This post is written by Ethan, Ezra’s dad…

February is a dark time for our family, or at least it has been over the past few years.  Four years ago today we lost our son Ezra to Spinal Muscular Atrophy (SMA); he was 8 months and 6 days old.  Time is supposed to heal all wounds, and I guess there is truth to that, but on anniversaries like this one it feels right to let that wound open a bit to reflect on Ezra and feel, as deeply as I can allow myself, this sadness and loss. 

We never had anything like this growing up, no traumatic events to commemorate.  It wasn’t until I met Emily (whose mother and grandmother both died within a year before I met her) that I started to see what these anniversaries were like.  Even then it was foreign to me, holding her in tears as she let herself feel the loss all over again like it just happened.  All I could do was be supportive and quiet. 

Now four years after Ezra died our home is filled with photos of all our kids, including Ezra.  We even have a sonogram of Leo.  We have a collection of heart shaped rocks that have become a fixture on the counter, and our basement has all of the Hearts for Ezra signs and gear for our events that we put on.  It’s easy to see all of these things on a daily basis and maybe have them lose their meaning. 

But looking at the photos of Ezra, and one series of photos in particular, I remember going to Portland to do a family photo session with the husband and wife team that did our wedding photos.  I remember that day so vividly, smiling and trying to hold Ezra upright (since he couldn’t sit up) so we could get some great shots.  And we did.  I also remember the sadness and dread of thinking how someday all we would have would be these photos.  And now that’s true.  They hang on our walls, and I walk by them daily, but today I will take a moment to look a little longer and think about that little nose, that funny laugh, that red hair. I’ll try to let myself feel.   I am also thankful for Jeff Dachowski for these photos that will forever capture that very precious moment in time for our family. 

The pile of heart rocks on the counter is in the worst place in terms of counter space management.  It’s actually a little smaller than it has been, but if you look in a few cabinets and in the garage you’ll find dozens upon dozens more.  It’s part of our home, a pile that I see every day and at times it’s just in the way.  But today I’ll read the names or places written on each one and remember that each rock was given to us by a friend to send their love.  I try not to lose sight of the fact that our story touched people in our community as well as from all over the country.  Through Emily’s blog people learned about Ezra and SMA, and we still get rocks and photos of heart shaped objects sent to us often.  When we go to the cemetery Ezra’s headstone is pretty unique; covered in heart shaped rocks left by visitors, most with names or places written on them.  I feel grateful to all of our friends and community, both here, in Austin and across the country (the world even) for being thoughtful, caring and supportive. Because of you I try to be more empathetic to those going through tough times and loss, and I hope to be able to offer even a fraction of the love and support that we were given by you, our friends.

And the Hearts for Ezra signs that we tuck away after each event were made by dear friends who answered the call when we started a foundation to raise awareness to fight SMA.  We, like some other families who lost children to awful diseases, wanted to help make a difference in the world, to bring something good out of our unspeakable loss.  We started Hearts for Ezra before Ezra died and really didn’t know what impact we would have, but we wanted to do something.  Now, four years later, we’ve raised over $40,000 for Cure SMA and Emily and I have shared our story (and the amazing video that my cousin Matt Thompson created) with groups from Maine to California.  Within the past few months there have been promising developments in drug treatments being approved to slow the progression of SMA.  We are rightfully sad that this wasn’t a possibility for us with Ezra, but there is some satisfaction in knowing that our small part made some of this possible just a few years later, and that other families may not have to experience what we did.  Those signs and banners and hula hoops and donation buckets are in storage now, but today I’ll reflect on the community that came together to help us raise awareness about a disease that very few of us had ever heard of before.

This may be a dark time of year for our family, but we have bright days ahead.  At the risk of sounding like a commencement speech, today is a day that I look back at what was and what happened, but also look to what we have now and what is to come.  I miss my boy.  I wonder what he would be like or how our lives would be different had he lived.  I wonder what Leo would have been like or if he would have looked like Daisy, or Ezra.  I am so thankful for our Daisy, our loving, empathic, energetic and funny 7 year old.  I am so lucky to be dad to both Daisy and our little Ruby, who greets me every day when I come home with a squeal and “Dada dada!”.  And I am forever in awe and in love with Emily, now more than ever.  We let ourselves feel the pain of this wound and look back with heartache and sadness, but also with happy memories and gratitude for everyone who has stepped outside of themselves to lift us up. 

“And the days that I keep my gratitude higher than my expectations. Well, I have really good days.” – Ray Wylie Hubbard

ethanezra