A year ago.
A year ago Ella was 10 months old.
It was the first time that we started thinking, "something isn't quite right".
I can't believe it's been an entire year since then.
I will never forget how I felt during those few months.
I wasn't scared. To be honest, I wasn't even all that concerned.
I just thought that there was a developmental delay. A delay that she would outgrow.
So she couldn't crawl. And she couldn't stand. Or walk. And she was incredibly flexible.
But every baby develops at their own rate, right?
But still, something was just "off".
I remember talking to her pediatrician about it. Ella was classified as having "hypotonia" (poor muscle tone). So we started some physical therapy to see if it would help. We all assumed it would.
After about two months, not only was Ella not improving, but it seemed that she was getting worse. Her therapist was concerned that something could be wrong.
At Ella's one-year appointment, she was referred to a neurologist. Many thoughts crossed our minds...brain tumor, Cerebral Palsy, etc.
She had an MRI of her brain. Normal.
She had a full metabolic workup. Normal.
Then there is that night I will NEVER forget. I was at my computer in the dining room, searching for some sense of what could be going on in our daughter's body (something I did quite frequently).
I Googled "hypotonia and hand tremors" (another strange symptom that Ella had).
One of the first search results was "Spinal Muscular Atrophy". Something I had never heard of.
I clicked on the link.
I read. And I gasped. She had EVERY symptom.
I ran to the basement (with my laptop in hand) where Michael was in the office. I read to him the description of this unfamiliar disease, SMA. I remember shaking while I was reading the description, which was basically summarizing what Ella was experiencing. I got to the prognosis. There is no treatment or cure for SMA.
And then I remember telling Michael..."This is the ONE thing we DON'T want it to be".
Unfortunately, we all know what happened next. After an abnormal EMG test that further supported SMA, the genetic test was done. And it was positive.
It's so weird thinking back to those moments a year ago. Thinking that she was just a little delayed. Thinking she would "catch up."
Right now, for some reason I'm having a really hard time thinking about those feelings I had a year ago. Knowing something was a little "off", but not yet knowing the reality of what we would be facing for the rest of our lives.
Thinking everything would be fine.
Thinking, "these kinds of things don't happen to OUR kids".
And now I look at our life. It is SO unbelievably different from how I ever imagined it could be just a year ago.
A year ago...
Ella, 10 months old:
Ella, 22 months old:
Ella, 10 months old:
Ella, 22 months old:
