What it Means to Love Sullivan

I lost friends between Sullivan's diagnosis and his birth, and a few more after he was born. They dropped like flies, actually. People said that they "had to step back," and were "just overwhelmed by my life." This last one really blew my mind…I mean, I wasn’t asking them to live my life, to deal with my stuff, just maybe to have dinner with us and let our kids experience some semblance of “normal” once in a while. They could always leave and go home to their lives, which were not filled with all that we carried. Some were really good friends we got together with every week or so, others were just people I had known before in life who just kept up with me on Facebook. I could hardly fathom that being my friend through this, knowing me, dining with our family, or reading my Facebook posts could be so excruciating that others who could still go home and hug their healthy kids or finish their pregnancies with a baby with four chambers in his or her heart honestly couldn't hang, but there it was - or rather, there they weren’t.

It wasn't until recently that I figured it out. It's about how Sullivan changed me, how he changes every single person who comes to know him.

Loving Sullivan means knowing about the mortality inherent in his condition. It means caring about strangers with heart defects you've never even heard of. It means praying for people you don't know and will never meet, and checking Facebook

for updates on children who may die. It means listening to him breathe too heavily and stopping yourself from trying to stop him, because amidst the heavy breathing, there is glorious laughter, and damn it, he deserves a life like everyone else. It means calling and saying you won't be coming to dinner because you just learned you have strep throat. Or a cold. Or your tummy feels weird, and better safe than...sorry. It means looking over during a jog-a-thon and seeing me sobbing, and asking me if I'm ok. Or sometimes it means not asking, just coming up and putting your hand on my shoulder and giving me a deep squeeze.

Loving Sullivan means hearing him laugh, squeezing him, feeling his heart race, and knowing we are all on borrowed time.

You see, Sullivan doesn't have time to waste. He demands authenticity. He forces us to look at our own mortality, to realize how precious life is, to get real, right now. And loving Sullivan changes how you love others, and yourself. Loving Sullivan means letting yourself be vulnerable, it means setting yourself up for heartache, it means recognizing that youth doesn’t guarantee a long life. It means looking at others you love and realizing we are all on borrowed time. Loving Sullivan means forcing yourself to love every single person in your life as if today might be your last day with them, as if tomorrow may never come, as if this is all we have.

So, for all the friends still with me, and all of you who have joined along the way, thank you for loving Sullivan. Thank you for loving us, and for being real, and for being scared, and for being brave. Thank you, most of all, for being here. We can't do this alone. You help more than you will ever know.