to the other parents of children with SMA…this is my opinion, this is my story.
Imagine if your tiny baby appeared to be born healthy, and suddenly you received a diagnosis so terrible that you thought you would die. But in fact the doctor told you your baby would die, probably sooner rather than later, and not only that you would watch her muscles die too, all of them. You had a few short months of newborn bliss, of not knowing anything was wrong, and suddenly the world opened up and swallowed your little family whole. To top it off, “statistics say” you have a 25% of it happening again, so don’t ever have more children, just stop, just abort, just give up.
Let me clarify, we do not believe in abortion and do not support it. So for us, going forward with our family means relying fully on our God (easier said than done sometimes). Even though this journey has been incredibly painful and hard, I would not have aborted Florence in my womb. She’s my child, whether her life is two years long or she ages gracefully into her 90’s.
Spinal Muscular Atrophy is a thief; it is evil and I hate it. It pretty much tries to destroy your life, your hopes and your joy in one big blow.
It is August, a month to discover SMA, and bring awareness. I don’t like talking about it much, because there are countless blogs out there from dear families, dissecting the ins and outs of SMA, and recounting the day to day medical struggles. This blog is not like that because I started it years before any of this happened.
But, I will say that SMA type 1 is a terrible, some say terminal disease. It is not special needs. It is not something that gets better, or doesn’t get worse. It’s like ALS. I’m reading a book right now called “Until I Say Goodbye: My year of living with joy” by Susan Spencer-Wendel. In it, the author writes about her journey with her disease, ALS or Lou Gehrig’s Disease, and her acceptance of death. She wrote the whole dang book with one thumb. On her iPhone. SMA is similar to ALS. Both are destructive.
Like ALS, SMA does not affect any part of the brain, it simply steals the infant or child’s ability to move. To speak. To breathe. To do much of anything at all.
And very often, it does end up in death. Note: I have “come to terms” with this, but have no accepted it. I can’t explain it anymore than that.
These are the cold, hard facts. I couldn’t bring myself to even glance upon them a year ago, and I still get sick to my stomach when I read a blog about SMA and learn that the child has died. I get mad at myself for reading it. But so often, when I’m Googling something, like ‘GJ tube blenderized diet’, or ‘dry heaving with Bipap’, I come across SMA. And I get this odd feeling of comfort…that there are others in the world struggling with this massive disease. And then I get angry, and tired, and depressed.
So I try to stay away from researching and blogs, but sometimes, when an issue arises with Florence, I do have to. The “facts” have yet to become truth to me, and I pray they never will. For me, it does no good to accept death. I don’t need to have a checklist of what to expect, what abilities Florence may lose, and all that harrowing stuff that goes with it. But I have thought about a tracheotomy and DNR’s (do not resuscitate) and I have thought about death and end of life care. I have thought about many things that a first time young mum probably hasn’t had to think about. This is what I talk to Jesus about. The heaviness of it all. Yes, I throw my sack of garbage at Him, but sometimes the burden is so heavy, it takes some time to hand it over. I have to will my heart and hands to let go. I have to muster up the strength of the Spirit within me and say “Abba, Papa, God, ouch. This is too big.” It’s literally a physically and emotionally exhausting experience to let the burdens go. To let your child go. No, I mean really let your child go. I get it that something could happen to your kid at any moment, a car accident, a fluke. But that would be a surprise and shock—no less devastating, yet different. It’s the day to day stuff that is hard. Having to look a disease in the face everyday and move on, and say, death you will not haunt me: I’m dragging myself up this mountain, I’m getting to the top if it kills me.
My daughter, her body was made to thrive, to gain weight and be tanned by the sun. Her beautiful long legs were made to run in the dry summer grass, her toes and feet, so tiny and chubby because they don’t have muscle strength and the weight of her body on them, were made to get dirty and grow callouses.
Her baby small hands, also stunted by the lack of movement, were made to pull my hair so hard I would yelp. They were made to paddy cake slap other kids when they innocently swat her too hard, like babies do. They were made to rub the tears from her eyes and pick her nose.
Oh, yes, SMA you are a terrible cancer and I hate you.
You have taken my little baby, once able to hold her legs up in the air, and made her practically motionless. You have stolen her ability to hold her arms up, even in these few short months. It seems you are even taking her ability to swallow and deal with her saliva properly.
Right now it looks like you are winning. The statistics, so prideful and arrogant boast that SMA is:
1) the leading genetic killer of children under 2.
2) a gene carried by one in forty people–no race or ethnicity is excluded (it takes two carriers, often two parents very much in love with each other, looking forward to starting a family)
3) an autosomal recessive and progressive disease that affects all the muscles, causing the death and degeneration of the motor neurons in the brain stem and spinal cord.
4) a disease that affects infants, children and adults (type 1-4)
5) the result of a gene change/deletion or multiple changes on chromosome #5
6) without a cure or treatment
Yes, it looks like you are winning this battle, but I refuse to give up hope. You will not steal my life, my joy, my purpose. You won’t win this war. I refuse to let my daughter simply die with SMA. We will live in this battle until the war is won. And I don’t know what that looks like, but I know I’m not afraid of you anymore.
On the brighter scientific side of things, SMA was voted out of 600 neurological disorders, the disease closest to a cure or treatment in the next 10 years (some say 5, some say 2). SMA does not affect the brain, and often children that are afflicted with it are incredibly bright, interactive and social.
And on the brighter spiritual side of things, the side I sunbathe on and swim in: God is good and bigger and stronger and a miracle worker and my Father.
He’s got my back, though the world wants to tell me to forsake Him and scream at Him and ask Him what the hell is taking Him so long.
There are many, many things I don’t understand. I don’t even understand this heady cloud of grace I’m in. After all, I’m parenting a child that the textbooks and doctors tell me will die young, slowly. Never in my life did I think I would do this. This is not God teaching me, putting me through this, and somedays I think that God isn’t even “using it.”. He is just crying up there in heaven with me, weeping and mopping up my tears with his bare hands. He’s kissing me on the top of my head, pulling back my hair from my wet face, cupping my cheeks in his hands and saying, “I am hurting with you beloved, but not like you. This is not breaking me, it’s making me roar. I am angrier than you are, and I’m rallying the troops on your behalf, just hold on. Just keep going even when you can’t. I’m carrying you. This is not right, but I will make it right. Press on, press on, press on, beloved pilgrim.”
So, Jesus, you have won this. SMA has not.
And I’m picking up truth, in it’s ramshackle bundle, throwing it over my shoulder and pressing on.
As Esther in the Bible (Esther 4:12-16) says, when faced with uncertainty and death, if I die, I die. But I’m walking this path.