A Robot Birthday

When Lilly was born John and I were 20 years old. Okay, I was 20 years old. John would want me to point out that he was still two weeks away from turning 20. John and I were 21 when I became convinced that there was something wrong with Lilly. We were 22 and on the brink of having our second child when we were told that Lilly would never be like other children, 23 when she was officially diagnosed with autism. We were 24 and had just had our third child when we were told that Lilly was most likely severely impaired and we should understand that we would have to eventually put her in some kind of institution.

Lilly's birthdays have never been easy. A video of her first would show a child laying on the floor and screaming while I opened her presents and pretended this was how all first birthdays went. We spent her second birthday in the hospital having an EEG for suspected seizures. As Lilly's gotten older, her birthdays have become markers for milestones Lilly will never reach. Every year for a few days John and I lose the ability to pretend that Lilly is still a baby and it's okay that she's not potty trained and can't speak more than a few rote phrases.

Last night John and I were preparing for the small party we'll have for Lilly today. I wrapped her gifts and as I was filling out the card to go with them, I lost it. I was writing, Happy 15th Birthday, and I suddenly realized, I'm writing this card to myself. I should be writing a card to a teenage girl, telling her about how grown up she's become and how proud we are of her. I should be worried about her dating and preparing for college. Instead, I'm writing a card that only I will read, that she won't even listen to, or understand. I'm worrying about her waking up in the middle of the night and needing to be changed and whether or not we'll be able to manage her mental illness well enough to keep her home past her 18th birthday. This is not where I thought we'd be, late that night 15 years ago when my baby girl came screaming into this world.

So John and I took a minute to cry, as we need to do every year, to mourn the Lilly who never was and never will be. We are 35 years old (well, obviously John is still two weeks away from being 35), and I know we'll still be doing this when we're 65 years old. That knowledge is daunting, but today we'll dry our tears and go back to loving Lilly just the way she is, and I know we'll be doing that when we're 65, too. We'll treasure her giggles and hold her when she cries, she'll tell us she's a treasure and we'll repeat it back to her, knowing it's the truth.

So here we are, a family of robots, treasuring what we have.