No Words

The first few days after we learned about Charlotte's sick heart, I spent hours on end sitting in front of the computer trying to learn as much as I could about her diagnosis and what it meant for our family. While I got lots of information from pediatric heart websites and medical journals, the most helpful resources I found were CHD blogs. Reading the experiences of other heart families helped prepare me for this crazy journey more than anything else could have. They helped prepare me for the ups and downs of surgery and recovery, feeding difficulties, home oxygen, and the improtance of being my childs biggest advocate. These families are technically strangers to me, but I feel like I "know" them all. I cheer for their successes, cry for their setbacks and grieve for their losses. They are my heart family...my inspiration.

One of the blogs that I have followed for over a year now chronicles the heart journey of a precious little boy named Bowen and his family. Bowen was born with a sick heart like Charlotte's, only the left side of his was underdeveloped as opposed to Charlotte's right side. Bowen's dad happens to be the Matt Hamit, lead singer of the Christian band Sanctus Real. Let me tell you, he has a way with words. I get excited when I see a new posting on their blog because I know that in addition to a health update it will have "substance." Its guaranteed good stuff. (www.bowensheart.com)

Back in October Matt entered a post revolving around the question "What should I say when I look into the eyes of parents who are leaving the hospital empty handed?" It was a moving post for me then, and even more so now that we find ourselves on the other side of things. We aren't the ones struggling to find comforting words, but rather the recipients of many I'm so sorrys, You are in our prayers, and unfortunatley one lady who compared the loss of our daughter to her having to put her dog down. Yes, you heard me. But I get it. Words are hard to come by. Everyone wants so badly to make this better for us...to take away the pain...and there are simply no words. I'm living it and I still couldn't tell you what is right or appropriate in a situation like this.

As Matt concluded in his post...

"I don’t think there is any good answer for what to say to someone after they’ve experienced a tragic loss. I think the answer lies in what you’ve said and how you loved leading up to these moments, before tragedy comes. Love and speak now as you would wish to love and speak in the midst of loss. When that time comes, your past will speak through your presence, and being there will be enough."

I want you to read that bold part again....

"Love and speak now as you would wish to love and speak in the midst of loss. When that time comes, your past will speak through your presence, and being there will be enough."

Wow...what a profound response to such a seemingly impossible question! I remember tears running down my face as I read this line for the first time almost 9 months ago. I didn't know first hand then, but I can tell you now just how true this is. I want to thank all of you for simply "being" there for us...whether it is through hugs, listening ears, to offer a Kleenex when the tears won't stop, praying for us, feeding us, or any sort of distraction you may provide. In a time where there are no words, you have surrounded us with love.