Saturday, January 10, 2015

Time heals...or at least redefines. Working through loss.

They say time heals but I wonder sometimes if it actually heals or simply changes who we are, redefining us giving the illusion of healing while masking the pain we carry.

In September of 2013, a beautiful, bright eyed boy with an incredible smile named Aiden Sullivan went to sleep one night like he had many before only this time, he didn't wake up the next morning.  Like my children, Aiden had Fragile X Syndrome.  His death was quietly mourned by the few who knew him within our Fragile X community and the incredible family that he left behind.  I think of him each night as I tuck my children in bed and kiss their foreheads good night. His parents, especially his mom, crosses my mind as I fight back a tear of guilt that I have this incredible privilege that has been taken from her and heartache knowing she would give anything to kiss her sweet boy and tuck him into bed tonight too.  While I never met Aiden or his family, they forever touched my heart and impacted who I am today. They are always in my prayers.

As I had just come to grips with the loss of Aiden, our Fragile X community was rocked to it's core a few months later, shortly into the new year of 2014 when one cold January morning the news of a house fire in Georgia quickly spread through our community.

Today marks the one year anniversary of the passing of passing of Logan Davenport, this day has weighed heavily on my mind and my heart all day long. Logan also had Fragile X Syndrome.

There is never a day that goes by that I don't think of Logan when I see my children or hear of an experience of another Fragile X family that is similar to one he had faced. While I had never met Logan in person, like many in our Fragile X Community, I have watched him grow up online. I had met his parents and through pictures, experiences and stories shared by his mom, Sheree, his dad, Mickey or his grandma Mickey - our entire community watched him grow up... just as they continue to do with my children.

His mom, Sheree, has always been a voice in our community.  A loud, strong voice with an incredible southern drawl to it - she is after all, a Georgia Peach!  She and Mickey were incredible advocates for Logan. Sheree fought tirelessly for an end to restraints and seclusion for special needs students. Both could be found at the NFXF Advocacy Day in Washington DC, speaking out on behalf of their son and others who needed a voice.

There was never a shortage of stories about Logan or his beautiful sister, Leah.  Leah, a beautiful young lady who loved her brother unconditionally and was often seen in pictures with her arms wrapped around him with smiles beaming from them both.

I know that his family, too, would give anything to have him back in their arms.

I thought that today would be simple for me to acknowledge. To let his family know, just like with Aiden, we will never forget the incredible boy that was taken too soon. It turns out, it hasn't been that simple at all.  To  say something reminds me of how real it is to each of us every day, the pain that continues to live on.

Over the past year, we've continued to acknowledge and share in the memories of both boys on their birthdays.  For Logan, who was very well known in our community, many have changed their profile pictures to honor him today.

I know my heartache pales in comparison to  what their parents and family members go through each day.  And it should.  This isn't about me, it's about 2 families who must continue to go on each day with a significant part of them missing. I can't imagine that pain and pray I never, ever find out. I know the pain as a friend and it cuts deep and hurts unbelievably.

I believe for both boys the one thing I can do is promise their families again that they will never be forgotten, that their spirit lives on in our children, that time is taken every day to appreciate those foreheads we get to kiss goodnight and to hold our children a little tighter, say I love you a few extra times and to always keep their family in our prayers.

Their families will forever be a part of our Fragile X Community.  A community that was forever changed by the loss of both boys.  A community that will never forget. A community that will always embrace and love them. A community that I'm not sure time will heal but instead will help us find strength and redefine how we love and care for those we love most in our lives.

In our children and in our hearts, Aiden and Logan will forever live on. To the incredible families who struggle through each day, I pray you can feel the arms of thousands wrapped around you each day as we hold you tight in our hearts and keep you in our prayers.

The brightest stars are shining down on us as these two incredible boys are watching down on us from Heaven.

Today and every day, please tell the people in your life how very much you love them. No matter the age, no matter if they can reply, no matter the situation... life doesn't always give a heads up when it's about to change, sometimes instead it's quickly taken from our tight grasp.

Make every single moment count. 

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