SMA: August is SMA Awareness Month


SMA Awareness 2015

August is Spinal Muscular Atrophy Awareness Month. This is the disease that took my daughter’s life, and is taking the lives of innocent babies all over the world, every single day. SMA is like ALS, but in babies. 1 in 6000 babies a year are born with this rare genetic disease. There is NO treatment or cure. 1 in 40 people are carriers of this deadly disease. If two carriers have a baby, they have a 1 in 4 chance of the baby being born with SMA. Currently, SMA is NOT part of the newborn screening process.

Educate yourself by visiting these informative sites:

Getty Owl Foundation
Gwendolyn Strong Foundation

Donate to CureSMA.

Mothers Day without my baby

Mothers Day was not an easy day to get through. I kept thinking that, at this time the previous year, we had taken Khloë to the Toronto Zoo and spent the weekend with her Aunt Crystal and Uncle Lukas. And then this year… she is gone.


Memory for Mothers Day

I was happy to see that quite a few people wrote special messages about Khloë on my Facebook Timeline. I also received some texts from friends who have not forgotten my little girl. The above picture is not the best quality, but it is one of my favourite “selfies” taken with my Sweetpea. Her smiling face says it all! She was a shining star.

When all you’ve known is SMA

I was washing dishes this morning and thinking about Khloë and then about the new baby. And I realized that this time around, if this baby is healthy and does not have SMA, then our life will be filled with all these milestones that we’ve never experienced before. How crazy is it that, as a second-time mom, I have never had the joy to watch my baby grab for a toy within her reach? I never saw my baby learn to roll over or sit by herself for the first time; she never crawled or pulled herself up to standing; she didn’t even take her first steps or learn to feed herself. All of these little things will be brand-new to us.


Mommy and her girl

Beauty

Instead, we watched our baby grow taller but also weaker. She had her first surgery at 8 months old–a feeding tube to allow her proper nutrition. Then we learned how to operate a Joey feeding pump, clean out feed bags, prepare formula, and care for her tube site. After that intervention, to help prolong her life, came the BiPap machine and another hospital stay. Any time Khloë took a nap or went to sleep for the night, Mommy or Daddy would put the Pixi mask on her face, check the leak, make sure she was comfortable, and then off she would go to dreamland. By the time she was 11 months old, she was requiring us to suction her mouth and throat much more often; this meant she was losing her ability to swallow. Twice a day, we would perform a cough treatment to make sure all the yucky stuff in her lungs got out because she couldn’t cough it out on her own.

All these things, they were Khloë’s special milestones.


After gastrostomy surgery

But I had the most amazing daughter. She liked music and loved it when Daddy helped her play xylophone or strum a guitar. She enjoyed watching “The Magic School Bus” and “Chuggington” on Netflix. She especially liked when one of us would dance around with her in our arms! She would lay contentedly on her ottoman, playing with her Do Not Enter sign and Sharkie, until she dropped one of them; then she would wait patiently for Mommy to pick the toy up and give it back to her. She rarely complained or cried. She was always so happy, no matter what we did during the day. Her giggle will always be the cutest thing I have ever heard. I think that’s what I remember the most.


Playing the xylophone

Things are going to be very different when the new baby comes. I think we are up for the challenge!

A new beginning

I haven’t updated in a long time and I hope that I can begin to get things back to normal around here. I loved putting together the weekly updates about Khloë, and now that she is gone I haven’t felt the call back to this blog. But today I want to start again.


My angel's resting place

My angel’s resting place


On April 11th friends and family gathered at the Willowbank Cemetery as we buried our sweet little girl. The sky was blue, the snow was finally gone, and the leaves blew in the breeze. The weather was perfect and allowed us to say goodbye in sunshine.

Afterward, everyone came back for a small reception at the church Jordan and I were married at. Some amazing people provided sandwiches, fruit and veggie platters, and desserts. We are thankful to each person who came out to let us know how much Khloë touched their lives.

We also recently announced to the world that Khloë is going to be a big sister! As of today I’m 12+4 weeks pregnant and my due date is November 2nd. 🙂


Big Sister

I used the above image to make the announcement! This was the surprize we had for Jordan’s parents, too. I texted my mother-in-law that picture right before we boarded our planes (in two different cities) and she was so excited that she had to tell some passengers on the plane. 😀 Needless to say, we are all excited! Don’t get me wrong, there is definitely a scary aspect to this pregnancy, but I’m determined to stay positive and believe that God will give us the baby we need.