3 years ago today, on a beautiful Thursday in September, I stopped being the parent of a chronically ill child began a new journey as a bereaved mother. It’s taken me three years to write this down, so I may have forgotten some minor details, but I’ll never forget that morning.
It was around 6am I woke J up and pleaded with him to hold Kate. She had barely slept that night and I was exhausted and just want an hours worth of sleep. I didn’t recognize it then in my sleep deprived state, but I later realized her restlessness was most likely due to her increasing struggle to breathe as her already tiny lungs got weaker and weaker.
Later that morning I begged J to let ME take Jack to the store. I needed to get out of that house. I needed to feel like life was “normal” for a moment. I needed to escape the medical world I had been living in for over a month. Jack and I set off on a mission to buy an ink pad so I could get Kate’s hand and foot prints for keepsakes. I don’t even know what else I intended to buy that day, I guess it doesn’t really matter.
I talked to Kate’s pediatrician as I pulled into the parking lot. I told her that it had been a rough, restless night, but was ok when I left her. I put Jack in the cart and walked into Meijer.
The trip didn’t last long. I was walking down the baby aisle when I got a panicked call from J. He was asking if the numbers on her monitor could falsely read low for a moment. He told me her heart rate had dropped but everything looked good now. We quickly left the store, ink in hand, because my gut told me it was now or never if I wanted those prints.
When I arrived home and saw Kate, I knew it was THE day. I don’t know if she had drastically changed while I was gone or if I was just seeing her with fresh eyes, but I could tell. I looked at J and told him I didn’t think it’d be long and he agreed. I had been simultaneously dreading this day but praying for her struggling to end since the moment we decided on hospice and now the moment was here. I called hospice, but only got our nurse’s voicemail. I left a message and waited for a callback.
As I waited for a callback, I decided that if this was the day, then I wasn’t going to waste anytime and I was going to get her prepared. I felt this sense of urgency to get things done before I just sat and held her. Every time I walked past her as I did my tasks, I felt guilty, yet I couldn’t stop just yet. I put Jack down for a nap. I went into NICU nurse mode and started to create some final keepsakes. I took out the ink, grabbed some paper and made a few copies of her hand and foot prints. Her feet were hard to do because her foot drop had become so extreme and her tiny fingers were so tightly clenched from her disease that I had to pry her little palm open. It was messy, so when I finished I decided to bathe her. Because of her short oxygen leash, I brought the baby bathtub into the living room and bathed her one final time. I dried her and wrapped her in a blanket because she felt too clammy to dress. In hindsight I wish I would’ve just stopped and soaked in every second I had left with her.
By this time a good hour or so had passed with no callback, so I decided to try the main number. Upon reaching them I learned our regular nurse was stuck in Port Huron so they sent another nurse over right away. She arrived quickly, pregnant belly and all. I’m ashamed to say that I don’t remember her name, but she was kind and I actually preferred her to our original nurse.
She immediately assessed Kate and asked if I had taken her temperature(I hadn’t, why hadn’t I thought to do that?!). When she checked it, it was low. She looked at me and in a soft voice confirmed that Kate was actively dying, this was THE day. She stepped outside and called the hospice physician and we texted our families that Kate wasn’t doing well.
Before we knew it family started arriving. It all felt very unreal. I never stopped praying for a miracle but I had also secretly been praying since we entered hospice for God to take her while she was peacefully sleeping on my chest in the middle of the night. Yet here I was, middle of the day with a room full of people and I didn’t really know what to do.
So I held her.
I rocked her in our big, black recliner and I talked to everyone like it was an ordinary day. In between normal conversation we talked about funeral homes and final plans. At one point I shut off her feeding and removed her NG tube. They started giving her morphine to keep her more comfortable and it stained her mouth blue. Every so often I’d look down at her and caress her face, kiss it and tell her it was ok to go. When her numbers began to drop slowly, we turned off the monitor. I let J hold her for a bit and offered for others to as well, but they all declined so that we could have our time.
I asked about removing her oxygen. I was told me it was up to me, but some believe it makes them more comfortable. I waited until her breaths slowed a little more then finally took it off so I could finally see her face free of tubes for the first time in almost a month.
I marveled at how perfect her little face was. The way her hair swirled in the front of her hairline and how her eyelashes perfectly kissed her cheeks as she slept in my arms. I caressed her long fingers that had began to relax a little and her skinny little feet that had started to lose color. I continued to kiss her every so often and tell her it was ok to go. I took a few pictures of her so I could remember what she looked like one last time free of tunes. This went on for a couple of hours, but it felt like forever.
Some family members sat outside and kept Jack occupied, while others stayed inside with us. The social worker from hospice had come in at one point and would venture out of the kitchen to check on me sporadically. The nurse sat on the floor next to me, but didn’t feel intrusive at all. She checked Kate’s heart rate periodically and offered to give her morphine whenever enough time had passed since the last dose. Finally just after 4pm, she listened to Kate one final time and told us she was gone.
I don’t remember having a profound react in that moment, it was almost anticlimactic for me. Perhaps I was in shock. I just continued to hold her and kiss her face. The social worker offered to do some more keepsakes and we made some colorful handprints that included Jack, J, and I. She offered to help me bathe her, but I confessed that I already had.
Kate’s neurologist and pediatrician called and I spoke with both of them. Her pediatrician was in shock that it happened so quickly. Her neurologist informed us that her testing for SMA had come back negative but the SMARD testing was still pending(we would end up waiting another 2 full weeks). We discussed autopsies and muscle biopsies. She offered to come over if we needed her to, but we told her we were ok.
After sometime, family said their final goodbyes and left. It was then just the nurse, the social worker and us. I remember rocking her and wondering, “now what?”. I continued to hold her for a couple of hours. I just couldn’t put her down even though I just felt like I was prolonging the process. We let Jack say goodbye and J put him to bed.
We finally agreed to have the funeral home pick her up around 8pm. We had decided on a muscle and diaphragm biopsy to help obtain more answers, followed by cremation. I dressed her in her pink, lamb pajamas, but was then told that whatever I dressed her in likely wouldn’t be returned, so I changed her into a white onesie and wrapped her in a white muslin blanket. It seems silly now that I wasn’t willing to part with any of her other things(and the items did end up being returned to me).
When the funeral home came, they arrived with a black van. When we were ready, they had me place her on a gurney in the back. They gently strapped her in and offered their condolences. They then drove away with our baby girl and a huge piece of our hearts.
J and I stood on the driveway for a moment as I sobbed in his arms before going back into the house. My best friend came over briefly to offer condolences and check on me, I updated her Facebook page with the news of her passing, snuggled Jack for a bit and then headed off to bed. I curled up with her pink knit blanket and J and cried myself to sleep sometime after midnight. For a moment I prayed the sun wouldn’t rise that next morning because I didn’t know how I could face a day without her in it.
3 years later I have faced over a thousand days without her in it, yet there are parts of that day that are as vivid as they were in real time. Other parts I have begun to forget. It seems impossible that I have made it this far at times, but I know this part of my story is still being written. Grief and I are still getting acquainted and my journey into it has only just begun.