I haven't blogged for quite a while.
It's quite simple. My heart is shattered. I am finding right now that it's getting worse by the day. Today is 11 months. I am back to waking at 4am. Many a night the silence is deafening.
I am training so hard for the 1/2 marathon. I can't believe I'm doing this. I can't believe I'm doing this on May 4, 2014. I can't believe that on May 4, 2103 I crumbled as I watched my baby's casket being lowered into the ground. I will cross the finish line at almost the exact same time his casket was lowered. I can't believe that this is only 6 weeks away.
Today I was contacted by a friend of mine. A good friend of hers is facing a Mito diagnosis for their 9 month old baby. She was terrified as she had followed Eli's story, our journey. I wanted to tell her it will be ok. I wanted to tell her that Eli was such a unique case and that for most kiddos it will be fine. I wanted to tell her that there are tons of resources and meds and cures and doctors. I wanted to tell her all these things. But how do you make a NEURODEGENERATIVE PROGRESSIVE ultimately TERMINAL disorder sound sweet and nice and ok? It's NOT ok. I am well aware that everyone is different, that the disease is different for each person, and that everyone's journey is different. Sadly that doesn't change Mito, that doesn't stop Mito.
Mito doesn't just affect the patient. It changes the family, the nurses, the doctors, the community that loves them. Mito shatters lives, its shatters families, it shatters community.
Where will their journey take them? I can't predict that for sure. I can guess. From our journey, from our friends journeys. Mito brought me a community, a family, lifelong friends. I have watched over these 4 years as that community has changed, I have watched the progression, the loss, the heartache. I have heard the screams from all over the world with each diagnosis, each progression, each angel's passing. I have grieved. Mito brought me more pain than one person should ever have to feel, pain that isn't possible to handle, pain that consumes me.
I want to protect them. I want to protect us. I can't. All I can do is be honest, but supportive, and then shatter into a million pieces letting the tears pour in the quiet alone moments.
Jace had to write a motivational saying for PE. He came home so proud.
At the top was Eli's footprint traced from Jace's team Eli shirt and then colored in orange.
Below it was his saying "Live Life Like it's Your Last"
He's 10. My beautiful boy knows what this means. He knows. His tears bathed our baby's lifeless body that day.
Please take what Jace wrote to heart. It happens so fast. 16 hrs after I held my baby, 16 hrs after I saw his beautiful eyes, 16 hrs after he saw me sign "I Love You" He was GONE.
The world will never be the same. 11 months later the tears still flow. Today my heart breaks for us. Today my heart breaks for this family going thru testing right this very moment, as the doctors suspect Mito.
11 months. I beg the world to pause, time to stand still. I'm not ready for 1 yr. Time is going to fast.
Always and Forever Tiny Man.