Today my baby turned 20. It’s a happy day. It’s a bittersweet day. It’s an emotional day. Special days are always a double edged sword where Hillary is concerned. I’m happy she is still here on this Earth and not yet in Heaven. Every visit with her neurologist for the past few years has started the same way—with Dr. G. sitting across from Hillary smiling, beaming, looking from her to me and saying, “Well, she’s still here. She looks wonderful.” Could I ask for a better doctor for my daughter? He’s the only neurologist we’ve ever taken her to. If you knew everything the diagnosis of Aicardi Syndrome entails you’d understand his attitude. Most children with the syndrome don’t make it to their 20th birthday. Yes, I am grateful for every birthday we get to celebrate with Hillary. Yet, it’s a difficult day for me. First is the gift. This is one thing that just drives home the fact that she is not like her peers. There is not a gift that will make her smile with pleasure, except perhaps a bouquet of Mylar balloons. I know it’s not about the gift. I do, but she deserves gifts just as much as any other family member. So we buy her gifts, new outfits, new shoes, lotions, and most things you would expect to purchase for a age girl she is. Unlike her sister, who is excited by gifts and shows it, Hillary doesn’t appear to care much, except for the balloons. So I wonder, is it about her, or about my feelings? Is there a part of me trying to pretend she is not the way she is? Or do I just want to do what is typical in case she truly understands so she won’t feel slighted? Perhaps the other gifts do really make her happy, she just doesn’t or can’t show it, or perhaps I feel like her soul knows and appreciates our efforts.
She had a fun day at school. The chorus sang happy birthday to her during class, I brought in cupcakes for her regular class and they had a little party for her after lunch. She so much enjoys being around her peers. She brought home a gift from her “school mom”, her aide. It was a beautiful outfit. Once at home, things were quiet. We were the only two here most of the afternoon. I gave her the balloons, which I knew would be her favorite gift and bring a smile, and we opened the card and gift she brought home. There was an e-card from an aunt and uncle which she watched on my computer, and we went outside to wait for my husband to arrive home. It was getting late for her, she is so tired by dinner time. After a quick dinner we lit the candles on the cake and sang the happy birthday song. She enjoyed looking at the candles, trying to touch them, but I am careful to hold the cake just out of her reach. Cake and ice cream and then off to bed with her; she’ll open her gifts tomorrow. She’ll appreciate them more when she’s not exhausted.
I didn’t finish this post that day, so I continue it now. Saturday we went to the mall, something Hillary enjoys. We stopped in where her sister works to say hello. My husband and I opened her gifts with her later in the day. She didn’t seem impressed; in fact, she seemed a bit angry that we were blocking her toy with her gifts. She’s a funny girl! I’m sure she’ll enjoy watching the movies we gave her, and the sweater will keep her warm. On Sunday, she received her sister’s gifts. Her favorite was the pair of lined moccasins. She smiled when they were put on her feet. Later we took her to dinner at Cracker Barrel, where she enjoyed the double chocolate coca cola cake with vanilla ice cream for dessert.I’d have to say that Hillary had a nice birthday. Some things I know she liked, and some I’m not sure. I think she knows that she is loved, and that’s the very best gift we could ever give her. I survived without too much emotion. On to the next emotional mine field……er, holiday.