Sunday, April 6, 2014


I am so grateful we have this blog.  Whenever I need some connection to Gabrielle, this is one place where I can turn to.  I can watch the videos, gaze at her pictures and remember my little girl.

Since reading and reflecting some things have become more clear to me.  As I was reading my post about grieving a normal life, I know now what I was trying to say.

I didn't want her to die.  That's what I was grieving.

I didn't want her to suffer with her horrible disease.  That's what I was grieving.

I wanted to protect her  brothers from the sadness of losing their sibling who they were so incredibly close with.  That's what I was grieving.

I wanted to protect my daughter from all the unfairness that her disease brought to her.  I wasn't able to. Instead, I had to prepare myself to one day say good bye.  That's what I was grieving.

How do you say good bye to your child forever?

How do you hold her hand and kiss her face as they take their last breath?

How do you live the rest of your life without them there?

That's what I was grieving.

Our last family photo with Gabrielle.

Saturday, April 5, 2014

RIP Charlie

A little boy Charlie lost his fight with I-cell this morning and we are so deeply saddened by this loss.  I found out the news while laying on the couch in the bright sun this afternoon and I just layed there and cried.  I cried for Charlie's parents because the pain is all too unbearable.  Charlie's sister Amber also had I cell disease and passed away last May, a month before Gabrielle.  And just like Gabrielle, he seemed to be doing so well.  So happy and strong and on a roll, just like our little girl.  No parent should ever experience this pain, and this young couple is experiencing this pain again.  It breaks me up.  It's just not right.

RIP Charlie.  You are running free now, free of pain and free of I-cell disease.  I will pray for your mommy and daddy as they try to learn to live without you.  They will miss you terribly.  Please pray for this family as they grieve and try to make sense of losing both their children.

Charlie and Amber