we are not superheroes: the reality of parenting a medically fragile child
When I get nervous in life or death situations, I start babbling to the people around me. Or I throw up. I do best when strangers surround me for these reasons. Kind nurses with cool hands offering garbage pails and orange juice. Paramedics with glossy boots and wrinkles. Help me. I need help. Take care of me, too. I don’t know how to do this. I could always sense when a nurse was just “working” or really cared deeply. Some nurses made me cry with their simple, kind acts. I loved it when they nurtured and cared for us as a family. I loved it when they really cared for Florence out of love and respect. Mama’s can sense these things.
Getting to the hospital or Canuck Place was like fleeing across the border. I always felt a strange sense of freedom. I can breathe now. For one small moment. The doctors would reassure us: You are in the best possible place if something goes wrong. So I would breathe and silently ask for help.
Fix this. Fix us. Help me.
My heart was (and is) so broken and tired. I was (and am) desperate to be nurtured.
But oh, God, how I miss nurturing her. Florence wasn’t like Theodore. Her needs were so different. She needed us for everything. E V E R Y T H I N G.
We miss carrying her. We miss rolling her from side to side and changing her diapers. We miss the roar of her suction machine and the way her BiPap beep beeped after we hit the power button. We miss her feeding pump and formula. Just the other day I found the 1 cup Pyrex measuring cup I used specifically for her formula. I knelt down in the kitchen and stuck my nose in, hoping to smell her formula.I whispered into the glass: I miss you. I shoved it back into the corner of the cupboard. I will need to hold this and remember again, one day.
How does a parent simply stop doing everything for their child, one day?
The day before Florence passed away, I remember clearly the way she looked up at me, as we transported her to Canuck Place in the ambulance. Serene, happy, even though she was going through hell. It broke my heart for the umpteenth time, but I had to let the pieces slide to the floor. I swept them under the seat with my boot. Keep. Going. Keep. Running.
The ride was calm. I was so nervous but for once, I wasn’t sick to my stomach. I knew it was bad. I knew it was really, really bad.
The paramedic that sat with us in the back talked about home births and transfers and midwives. He was kind. I clung to his words. Florence was watching a show on the iPad. She seemed stable. I felt relieved. Would we maybe make it through this?
She had on cozy sweatpants and her soft, gray “I love someone beautiful and rare” T-shirt (created by a fellow SMA mama). I wanted her to be comfy. I always wanted that. I ached for that. My fibres screamed it out on a daily basis.
Comfort. For my baby. It threw me into a panic. I want her comfortable! Whatever it takes! Give her pain to me. Let her rest. Help her. The cries of a grief stricken mother are not for the faint of heart.
Grief stricken because I wanted her well. And there was nothing I could do about it.
To put it plainly, it was agonizing.
Parents of medically fragile children are not superheroes. They are cut from the same cloth as everyone else. They don’t get tough over time. They just get good at holding their breath and faking it.
It doesn’t get easier. In fact, if your child is fragile and there is no cure or treatment, it gets harder. Much harder. Some call it living on borrowed time. It’s a type of parenthood that’s often filled with fear and trembling, anxiety and medication, grief and naked honesty.
I remember when I started getting honest about Florence’s condition. I was honest with myself first, and then to those around me.
My language changed. I used to say she had special needs. Then, that didn’t fit. Because she didn’t really. People would assume she could do certain things. Or might get better. But she was sick. She was progressively getting weaker. Her body was failing on her. She was…fading.
I started using the phrase terminal neuromuscular disease.
It fit. It painted a picture for people. My child wouldn’t get better, unless there was a miracle. My child would one day die from this disease. My child knew what was going on around her. She was so smart and bright but couldn’t verbally express herself due to weakness. She was dealing with big, adult things that big, adults don’t even know how to deal with.
No one really knows how to function when their loved one is living with a terminal disease.
Hope and heartache go hand in hand. Depression and sheer happiness mingle. Sadness and sorrow can roll right into your day, just like peace and acceptance.
Life is an emergency. It really is. You live in isolation because you don’t want your kid to get sick. So you protect them. You don’t go out as often. And when you do go out, you’re usually alone, because it’s so hard to go on a real date with your spouse and leave your kid or your friends are always sick.
And when you are alone? Well, it’s easy to run from a cafe full of coughing people or bolt from a restaurant if your server has the sniffles. Sheer fear and motherly instinct propelled me out the door many times. Get. Me. Outta. Here. I still have to remind myself that it’s okay if someone around me is sick.
It’s hard to believe I lived like that. But I just knew, in my gut, that Florence couldn’t tolerate getting really sick again. She survived for three years because of how we protected her. We were on lockdown. There was one whole year where none of us got sick. And still, she got weaker.
Nothing ever got easier. We just learned how to cope. My faith anchored me and held me up when my knees were shot. I fixed my eyes on eternity when I couldn’t stop crying.
It was hard. It is hard. I am not a superhero. I am not strong. I am just an ordinary mama letting life and God and circumstances carve into me. I hope something rare and beautiful is made from this mud of mine, because I’ve already watched the life drain from my beautiful girl. That kind of brokenness is not beautiful. It’s just plain hard.
One day, I will see with new eyes, the whole picture. It will be pieced together magnificently. But until then, I will continue picking up these shards, like seeds in my pocket.