Unsure of Mickey at first ~ Who would have known that Mickey would become her favorite?
I came across this post written by a mom with a medically fragile child. “Top Ten exciting things about having a kid with a rare disease.”
As I was reading her list, I started laughing and saying to myself “Yep!” to each one. I could totally relate to each one as I have lived each one, multiple times in the past few years.
My heart sank. I realize that is not my life anymore. I don’t care of a medically fragile child anymore. My two living children thankfully are healthy and seem to have the same issues as other normal-developing children.
I got jealous. JEALOUS! Tears started, and I was getting angry at myself for being jealous. Why the heck would I be jealous that today another mom is having these experiences?
Then it finally hit me. I’m jealous because if I was having those experiences today that would mean Hannah would still be here.
I would go through hell and back if it meant that she was still here with me.
I can’t imagine your pain.
I know you as a very strong person. Knowing when to smile and talking in front of a bunch of people. Starting your own crusade against Hannah’s disease. Then taking it a step further and starting a foundation. Getting up each morning and stepping through each day with a piece of you missing.
And then, you show your true emotions and write about it. You have those much needed human qualities that we all need. Compassion. Truth. Love. And the strong Desire to hang on when it is nearly impossible to cope. I love you Carrie. I’ve never personally met you–but I hold you close to my heart.
Beautiful, searing post.
Just in case it helps you, my friend Laurie Strongin told me a similar story. Right after her son Henry died in the hospital at age 7, a nurse said, “I bet you’re happy to be leaving here.” And Laurie replied, “No, I’d like to live here for the rest of my life. This is where we live with Henry. We can only leave if he dies.” I happened to be recording when she told me that story, if you want to listen to it (segment 4):
http://susannahfox.com/2012/03/16/mama-birds-catherine-fairchild-calhoun-and-laurie-strongin/
Again, thank you for giving me perspective today and every time you post.
Carrie,
I live each-day balancing the 50-50 chance that we will live to see the next day. Every morning I am thankful for another day with my Mighty Z . Even though death knocks on my door every night, I have no idea how hard it would be if death stepped across my threshold. . We as mothers of fragile children should never have to walk this road and none of use should have to stop in the middle of this road alone when our miracles pass. My heart, my prayers, and my tears are with you sweet lady
I’ve had similar thoughts on more occasions than I can count. I will do anything just to keep Lily here with me. Losing her is literally my worst fear even though it is the only thing that would make my life go “back to normal”. My heart goes out to the mamas who have lost their little ones (no matter how little or not they were).