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Monday, October 26, 2009

What a difference a year makes

Today, we're preparing to pack up our (former) dream house and getting ready to move to a need-to-have-a-single-level-in-order-to-accomodate-pediatric-wheelchairs house.

But one year ago today, we found out our sweet twins have Spinal Muscular Atrophy, a genetic and fatal disease.

What a surprising turn of events.

Getting the diagnosis of SMA is a death sentence for about half of the kids who are diagnosed. These are real, live, cooing babies, just like your baby, and your baby, and your baby. My twins are just like any other two year old in most ways--they love to spot airplanes in the sky. They adore The Wiggles and Baby Einstein. They prefer to play with my cell phone and a big box of Kleenex (to rip the tissues out of, of course), but will settle for wooden puzzles and blocks, and they have tea parties (while strapped into chairs on the floor so that they don't fall out). They really love to swing on the swing set outside. They adore their big sister and their Aunt Kimmie and their grandparents. They started out completely normal, and we parents had no clue anything was wrong. But we now that we're incredibly lucky that they are even as strong as they are.

Statistics on SMA are that 50% of SMA babies die before age 2. How both of my twins both fell on this side of that 50% is beyond me. I struggle daily with the question about why my kids are alive and kicking--well, not literally kicking, but they can wiggle their feet--while other kids with the same disease don't make it a year or even a week here on Earth. I'm no different than their parents--just as clueless, just as hopeful, just as surprised to learn that my kid won't grow up to kick a ball or annoy me by leaving the refrigerator door open one day. On a daily basis, I mourn the loss of all the babies I know of who have died since my babies were diagnosed--Logan and Zane and Kayden and about twenty others, at least--and I grieve for their parents. And for the thousands of babies who died of SMA before I knew what SMA was. Each of those children was a gift to the world, and SMA stole them away from all of us. SMA overwhelms me most days, you could say. I never even knew the disease existed until the twins were diagnosed. Now, I wake up several times in the night to turn over my children's bodies because they can't do it on their own, and they could get sores from laying for so long in one position. It's sure not how I pictured raising twins.

We had no history of SMA in our family trees before the twins were diagnosed. But 1 in 30 people are carriers for the gene--regardless of race, ethnicity, or continent. You could be us. And while SMA is a tragic diagnosis, one thing is for sure--when it comes to SMA parents, never have I met such wonderful, down to earth, funny, compassionate, sweet, smart people. I mourn my childrens' diagnosis, but with their diagnosis came the friendships we've made with such wonderful people. I know that sounds cheesy, but it's true. We never would have found these people without the commonality that this dirty, rotten scoundrel SMA has provided.

I've been thinking about it all. Life didn't really play out the way we had planned. But I still say it's important to make plans for your future--Good things don't usually happen to people by accident. We have to be responsible and work hard and save and make good decisions to make that happen. But in this case, despite all our responsibility and working and saving and good decision-making, life threw us something we never expected and sure didn't want. Maybe we'll embrace it as an opportunity, or maybe we'll never accept it. It has challenged our expectations. It has frustrated us, and challenged us to become better people. I'm allowing myself to wallow and indulge in lots of self pity occasionally. I think about presenting my arguments to God and beg Him for an explanation. But sometimes, I just sit back and try to realize that regardless of our thought and planning, or lack thereof, sometimes things happen and it's just not fair and it's not our fault. And then it's time to gather all our energy to make a positive difference and help kick SMA's ass.

I am convinced that SMA is curable. Plenty of experts agree. The NIH recently listed SMA at the top of it's list of priority diseases to receive funding because they feel that the disease is so close to finding a cure. And a cure for SMA could lead to cures for various other neuromuscular diseases, as well.

Families of SMA raises money for research grants to places like UC Irvine, Duke, Johns Hopkins, and Ohio State to find a treatment or a cure for SMA. Help us in our efforts to support FSMA by throwing a few bucks to Team Double Trouble before 11/21/2009.

As an aside...if you haven't met the twins, you really should. Actually, you should meet all three children. They are all completely charming and unique and adorable. I try to represent them here as fully as possible using photos and You Tube, but it's not the same to hear them speak and laugh in person. I hope to meet many of you SMA folk at the next FSMA conference next June in nothern California. But to anyone else, if you haven't met my children then you are missing out. They are angels on Earth, I swear it.

God bless us, everyone! ;)


  1. beautifully written Cassandra. I can only imagine what you face daily, and hope that in some small way I can help. Hugs on this bittersweet day.

  2. Your words express many of the feelings I experience as the mother of a child with SMA. I, too, am praying for a cure! I hope that I will get to meet your twins in June at the SMA conference. We really, really want to go and meet other amazing families like yours! I agree, I hate SMA with every fiber in my being, but I do love all the wonderful friendships I've made. That alone has made this disease more bearable.

  3. So artfully and poignantly written, Cass. What a gorgeous and courageous family you have. Going to donate now. Peace, Sister.

  4. Thank you everyone, for your moral support. It's so helpful to know that at the very least, there's someone out there in the blogosphere reading the wee bits I have to say at all. And it's amazing that so many have contributed to our cause, especially in a time of year when so many worthy causes are soliciting, also. Thank you, from the bottom of my heart! xoxox

  5. I'm so glad you included a link to your blog on Twitter. And, yes, I would love to meet your children some day.
    Nana Barb

  6. Cass, I love your blogs. Your wit, humor and trueness shine. You know I learned something too that I was not expecting when my boys were born, I can relate to you on that aspect. Thanks for this post and I am gonna link it up on mine for other parents to read too.

    I will be dropping some money your way here after I get paid on the 30th.

  7. Here is what I put up.......hope it is ok, Cass.

  8. I don't remember how I found your blog (it's been sitting in the dock for a few days waiting for some attention!), but I'd like to add it to the SMA Families page ( linked to a blog I'm doing with a good friend/fellow SMA mom (

    All I need is permission :)


    PS - Your children are beautiful!

  9. I came acros your blog and wanted to say Hi! I, too, have a child w/ SMA. Hopefully we will be able to meet up at the 2010 Conference! ~Mary

  10. Hi Cassandra!

    I got the link to your blog from Monica at BBC. What beautiful children you have and how lucky you are to have them. I live in Northern California, what area are you in? Maybe we can meet up sometime and our kids can interact! My daughter is also a July 2007 baby.

  11. Hello Cassandra,
    I learned about your blog from Monica Eberhardt. I hope and pray that we will find a cure for SMA. My husband and I regularly donate to Families of SMA and will continue to do so every year in memory of our beautiful and missed nephew, Monica's son. Your children are beautiful and I wish you and yours only the best that this life has to offer.

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  13. Love and hugs to your beautiful family!

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