Although this is a big part of our story right now, it is not the end of the story.
We are a family of four on an extraordinary journey of faith. We have a story to tell, one that is carving out deep places in us, rubbing our hearts soft and tender. We see everything differently now. We used to just live…our lives were simple and clean and uncomplicated. Yes, individually we had our heartache and struggles. I went through some major, life altering surgery, and Jay didn’t miss out on getting cut open and stitched back together either.
Florence Marigold was born perfectly healthy. I had a wonderful labor and pushed her out into the warm water.
At 3.5 months, I noticed she was having trouble lifting her head while on her tummy. She had some leg tremors that the pediatrician chalked up to delayed neurological development. Normal, he said. I took her in to my doctor and asked for a referral to another pediatrician, a few months later. The leg tremors seemed to have dissipated, but her weakness was starting to worry me. She this new pediatrician ran some tests, just in case–she really didn’t seem too concerned. Looking back, maybe I should have asked her what she really thought. Because that “just in case don’t be alarmed, this is nothing to worry about right now” test came back showing that there were indeed some missing genes in the makeup of our baby girl.
I was digging up potatoes from the garden when I got the phone call. I walked into the house, totally unaware of what was happening. I heard the sorrow in the doctor’s voice, begged her to tell me over the phone. You can read the full story of her diagnosis here.
Florence was diagnosed with type 1 Spinal Muscular Atrophy (SMA). Our lives have changed a lot since then. I was blessed to be able to breastfeed her until 13 months until she was taken off of liquids and solids by mouth. She was in hospital for 7 weeks after being intubated with aspiration pneumonia. She got a GJ tube, and also wore Bipap (“non” invasive ventilation) to help her lungs expand properly during her nap and night sleeps.
Somedays it felt like everything was going wrong. I thought about losing her. I thought about the chances of this happening again (statistically 25% chance with each pregnancy). And yet, the best thing I did was push these things aside and keep my eyes fixed on Jesus. I am slowly learning to be brave.
While other babies learned to crawl and walk and roll over, she learned to blow out spit and bubbles so she doesn’t choke. She used to be able to hold her head up for small periods, drink breast milk and eat baby food. She could lift her arms up, first from the shoulders, then just the elbows and now she can barely hold onto a tiny, foam toy. Her precious mind was untouched. And she was brilliant and wise beyond her years.
She would shout love with her eyes, with her smiles, with her joyous laughter when I wrapped her arms around my neck and gave her a hug.
Mothering a child with a “terminal disease” didn’t get easier—it just changed over time. Before the diagnosis, I thought about what it would be like if she had SMA (not imagining that this would be the case at all), and I said: I couldn’t do it, we would probably divorce. I would crack into a thousand pieces of sorrow.
But we didn’t. We walked through every day. We had joy. Yes, we watched her suffer. But we lived each and every day.
Florence began to lose more strength when she turned two, but she had a healthy winter season, with only one respiratory illness and hospitalization. Right before her second birthday, she fractured her femurs, and then a few months later, both of her hips. She was diagnosed with osteopenia (low bone density), and we sought treatment to strengthen her bones. It seemed to help, because she didn’t have any more fractures.
I gave birth to a healthy son on August 25th 2014. He was born at home, so I could be next to his sissy. I didn’t want to leave her, even for a night.
When Florence turned three we began to notice some changes in her well being. Her weakness was extraordinary. She was afraid a lot. She didn’t want to go out as much. She seemed to slow. Time slowed.
And then, two months later she took her last breath at Canuck Place Children’s Hospice in the middle of spring. We firmly believe in the power of palliative care, an often misunderstood form of pediatric care that is both life giving and life changing.
Florence and Theodore got to spend seven blissful months together before she passed away. He will always have a big sissy, and he knows her name and who she is.
We still believe the story isn’t over. She is still writing it. She is and was and always will be our little girl.
Florence Marigold Evanow
March 7th 2012- May 9th 2015