We’ve been to a couple of birthday parties recently, and she’s seen the fuss made over the birthday kid and that there’s cake and presents and having a birthday means that you’re the center of attention. We’re doing Lucy’s birthday party at a place with a bouncy house this year, so for a couple of weeks she’s been doing her Lucy thing of going over what the routine will be, exactly.
M: You, what?
M: Oh, you mean you’re going to hop in a bouncy house for your birthday?
L: Uh-huh! Help me!
M: Who’s going to help you?
L: Pop! Op!
M: Pop’s going to help you and open the bouncy house?
And this goes on. We cover what we’re eating, who will be there, opening presents and even transportation because apparently she really wants to ride in her dad’s car. Anyway, the routine is the same every time. Last year, it was all still kind of mystifying. This year, it is on. And that is glorious to watch.
When you have a kid with special needs and you go through the long list of different doctors and health professionals, the first thing they want to know is if you had a healthy pregnancy. With Eden, who is a typically developing child, my pregnancy definitely would have been cause for concern. I spent the first four months miscarrying her twin. She was truly a miracle baby. On the opposite end of the spectrum, Lucy’s pregnancy was a piece of cake. I had virtually no morning sickness, a beautiful diet, a totally supportive partner and little stress. She even surprised us by coming ten days early, instead of making me wait until I’d made peace with being pregnant forever, like her big sister had.
So here we had this perfect pregnancy, a perfect delivery and a lovely, perfect baby. And then after the first year, we began to see that she is wired differently. We began the long diagnostic process.
In the early days, I cried. I searched for every little thing that might have caused Lucy’s challenges. I was devastated and angry and sad and scared. I’d lie in bed at night fighting hot tears and the knot in my stomach, just praying that everything would be all right. I felt like something had been stolen from her and from us. “Normal” had been stolen.
We weren’t having normal birthdays and Christmases. Playdates? Definitely not normal. Pre-school? Not normal. I wanted all of those things for us and for her. I wanted her to get attached to characters on television and develop obsessions that I could indulge. I wanted her to be able to eat the damn chili con queso and flour tortillas. I wanted her to be able to tell someone her name and how old she was. But we didn’t get that.
In this last round of clinical assessment and diagnostic stuff, we sat in front of a pediatric psychologist, asking if she thought Lucy would one day be normal. She just looked at us and said, “What’s ‘normal?’”
And that changed something for me. Lucy is 5 today, and she’s excited that it’s her birthday. If you ask her whose birthday it is, she will yell, “ME!” If you ask her how old she is, she will hold up all of the fingers on one hand. If you ask her her name, she still can’t tell you; it’s still locked inside of her, but she’s such a tenacious kid and hard worker that I believe it will come.
If I could go back in time to when we got our first diagnosis and tell myself anything, it would be that we would have all of the joy and sweetness and proud moments that we might have if Lucy’s brain was neuro-typical. Because we’ve had all of that and then some. I would tell myself that it wasn’t going to be all right. Actually, it was going to be wonderful. And I would tell myself not to worry; we would have normal. Because we do. It’s just our normal. It may not look like my friends’ normal or the normal I’d envisioned during my perfect pregnancy, but that is OK. After all, what is “normal” anyway?
For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.
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