When Dylan was born everything was pretty intense. 3 major surgeries including open heart surgery in his first year of life. Four therapists visited our house on a weekly basis. I kept a chart of all the exercises they suggested, and I wrestled with constant guilt when I didn’t cycle through the whole list as the week went on. And weekly doctor visits just to ensure his health was on track.
Now that I have Haylee as a point of comparison, I can also say that certain aspects of Dylan's early years were easier. He rarely cried. He slept 10 hours at night starting at 7 weeks old. Even his physical limitations sometimes came in handy. I never had to worry about him climbing onto a bookshelf and pulling it down on top of him. He was more cautious than Haylee, so it was Haylee who ended up with more bumps and bruises then Dylan did. And parents of adult children with Down syndrome often comment upon the fact that their son or daughter with Downs is the "easiest" of the bunch. Although the individual stories will vary, the overall portrait of family life with a person with Downs in the mix is a positive one. Harder in some ways, yes! It’s hard to specify the joys that come from a child with Down syndrome. Perhaps I experience even greater pride in his accomplishments because they once seemed impossible. But my joy as a mother comes, like it does for any parent, from the small moments of wonder and beauty and human connection.
As Dylan grows up, he's going to face the real challenges. According to much of the literature about Down syndrome, maybe he can’t live independently. It is at best uncertain whether he will go to college or get married, and very unlikely that he could have children of his own. He may not be able to fully support himself financially. But with the amazing resources our children have today, he could do all the above...
Dylan is limited. He is needy. That’s true of all babies, and to some degree all toddlers, and yet it is also true of many adults with disabilities. Having Dylan in my life has made me wonder, though, how true those words — vulnerable, limited, needy — also are of me.
Through Dylan, I have come to realize that interdependence is constitutive of my humanity. That it is a gift to me when I need other people, when I form relationships of mutual giving and receiving. Similarly, it is a gift when I am able to offer myself in service to others based on my particular abilities. Having Dylan, and interacting with other children and adults with disabilities, has changed the way I see the world. Instead of categorizing into able and disabled, I see us all as interconnected. And I believe that every person has something to teach me, just as I have something to offer in return.
Is having a child with Down syndrome harder? I suppose the answer is yes. And yet the largest source of stress associated with having Dylan in my life has nothing to do with his particular needs. Rather, it comes from knowing that our son is entering a world in which people assume they know his abilities (or lack thereof) simply by looking at his face, with its flat features and extra fold of skin around his eyes. The hardest thing about having a child with Down syndrome is knowing that there are people who would compare him to a not so smart person, and people who assume he takes more from us than he will ever be able to give.
I have the privilege of being the mother of a child with Down syndrome and, through him, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day without him or the presence in my life or in our community. The fact that these two will forever love each other for who they are is more then I could ever ask for as a mom. The love they have and bond will forever be a gift!
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