From Our Editor in Chief – Life Goes On

Editor in Chief (EIC) - These next questions make me uncomfortable, but I’m going to ask them anyway. These questions are probably influenced by that 90s drama Life Goes On, which as you recall Corky, the son with Down syndrome, had a girlfriend. Answer if you’d like.

Chris - I also remember this TV show. It was one of my family’s favorites. There were times in Jr. High or high school, however, when I was with my friends, that I would make fun of the show. I have to admit, I feel a lot of shame about that. Any person with Down syndrome or a learning disability that I knew, I treated with respect. But how hypocritical I must have been when a friend did something silly, or dumb, or stupid for me to reference Corky or the theme song of Life Goes On. I can’t go back and change it, but I feel very shameful for anytime I made light of someone’s intellectual disabilities. Every day for the rest of my life, I will try to make that up to Alea as I feel like that let her down.

EIC - Don’t be too hard on yourself here, Chris. For people of our generation, Corky is a name we’re all familiar with, and we’re all not proud of using it the way we probably did. It’s like my good friend Oprah says, “When you know better, you do better.” She’s quoting Maya Angelou when she says that, so out of the mouth of two or more influential women, it must be true.

Looking ahead, what type of life will Alea likely have in her adult years? Will she be able to live on her own? You posted a YouTube video about a girl with Down syndrome who was planning for college. Do you see college as a possibility? Is that common?

Chris - Cindy, I will be honest, looking too far ahead scares me. There is so much unknown that I can get caught up worrying about. Right now we are dealing with some effects of pulmonary hypertension. Alea has severe sleep apnea. I know several parents who are dealing with so many more health issues than we are. One is dealing with leukemia; one is dealing with seizures; and another is dealing with diabetes and celiac disease, as well as Down syndrome. I could just make myself sick trying to worry about it all.

I have dealt with some pretty significant anxiety in the past. I still do on a daily basis. It is something I have to fight constantly, so I have to be mindful of the things I can control and the things that I can’t. Our plan for Alea is for her to be the best she can be. We see it as our responsibility to see to it that she reaches her full potential, just as it is with our other girls.

Jodi works tirelessly doing early intervention with Alea trying to get her skills to develop as quickly as possible. I do know that she is a very smart little girl and works hard to learn. I can also tell that she has social intelligence that is on par with where our other girls have been at the same age.

Long story short, yes, college is a possibility and it happens more than I ever realized. Our role is to help her get there if that is something she chooses to do.

I will admit, I catch myself wondering how we are doing with keeping her where she should be. There was a neighbor girl in our church that was born 10 minutes after Alea. When I see her in church it is hard for me not to look at her and see what she is doing: Is her head strong; can she grab toys; etc.? I have almost caught myself wondering how Alea is progressing in her development when compared to her little church friend. When I catch myself doing it, I try to stop and remind myself that Alea is Alea. She will be her best, and her best already is a blessing to me.

EIC - Will Alea be able to get married? Are there laws preventing those unions?

Chris - I am not aware of any laws preventing this. There is a movie out about a couple named Monica and David. It is about a Down syndrome couple that got married. I started watching part of it a couple of weeks after Alea was born and it was hard. There were challenges the family faced (it had nothing to do with the marriage) that I wasn’t ready to think about at that time. I need to go back and watch it now.

EIC - Are kids a possibility for Alea? (I think they are, because I saw a Law and Order episode once where a girl with Down syndrome was impregnated.)

Chris - I do not have information on this.

EIC - What is the common life span of someone with Down syndrome?

Chris - I have heard it is around 60-65 years. Part of me thinks I should do some research, while part of me doesn’t need to.

EIC - What are your hopes for Alea’s future?

Chris - I hope that Alea can do what she came to earth to do. Help those that need her. The other day I got home from work after a long week of work. I was not in a good mood. She would not take her eyes off of me. She followed me with these caring eyes wherever I was in the room. Her social awareness is such that if you look back at her she won’t keep looking in your eyes as there is that perceived un-comfortableness. We all feel it. That was not the case this night. She looked at me constantly with such loving eyes. I finally picked her up and she laid her head on my shoulder and gave me a hug. She has a gift to tell if someone needs help. I know she felt that I needed to feel of her spirit, and she made it happen.

We will parent her just like most would parent any child. We will do anything and everything in our power to give her the confidence, practice, and support to be the best that she can be. We love her and are glad that she is a part of our eternal family.

Next month: School questions.