Something to Share

If there exists a place between the sublime and the terrifying I went there yesterday. Saturday was Gracie Gledhill's funeral. And this beautiful tribute to a beautiful little girl has forever changed me. I have debated about whether or not to share about the event as it became a deeply personal experience. But when I think of all the very important things that became crystal clear in those moments of remembering, sharing, celebrating, and grieving this tiny life, I don't know how I cannot chronicle a few to remember how such a brief life can make such a lasting impact.

Gracie was honestly the first "heart baby" we ever knew. The very day we were diagnosed with McKay's condition, April 8, 2008, a family friend referred us to Gracie's blog. We were starving for practical information about what our diagnosis meant. Sure, we had lots of medical resources telling us what it was, but that is just not the same as seeing what real life looks like for families with kids like the one we were expecting.

Gracie was in the throws of recovering from her first round of surgery when we met her. I was instantly hooked. Matt and I called each other during the day whenever her blog was updated to discuss what was happening and assign homework for each of us to learn more about the terms and procedures being described. We truly hitched our wagon to this little fighter who seemed to pull rabbit after rabbit out of her hat and get stronger every day. We found such hope in her story. I would rub my bump of a belly at that point and tell my 20-week guy, "You're going to have to be strong, just like Gracie. If she can do it, so can you."

Gracie's aunt offered a beautiful account of Gracie's life at the funeral and mentioned that she really should have left this life at just four days old--the first time her tiny heart stopped beating on its own. But many prayers and blessings pulled her through those early days along with her mother who wondered aloud, "How will I help other heart families if Gracie leaves me now?" Those words struck my core. How could she have possibly known how much I (and I'm sure many others) would need gorgeous little Gracie just a few weeks later? How much we would need a small piece of the hope, strength, determination, and love she offered?

I felt overwhelmed with the assurance that maybe we were not so much drawn to Gracie and her selfless family, but led. They were meant to make the road easier for me and others like us; to blaze a trail for babies yet to be born that would need what Gracie would teach her doctors about what was possible. Gracie's greatest miracle may not be in the struggle of a life she led here--overcoming odds and wowing all those who knew her. Indeed, her greatest miracle may yet to be in the lives of those babies who are thriving because mothers, fathers, doctors have been inspired by her.

I was also struck by how difficult it was for Gracie's aunt to reconcile was was so right about beautiful little Gracie on the outside, with was so terribly wrong on the inside. I, too, have felt overwhelmed by this cruel twist that makes you doubt all you know to be terrifyingly true. I think that's why God gives us scars. For me, McKay's little zippers remind me to celebrate him and our time together on a daily basis. I rarely dwell on the marks, but occasionally rub my index finger over them as if to make sure they're real. They're real. And these days that careful caress over his chest produces a full-bellied gut giggle from my guy. That is God's mercy at its finest.

I felt strength in the sisterhood of other heart moms also there to honor and support. I have never seen these women outside of the hospital. Is that our fate? To see each other only in the PICU or at events like this? I hope not. These women are too strong and beautiful not to welcome into sunnier parts of my life. There was a time when I told a nurse I did not want to get to know other "heart moms." It was not a group I was interested in joining. Like somehow I would bundle up my babe, walk out into the world and all would be right. I was wrong. I felt tremendous strength sitting next to them, talking to them about daily routines, procedures, and fears that did not need explaining. I need them.

It was Gracie's father, however, that made a comment that rang so true and so loud I cannot ignore it. Tom said that from the moment Gracie was born she created bonds with her family and friends--bonds that were quicker and more sure than most of us can make in a lifetime. I, too, have felt this with McKay. It is hard to describe how he connects so strongly and so instantly with people. I have never seen my boys so emotionally connected to anyone. They reverence their brother. They celebrate him. Are all babies this way? There seems to be something about McKay that makes others want to be near him and it's almost tangible. Even new acquaintances, or those who have never met him in person have expressed their feeling of closeness to him. It's as if McKay knows he has no time to lose; as if he's the keeper of a secret we all desperately need to know. Little by little he reveals it and little by little we are better for it.

There is so much more to share. So much more I learned that crisp, sunny afternoon we said goodbye to a little girl that will live on in more ways than I can say. In the end, I was fully reminded of the unsteady agreement each heart family, or any of us really, has with God and this fragile mortal experience. An agreement only steadied by the hope and reality of eternal families. I hastily made my way home after the services, arms aching to cradle each of my miracles, lips poised to speak kinder words, and ears more open to listening and appreciating each precious moment. Thank you Gracie girl. Thank you Gledhill family.