I can see a lot of bright in you: finding hope in unexpected places.
When doctors, physiotherapists, occupational therapists and everyone else that works with us see Florence’s diagnosis on paper, they assume a poor prognosis. SMA type 1 is the “worst” form of SMA, although children with type 2 can run into just as many, if not more complications. Every child is different, but with type 1, they assume the worst, because the child has fewer genes to prevent atrophy. They may be weaker, sicker and as far as textbooks go, not make it to two years of age.
Take our recent visit to the hospital for check ups. Florence lost a pound, which is a lot for a little one like her. We are working to get that weight back, and we have about a month (please pray for us!) With the introduction of high fat yogurt and cottage cheese, I’m hopeful we will see it. However, the neurologist had to mention a feeding tube as a possible option in the future, just because that is what she’s seen in the past. In her mind, she assumes it will get worse. I do not, although I do wage war with my mind about it sometimes.
It’s hard to wake up every morning, sick to my stomach, unable to eat, sometimes throwing up, feeling weak and wracked with anxiety. Angry at myself for feeling physically ill, for letting anxiety do this. It all started the morning of the hospital visit last week. I was convinced I had Norwalk, but really, it was just all the past months of tension, fear and pain catching up with me. And a crack let it all in, and it’s taking it’s time letting go of me.
But, I believe Florence will beat the odds, I really do. Chalk it up to my faith in Jesus though, because our human hearts cannot bear that much faith and strength.
There are children that beat the odds all the time. There is even one in the city, Ruth (name changed for privacy), who has type 1, and is at UBC right now. You do the math.
And there are children that pass away at a young age.
I was at the pool today with our wonderful physiotherapist, and I felt the need to ask her outright, a question that no mother ever wants to ask, but perhaps needs to know: Do you have hope when you see Florence? Do you think she is doing well?
Her answer: “Yes Michaela. She is doing well, very well. When I saw the diagnosis, and then met her, I had to talk with the team and let them all know that Florence was actually doing incredibly well, and although the diagnosis says one thing, she is doing another.”
I replied a little breathlessly, “Do you think she will survive a long time…because the textbooks say awful things, and I just don’t know if she is a normal type 1 or…”
“You could die tomorrow, so there is no guarantee, but, I don’t say this lightly, I do not think she will die young. I do not see her succumbing to this at an early age, because she is stronger than most babies that have this. I see her as a Ruth (she’s the girl at UBC right now).”
And right there, in the aqua blue of the warm wading pool, I shuddered, and fell into my tears, crying hard, not caring who was around. The window lent light, which felt awfully bright and blinding. Or perhaps those were my tears, laying tracks down my cheeks, etching permanent trails. I cried so hard, like I never have, because it was a cry of letting go, giving back the weight of death, undoing the shackles that have bound me since finding out about her diagnosis in the summertime.
And she cried too, she cried with me, and we cried together, mixing salt water with chlorine, two mothers bonding over the pain and hardness of life.
“This must be so hard for you,” she said between tears, struggling to stay professional.
“It. is. very. hard,” I admitted, “but you don’t know how much it means to me to hear that you have hope.”
“I would never say anything I don’t mean, I promise you that Michaela.”
We wept and smiled, and I thanked her, overcome with tenderness for this woman.
Little did she know, letting her guard down was the best possible thing she could have done for me. Because yes, I hope in Jesus, but I also think about what I would do if Florence died. And that’s probably not the wisest thing, and what mama wants to think about those things, but it creeps up on me because I’m faced with the earthly reality of having a child with a condition that could be life threatening. No, I don’t let it overpower me (ok, yes sometimes I do), but until you are in the storm, until the waves throw their claws over you, and you go under, and feel like you can’t breathe, then you don’t know what it’s like to fight this battle. I long for peace, I long for it to consume me, but it has only been 7 months since her diagnosis, and that is not a very long time. I’m also grappling with new motherhood and babyhood too. I’m learning how it all works. I’m rejoicing in the hope that Christ Jesus gives me, I’m praising him when I’m bent over the toilet bowl, pregnant with fear, and I’m learning that praise overcomes all.
It’s in those drowning moments that I need your hands to reach out to me. I trust God to tell you, because he has so far.
But there is hope. I know it, I knew it, and I will continue to believe. Hearing those words, the truth, allowed me to breathe. We discussed what could happen if Florence caught a bad cold, how the hospital sometimes swallows SMA kids whole and they never come out, but how in Flo’s case, she could (insert: will) make it because she has a strong cry and voice and her lungs seem capable. Obviously she cannot guarantee anything, but I faced some of my greatest fears in asking her these things. We talked about chest physiotherapy, pneumonia, suction and oxygen, all the nitty gritty things I’ve always wondered about but never had the courage to ask. She sees things as a medical professional, and she sees hope in Florence. I have always seen that hope, although my flesh may have failed me at times. She even mentioned that the neurologist considers Florence to be a “type 1.5”, which is spectacular. Even in the midst of these battles, there are victories, some great, some small.
My cousin Courtney encouraged me to ask some questions, and for that, I toast you, mother of my heart, woman of courage and deep wells of strength, thank you for teaching me some of the things you’ve learned in your very long journey with Asher.
Sometimes the unknown causes greater fear. It’s like flying on an airplane. If you’re afraid of it, you assume the worst when you hit a patch of turbulence because you don’t know how much the plane can handle, what the weather is like and who is actually in control. But the seasoned travellers, they know it’s just a part of the journey sometimes, and it too will pass.