We went to a fundraiser for “heart families” tonight.  I sat by a lovely family who is about to embark on their “heart” journey with their unborn son who has been diagnosed with a heart defect.  Their emotions were understandably raw and they are focused on their sweet little one.  It got me to thinking about my own journey as a “Heart Mom”.  We are not in the thick of the battle anymore (thank you Jesus), but I will be forever changed by the journey.  Looking around the room tonight at the familiar faces and the new ones too, I was struck again by the uniqueness of our bond.  No matter the differences in our kids’ heart defects or the similar struggles our kids have shared, we have all heard those words…your child has something wrong with their heart.  And time stands still as your own heart seems to stop beating and you mind swirls.  Your child’s precious heart, the organ that pumps life to their precious body, is broken.  And you will never be the same.

While our journey isn’t so fresh and raw as it used to be, I continue to discover the ways that my Ava’s precious little heart has changed and shaped me…for the better I might add.  Although watching my tiny one suffer so much tore me apart in a way I can’t describe, healing has taken place in my heart as well as hers.  Sometimes when I’m telling her story, it seems a little surreal…did that really happen?  And yet, I know no other life.  My hope is that her life and story brings hope to others because, as I told the couple I met tonight, God is still in the business of doing miracles and I have living proof in the little person sitting next to me.  This child, that after the doctors could do no more for her, was touched by the hand of God and her heart was healed…and no, there is no other explanation.  I have no idea why she lives and thrives while so many other’s have passed on to Glory.  That is not for me to explain, for our ways are not God’s ways (Isaiah 55:8-9).  But because of His evident and obvious control over her life, it has, in a sense, forced me to hold her with open hands.  She is a treasure…but she is not mine.  And with all her struggles and delays and the way we celebrated each day with her, I don’t actually feel like she’s growing up too fast.  Each milestone, no matter how small, has been a mountain climbed.  Each victory has been fought hard for.  And it’s not because I’m super mom and am completely present for every moment of every day, because I do feel like Lincoln has grown incredibly fast, life with Ava is just…different.  When I look back and see how far we’ve come, I am amazed that she’s only been apart of my life for a little over five years…I hardly remember life without her and without being a “Heart Mom”.

Most of the time, we just live life normally.  I don’t really think about her special heart very often.  Josiah and I always talked about how we never ever wanted to forget her journey and we wanted her to know her story, but we never wanted that to define her or our lives…and it doesn’t.  But every once in a while something will jog a memory and my heart is overwhelmed with the gift that I’ve been given.  Just this past Sunday we sang “Great is Thy Faithfulness” (which is not a song we sing on a regular basis) and it took me right back to my sweet baby in intensive care and me sitting in a room down the hall, by myself, pumping, and singing that song every day, multiple times a day, for weeks.  And here I was, five plus years later, holding the same little girl in my arms…and I immediately was so thankful for the grace of God.  He’s so good to us.

So there’s my heart tonight.  It’s full to bursting so I had to get it out somehow 🙂  Joy has won over sorrow when I think about those harrowing times.  Just another sign of God’s healing work…and it is so good.