On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away — a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.
And while I try to sit with the thoughts of him now being able to run free, of him no longer struggling, of him at peace, I find myself feeling that he should be nowhere else but in his mother's arms. I feel angry. I feel crushed. And I feel deeply sad knowing that such a loving family is aching.
Whit and Lindsey are wonderful parents. They are amazing people and we are honored to call them friends. They are honest, brave and so beautifully loving, showering Jonas with so much affection and so many wonderful experiences. When Jonas was still a baby, we were in awe that they took him on his first trip to Disnleyland (and from Utah where they live, this is no easy feat). That was just the first of many more Disney trips. And they took him on other fun adventures: swimming, boat rides, beach trips, and time surrounded by adoring cousins. And when they were home, they created sheet forts, bicycle rides, and fun experiences for him. Jonas was clearly a very loved little boy. And we admire and respect the Coleman family and their outlook so very much.
For a long time Bill and I blogged about SMA being terminal. We were preoccupied with the when and the what ifs. And we wrote a lot about losing Gwendolyn as a way of processing our grief and our fear. And then somehow the “when” stopped being our focus. Sure it cropped up as we had various scares, but it no longer was the undercurrent of our day to day living. We were able to let go a bit and simply live. But, losing a friend like Jonas rocks us to the core. And although funerals are part of the world of SMA, somehow you learn to cope. We have never become accustomed to them, but somehow you learn to carry on. But, when it is a friend, someone you have watched grow, someone you have met, someone you have connected with, someone you have learned from, someone the same age as your own child, well the mind can get stuck again in the what ifs…in the grief.
I have so much hope in my heart. I hope with every single ounce of myself that this disease will be cured. I know it will be. But… in the meantime, SMA is a terminal disease. And while I hate this fact more than anything, SMA currently means funerals…for babies and children…far too many of them. It leaves me deeply, deeply sad…raw. And while I believe with my whole heart that the prognosis of this disease will some day be very different, currently it is fatal. And that is simply too much to bare at times.
We are thinking of you Whit, Lindsey, and Maggie. And we will always hold your sweet Jonas in our hearts.