As most, if not all, of you have probably heard or read or seen by now, baby Avery passed away from this world on April thirtieth. And I wept as though I had lost a close and dear friend, or rather my closest friend had lost her child. The way Avery's parents shared their story with the world, the way they gave their five month old daughter a voice- one that hundreds of thousands of people have been able to hear and respond to.
I am blown away by the strength the Canahuati family responded to Avery's diagnosis. They hadn't been wrestling with the horror of SMA and what that would mean for their child since she was born. They became aware of their daughter's disease and jumped into telling her story. They made it a priority to LIVE life with their precious baby girl, and to share those moments with anyone who would listen. They welcomed us into their homes, and made us feel like we were living life with Avery.
The news of her life ending stopped the breath in my lungs. It hit me like a semi-truck. And then, I wept. Heart wrenching gutteral sobs over a life that ended. Far. Too. Short. I never met her, but I feel like I know her. I feel like I have had that mother to mother conversation with the remarkably corageous woman who is her mommy. It's as though they are dear friends, and we are mourning this loss as we would an intimate relation.
(Baby Avery's last picture, still smiling)
And so, at a time like this, words have escaped me. I want to say something, but there is nothing to say. I want to give something, send something, but what? Avery's blog is still keeping everyone informed on ways to donate to the cause for finding a cure and spreading awareness of SMA. And, if you too are struggling with wanting to surround this family with support but are unsure of what to do or where to start... You can start with a donation, one that will be matched dollar for dollar for up to $500,000.00. Read her blog for more of the details. And continue to share this child's story with anyone and everyone. Talk to your child's pediatrician about newborn checkups, talk to your obgyn about getting tested to see if you are a carrier, talk to the hospital you deliver in, talk to your insurance company, talk to the stranger in the checkout line.Continue in prayer and support for this amazing family who have taken an unfathomable heartbreak, and used it joyfully to make a difference in the world of today. I did not have the blessing of meeting baby Avery in her lifetime here on earth, but I must admit I look forward to meeting her one day... Don't you?
