It was February 21st, 2014 around 5 pm. The doctor who was responsible for reporting our MRI results came in. I already had a strong dislike of this man, because I could sense he hated how optimistic I was that my baby boy, only 11 months old, would live a long, full, purposeful life.
He opened the doors that concealed the computer in our hospital room, and began to show us the scans of a normal brain, and then showed us our son’s. I was more and more irritated as he began to talk.
I had quite a knack for being incredibly full of belief in a miracle when the doctors handed us bad report, after bad report. I literally didn’t care what they said. Not because I didn’t want to face reality, but because I knew my God was bigger, and that the promises in the Bible of healing were real, current, and for my son.
But this particular doctor really knew how to rain on my belief parade, and it made me mad.
I only had 2 encounters with this doctor. The first was on our 1st day in the PICU while waiting on a second transplant for Russell. (The first one failed just hours after the surgery due to a mysterious lack of blood flow to the organ.) But this final visit was the one when he told us that our son had suffered brain damage to an irreparable extent. The damage had manifested during the 3 days we spent waiting for a new liver that never came.
Those 3 days of waiting had dragged on and on. We’d spent approximately half of Russell’s final 4 months of life in hospital stays. But all that time combined doesn’t compare to how long those 3 days lasted.
It was a very different world, the Pediatric ICU.
Aside from a more attentive staff, and quieter arrangements than that on the regular “Ped’s floor”, it also differed because instead of staying up late with Russell, trying to make sure he wasn’t too upset from going NPO for 2 days in a row, or trying to help the nurse keep him asleep during 2am vitals, it was just my husband and I, essentially alone, sitting in a room with our baby, who was no longer in a conscious state of mind.
His bloated body filled just a small portion of the bed. There were wires in and out of just about every part of his body. He was sedated, in no pain, but essentially asleep. It felt like that – that he was just sleeping. The ventilator and multiple dialysis machines were doing the work that his body no longer could.
His eyes would open every once in a while, and I would so desperately try to elicit a response from him. I was hoping he would know he was loved, and hoping he knew it would be okay. That is all I cared about, was him knowing he would be okay. I wanted to transfer the peace I had about the situation to him.
The Bible talks about a peace that comes from God and his Holy Spirit that surpasses human understanding. That peace was incredibly real to me in those hours.
The time in the PICU was one where I spent as much time feeling that peace as I could. I made sure to protect that environment. There were a few times I even kicked out some of the more nervous nelly family members and friends from the room, because I just couldn’t allow them to affect that atmosphere of peace I had encountered. I meditated in the promises of the Bible for all 72+ hours.
Until that stupid doctor came in with his stupid images, and all that belief no longer mattered in the face of facts. That was it. There was no more wait and see.
This was the first time I realized that my baby could actually die.
Upon hearing that he was no longer able to stay on the ventilators, my first reaction was simply to be angry. I don’t think I was angry with God, because in my heart I knew it wasn’t God who took Russell’s life away. That goes against the character of Jesus, and I don’t believe that is what happened. But I was angry because I simply could not understand.
I walked down the hall to the bathroom across from the general waiting area – I had to avoid eye contact with everyone there on the way. When I cry, I like to do it in private – bathroom stalls, showers, and closets. So that was where I was headed. I just kept muttering, “I don’t understand”. That was the only thing that kept racing through my mind. I wanted to understand, and I couldn’t. The reality hit me like a train. I sat in that stall and just felt it all.
I wanted to know why my belief didn’t matter. I wanted to know why the promises of healing in the Bible seemingly didn’t apply to us. I wanted to know why God let me down. I wanted to know why my son was on the verge of death. I just wanted to know why. I felt like if I could understand this, I could come back to that place of peace.
But the thing is, that peace that comes from God really does surpass understanding. I now understand that I, in fact, will not understand. That is still hard, nearly 2 years later, to think about. But to anyone who may be struggling, please, PLEASE hear this – that peace is still possible, even with the unanswered questions.
That peace is and was a very real thing.
But there it was. Our new reality was that our son would not make it to his first birthday.
The doctor (the PICU doctor on call who we liked) gave us the instructions as they turned off the ventilator. We would get to hold our son in his last living moments until there was no more gasping for breath. We were allowed to hold him in this time.
His body was heavy. He had accumulated not only wires flowing in and out of his body, but since it was his liver that needed the transplant, he couldn’t process his bodily fluid the same way a healthy human can, and his body was filled with excess water and fluid. It was strange to be holding him for the first time in 4 days and the weight feel so unfamiliar. Christian and I took turns holding him. We spent a few moments with our immediate family so that they could say their goodbyes, but the last few gasps of air he took were just between my husband and I.
We helped the nurse take his footprints, and waited with him until the coroner came to pick him up.
There were a couple of moments of great significance that night, and the following day.
The first was a visit from Christian’s great aunt and uncle, who also lost a child.
They answered our practical questions. They told us that when we don’t know what to do – which is a common feeling in that surreal emotional void that comes when your beloved is no longer there – to just hold each other and cry. It seems like one might do that naturally, but in a time of intense emotion, it’s hard to know what kind of behavior you should display, and what isn’t healthy. But I think having them walk us through that was so, so important. It allowed us in the first moments of grief to be able to look forward, and have a sense of direction. We weren’t just wandering aimlessly in our thoughts and feelings after that encounter. I am so grateful for their insight.
The other significant moment for me was how my husband responded.
When the night’s events were over, family members and friends had gone home, we were left all alone, and suddenly childless. We chose to spend that night in the hospital room we were borrowing through the Ronald McDonald program, so that we didn’t have to immediately face our empty apartment where Russell’s toys were still laying on the ground.
As we entered that room, and laid on the bed, we took our aunt and uncle’s advice and just held each other and cried. But Christian showed a side of himself that I am still in awe of. He did process his own emotion, but his attention began to turn toward protecting me. He wrapped his arms around me, and began to remind me of all the beautiful memories we had with Russell. When he could have been wallowing in his own sadness (and I would have been okay with that) he turned my deep sorrowful thoughts of the life that was no longer, to the life that was. He mustered up the spiritual understanding he had, and gently turned my attention on those things. He was indeed a rock for me in those moments. For this I am so, so grateful. I used that example of his strength in the following months, and in some ways “returned” (for lack of a better word) that to him in his darker moments. I truly believe if we survived that, we can survive anything.
The last significant moment worth sharing today, is how there everyone was for us, especially that night. We had accumulated somewhere around 500 people that had been following our story, outside of just family. There were somewhere around 50 people who came to be with us that night.
I personally was astounded at the love and care people took of us when this happened. In my wildest dreams I wouldn’t have thought that many people would care about our story. Our pastors, my Mary Kay sisters, our family and so many were so incredibly there. It truly inspires me and warms my heart to think back on this. We had meals provided to my parents, Christian’s family, and us for a solid 3 weeks after Russell passed away. It was all just amazing. If anyone is reading this that was one of those people, my heart is so truly grateful for you.
There were many other moments of significance in that time, but honestly those are the things that stand out. We planned a funeral, we pursued our adoption, and we have had another baby since then.
I want to further share how I processed this spiritually and emotionally, because I have learned so much from this, but I will save that for another time.
My closing thoughts are this: If you have a life, please live it. Do something great with the time you have, because every minute is precious.
Until next time…