask God “Why me?” but now I have started to realize “Why not me?” There is nothing special about me that gives me the right to assume that God will spare me from loss and heartbreak in this life. Why do some people get cancer while others don’t? Why do some people lose a child while others don’t? I will never truly know on this earth why Ella had to leave us, but I realize now that God chose this path for me for a reason.
I have discovered that I have two options now that Ella is gone. I can either stay bitter and angry for the rest of my life or I can ask God to use my experience to make me more faithful and to help others. Because of my faith, I have hope that I will see Ella again. And because of my faith, I’ve found that I can choose hope.
My main prayer in the days after Ella passed was that I wanted her life to have a positive impact on others even though she was only with us for a short time. I didn’t want her story to end with her death. I wanted her spirit to live on. We chose Ella’s name because it means “bright, shining light.” Right before she passed away, I promised her that I would continue to spread that light to others as long as I am here on this earth without her.
I’ve always loved Barbara Bush. I never knew that she also suffered the loss of one of her children. I only learned that after her passing when I was reading a quote by her where she said, “The death of a child is so painful, both emotionally and spiritually, that I truly wondered if my own heart and spirit would ever heal. I soon learned that I could help myself best by helping others.” Barbara and I have this in common, we both found healing by helping others.
In the beginning this started out as small projects like donating comfort bears and butterfly blankets to the hospital in Ella’s memory. Our most recent project was designing and opening the butterfly bereavement room at the Texas Children’s Pavilion for Women NICU in her memory. This room provides the privacy and comfort that grieving families need when they have to say good-bye to their babies. We pray this room will leave a lasting legacy in Ella’s memory and will be something that will help grieving families for many years to come.
This picture was taken around their 1st birthday, and our photographer added Ella’s shadow. This meant so much to me, because we never got a picture of all 5 of us together.
It brings me peace in knowing that there will be some good that has come out of Ella’s life. That is my prayer for all of you today. That you would be able to find the good. It may not happen next week, next month or even next year. But I pray that there will come a day when you can look back on the time you had with your sweet child and instead of those memories bringing tears to your yes, they will bring a smile to your face. That you will be able to laugh again, to find joy again.
We chose butterflies for the bereavement room because we felt they were the perfect symbol of something that goes through a great deal of darkness yet becomes something beautiful. That is my prayer for every grieving family that I have met along this journey, that they would make it through the darkness and come out changed for the better. One scripture I have clung to is Revelations 21:5 which says, “Behold, I make all things new.”
I still remember the moment we had to leave the hospital without Ella. I felt this wave of panic hit me as we drove away and I told my husband, “I’m never going to be the same after this.” Looking back over the last three years, I can tell you that I’m not the same person I was before Ella passed away. God has used her death to change me and make me new.
This was taken around their 3rd birthday. Anna is holding our Ella bear (the bear that was given to us on the day that Ella passed away) and she’s touching a purple butterfly. The purple butterfly is the symbol for the loss of a twin so butterflies always make us think of Ella ?
I will never understand why this is my story or why this is your story. But what I do know is that this is the story we’ve been given, and with it, no matter how bruised and battered it may be, we have something to offer this world. I truly believe that God has given me this story of renewal and hope for a reason, so that I can share it with others. In sharing my story, I pray that other grieving families are able to find hope in the midst of their greatest darkness.
