It’s been one year

On July 17th last year we learned that our four-month-old daughter was having seizures and had brain malformations.

Remember how you felt during the worst heartbreak of your life – with the high school sweetheart, the one that got away – remember the self-doubt, the replaying in your mind of every moment, analyzing when things went awry, what could have been done differently, the depression, delusional hopes that things could be repaired, the inability to eat or sleep…now imagine that it was up to you to take care of that person for the rest of their lives, experiencing the heartbreak over and over into infinity. That’s a bit what it feels like. Only more real.

There’s a classic article that people give you in the beginning called ‘Welcome to Holland.’ Well so far for us it has been more like ‘Welcome to Gitmo.’ Holland would have been lovely. It could have been operable like a brain tumor. Or diagnosable like Down Syndrome. Straightforward blindness or deafness would be like Hawaii. Instead we are locked in a pitch black room and don’t know what frightening thing might happen next, why we are here or how long we can expect to live. One year later and we have no diagnosis, no explanation, and have not been able to get the seizures wrecking her brain under control.

and yet…

There is so much more to be grateful for than we’ve ever experienced. So much more richness, preciousness, awareness of life. Quite frankly, Lydia has made us better people- more kind, more thoughtful and much, much stronger. I hope someday and somehow she will understand how grateful we are to her. And how deeply we love her.

Lydia’s early intervention specialist recently said to me that Lydia would change so much more in the world than if she’d been normal…I had no idea what she was talking about…but then the very next week Lydia had the opportunity to save the life of another little girl, much like herself. The details are not mine to share on this blog but what an incredible thing! Not even two years old and she’s already saved the life of a stranger across the world. That’s already more than I’ve done my entire life.

What this made us realize is that Lydia is a part of something much greater than our little family. She is the bearer of humanity, the heart of compassion and unconditional love. She carries a burden in her body that is a mirror for both the frailty and strength of life. She is the outer limits of natural variability. She’s pushing the envelope in ways we can’t fully comprehend.

No she probably won’t care about a big television or use a washing machine, be interested in low cholesterol and dental insurance…maybe some people see this as a loss, or even believe her life has less value. I wonder if we’ve lost friends. But is that what life is really about? The ability to choose American Apparel over Abercrombie and feel like we’ve done something helpful for the world?

Lydia is the physical embodiment of the emotion you feel once and awhile, when you are in the right mood and open to it. A movie that completely wraps you in and has you promising to be a better person as you leave the theater, to be kinder, appreciate more. A book that speaks inside your head and that you cry for when you finish reading. Lydia is compassion itself with blonde curls and long black eyelashes.

Rare. Precious. Heartbreakingly human.

As her family we’ve been given the most important task of our lives. It is not to worry or prolong, but to give her life the grace it is due, to minimize her suffering, and to witness her beautiful life. And of course to love her absolutely. It has been a year and I don’t always or even often feel like we’ll get through this, but sometimes, right now, I know we’ve got this.

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