August is national awareness month for Spinal Muscular Atrophy.
August 25th 2009 is the day that our family became all too AWARE of SMA. Two years ago today we had a voice mail asking us to call Children’s Mercy Hospital, downtown Kansas City.
We had visited the Rehab Clinic at Children’s Mercy on Thursday August 20th, 2009 upon the recommendation of a physical therapist. Jadon had torticolis and couldn’t turn his head to one side. We had also noticed that he didn’t seem to be moving his arms as much as when he was born less than two months earlier.
We went to the “Rehab Clinic” expecting to be shown some special exercises or stretches. Instead they were handing out buckets. Buckets of tears.
We started getting nervous when the parade of doctors and nurses began.
We were instantly on the defensive, but we had no idea what we were defending.
“He sure is gurglie,” the nurse stated.
“He just ate, he’s always gurglie after he eats.”
“He doesn’t eat well does he?”
“He eats like a pig, seriously he is really loud and almost snorts.”
“He certainly has a weak cry.”
“That’s the cry he came with.”
“He has a concaved chest.”
“I have a concaved chest, you want me to take my shirt off?”
“He doesn’t cry very much.”
“He’s happy, just like we were before we came in here this morning.”
Then we heard the three words we had never heard before – Spinal Muscular Atrophy. I was still wondering about those stretches when the doctor started talking about support groups and power chairs. It was then that I finally realized there would be no stretches and the breakfast burritos and Diet Cokes I had that morning thought about making an exit.
They took his blood and told us it would take two weeks to get the results. They didn’t want to give us too much information, but because we continued to push they gave us one very vague brochure and we knew that day that our little boy wouldn’t walk. We dumped out our buckets in the parking lot, in the car, and went to our church and took several buckets of tears in with us.
The next day I woke up thinking about how fast I could make Jadon’s power chair and what color we would paint it. I wished he was still going to be the football star I hoped for but I would have taken a soccer player or a yell leader at that point. All of a sudden I was wondering if there was a power chair racing league. Regardless, we would make the best of it and that boy would have the best power chair ever.
It was Friday and we had his two month shots at our pediatrician’s office. She’s a very caring woman who immediately told us she had blocked off three hours for us if we needed it that day. We began to talk to her about the suspected diagnosis of SMA and how he wouldn’t walk. She told us she knew how we felt because she had lost a child of her own…
(Insert record scratch here) What did she just say? I thought to myself.
Kristin somehow came up with the strength to ask the question, “Are you saying we’re going to lose him?”
2 years at the most but Jadon is VERY weak, is what we were told.
We emptied a few more buckets of tears and then she gave us even more to take with us.
We made it through the weekend trying to understand. Hoping they were wrong. Praying they were wrong. Wondering why! On Monday after his first chiropractor appointment he was moving more and laughing louder, and we were convinced that the doctors at Children’s had simply made a mistake. They called on Monday and wanted us to come in to the hospital. I think they wanted to check on US. Apparently, some people lose their frickin’ minds when they’re told their child is going to die. Ya think? We told them we were not coming in until they had the results because we didn’t believe he had that SMA thing they were talking about.
Tuesday August 25th 2009 was Jadon’s 2 month birthday and we had been out celebrating life when we returned home to hear the voicemail asking us to call the hospital, they had the results. 5 days instead of two weeks? Kristin and I each got on a phone and we were holding hands when they said “Jadon has Spinal Muscular Atrophy, Type I. This is the most severe type.”
And so our journey began.
Our D-Day (Diagnosis Day) will never be forgotten. However, it was also his 2 month birthday, a date that would not have meant as much today without SMA. We now celebrate the 25th of every month as Jadon’s Day. We celebrate every day that we get with him. We have slowed down to enjoy the little things. We look deep into his steel blue eyes and see the words that he can’t form with his mouth. While we wish we could hear it, we see “I love you mommy and daddy”
Today is the two year anniversary of Jadon’s D-day but it is most importantly his 26 month birthday.
I HATE SMA
MAN, I love this little boy!
Here’s a link to a video I found on YouTube of a song that means a lot to us. Pretty powerful lyrics.