Wednesday, September 22, 2010

Sept 21, 2010: A Short Story

I wrote a very short story, imagining myself at a future event in Annelies's life. I am well aware that her life will probably not go the way I imagined in the story, and I most certainly make it a point to live in the present with both of the kids and not even worry about the future. But many hopeful articles, pictures, stories and video's as well as the awesome progress Annelies keeps making has allowed me to fantasize a little bit about the future. Who does not have dreams for their kids' futures? All that said, I will allow my kids to develop their own interested and not push them into the things I (or my Husband) likes and keep them away from the things we may not care for. Here is the story...hope you enjoy...

...As I sit here waiting for the music to begin, I marvel at the fact that out of all the things I dared hope for my daughter in the past 23 years, this was the biggest. This is the event I hoped for but did not want to hope for so much that I might be disappointed. This is the event I wrote off on the day she was born. One of many, come to think about it. This event is one additional step she has taken to become a person as involved, as part of society as anyone could ever be. This event is 20 years in the making.
On the day Annelies was born, I thought I knew a lot of things. I thought I knew she was not going to be going to normal schools, let alone College. Ruefully I mentioned to one of the NICU nurses that I would not have to put money away for College for this child. (I have a kind of sarcastic, dark sense of humor). I thought I knew she might even be oblivious, that for sure I would not have any kind of ‘normal’ human contact with her. I thought she would be forever a child, which could be cute when she WAS one, but not very cute as she progressed through her teens into adulthood. On the day she was born I thought my life as I knew it was over.
The first 12 hours of her life, I was not really mentally there. I was dealing with what I thought was some kind of punishment, karma. What had I done to deserve this? Now, 23 years later, that day is a fog, I do not remember much about it at all. One thing I remember. Around 3 am that night, I went down to the NICU. I asked to hold Annelies. The NICU nurse could hardly contain her excitement; here was a mommy ready to bond with her baby. I held Annelies and rocked in the oversize rocking chair next to her crib (I still remember how comfortable those chairs were, you could just kind of sink into them, something my sleep-deprived body was grateful for). Many thoughts went through my head; I cannot tell you what they were. Suddenly, Annelies opens her eyes and stared into mine. It occurred to me at that moment that I was staring in the eyes of a person much, much wiser than myself. I got a message; I don’t know from whom, maybe it was Annelies herself? Maybe god? The message is this: “Everything Will Be OK. Trust Me”. The moment lasted seconds but will be etched in my mind forever. Its profundity still makes the hairs on the back of my neck rise when I think about it.
Throughout the years, Annelies has grown up to be a person with a strong sense of who she is. A big part of who she is, is fiercely independent. It was evident to us even when she was little; always exploring and chatting to herself and her environment, always testing things and bossing her dolls around. She would get irritated if something did not work her way, but would always insist on trying it. On the other hand, if therapists or other family members engaged Annelies when she was not ready for it, she would let it be obviously known. School opened up a world for her, she loved being in her classes. She loved the social aspect of school and was (still is) part of a wonderful circle of friends both typical and with Ds. Her natural curiosity gave her the impetus to put that extra effort she needed to put into most of her class work, getting very decent grades and being able to be mainstreamed with her peers in most classes. Like her Mommy, she did not ‘get’ and was not good at, math. So we got extra help for her (her Brother was a great help with this) and she was able to ‘survive’ this hurdle. She actually ended up doing better than I ever was at it!
One place Annelies was able to be without any prejudice (at least before people knew of her) was at horse shows. Like her Mom, Annelies was born with a “horse gene”; she loved horses from the very beginning. One of her first adamant demands was that she be put on a horse, and I had to let go of all my good intentions to not let either of my kids ride until they were at least 8 years old (it is a good idea for kids to have the ability to empathize since they are working with a living being after all, and I advocate the good treatment of the horse to be a priority.) Annelies wanted to be on a horse (she had seen me ride) and once she had her first taste of riding, she did not want to stop. We found her a pony, nicely trained. The pony was nice and stout so Mom could get on and fine-tune her from time to time. Annelies learned to ride and take care of the pony at the same speed any child with interest in horses would have. She took her first lessons with my trainer. When Annelies was on a horse, with her helmet on, no one saw Down syndrome. They saw a young girl who displayed a fabulous partnership with her horse, garnering a number of successes at local shows. Yeah, you should have seen the judge’s faces as they saw her without a helmet, hanging around the show grounds. She received many compliments, and had a lot of ‘fans’ (the biggest being her 2 sets of Grand parents, on both sides of the ocean.)
When Annelies was 3, we started play dates with a local mom and her son. Annelies and this boy developed a deep friendship; they were crazy about each other from the beginning. Even though he did not attend the same schools, this friendship lasted and blossomed into a romance when they reached their teen-years. Annelies always had a date for her dances at school which I loved…I never went to any of them.
The music begins to play. I glance at my family, friends and my ‘Sisters’, the ones who have been here for me my family through the years. My Husband and I squeeze each others hands in part nervousness, anticipation, excitement and a little bit of melancholy. Today, our little girl flies the coop. I look at Annelies’ husband to be, and then focus on the back of the aisle. There comes my Daughter, ready for a new chapter in her life.