Saturday, July 17, 2010

Invisible, anti-social mom

One reason I decided to start a blog is because I hope to connect with other moms of kids who have special needs. My desire is to pass on hope to others who are struggling. Everyone needs encouragement. Sometimes it comes best from someone who's "been there." I'm only six and a half years into this journey; I need hope to cling to everyday or I would drown in defeat and depression.

When Lilli was an infant, strangers couldn't tell. People cooed and strangers made nice comments about her, the norm for a cute little tiny baby.
As she got older I took her to places where you take any toddler; the library, the children's museum, the park. I quickly learned that I was in a catagory by myself. I started to avoid conversations with other parents I met. I knew that if I seemed friendly and open to casual conversation, the questions about Lilli inevitably came.

The defining moment of the beginning of my anti-social decision came at the grocery store. Lilli was in her infant car seat in the grocery cart. She was about 9 months old and still learning to sit up. I was engrossed in the shelves of stage 1 baby food (Lilli had trouble eating and choked and gagged a lot due to having CP). Another mom pushed her baby up alongside me and struck up a conversation. "Aww! She's so cute! How old?" It turned out that her baby was the same age as Lilli. He was sitting up in the cart by himself, and she was buying stage 3 food and Gerber Wagonwheels for him. That instantly depressed me. "Isn't it a great age?" she gushed. "Is she totally crawling all over the place, getting into everything?" She laughed.

Hardly. Lilli would not crawl for 7 more months, at 16 months old.
And here it is: I lied to her. "Well, yeah," I said, and began to push off down the aisle. It was all I could do to keep from losing it right there, and I didn't cry until we got in the car. I never realized how much it would hurt when I saw other children Lilli's age.

Now you might have the urge to criticize me or think how awful I was to lie about my daughter, was I ashamed of her? No. I was not ashamed at all. The pain in my heart of my precious little baby having seizures and developmental delay was too great. I knew if I tried to explain why Lilli was not crawling yet, that I would start to cry right there in front of a complete stranger. And really, do people really want to know all of that stuff when they are just innocently making conversation? It was me. It was the state of my emotions and my heart, still taking it all in and trying to bear it. I backed away emotionally and decided I just wouldn't talk to other moms, that's all.
Anyone who knows me must think I'm making it up, because I am not a very reserved, quiet person. But having Lilli changed me in ways I didn't expect. I started to feel secretly relieved when we were the only ones at the playground. I avoided eye contact with other moms when we were out so I didn't have to talk to them and explain about my daughter. As she grew, I noticed more that instead of strangers smiling admiringly at my sweet tiny baby, they stared with curiousity at my crawling two year old. And then stared with disgust at my chewing-on-everything (including mulch, rocks and shoes) three year old. I've had strangers stare with horror at 4 year old Lilli licking various things like shopping carts and hand railings (she likes metal). She went through a major hand-licking phase around age 4, ugh that was awful. I didn't LET her lick all these things, but it was a round-the-clock battle with her.

But after 6 years, I've gotten better. It is much easier for me now to explain about Lilli to anyone who asks. I think it is part my acceptance of her diabilities, and part time healing my heart. I have a testimony, I have an experience that others can learn from. I believe Lilli is the way she is on purpose, for a reason bigger than I can grasp. Having two more babies after her has helped. I can talk to other moms anywhere I go and make conversation about all of my kids. When I look at Lilli now, I don't see a child that's not like other children. I see her. I see Lilli, exactly who she is meant to be.

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