Another angel gains his wings....

Stesha and Louie, MTM-CNM Family Conference 2013

Tears are falling down my face...I can't control them. My eyes just keep leaking.

The news that another MTM boy gained his angel wings last night breaks my heart...the news that it is my dear friend, Lindsey's son Louie, crushes it. At the conference last summer I met this sweet family. They struggled, like we all do, to come to terms with this diagnosis and what it means. Their daughter, Emily, is a doting and special girl, a big sister filled with love. She is comforting her parents now...dealing with this unspeakable loss in the only way many children know how...love those around them.

We joked last summer that Louie was Stesha's boyfriend. They had an immediate and special bond. He would smile and flirt with her. She would hold his hand and talk with him...even though she was years older, these little angels burrow themselves into our hearts.

I hate this disease...I hate that it takes our children like a thief in the night. The last few deaths have been swift and unforgiving. One minute they are fine and then they are not...no explanation, no apologies.

Sweet Louie <3

We, as parents, know that our children have a "life threatening disease." We have been reminded of this from the minute they are born. Doctors are not hopeful, they paint a grim picture, but then life happens. We adapt, we modify, we do things differently, but we do things. We have driven Javad halfway across the United States, taken him to Yellowstone, swimming, camping (ok...via RV), boating. Each of us lives our life. We take our sons...we aren't stopped because the disease says we should be. We keep moving forward but....

What happens when they are gone? How do you move forward? There is not an instruction manual for the loss of a child. This is not supposed to happen...your child dies before you...we are never prepared, no matter how old we, or our child, is. It is especially difficult your child is a child, not having been able to live a full and complete life.

It is a difficult and complicated set of feelings when your friend loses their child...the feelings are swirling, heartache at the loss, heart break, fear at the reminder that this could have been you, relief that it wasn't, guilt that you feel relief...

Being connected with other families is a blessing...feeling that there are others who know your journey, that you are not alone, but then that connection is deeper...you have held and kissed that child, rocked them, smelled their sweet smell...they became a part of you.

Javad has been diagnosed with Myotubular Myopathy for ten years...the diagnosis was a crushing blow since all the news was devastating. We have lived our life...opened the doors for other families, showed them that the world is still their oyster, the limits are only determined by their imagination.

The losses over the years have been devastating...each child lost taking a piece of my heart with them. This one hurts to the core...deep in my heart. I am mourning for my friends, their daughter, my daughter, myself.

There are no answers...I wish there was some sense to it all...I wish there was a cure.

I am done with losing children, I am done with this disease taking those I love...

I am done...