Thirteen months ago this week my beautiful son died in my arms. It was the holiest and most brutal day of my life. It has taken me this long to be able to put words (completely inadequate words) to the events and the experience of his final moments.
On January 5th, 2018, one hospital room was full of life. A grateful mother and father held their small son -- 4 lbs and 1 ounce of him. Three grandparents, many siblings, two boyfriends, and a dog drifted in and out of the room along with a rotation of nurses, the neonatologist, the geneticists and the child-life specialist. We had spent a beautiful morning just having a newborn. Feeding him with a syringe, changing his diaper, soaking him in. In addition, there was a lot of care for me in my recovery from the C-section – wound care, pain management, and trying to get me up and out of bed for the first time.
I woke early that day to the bright sun pouring into the room even though the temperature outside was frigid and schools were still closed. Ralph was asleep next to me in the hospital bed and John Paul Raphael slept peacefully tucked between us. I shifted him to my chest and tried to capture a few of these peaceful, shining moments with my cellphone. I cherished the simplicity and beauty of just being a mother with her child.
Before long the hospital was busy and we had several carloads of family on their way to Fairfax to visit with us. As I shuffled back from my first trip to the bathroom, Ralph and I noticed John Paul Raphael was very still in Ralph’s arms. His chest wasn't moving, his head wasn't bobbing -- panic coursed instantly through me. All my research said that these episodes of apnea are "par for the course" with Trisomy 18. Yet as "normal" as they were for a baby with his condition, they were also the way he was probably going to die. I thought I had seen a brief apnic episode the night before – 10 seconds at most where he just stilled and froze and didn't breathe, but it passed quickly and I wasn't sure I hadn't imagined it.
This time was clear. I can't say for sure how long it was that he didn't breathe, but enough time passed for it to capture all of our attention. We painfully waited it out. 30 seconds? 45 seconds? When John Paul Raphael finally began to breathe again, we held him even closer, covering him with love and telling him not to scare us like that again. We called for Dr. Kline, the neonatologist, and Tia, John Paul's nurse, to come in and check his heart rate. All was well.
Dr. Kline spoke gently the reality we already knew. This was the course laid out in front of us. There was no way to predict when the next episode would be or how long it would last or which episode would be his final one. We held on to the hope that many Trisomy 18 babies were in much worse condition. Needed far more than just oxygen. Couldn't drink milk and poop. We also knew some babies went home and lived for days or weeks or months!
We longed for this outcome.
By 12 noon, our hospital room was bustling. Everyone had arrived and my stepmother Joann was graciously dishing out homemade chicken soup and cheese and crackers and veggies. We ate and chatted and passed one lovely baby around the room. After lunch, several groupings of people headed home. Our children Meaghan, Andrew, and Clare and my father and Joann remained behind with Ralph and me to spend more time just being together and enjoying John Paul Raphael.
You were there too, Jesus. I believe you filled that hospital room with your love and grace, your spirit and life, and came even closer as the time arrived for you to slip the soul of our most beloved son out of his body and into your embrace.
It happened while we watched and yet I could not see it. What did you see, John Paul Raphael? Sweet baby, I pray you had no suffering at all, no grief, only love and trust as you left us and went ahead. One moment you rested in Meaghan’s arms, looking up at her. The next, some invisible thread snapped in your body. Your hour had come. Too soon. Minutes, years, and decades too soon.
I hope that in the same moment your brain forgot to tell your body to breathe that Jesus was already there, holding your hand. That at just after one o'clock as Meaghan said, “Something is not right,” and passed you to Daddy who quickly passed you to me, you could already see your Shepherd's face as He came to gather you, His little lamb. I pray His gaze of love was already shining on you.
I watched you, John Paul Raphael, as you lay in my arms, your own gaze already looking away and past my face and past your Daddy’s. You locked onto something up and beyond us and never wavered as you began to die. We cupped your head and kissed you, pulled you up close to our faces and necks and rubbed your chest and your back and tried to convince you to stay.
“Come on, baby, breathe. Come on, John Paul, you can do it, you can breathe.” We begged you as we whispered into your ear. We prayed over and over. Not yet, Jesus. It is too soon. I’m not ready. Not now. Not yet. I’m not ready for him to die.
I held my own breath as we watched and waited and whispered and prayed. John Paul Raphael lay in my arms, enfolded in love as we all drew together, praying and begging him to stay. Lord, have mercy on me. Please don’t take him yet. As the minutes ticked away and John Paul Raphael still did not breathe, my panic turned to understanding, and I knew.
“It’s been too long,” I whispered to Ralph, his body wrapped around mine and John Paul’s, the three of us trying to be as close as we could be. Clare was on the foot of the bed. Andrew and Meaghan leaned in on one side and my dad and Joann on the other.
I wish I could see a holy, heartbreaking movie of that time as the veil thinned and we all hung together in that sacred space, life no longer separate from death. Joy and pain, love and grief – we hung weightless in this place with the mysteries of a whole lifetime, of eternity, unfolding before us. We had no choice but to surrender, this force profoundly bigger than our humanity, and we wept in wonder and sorrow as our beloved, beautiful,
dear John Paul Raphael began to go.
The movie would show us huddled on and around the bed, surrounding our child. (Did we somehow believe we could keep death away? Turn out the lights!!! Bar the door!!!!) As John Paul Raphael stopped breathing, his body became still. He was frozen, like any small child playing a game to see how long they could hold their breath. Only this time, the seconds turned to minutes and the minutes dragged on. His color began to change from pink to gray to green. He forgot to blink and his eyes began to glaze over as he looked beyond. Eventually I could see striations on his sclera and iris, and clinically at some point I am sure his pupils were fixed and dilated.
The plot of this terrible scene includes John Paul gasping for breath at lengthy intervals, every 5 minutes or 8 minutes or longer, as if for a micro-second his brain said, “BREATHE!” and his body took a huge gulp of air. But just one. Each gasp ignited in me a weak hope that maybe he would start to breathe again. I couldn’t help hoping, even though everything I had read about this process told me to expect this. That occasional breaths as the body is dying are “normal”. What a horrible, unthinkable normal. These gasps were followed by more whispers of love into his ears and our continued prayers that the Lord be so close and somehow let us feel His presence in these unimaginable moments.
As one o’clock became two o’clock, I began to whisper my goodbyes. His heart continued to beat, although his heart rate was gradually slowing. I don’t know if his soul was still present enough to receive my love, but my mother’s heart poured into him and I whispered my love over and over. A lifetime of I love you’s. I told him how beautiful he was. How grateful I was to be his mommy. How he had already changed our lives forever. That I would miss him every day for the rest of my life. That I understood. That I knew he needed to go. That it was okay. That I saw it was so, so terribly hard for him to breathe. That we wanted him to be at peace and at rest and to fly ahead where I already longed to be going with him.
How I did this, how I gave my beautiful son permission to die, I will never know. Even while I accepted that I had no power and no choice, my human heart wanted to fight this with every option available.
Get the ventilator. We were wrong! Make him breathe! Someone PLEASE FIX THIS!!!!!!
There was no rescue. Tia, John Paul’s nurse, and Ashlee, the child-life specialist, both arrived at some point. We passed Tia’s stethoscope around to listen to and monitor John Paul Raphael’s heart rate, essentially to know how quickly we were losing him. Fr. Stefan, the hospital chaplain, returned to the room as well. I have a clear memory of looking up from John Paul and seeing Fr. Stefan praying and weeping as he sat on the couch next to the bed. His priestly presence bearing witness with us during this painful vigil was such a comfort.
One amazing detail was that earlier in the day, Fr. Stefan had popped in to check on us. At the time, everything was still going well. He chatted and prayed with us briefly. As he was leaving he turned and asked, “Would anyone like to receive communion?” YES, of course!! What an abundant blessing from the Lord that Fr. Stefan was carrying the Blessed Sacrament and that Jesus came to us in His very body, blood, soul and divinity to strengthen us for what lay just around the corner. He could see what we could not and knew how very much we would need the grace and gift of the Eucharist to endure His holy will.
It would be months before I realized John Paul Raphael died on a First Friday, the day in the church devoted to the Sacred Heart of Jesus and a very important devotion to me. For years I have made it my practice to always go to mass and receive communion on First Friday. Without my even asking or remembering, the Lord provided that blessing to me as strength and comfort on that devastating day.
Other than the imminent finality that my baby would soon be dead, the worst part of this time was the agonal breathing. Agonal breathing, or agonal gasps, are the last reflexes of the dying brain. The body uses the accessory muscles of the respiratory system to try and gather breath. The result can be a look of pain or a grimace, but it is understood to be just the body’s reflex to do everything it can to breathe. Sometime after 2 pm, John Paul Raphael began agonal breathing. The intervals of random breathing continued, but each breath was now a desperate gasp. His face was greenish at this point, his eyes glazed over but still open and so dark. The name is appropriate because with each agonal breath, his eyes and mouth opened wider and he appeared to be in shock and pain. I couldn’t help but think that he was suffering and that he wanted us to fix all this, to stop it, to make it better. And of course, I was frantic to do just that. Ralph assured me over and over that this was just a reflex. It was only the body’s way of shutting down, of letting go. Nevertheless, it was traumatic to witness. We held him even tighter. We kissed him even more. We whispered words of love with all our hearts. We comforted him in every way we could. We covered him in our tears.
At some point, we removed the oxygen tube from his nose so his tiny, perfect face was finally free. As part of preparing our birth plan, Ralph and I had previously discussed the possibility of giving John Paul Raphael morphine to ease any distress or potential pain in his last moments. Knowing that morphine would also slow respiration, we were both hesitant to request it, but the agonal breathing was devastating to watch. No matter how much Ralph tried to convince me that our sweet baby was not in pain, my heart could not accept that. We asked Tia for the morphine and sometime around 2:20 pm, she administered a tiny dose. As we watched and waited, John Paul appeared to relax a bit. In our own agony, I turned to Ralph and whispered, “Will you sing him a song?”
My dearest husband has the most beautiful heart. He was suspended in his own suffering, longing to fix this, to save John Paul, to protect me and our whole family from this loss. I am sure the last thing he felt he had the strength to do was sing. But he would never refuse me this gift in these precious moments. He began to sing a favorite song from one of our favorite artists:
When you're down and troubled and you need a helping hand,
and nothing, oh, nothing is going right.
Close your eyes and think of me
and soon I will be there To brighten up even your darkest nights.
You just call out my name, and you know wherever I am,
I'll come running, oh baby, to see you again.
Winter, spring, summer, or fall, all you got to do is call,
and I'll be there, you've got a friend. 1
We all sang. With all our hearts – the 7 of us and Tia. All of us crying and loving one little boy with one unexpected lullaby. As we finished the final chorus, John Paul Raphael took one last and final breath. Within a few moments his heart stopped completely.
Time of death – 2:43 p.m.
Even in this, even here in death, let yourself be loved.
1 You've Got a Friend by Carole King/James Taylor.