I have spent hours trying to think of some clever and catchy title for my first blog post after losing our sweet Jaron Isaiah. “The Life and Death of a Warrior.” “”Mission Accomplished.” “Beautifully Broken.” But nothing I thought of seemed to fit. Until I stopped trying to be a clever writer and just let myself be Jaron’s mommy. And from the depths of the grief and sadness came a smile. I’m just like any other mom who recently gave birth. I want to tell people about my baby. So there it is. Let me tell you about my boy.
As many of you were aware, I was scheduled for a C section on April 3rd. Ironically, that was Good Friday. Ben and his parents had just purchased their plane tickets for April 1st, and I was making a list of things I needed to pick up from Target so that I could have my bag packed and ready to go. But then my boy surprised me, as he always seemed to love to do. A little after 6am on Friday, March 27th (both of my boys were born exactly one week before they were supposed to…stinkers), I rolled over in bed and was met by a gushing of water that created quite the mess. I muttered a word I am not proud of, shoved a towel between my legs, and waddled to my parents’ bedroom. “My water broke!” Like mother, like daughter…she said exactly what I had said when it first happened 🙂 From that point on, it was a flurry of activity. Thankfully, Caleb was still asleep and completely oblivious to the life-altering event that had just taken place. I called Ben and told him what was happening. I’m sure my voice was barely audible as I realized that I would have to do this without my husband. I then tried frantically to pack what I had ready (which wasn’t much, seeing as how I was supposed to run to Target and finish packing that day), and my mom and I drove to the hospital while my dad stayed behind to watch Caleb and help Ben find a plane ticket.
By the time I was all hooked up and waiting on the doctor, my belly had shrunk significantly. I had joked several times that it wasn’t fair that I had such a tiny baby, but a gigantic pregnant belly. Now that I was able to look down and see how small my womb actually was without all of the extra fluid, I was reminded of just how tiny and fragile my son really was. I broke down a few times in the hospital room as I was waiting to be taken back to surgery. By that time, I knew that Ben wouldn’t be able to get there until around 9 that night. And while I had an amazing network of family and friends who were all already scrambling to do whatever they could and be wherever they needed to be, I just wanted my husband. My rock. Jaron’s daddy. I silently prayed over and over again that Jaron would hold on at least until his daddy could meet him. I begged God, even in these last few moments before Jaron’s birth, to completely heal my son. Even though I knew it wasn’t likely, I pictured the doctor handing me my healthy albeit small baby and saying, “Wow. He sure fooled us! He’s perfectly fine!”
Finally, they wheeled me down to surgery. I was shaking horribly and having some pretty harsh contractions. Just as the anesthesiologist was about to administer the meds, he was called away to the surgery room next door where a woman’s baby was in more distress than mine. I sat on the edge of that hospital bed, backside exposed to the world, shaking uncontrollably, for what seemed like an hour. I have no idea how long I actually waited. In classic “me” fashion, I joked with the nurses in the room until it was finally my turn.
Ok…I have given birth vaginally and now via C section, and I HATED having a C section! I had no idea how physically rough and forceful the doctors have to be with your body in order to get the baby out! Yuck! All I knew was that all of a sudden, the doctors weren’t beating me up any more. I assumed this meant that my Jaron was out. But there was no crying. None. Just the sounds of doctors conversing, monitors beeping, and the medical staff scurrying about to take care of both me and my son. Amazingly enough, I was able to catch a glimpse of my new baby between the myriad of bodies in that little room. And I knew.
I immediately looked over at my mom and said, “I was right. It’s Cornelia deLange.” You see, a few months prior to Jaron’s birth, I had googled my son’s symptoms. After all, none of the doctors could give me an answer, so I thought I’d give it a whirl. I typed “IUGR, CDH, excessive hair” (even on the ultrasounds, you could see that he was hairy). Cornelia deLange Syndrome was the first thing that popped up. It was literally the only genetic syndrome I had allowed myself to research. One of the most obvious characteristics of CdLS is an upturned nose accompanied by “connected eyebrows.” So, yes…I used my son’s unibrow to help confirm my suspicions. When my OB wheeled his chair over to talk to me, he was lovingly direct. They would have to run some more tests, but it looked like Jaron had CdLS. I was devastated. There is such a wide range of what CdLS can look like, so I only knew that he would definitely have mental disabilities and obviously abnormal physical characteristics. So I went back to the recovery room assuming that I had a lifetime of caring for a severely disabled child looming in my future.
I called Ben and told him the news. I cannot tell you how it ripped me apart to hear him stifling sobs as he sat in the airport. I had to call him several more times before he arrived to fill him in as more information became available. And with each call, the news became more and more dire.
“Hey, babe. Where are you? I’m out of surgery. I’m ok. Jaron is alive and in the NICU with my mom. He is intubated because he wasn’t breathing at all when he was born. They are still waiting on the geneticist, but everyone pretty much agrees that it’s Cornelia deLange Syndrome.”
“Hi. Babe, it’s way worse than we thought. Not only does he have a congenital diaphragmatic hernia like we originally thought, he also has a hole in his heart and his liver has moved up into his chest cavity.”
“Babe, he has minimal higher level brain function.”
“[sobs] The head NICU doctor just used the term ‘incompatible with life.’ [sobs] You need to tell your parents to hurry.”
By the time Ben actually got to the hospital, I had already spoken with both the geneticist and the head neonatologist. I was emotionally distraught, but the reality of it all didn’t really hit me until the moment Ben walked in the room. The second we looked at each other, we both started to weep. Our boy, our sweet and feisty Jaron Isaiah, was going to die. God had not answered our prayers for healing. In fact, our son was much sicker than any of us had even imagined. Although Ben and I had talked at length about the possibility of Jaron not making it, neither of us had actually believed that we would be going home without our son.
We had prepared ourselves for the long haul. We were ready to fight for as long as it took for our boy to be healthy enough to come home. I had never believed in a healing as much as I had during this pregnancy. I was wrong. And it wasn’t just me. So many others had expressed their belief that, despite what the ultrasounds were showing, Jaron would be ok. How could we have all been so wrong? Why hadn’t our months of praying and fasting made a difference in our son’s diagnosis? Why had God allowed our son to survive 38 weeks in the womb, only to take him back so quickly?
All of these emotions and questions were flooding us as we were finally allowed to go see our baby. The walk from St. Joseph’s to CHOC seemed so much longer and more desolate than when we had taken a tour just a week prior. Ben and I were silent. The hospital volunteer pushing my wheelchair congratulated us. Rather than explain just how hurtful that well-intentioned comment was, we just smiled and thanked her with tears welling up in both of our eyes.
And then we met him. All 4lbs 7oz and 16 inches of him. We didn’t even bother trying to hold back the tears. He was so beautiful, and yet so obviously broken. His hands and feet were abnormally small. His waist was so thin compared to his chest (after all, most of his gut was pushed up into his chest). He didn’t open his eyes. He never opened his eyes. We realized fairly quickly that he was also completely deaf. Other than kicking one leg out of the swaddle pillow and scrunching his face up with discomfort, he didn’t move. He was, however, able to grasp our fingers as we lovingly held his tiny hands. Holding him turned out to be quite the ordeal, given all of the tubes and monitors that had to move with him. As I held my sweet boy and caressed his face, he barely moved. It killed me to realize that my attempts at soothing him by whispering to him were completely useless. He couldn’t hear me shushing him. And then it hit me that he had never heard my voice. Every time I had talked to him in the womb, every time his brother yelled to my belly as he kissed “baby brother,” every time Ben whispered to him that we were praying for him…he hadn’t heard any of it.
It haunts me, actually. If my son was completely deaf and never opened his eyes, did he even know who I was? Did he have any concept that he belonged to Ben and I? Could there even be a special bond there if there could be no recognition of our faces or voices? Knowing that there is a possibility that my son didn’t even know I was his mommy rips me to pieces.
His lack of tenacity took us completely by surprise. He had been such a fighter the entire time he was in my womb. From as early on as seven weeks gestation, the doctors had prepared us that he would most likely not make it to full term. And yet, he had fought all of the way to 38 weeks. Not only had he survived to full term, he was INSANE in my womb! If you were one of the precious people who came with me to an ultrasound, you no doubt heard the doctor or technician comment on how Jaron wouldn’t stop moving long enough for them to get measurements or pictures. The kid loved beating me up. Just a few nights before he was born, my mom had actually been able to see my belly moving while we were in a dark movie theater! If I had a dollar for every time I muttered, “Oof!” as my son’s strong kicks took me by surprise, we wouldn’t have to worry about hospital bills.
And yet, here he was. Seemingly content to stop fighting. It baffled me. Let me tell you what this warrior baby fought through just to be born:
-a hole in his heart (undetected until birth)
-his intestines and liver cramping his chest cavity so that his right lung was impaired (misdiagnosed as a lung tumor after a fetal MRI)
-swelling in his forehead
-severe intrauterine growth restriction (he was only in the third percentile when he was born)
-a rupture in my amniotic sac due to the amniocentesis at 20 weeks
-excessive fluid that made it even more difficult for his lungs to develop and should have caused preterm labor
-a pleural effusion (fluid around his lungs)
Can you imagine the level of ferocity with which this sweet baby boy had to fight just to survive his time in my womb?! But why? Why would he fight so hard just to give up in the end?
To quote my husband, “Just to meet us.” Any time I am questioning why Jaron fought so hard for so long instead of just letting himself surrender to his health issues while still warm and cozy in my belly, my husband says those four small, but oh-so-powerful, words. Just to meet us. And for us to meet him. It truly did seem like he knew his fight was over and his mission had been accomplished. It wasn’t until after Ben and I held him that first night that his condition seemed to worsen. Even though he wasn’t requiring as much oxygen, his movements were even more muted and his reactions to outside stimuli were becoming more and more subtle. The baby my mom had sat beside in the NICU in those hours leading up to Ben and I’s visit was not the same baby we saw the next morning. He was content just to have met us. He seemed to know that he was done with this earth and ready for heaven.
And so just a few days after he was born, with our families surrounding us, we watched as the nurse removed Jaron’s breathing tube. I held my breath as I waited to hear him cry for the first time (something that the nurse had told me always happens right after a baby is extubated). Silence. He barely reacted at all. All I heard was the beeping of the monitors and the quiet sobs of family members as they watched the scene unfold. The doctors had told us that they weren’t sure how long Jaron would last after life support was removed. It could be minutes, hours, or days. We prayed it wasn’t days.
Our sweet boy held on for about five hours…long enough for everyone there to hold him and whisper words of love to him. Eventually, only our parents were still in the room with us. I asked to hold Jaron again shortly after both my parents and Ben’s decided to go for a walk. Ben quietly took our son off of his chest and placed him in my arms. I pulled the front of my shirt down a bit so that Jaron’s cheek was directly on my skin. A few minutes later, I noticed that he hadn’t taken a breath in several seconds. I motioned to Ben, and we silently stared at our son’s chest to confirm whether or not he had, indeed, stopped breathing. And, just like that, our son was gone. I cannot explain to you how surreal that moment of realization is.
My son had just died in my arms. I held my newborn baby as he took his last breath and went into the arms of Jesus. Ben and I quietly cried and cradled our boy for several minutes before calling the nurse in. She listened for his heartbeat, and then left to get the doctor. The doctor came in, listened for a heartbeat, and then said four words that still haunt my dreams…”Yes, he is gone.” Even though we knew that would be the outcome, those words took the breath right out of my lungs.
The NICU nurse who had been with us since that morning asked if we would like to bathe Jaron and put him in the outfit that we had brought with us. Wanting to spend every last second with our son, we said yes. Bathing a lifeless preemie’s body is just as horrific as you would imagine it to be. Ben gently held our son in the tub as I washed the dried blood off of his lips and tried to tame that curly black hair of his. I thought back to Caleb’s first bath and how he screamed bloody murder as we wrestled his flailing body the entire time he was in the water. This was so different…so wrong. I yearned for those screams, but was met with silence. We dressed Jaron in a preemie version of the outfit I had used to tell Ben that we were expecting a boy. I hate the pictures of our baby in that outfit. He isn’t there. You can see that his hands are white due to the lack of blood circulating to his limbs. His body is stiff. His coloring is ashen.
When it finally came time to leave, I broke down. I couldn’t leave my boy alone and be wheeled away. I couldn’t stand to see him lifeless, laying in that NICU bed. And so my husband offered to hold him until a volunteer had wheeled me out of the room. The last glimpse I got of my son on this earth was his little body being gently cradled by the man I love.
The days and weeks since Jaron’s death have been a nightmare…both literally and figuratively. I have horrific dreams of my son crying out for me as he lays in the morgue, but I can’t get there in time to save him. My arms literally ache with his absence. I am not exaggerating. Each day is a roller coaster of emotions. Grief often consumes me. Wishing my Jaron was here with us is my first thought in the morning and my last thought at night. Most nights still end with Ben and I holding each other, sobbing.
It took me three weeks to write anything because I was waiting to experience some level of peace about the death of my son. I wanted to be able to write about how my faith has been strengthened…how I know God is good no matter what…how I understand, at least in part, why the Lord chose not to heal my baby.
I finally stopped waiting and just went for it. I have always said that what I write here on this blog would probably get pretty ugly. But I also promised that it would be authentic. So I’m not going to hide from you all while I wait for some sort of spiritual/mental/emotional healing to happen. After all, I’m convinced that the process of healing will take the rest of my life. And I want to be real with you. I want you to not just see the end product of my faith despite the grief. I want you to be able to see the depths to which my soul has fallen. I want you to see the process.
So here is where I am tonight. I am angry. I don’t understand why God chose to take my son. Sometimes, I get so angry that I start shaking until I finally let it all out and just scream at the sky. We prayed so hard. We truly believed that God would save our boy. But all we got was bad news. Even the good news we got was all just misdiagnoses. Why would God give us hope (making it to full term, being told that it was a tumor instead of a hernia, etc.), just to crush it in the end? Plus, besides a complete healing of my son, my number one prayer was that others would come to know Jesus because my son lived. This seems like a completely backwards testimony. If I was on the outside looking in, I think I would run from Jesus, not towards him. It feels like every single one of our prayers for our son was ignored.
But I know…deep down I know…that the God I knew before Jaron is the same. He is still good. He is still loving. He is still just. Don’t ask me how. Right now, all I see is pain and hurt and anger. Because it was a genetic condition that happened at conception, there was nothing anyone could have done that would have saved our son. If love alone could have saved him, I would be snuggling my newborn right now instead of writing this. But God could have. At any point, God could have stepped in and healed our boy. For some reason, He chose not to. There will always be a part of me that wants to scream, “WHY NOT?!” at the top of my lungs. I haven’t been able to pray since Jaron’s death. After all, what’s the point? But I know that this ugly place I find myself in is not where I will stay.
My brother described it best. The night before Ben and I headed back to Montana with Caleb, my family all sat in the living room pouring our hearts out to each other. My younger brother told us about a professor he loved who explained how he was glad to see that many modern worship songs were beginning to truly embrace the sadness and despair that we often find ourselves in. He said that it is ok to yell and scream and metaphorically beat on God’s chest in anger. As long as we take it to Him, it is still an act of worship. And eventually, when we are spent, when we have no tears left to cry and no words left to say, we will fall face down on the goodness of God. Right now, I still have plenty of tears to cry and words left to say. I still feel like I’m falling into a bottomless abyss of grief and anger. But I know…I KNOW…that I will eventually land. And when I do, it will be into the goodness of my God.
And that brings me back to my warrior baby, Jaron Isaiah, whose name means “I cry out, God delivers.” We don’t see Him yet, but we know that God’s deliverance is coming.