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Thinking of Jonas

November 22, 2010 by Victoria Strong

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.

Talk About It

This was a touching posting. I concur. I am constantly aware of SMA's terminal diagnosis. We have drastically changed our lifestyle to try our best to minimize our exposure to germs in the hopes that we can keep Ray healthy. I know all too well how hard simple colds are for these kids after spending two 20+ days hospital stays in the CHOP ICU with Ray, and I do not leave the hospital during his hospitalizations. These kids do not deserve what they go through. We as parents should not have to see this either. No parent should have to lose their child to something as awful as this. People tell me "You are so strong." No, I am not but do I have a choice? None of us do. We do what we have to for our children out of love. We need to find the cure or a treament...NOW!
Posted by Marcy on 2010-11-22 09:22:13
Our hearts are just broken, those captivating eyes of Jonas......... your words brought me to tears. How can you ever reconcile yourself to not feeling the pain of loosing sweet precious childern that should be running through the house, slamming doors, misbhaving and being held in their parents arms??? That cure is out there, it just can't come fast enough.......... hugs
Posted by Penny on 2010-11-22 10:43:07
Praying for the cure to come now. Our hearts go out to the Coleman family. --Love, Mari
Posted by Mari aka "Thorney" on 2010-11-22 12:19:46
I'm so sorry Victoria. We have Jonas and his family in our thoughts and prayers -and as always- you, Bill and sweet Gwendolyn.
Posted by Jenny on 2010-11-22 13:00:28
The Coleman's have touched our hearts too, in a way that can not be explained. Jonas is only a month older than our Owen and it breaks my heart being reminded that our days are numbered. SMA is awful and I pray for a cure too. We have learned that these sweet babies are such blessings, but with those blessings come great heartache too.
Posted by Gayle on 2010-11-22 13:05:52
I am so sad for the family, and everyone who Jonas touched...
Posted by Hillary on 2010-11-22 16:47:34
I first read of Jonas' passing on Dakins blog.I thought of you all immediately and sent a little love and light your way. Our worlds,although different in many ways,also are woven with a common thread.One riddled with love and loss and heart ache and the the over powering need,at least for me, to find purpose,but is that possible really?We often hear the same, about free of pain and suffering and safe within the arms of God but I often want to scream,"They should be here.This is where they are meant to be.."I have not and will not,in my lifetime,reconcile any of it.Ever. Love to you sweet friends and peace,if possible, to your broken hearts.
Posted by Zoey's mom on 2010-11-22 22:50:43

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