If tears do not well up , you can not be Human.
Avery was diagnosed with spinal muscular atrophy, a genetic disorder that attacks spinal neurons and progressively debilitates muscle function. Avery’s was Type 1, the most severe kind, and doctors told them their little girl had only 18 months to live.
“We had several days of sitting in shock and crying and then we pulled ourselves out of that,” Laura said. “Since we had such a short time, we knew we wanted to make the best of it.”
To cherish every moment with Avery, the Canahuatis created “ Avery’s Bucket List,” a blog written from Avery’s perspective where they chronicle her world and track their family adventures, checking things off from the bucket list as they go.
The bucket list includes milestones in every child’s life – from sitting up, kissing her mom and dad, to having a birthday party, meeting Santa Claus, losing a tooth, visiting college and more.
“We have our days, it’s not that we don’t,” said Mike Canahuati, 31, who writes the blog in his daughter’s voice. “The blog made it into … ‘Let’s go to the Canahuatis and smile at Avery and appreciate life instead of crying.”
“I have a lot of living to do in just a little bit of time,” Avery “writes” on the blog. “In everything I do, the two most important things are that I’m spending time with my mommy & daddy, while at the same time spreading awareness for SMA.”
Now to the child’s Blog by The Father.
Each time I post an update, please share my story by updating your social networks, e-mailing all of your contacts, and talking to your friends/co-workers. And to all my girlfriends out there, tell your Ob/GYN about my story and maybe they’ll routinely start offering SMA testing. If we can help save a few of my future friends and their mommy, daddy, and loved ones from SMA, then my life, while cut short in time, will be beyond fulfilling in stature.
My mommy and daddy tell me I’m more of a morning person, because I’m always smiling when I first wake up. I never really paid much attention to it, but I suppose after seeing my morning photo compared to my mid-day photo, I would have to agree.
This much I do know, my oxygen levels and heart bpm’s (beats per minute) are almost always lower in the early mornings, mid-day, and evenings than they are in the late morning. I think I’m going to have to give up my late morning soap opera‘s, because my oxygen drops and my blood pressure rises whenever I think about the fact I’m relegated to watching All My Children re-runs. And don’t eeeeeeeeeeven get me started about how Susan Lucci only won 1 Emmy after being nominated 21 times.