TRIGGER WARNING: this post is about the loss of an infant.
By Courtney Tobin
I never knew my motherhood experience would mean I would have to decide on the most compassionate way for my son to die. I never knew motherhood would include losing my son. I watched him take his last breath while sitting in his room on the 5th floor of a hospital in the PICU, after five long months.
I never knew motherhood would include picking out a casket color, a headstone, or silk flowers at Hobby Lobby when they’re on 50% off because the old ones need to be replaced at the cemetery. I never knew it would look like my five and seven year old hugging me as I weep uncontrollably nearly every day for a very long time after their little brother died.
My third son Gray, was always different than his two older brothers. He was extremely laid back and was also very thin. He had trouble feeding, so I had to take him in for weight checks every couple of weeks and put him on a supplemental feeding plan. He seemed so laid back, as he rarely ever cried but I felt very preoccupied with his weight and how sleepy he was. I was at the doctor so frequently and hyper-aware of what he was doing. I felt like I had a handle on things. I tried to relax.
Then, at two and half months, I woke up and fed him one morning and afterward I noticed something that brought my worst fears to a head. I noticed him twitching violently.
It started off slowly but quickly went from one side of his body, all the way around to the other side. I called my husband, then hung up on him and called 9-11. We were rushed by ambulance to the ER, where he had another seizure. They transferred us to a hospital an hour away. I laid on the gurney holding him the entire ride. I remember looking out the back windows and thinking, this could be the day my life changes forever…
Needless to say, it was. After five long days in the hospital we found out after an extensive MRI that our son had severe global brain atrophy. The neurologist had no answers to as why, but explained that Gray had suffered an arrest in his brain development in utero. To say we were crushed and terrified would have been the understatement of the century. We were looking at pictures of our son’s brain on the MRI scan, and I nearly fell to the floor. Would my son talk? Would he walk? Would he be able to live a normal life? The doctor couldn’t answer any of those questions for us. He prescribed seizure meds and sent us on our way, with an appointment to see him in another month, after Christmas. “You’re taking home the same baby you brought in here,” he told us. But well, that simply wasn’t true.
We took our sweet boy home and were completely shell-shocked. I was not only terrified but I was grieving. Knowing my sweet, precious and beautiful son wasn’t “perfect” or “normal” just rocked my world. I was so scared that he would struggle. That he would have pain and hardship in his life. That he wouldn’t be happy. I desperately wanted him to have a happy and healthy life.
Over the next two weeks, things got even harder. I was in the paediatrician’s office constantly. Gray continued to sleep for the majority of every day and was extremely lethargic. His eyes looked “off” and his muscle control was nonexistent. He ate less and less every day. We were at a loss for what to do. So one morning, we showed up at the doctor’s office once again, before his doors were even open. He took Gray and weighed him and he looked shocked, even a little scared even. He told me that Gray had lost over a pound in only a few short days.
I stood there and begged him through tears to tell me what to do. Where do I take my son to save him? Please, just tell me what to do! So he sent us, with all of his records, to a different hospital two hours away.
Gray had two more seizures that day. It was December 23rd, 2013, and he was admitted directly in the PICU that night. We were beyond exhausted. The day after Christmas, we found out even more devastating news. Our son not only had severe brain issues, but he also had Congenital Nephrotic Syndrome (CNS) and his kidneys were barely functioning. The CNS is why he always had trouble gaining weight. His body was absorbing practically zero protein. We were told he would not only need a kidney transplant to survive, but also would more than likely need one or two of his kidneys removed since they were not functioning properly, and also making him very ill.
We were given options we didn’t like at all. We begged God to hear our prayers and
intervene on Gray’s behalf, and build his body up.
Gray was put on peritoneal dialysis shortly after and we moved into Ronald McDonald house. We prayed a lot and celebrated every little victory with him, and held him as often as we could when he wasn’t on a ventilator. Our other sons sat in that ICU doing their schoolwork, and took turns holding their brother. It was absolutely unbelievable to me that we were living our lives in the hospital.
Gray had both his kidneys removed, when he was four and a half months old. He did so well for awhile and was on manual peritoneal dialysis performed by the nurses around the clock. Our goal was to get him healthier and on a cycler dialysis machine so that we could take him home. But Gray’s health continued to decline, and after many surgeries to repair his catheter and another code, Gray was just barely hanging on. That’s when the hard conversations with our older sons began. That’s when the discussions about DNR’s began. That’s when my faith and hope were stretched beyond what I thought I could bear.
On Mother’s Day, Gray’s dialysis stopped working. We decided, along with his medical team, to unhook him from everything, turn down all his fluids and meds, take him off the ventilator and just spend time with him.
Even though we knew he was dying, we were so thankful that we had had so much time with him. His doctors came in, one-by-one and gave their condolences to us while he was still alive, apologizing that there was nothing more they could offer us.
And through my tears, I smiled and thanked each one of them for giving us the precious gift that they did. The gift of TIME. I told them that they gave us FIVE months. Five whole months with our boy. There was no need to say sorry.
One week after Mother’s Day, my husband and I sang to Gray as he took his last breaths. He was in my arms when he died, with his little minion hat on and his ant shirt and booties.
My youngest son was gone, just like that.
I never thought motherhood would look this for me. I never knew God would allow me to go through the one thing I had always told him I couldn’t do…
You can do whatever you want in my life, God, but don’t take my kids. Please don’t take my kids. I can’t do that. I simply couldn’t make it.
But, I am.
And, it is the hardest thing ever. It’s been 16 months since he’s been gone and my life is so different now. On the whole, I feel like I’m in a much better place than I was just a few months ago, but there’s a sadness that seems to have settled deep in my soul. Some days I don’t feel it as much, or even think about it much at all. But just like that, the switch is flipped and I relive every little moment.
The joys of bringing my newborn home. The thrill of seeing him smile at us. The memories of our sweet life before he got sick, and then the reality of all the trauma he had to live through. I couldn’t save him and I had no control. And that in the end, after all of that, he still died. It breaks my heart again and again.
Motherhood has been a ride, for sure. It still is, every day. I’m more of a broken person now, but I also feel more real, more free, more authentic.
My sons have had a huge impact on my healing, in that they have showed me how to grieve. They have showed me how to be compassionate and ask the important questions. They have acknowledged and validated my pain. They hurt too, but they live. I’m learning to do that too. I’m learning I can still live and be a good mom and wife, even while being broken and in pain. And I’m learning to be honest about the pain and acknowledge it, but to know that it won’t last forever.
The wave will go back out, and the calm waters will be return once again.
I love you, Gray.