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. 