Monday, March 1, 2010


(Charlie, 4 1/2 months with daddy. Photo by Cindy Penner)

So, it's been a bit of a rough week. I think starting this blog and making the video of Charlie (which i've watched crying, a MILLION times) really made things real. it's weird, this blog is to express my emotions about Charlie and her SMA diagnosis, yet I'm trying not to sound too depressing...I don't want to bum anyone out (if anyone is actually reading this) and I don't want to be pessimistic, but I want to be real and honest, and a lot of days, this REALLY sucks. To be honest, I'm often jealous of your healthy children...sometimes bitter, and almost always I feel right ripped off in life. I stare at families with two or three children and think, "wow, you've won the genetic/chromosome lottery, I hope you know how lucky you are." I stare at kids running around and think about neurons and synapses and all that it takes to perform this miracle that we all take for granted.

I'm ashamed to say that when I found out I was pregnant the first thing I thought was, "I hope it's a girl." Not, I hope the baby is healthy. And, throughout my pregnancy I almost never even worried about whether or not Charlie would be healthy, I just hoped she'd be cute and colic free. I just assumed perfect health was a given...I mean, drug addicts have perfectly healthy babies all the time...I took my vitamins, avoided sushi, non pasteurized cheeses, alcohol, drugs, and cigarettes, what's to worry about? I would often break mine and Matt's faces down and dream of what she'd look hair, Matt's ears, my lips, Matt's eyes, and so on...never considering that none of that even mattered if she wasn't healthy. Needless to say, she came into the world more beautiful than I ever could have imagined, but also, more unhealthy than I ever could have imagined.

Today Matt and I went to genetic counselling. They broke down how SMA works and explained how we were most likely both carriers and then took down our family history's. When we were each going through our family history I thought "wow! it really is like winning the lottery when you actually have a completely healthy child...and it shouldn't be taken for granted!" I actually feel like we're all lucky to make it to any age...and we should really appreciate and enjoy ANY time we have! But, I can't help but feel a little guilty and a lot tainted about carrying this "bad" gene around...I feel like my genes come from the wrong side of the tracks. I know it's ridiculous to think that, but the thought just nags at me, and I often wonder if any one's judging us because of it.

We were told that we have a one in in four chance of conceiving another child with SMA, and today the counsellors explained the different testing we could do to find out. One test (CVR?) we can find out at about 12 weeks along, and we have a 1/100 chance of miscarrying from, and the other test at about 19 weeks with a 1/200 chance of miscarrying from. And, if the test comes back positive, we'd need to discuss where to go from there. So...pretty heavy duty stuff to think about.

All and all a pretty heavy week. We are really looking forward to Hawaii! Let the countdown begin...5 days to go.


  1. Cher and Matt,
    You have every right to feel the way you do. Anyone else would also feel bitter and angry if in your situation. Just know that children ARE in your future and that you two are amazing parents.
    We love you!
    ~Your friends

  2. Thanks Tschess and Galen! Love you! xo

  3. You have a beautiful baby girl! I will keep you and Charlie in my prayers. You sound like remarkable parents. My son and his wife have just gone through months of crisis with their little boy and a bad heart. He was in Childrens hosptial for three months, most of the time on a ventilator, he endured three open heart surgeries, a bowel surgery, and several complications at the tender age of 5 months when it all started. I think he came home on the day he turned 8 months. that period was just so full of ups and downs, life and death situtions, and many emotions. What an incredible facility Childrens is and the staff in the ICU were fantastic. He still has many hurdles to jump, but he is home.
    I wish there was something i could do to help you, Bryndis had told me about your situation. Please give Charlie a kiss for me

    Mhora Ogmundson

  4. Thank you Mhora! You're right, Children's hospital is amazing with wonderful staff! And we are fortunate to live 10 minutes from it. I hope your grandson is doing well! Thanks for your kind words.

  5. i found your blog through a blog...i had a daughter in september and she has down sydrome. my husband and i did the genetic testing recently and i carry the SMA gene. hence me finding your blog. my daughter having Ds does not compare to your situation but i can relate on a emotional level. my husband still says occasionally "it's amazing to me how you have crack heads having healthy babies and we are completely healthy and we have a baby with Ds." not that he doesn't love our daughter, it's just mind blowing how things turn out sometimes.