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 8th we received the results of the SMA test – our baby girl was not affected with SMA!!! June 20th we left for Minnesota to attend the Families of SMA conference; June 25th BUG would be turning 3; July 9th was the deadline for the IRS decision on Jadon’s Hope Foundation and Jadon’s trach surgery was scheduled for July 31st 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 29th 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 4th 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 14th 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 25th 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”
Jadon's Hope Blog 