Never in a million years did I imagine I would lose my first born daughter the day before Mother’s Day.
I remember thinking how awful the timing was. I remember closing my eyes and wishing it all away.
But death came and she flew Home the evening before Mother’s Day 2015.
Instead of rushing home and leaving our little girl behind, we were told we could all stay over another night. So, we put our infant son to bed, and I held Florence’s still body in my arms until she needed to rest on ice. I was able to hold her like she wasn’t sick anymore. Like she was my baby. No fear of choking, no fear of hurting her. The disease Spinal Muscular Atrophy stole her ability to sit upright, use her muscles, eat orally, and eventually breathe.
I trudged up the stairs after saying good night to her, feeling absolutely torn, but also relieved that she was staying here another night with us.
I woke in the early morning of Mother’s Day in our room at Canuck Place. I felt my stomach flip flop. I was actually excited to see her. I knew her spirit was gone, but I certainly wasn’t ready to part with her body yet. This was the best decision we made, and it was offered to us because we were in a facility that knew how to care for her. It wasn’t weird or unheard of and it wasn’t scary. It was a normal part of the process of death.
In those hours after her death, I just wanted to be in a safe place to explore what immediate grieving looked like for us.
So, on Mother’s Day, I went into her room at Canuck Place one last time and saw her sweet body tucked in to bed. The nurses had changed the quilt. They cared for her, with honour and dignity. My mama heart rejoiced, knowing that she was loved and cared for, even though death had taken her from us. Marigolds filled the room. Some were still safely tucked behind her ears and in her hands. The musky, sweet scent brings me right back to that moment.
Florence Marigold was a very gentle soul. She could look right at you, and you’d feel such love and acceptance. She loved to snuggle down and watch Tinkerbell and Sesame Street, and read books and play games on her iPad. She loved being outside and was enthralled by the birds and flowers and the sunshine on her face.
She was wise beyond her years as she fought her disease but she was also frightened by a lot, so we had to keep her sheltered from things that made her feel unsafe. We couldn’t fix the disease, but we could give her security and love.
Canuck Place gave us the opportunity to feel comfortable in a home like environment and let Florence be with her mama and daddy under the same roof. We had time to rest. We got to know all of the staff, from cooks to nurses. We could unwind, knowing we had wonderful care and were only minutes from the hospital.
But what really blew me away was the end-of-life care. There is absolutely no way we could have done it on our own. The team guided us with a steady hand through the most agonizing moments of our lives. As a mother, I can’t fully express how much gratitude we have for this place. The bereavement support has been phenomenal. I have a place to gather with other families that have lost children, every week. Over cookies and between tears, we share.
The fact that we are invited back to events that we previously attended with Florence, is so incredible. Our son gets to spend time in a place that was so special to his sister and to us. And because she passed away at Canuck Place, being involved with the program allows us to feel closer to her. Some days are incredibly hard, and all I want to do is hold Florence in my arms. I cannot do this, but I can walk into the doors of Canuck Place, sit down, and talk about it.
After your medically fragile child dies, the life you once knew comes to an end. The hospital care, the familiar faces of those doctors and nurses, the checkups, the daily routine. Everything changes, except Canuck Place. Our child may not receive care there anymore, but we do.
And we know that just up those winding stairs, a room lined with windows holds the sacred memories we made with our little girl. The memories are hard, because we had to say goodbye in that room, but they are there, tucked safely inside our chrysalis until we are ready to revisit them.
You can find out more about #FlorenceMarigoldinBloom on Instagram and see how hundreds have honoured her life by planting marigolds in her name.
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