Reflections from a MTM Mother...a year later, more of the same...

This week has been a rough one on so many levels...personally, professionally, emotionally. I write to process, to speak to my own soul. Yesterday my writing spoke to many...I am overwhelmed...I am grateful that I have touched the hearts of many, yet I only want to truly touch the heart of one...One mother that is grieving the loss of her son, a loss totally unexpected, a loss that has shattered her heart to the core.

"What do I do?" was her question to me "How do I do this?"

I wish I had the answer, but then knowing how to survive the loss of a child would mean I would have to lose mine. As I said before...I am selfish. I never want it to be my turn. My son is turning 13 this year. He has made it past many milestones, farther than many, including some in my own family, ever suspected he would make. I don't blame anyone for being a realist...I have never been...not when it comes to my son. A year ago I wrote Reflections of a MTM Mother. It is a journey...for one child, for all children.

Our healthy children struggle...the last two days have been filled with extending virtual hugs to my daughter, the One that Walked...this is the first time that she has felt the loss so deep. Sometimes it is like that. There are no explanations at to why this loss is the one that shatters your heart.

One year ago, we were coming back from the 2013 MTM-CNM Family Conference...It had been incredible. There were so many new families that we, the planning team, were feeling like we were finally making some serious differences in our community.  This sweet angel was one of the boys that I met. He reminded me a lot of my cutest boy at that age...starting to learn to control his body, seeing the world around him. His parents, the sweetest and most gracious people. It was a gift. I remember that after the glorious conference we were met with crushing news of another loss, having to remember how often we hear angel wings flutter. A reminder of how much I wish this was not our reality...

Our children have so many things working for them and yet one thing...that small little x chromosome makes all the difference. If they had been girls, it would have been a different life. Don't get me wrong...there is not a single parent that would trade their children in. The theme is the same...we are better people having had our children, more thoughtful, more gracious, more appreciative of all the small things.

Having a child with MTM gives one a different view of the world. Sometimes, in weeks like this, that view frankly sucks. We are seeing a casket too small, a family broken, a child lost. Even though we know that he is now playing in a body that runs, with a voice that yells and lungs that breathe freely on the playground in heaven, we want him back with his weak body and crooked smile.

No one should have to lose a child and every child lost is a reminder that we aren't finding a cure fast enough. Every parent, every sibling, every researcher, every family member reminded that another sweet soul with fluttering angel wings has left us, shattered and asking why we can't solve this puzzle.

One day we will have a cure...our community will celebrate, we will not have to have these crushing blows any longer. One day, the ache will lessen and our smiles will shine. I believe that this is true. I have to because if it isn't, I might have a hard time getting out of bed in the mornings. I have to believe that our future is bright.

If not, the tears will begin and continue to mourn all those lost...all those angels...all the families who sit....waiting for something...

We need hope.


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