pre-school

I had gotten and forgotten this fortune from a cookie back in February. I remember thinking there was a good chance this would be correct. When I pulled it from a lost corner of my wallet a month ago I could only smile at the truth.

We started the New Year with the same questions as all SMA families regarding their SMA kiddo. Have we celebrated our last Christmas together? What about another birthday? How about Mother’s Day or Father’s Day, will we “Dance in the Rain” this summer or will this storm sadly come to an end?

In January we were finishing up the paperwork to make Jadon’s Hope a 501(c)(3) non-profit and thought that would be a major focus of our year. While we tried to make it so we kept coming back to FAMILY.

Jadon’s “episodes” were getting worse and he started having them while he was comfortably on bipap. We adjusted his diet, his medication, and his routine but nothing seemed to help. He ended up flat lining 10 times; one of those times being on the side of the highway coming back from his annual checkup in Madison, WI. It was the highway episode that finally convinced us we were truly at a crossroads with Jadon’s care and we seriously began considering a tracheotomy.

It was April when we found out we were pregnant but our enthusiasm was put on hold while we waited for the SMA test. Our doctor wouldn’t perform the test until week 11, so we had to wait until early June to find out the results. We were very excited to add to our family but prayed that another child would not be affected by this devastating disease.

Our summer schedule was a whirlwind to say the least. On June 8^th we received the results of the SMA test – our baby girl was not affected with SMA!!! June 20^th we left for Minnesota to attend the Families of SMA conference; June 25^th BUG would be turning 3; July 9^th was the deadline for the IRS decision on Jadon’s Hope Foundation and Jadon’s trach surgery was scheduled for July 31^st in Madison, WI. Whew!

Attending the Families of SMA conference was simply amazing to say the least! It was worth every once of worry to make the trip to Minnesota and see so many families we had previously only met on Facebook. It was truly an awesome experience to be around so many GREAT people who are fighting the same fight.

The day following the conference The BUG turned THREE YEARS OLD!!!! We spent the day at the mall of America and had a great time seeing Jadon’s 3 year old eyes light up with excitement.

We traveled back to Madison on July 29^th for Jadon’s life altering trach surgery. They told us to plan on 2-4 weeks in the hospital but we were out in 10 days, have I mentioned “The BUG” is a superhero?

The trach brought a whole new routine to learn and many new procedures (which we are still working on). We felt comfortable enough for Jadon to start Pre-school on September 4^th and we haven’t looked back. This was a day we did not think we would see and it has been incredible. We physically attended school every Tuesday and Thursday until right before Halloween when we stopped going due to cold and flu season. However, we began Skyping with the class every day for about 30 minutes and twice on Tuesday (Music class). The teacher, his classmates and the district have been nothing short of AMAZING. We are so blessed to be attending Rolling Ridge Elementary.

On December 14^th we welcomed Gracyn Jaye into the world and into our hearts. She is truly a blessing. She is named Gracyn in honor of God’s grace and Jaye in honor of her brother Jadon.

On December 25^th we celebrated Jadon’s FOURTH Christmas and Gracyn’s first. We are so incredibly thankful for our priority being FAMILY.

Oh, and we finally got word from the IRS in December (only 5 months after their established deadline) that Jadon’s Hope Foundation was approved as a 501(c)(3), non-profit public charity. As a Foundation we plan to work hard in the fight against SMA in 2013 – building awareness, raising much needed funds and helping other families affected by this horrific disease.

And we’ll continue to keep an eye out for the fortune cookie that simply says:

“The disease will be cured”

I have given up on some dreams in my life. For instance, I used to dream of being “The Fonz” but it turns out I’m really not all that cool. I dreamed of being a male super model / international man of mystery but it turns out I’m not good looking and I’m really not all that mysterious.

I have also seen many of my dreams come true. In June of 2009 one of biggest dreams came true when I held my son for the first time. On that day all my dreams shifted from dreams OF him to dreams FOR him. I dreamed big. I dreamed really big.

Only two months later those big dreams were shattered faster than a window fighting with a little league foul ball. With an SMA diagnosis our dreams changed from years and decades to minutes and months. We no longer dreamed of college, heck we couldn’t even dream of PRE-SCHOOL. (Pre-school is something most take for granted, parents should not have to dream of pre-school.) We dreamed only of the next day and maybe the next milestone like, Christmas, Easter, or Birthdays.

Last Fall we began discussing the possibility of Jadon going to School. We hesitantly allowed our minds to wonder if it could really happen. We allowed ourselves to dream. Maybe, just maybe, he could go to school and learn, have friends, and just be a kid.

This week that dream came true.

JADON WENT TO SCHOOL!!!!!!!!

We have now gone two days. The first was less than stellar as it was all just too much to take in, but our second day was great. Jadon played, laughed, sang, danced, painted, made a paper dog, listened to a book through some cool headphones and he…..was included.

The excitement of school takes a lot out of the little fella but I can see in The Bug’s eyes that he is loving it.

We can not wait to “Dance in the Rain” at school next week. While “Dancing in the Rain” with SMA is hard we can “Never Give Up!” Definitely not on these dreams that mean so much.