It’s Alyssa Rae’s birthday week, and tonight I’m sharing the end of her earthly journey. With all my heart, I hope that my earlier posts, about our first child’s birth, the story about her short but impactful life, this story of saying goodbye, and tomorrow’s call to action, can each inspire compassion and giving. It’s all for this Saturday’s fundraising flash mob of remembrance, love, and hope. Please don’t turn away from this painful recounting of what we went through. We are all brothers and sisters on this planet, and if we want to keep to humane in humanity, we need these stories.
Our friend Tony captured some of what I’ve been going through this week, and more tears flowed from the sentiment in this art. As per Tony’s wishes, click on the picture to donate.
Tomorrow, I will write more about the Neonatal Intensive Care Unit (NICU) at SickKids, where the best of humanity gathers to distribute miracles. Staff here are the best of the best and so deserve the very best of what modern medicine and design can give them. These NICU doctors and nurses have all gone through at least 10 years of schooling and another who-knows-how-long in specialized training when they answered a call to be angels on earth for very sick babies. They are on their feet, improvising, constantly learning and teaching others, for long hours. They fall in love with babies and their families, and when they lose one, they grieve too. With nimble fingers and steady hands, nurses are caring for the very tiniest, most fragile infants all while listening and responding to parent questions, adjusting monitors, untangling lead lines and charting on computers. They take leave in order to recover from heartbreak, to attend funerals, to debrief with counsellors. So Saturday’s online fundraiser, where you’re asked to give 20 bucks for Alyssa’s birthday, is also a tribute to NICU staff and a promise to them that we have their backs, we see their good work and we respect their knowledge, expertise and the way they combine that with compassionate, loving touch. Also, did you know that Saturday just happens to also be World Prematurity Day? Let’s hit that donate button, send our $20 and forward it on for the whole world.
Friends, I feel so raw right now. I’m not fit to do what I want to do so I’m summoning my Mama Bear side, ready to attempt to take unspeakable grief and transform it into a better world.
Grandma Audrey and Grandpa Ernie Schroeder, December 4, 1998
So after we signed the Do Not Resuscitate (DNR) order, there was a shift in energy in her room. The nurses anticipated our need for privacy and any new preemie roommates were kept to a minimum. The previous sense of momentum and urgency had come to a halt and we felt we had lost our footing. Whereas previously we had rejected invitations to talk to the SickKids chaplain, Michael Marshall, now we sought him out. We liked him instantly. He had a ponytail, little round glasses and a quirky, endearing way of rubbing his chin before responding. We told him our whole story and he seemed to soak it all up, like he had nowhere else to be. He got us talking about the bike trip, our marriage, our relationship with religion (or lack thereof) and our shifting framework of spiritual beliefs. We talked about Alyssa’s catastrophic condition and helped us to make peace with how her story would end. Also, because Pastor Michael had lost an infant son there at SickKids Hospital years prior, we knew he knew our pain.
Grandma Clara and Grandpa Dave Johnson, December 4, 1998
Michael introduced us to the concept of having a special gathering in a circle of love around Alyssa. Together we came up with an order of service for a blessing that Michael would lead, incorporating poetry, ancient writings, and some elements of transformation. On December 4th, twelve of our closest family and friends joined us in Alyssa’s room for the Blessing. Alyssa was laying in her cushy nest, dressed in a long white embroidered gown and sweet little cap. Bruce and I held her hands and the circle formed right there in the middle of the NICU room. Michael handed out programs, spoke eloquently and involved everyone in the readings and in a ritual with water and earth. Bruce read the Shel Silverstein poem, Forgotten Language. As Michael finished the blessing, we heard “Appalachian Lullaby” and held each other’s hands:
Grace, mercy, peace that passes all understanding keep you always in the radical awareness of this gift of life, a knowledge of hope and a love that challenges us to seek justice, peace and freedom. And may God’s blessing create, restore and sanctify you. Amen.
~Michael Marshall
The love in that room was so beautiful and it was all inspired by Alyssa. She was the strongest link in our chain. It helped me transcend the physical agony I was going through. Even though it was a warm room, I was wearing a thick fleece jacket over my blouse. Moms out there, you’ll understand this best, my breasts felt like they were about to burst. I hadn’t pumped since the night before, because the reality was, Alyssa would no longer need to be fed. But bodies don’t always follow instructions immediately, and so my bra, even with breastfeeding pads stuffed in thickly, was soaked. I was so tender, I couldn’t hug anyone. As a first time Mom, I was learning that the intense mother-baby bond was not just a fondness — it felt like being physically tethered. How would I survive letting her go?
On December 6th, after more loving but sad visits with family, we gathered with our parents and siblings into a room with an interior room, where they could wait nearby while we went in to slowly say goodbye to our precious daughter.
After removing all but the breathing tube, Nurse Janet skillfully assisted us in bathing Alyssa in nice warm water, rubbing her with baby lotion. At last, the tape came off and we could see her adorable upper lip and have a long conversation with her. She was awake, calm and held eye contact with us. It rocked my world. With her eyes, she said she was ok. Throughout her short life, she had a sort of knowingness about her. It was the greatest gift of my life, to have our souls communicating “it’s all right” to each other. I am sobbing as I write this, but please don’t think it’s due to a painful, tragic moment. It’s the beauty. My God, life is amazing. And death…dare I say it? Can be beautiful. We aren’t conditioned to think that. That there is such beauty available to us, when we surrender, let go and love.
We were also accompanied by a doctor named Doctor. Previously, when we’d hear “Paging Dr. Doctor” over the loudspeaker, we’d crack up. She was the kindest soul and she was there to make sure that throughout the process, Alyssa was never in pain. Together, Bruce and I sat and held Alyssa, with lights from the sky and city blinking through the dark window. All tubes were now removed and for many minutes, she stayed with us. We held onto each breath, and even as they got farther apart and smaller, I held out hope that she would prove all the doctors wrong and start breathing on her own. Her heart was at the surface of her skin, so we could see and feel it slowing. I was wishing that we could all just be preserved at that moment because surely we couldn’t go on without her? I had a very clear and very irrational thought, that seemed to emerge from rational thinking, that I was going to die. Not just from heartache, but literally that the physical bond being what it was, her last breath simply must be mine as well.
At 8:08 p.m, on Sunday, December 6th, 1998, Alyssa flew to heaven. And I didn’t.
Bruce and I stayed with her for a long time. At last, we could get a good look at her. Hold her upright while looking out the window. Put our cheeks to hers and continue to make her promises. We promised we would never forget her. That we would say her name. That any other children we were blessed with would know about her. And, I whispered, please come back to us. Then, one by one, our parents came in to hold Alyssa and say goodbye. I was somewhat amazed and extremely touched by the sight of them rocking her body so lovingly. Their tears flowed and flowed, and I knew that they were sad both as grandparents losing their granddaughter and as parents witnessing their own children in anguish.
There were other matters, the menial matters of transporting her body, getting the death certificate and organizing a memorial service at the funeral home. Numbly accepting and recording hundreds of gifts of flowers, mementos and cards. Twenty years ago, other than the outpouring of love and sympathy, the most meaningful gifts we received were the gifts given to The Hospital for Sick Children Foundation, in tribute to Alyssa Rae Johnson. It was enough to buy another glider rocker and other comfort items for the NICU.
After Alyssa’s death, SickKids continued to reach out to us, with letters, booklets, and photos they had taken and had printed for us. The SickKids chaplain, Michael Marshall, led her funeral in Wasaga Beach, and a couple of our very favourite nurses came all the way up to attend. It was overwhelming and so very meaningful to have them there.
Note: If you or anyone you know is in a similar circumstance, I highly recommend the booklet titled “Loving and Letting Go: For parents who decide to turn away from aggressive medical intervention for their critically ill newborn” by Deborah L. Davis, Ph.D., ISBN: 1-56123-060-X
Finally, please read part 4: How you can help and exactly what is planned for the SickKids Hospital NICU.