when your child has SMA: this is motherhood too.

August 15, 2013, Michaela Evanow, 16 Comments

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.

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DSC_0482newborn Flo.

2013appleblossomfamilies051-0011 year old Flo.

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.

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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.

standing frame smaFlo at 17 months.

16 Comments

  • Reply 40+ years and not dead yet April 11, 2018 at 11:32 AM

    I was born with SMA Type 1 or likely Type 0, but with a milder form that did not progress much. I am 41 years old. I walk with crutches and drive an unmodified Chevy Blazer. I have navigated the NYC and NJ Turnpike, which I feel is a rite of passage for any small town motorist.

    The linear axis typing nomenclature oversimplifies and confuses things and is a complete and total arbitrary fabrication. The symptoms experienced vary in 3 axis, not just one or two. 1) Age of onset. 2) Severity at onset. 3) Rate of progression. These are all independent if each other.

    Age of onset will primarily affect the bone growth and configuration (muscle contracture modifying hip geometry, leading to premature and excessive wear, for instance).

    Age of onset will also affect family experience and psychological development. Parents overwhelmed by ignorance, fear, and despair, (often misinformation from doctors, and ovsession with negativity), often take out their frustrations on the child and may end up emotionally and physically abusing it. Other kids will bully your disabled child. Some will attempt to murder it (forced to dig my own grave and be buried alive, softball sized rocks thrown from the edge of a 60’+ chasm as homophobic slurs are yelled, because I was holding my brother’s arm to navigate Purgatory Chasm in Sutton, MA, a truly beautiful place, or others may rev up car engine, cross double libed road, yell homophobic slurs, and attempt to run me over on sidewalk, simply because I wanted to go for a walk on a nice day) for fun (and later in life some of these sociopaths will be celebrated by your family as heroic Navy Seals – true story). The disease may not affect intelligence, but it absolutely does effect the mind to be perpetually treated with bigotry, fear, hatred, otherizing, exclusion, abuse, institutionalized discrimination, and ifnorant, fearful, insensitive and self-centered strangers and family members alike.

    The OP repeatedly expresses hatred of the disease, calls it evil and a thief. This parent is harming the child WAY MORE than the disease EVER will, and she needs to STOP and pull her head out of her own selfish “dark hole” of “stinking thinking”. Your child IS THE DISEASE. To say you hate the disease is to say that you hate your own child’s very genetic composition. YOUR DESPAIR, YOUR RESISTANCE, YOUR FAILURE TO ACCEPT, AND YOUR UNCHECKED HATRED, ARE THE TRUE THIEVES HERE. Your child is the embodiment of compassion and acceptance, in that they will test whether such things exist in the souls of all they meet, and through your child, people will have the opportunity to bring such miraculous human traits into existence. It is not an easy life or fair, but it is A VALUABLE AND WORTHWHILE LIFE, no matter how long it is.
    Your child will instantly see the character and the soul and the WEAKNESS or STRENGTH of all who gaze upon them. Your child will always see an instant reflection of a person’s true self. There is one and only one right behavior here. Acceptance. Love your child. Accept the miracle of life. Love the disability. Stopteaching your child such destructive shame, dependency, and stop destroying their sense of self worth. Your child is happy to simply be alive, to be loved, to experidnce as much of life as possible. Stop stealing your child’s joy and stop crapping on this miracle.

    Severity at onset may be severe or relatively mild (as in my case). It is reasonable to prepare for the worst, but it is criminal to bring about this self fulfilling prophecy of the worst being the ONLY possible outcome. The severity at onset could be very mild! The absolute worst thing to do is allow yourself to become obsessed with pity and despair that your child “is not normal”. Your child is just Gosh darn FINE, TYVM! To you child, the only thing that is not normal is how everyone else treats them as not normal just because they are DIFFERENT. Different is not a bad thing. We all die sometime. Why be so attached to an obsession about a normative life to the point that if your child does live, you rob them of joy? Better to have a short and wonderful life than a long and painful and miserable one because the parents failed to nut up and act like adults and teach proper living skills and confidence and independence.

    Rate of progression of the disease is the third axis, and that may also vary wildly. My form has slowly progressed, despite earliest age of onset.

    We all have one choice at any given moment in life: live or die. I would like to keep on living, and I would like to do so without being surrounded be emotionally and spiritually dead people. Accept me as I am. It is really simple. I am just a person. If I ask for help, give me help. Other than that, stop making assumptions about how you think I feel or what I think of what I am capable of. If you can’t get your head right, then please get the hell out of my way and out of my life, because it is people like you and attitudes like this fear and ignorance that hold me back and hurt me WAY MORE than the headache I have had for 28 years, 24/7, or the hip, knee and back pains I have had 25 years, 24/7. These are just teansient experiences. Sure, maybe they last a lifetime, but LIFE ITSELF is a transient experience. Stop living in fear of both life and death. Just “walk” through life with faith, and KNOW that it is RIGHT and GOOD, no matter WHAT the transient experiences or arbitrarily imposed normative expectations of others might be. The permanence of this experience will be the quality of soul and of mind, the myriad ways in which us special people will touch the lives of all we meet, and show them simply a reflection of themselves. What you see in this disease is reflective OF THE OBSERVER ALONE and has nothing whatsoever to do with the “diseased” person. Own your own spurit and stop projecting your weakness and toxicity upon us. You only diminish yourself in the process. Choose to be elevated by our presence. Enjoy the gift of compassion. Enjoy the gift of gibing thanks for all the things you take for granted. Enjoy our often extremely keen intellect. Enjoy our peace and serenity simply to feel the joy of existence. Enjoy the opportunity to have your weaknesses revealed in no uncertain terms, that you may release yourself AND THE REST OF THE WORLD from them. The world can only be made manifestly better by our existence. So just stop your negativity. Please and thank you.

  • Reply Veronica Brotons January 16, 2016 at 11:49 AM

    Hi, they just told us that my daughter Emma Sofia has SMA LED. Is like the sucked the life out of me and my husband. She just turned 5 month old and is our little angel, she is always laughing and talking to us. she is finally copying my sods and she has the biggest eyes in the world, everybody is always complimenting her eyes and all of her expressions. We don’t know what to do or think. I would like to meet people that are going through the same… I love your strength and love towards the problem. they are telling us the risk of the g tube surgery, since she got pneumonia. WE are never going to give up on her, but we want to give her the best quality of live as possible and not be selfish. We don’t know what is the best choice… All we know is that she will always be loved

    • Reply Voula May 28, 2017 at 1:39 PM

      Hi Veronica..my son had sma type 1. It is really hard finding out that your precious has to live a life like that.there are no words to describe a morher’s and a father’s feelings.I m trying not to break down…I m so sad…I cannot enjoy motherhood….I have become a 24/7 nurse…
      The minute he smiles back at me…I forget everything…I just want him to smile all the time

  • Reply Ngozi Iworah January 5, 2016 at 4:32 AM

    I am with you my dear, I have a daughter who turned five (5) today 1/5/2016 with SMA type1, and I am not giving up on her. She’s the most adorable creature heaven ever made. Jesus has the final say.

  • Reply Sad Dad June 20, 2015 at 2:31 PM

    My wife and I are currently waiting on a diagnosis for our 14mo for what we strongly fear is SMA type 2.

    Your article has me bawling uncontrolably. Trying hard to pray to a god that I dont know if I believe in. Desperately looking for some form of faith to help me through this unimaginable nightmare.

    Anyone who reads this. Please pray for any little ones suffering from this disease. Maybe… just maybe… it will help.

    • Reply Leanne July 7, 2015 at 9:35 PM

      Saddad, we are in the very same boat as you with our 14 month old daughter. Waiting on the results of the blood test as we speak. I will pray for your child when I pray for my own. It can’t hurt.

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  • Reply Brie August 19, 2013 at 10:19 PM

    Once again leaving me in tears. Your description of what you think God is thinking/saying to you is the most wonderful description of how God feels in our suffering; I’ve never heard that said any better. I believe he is feeling exactly the way you described it and he will most certainly ‘make it right’ This is random, but in church this week, we read 1 Peter 1:5-7, and YOU popped into my head, because you are persevering through God’s power, your faith is genuine, and you bring glory to him through it. Thank you for your words and praying for you as always.

    • Reply Michaela. August 24, 2013 at 1:25 PM

      Oh wow, thank you for sending that verse. It’s a blessing to hear from you!

  • Reply Emily August 15, 2013 at 11:26 PM

    Incredible words Incredible mama.

    • Reply Emily August 15, 2013 at 11:30 PM

      You write with such power and truth…GOD BLESS YOU AND FLO

  • Reply Jeremy August 15, 2013 at 1:32 PM

    Her perfect smiles are remnants of a victory won long ago. We’re passing love and blessing on to you in the spirit.

    • Reply Michaela. August 15, 2013 at 7:51 PM

      this made me smile. and cry. thank you.

  • Reply Arlene Holland August 15, 2013 at 12:59 PM

    Just loving you , your family. Arlene from CPC

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