“Life is not about waiting for the storm to pass
It is about learning to dance in the rain.”
After Jadon’s diagnosis of Spinal Muscular Atrophy (SMA Type 1) on his 2 month birthday we had many decisions to make. The only easy decision was the fact that we would love this little boy with everything we have – EVERY SINGLE DAY. Only 10% of children diagnosed with SMA Type 1 live to see their second birthday. Faced with this statistic we knew it would take an incredible blessing to see day #730.
Last year at this time I remember being so worried that he would even make it to his first birthday. Starting on Monday I began praying that God would allow us to keep him just 7 more days. His birthday fell on Friday and I so desperately wanted to have that celebration, and then Sunday we had pictures. I thought if we could just get through both of those we could rest in the fact that we had a good time right to the end.
Jadon was having major “episodes”. The day before his birthday he had 3 episodes that changed his complexion to a color you never want to see your child turn. We saw single digit oxygen saturation numbers (That is NOT good). At that point I was praying for just one more day (forget the pictures).
We don’t look too far into the future and give thanks for every day that we receive. In a lot of ways Jadon is doing better than he was last year at this time. We still have tough days and an occasional episode but today, day #729, was much better than day number #364.
Today we got out and saw some animals, felt the breeze on our faces and watched the clouds drift by. Jadon absolutely loves being outside and we love seeing his eyes light up when he is.
I don’t know how many more beautiful days we will be blessed with our little boy, but we plan to celebrate every single on of them.
Bring on day #730! Happy Birthday BUG! We love you so much and we are proud to be your parents!
We will dance in the rain…he is alive, AMEN!
Please check out the slide show below.