Some things I have not said.
I’m a member of the Down syndrome community. My daughter is two. She’s adorable and everyone loves her. I didn’t have a hard time with her diagnosis because 1. I already had a special needs child and knew of the joys that come with the trials and 2. I felt like I had been prepared for her. I just had a feeling she had Down syndrome.
But there’s a new reason why I think I didn’t have a tough time in the beginning: Denial.
I’ve been fine with Abby having Down syndrome as an infant and as a toddler. I have not been fine with her having Down syndrome as a ten, twenty or thirty year old. In fact, the thought scared me so much that when it intruded into my conscience, it was immediately buried with thoughts of The Now.
And when I was faced with the reality, when I saw older people with Down syndrome, the experiences have not been good. The parents looked very tired or in one instance, were not kind to me at all. I felt my insides scream out “NO NO NO NO NO NO…” I did not want that reality. So again, I buried it. Please know this doesn’t mean that I don’t love adults with Down syndrome. It’s just been a hard reality to face that Abby will be older. That the differences that aren’t so apparent in her now, will become VERY apparent as she ages.
This week I’ve had the opportunity to go to Advocacy Day on the Hill with the National Down Syndrome Society, the Global Down Syndrome Foundation and the National Down Syndrome Congress. On Wednesday night I had training with 162 other families from 36 states and Peurto Rico. There were a lot of self-advocates in attendance, meaning a lot of adults with Down syndrome. I felt my heart sink as I thought about Abby getting old. About her living with us forever. What kind of life would she have? Would she be happy? I didn’t talk to the adults much, because I was afraid. I was afraid it would only make me sadder.
I left the meeting and several forces worked on me at once. My sadness bubbled up as I was forced to acknowledge the fact that Abby would become an adult one day. But still very dependent on me. Deep down I think I was really afraid that as Abby aged, the joy in Down syndrome would slowly disappear. I got stuck on the Metro because of power outtages, and I HATE being underground. I also hadn’t eaten since morning. By the time I was 4 stops from home, I was shaking, sweating, sick and in the throws of a full-scale panic attack. I sent my husband a string of texts telling him to be waiting for me at the door of the Metro because I thought I was going to pass out. I just barely made it to his car when I lost it. I’m embarrassed to say all of this, but I think it speaks to the kind of turn around that was to come.
I told Lance that I couldn’t do it. That I couldn’t deal with even getting to DC (driving there is the worst and with my new found hatred of being underground, the metro isn’t a friendly place, either). And I knew that I was paired with other families that had older kids with Down syndrome. I told him I wasn’t able to face it. It was too much all at once. Then Dr. Seuss came to mind with, “…and you’ll face up to your problems, whatever they are.” And I can’t fight with Seuss, he’s dead. So the next day, I went.
I’m so glad I went. I feel like we did a lot of good with the members of congress we were able to meet with. But by far for me, the best part of the day was getting to hang out with the most amazing people I’ve ever met. I went with two other families who have children with Down syndrome. Katie is 10, and Todd is 33. Their parents were the kind of people I could only dream to become. They were honest. They were patient. They were REAL. They didn’t sugarcoat things which made me know that they weren’t putting on some sort of show to keep me comfortable with my future. Todd and Katie showed me so much more that there will ALWAYS be joy in the extra chromosome my daughter carries.
The both loved and accepted me from the beginning. They didn’t see my pit-stains and think I was gross. At least they didn’t mention it. They just were happy to meet a new friend. And it wasn’t what I thought at all. I’ve been wrong. I knew very well that the best way to get over any sort of prejudice is to immerse yourself in the community you fear. I have not done that. I’ve never really even spoken to an adult with Down syndrome. My fears were unfounded. Sure, these two will always need some support from the community and their families, but not to the extent that I had imagined for Abby.
Katie was like any other 10 year old girl I’ve ever met. She loved Abby and wanted to hold her. She was cute and super easy to be around. She even said she’d come home with me and live with me forever. I would have taken her up on that in a heartbeat.
Todd led the meetings. He spoke of his desire to gain independence from his parents. To live on his own. He was polite, funny, and SO CHARMING. He cared about the issues, and he cared about the people that he was with. He loved Abby. He wanted to just hold her and carry her and probably would have the entire time.
I had the best conversations with Todd. I asked him about all of the monuments he went to and which was his favorite. He said, “My favorite was the Samuel Adams Monument.” I told him that I wasn’t sure I had ever been to that one and asked him why he liked that one over the grandeur of others, like the Lincoln or the Jefferson. He came back with, “Because Sam Adams is my favorite beer. I’m a beer drinker!” I just about fell over. Of course he is! He’s 33! Most 33 year olds I know who aren’t of my faith drink beer. Why wouldn’t Todd?
I spoke with his mom a while as I was laughing at his ability to charm the people around him. As we wandered through the halls of the Senate office buildings, Todd would greet the people as they walked by in the halls with a “gentlemen” and a very smoooooth, “laaaaaydeees”…to the pretty girls that walked by. I told his mom how charming I thought he was and she came back with, “Oh yes, and completely full of himself…” with a bright smile on her face.
He’s the same as any other 33 year old. Katie is the same as any other 10 year old. I guess in my mind I thought that people with Down syndrome stayed young in their behavior forever. I was so glad to be wrong. Things will change for Abby. She’ll grow up, she’ll love babies, she’ll have boyfriends, she’ll want to drink beer. We’ll deal with that when we get there. It’s going to be different, but the good parts will be better. They have been so far.
Today I get to go hang out with Todd and the other self-advocates and people attending the part of the NDSC conference that is just for people with Down syndrome. In fact, I get to spend the next three days with this fantastic group of people. A group that I could not be more thrilled that Abby will be a part of when she grows up.