Author: Christie Taylor

There are all kinds of sayings about “You rise to the level of those you surround yourself with.” It’s one thing to “know” something, it’s another all together to do it. I can not tell you how the quality of my life has changed since I put that into practice. I fell into it by accident when Wil came into our lives. Much of what I knew about Down syndrome was negative. Or if it was positive, it was a very broad, empty positive. Meaning, I couldn’t get a grasp on it. I heard things like, “But he will always be happy.” Ok, but what does that look like? Will he just walk around smiling all the time? Like, what the heck does that mean? I want to know if he will walk, if he will talk. What about his sisters? What about my marriage? What about his adulthood? Don’t give me this happy stuff. I need something to hold on to. I needed something concrete. I’m not talking about a crystal ball or a promised future. None of us have that. I just want to know what this day-to-day life will look like. I needed a picture; a real life snap-shot to hold on to. So I went out to find it.
I learned about our local Ds support group and went to a family meeting when Wil was a month old. When I walked in, I saw exactly what I needed. A group of little 3 to 4 year-old kids, running around the room and playing just like any other 3 to 4 year-olds would. Except they all had Down syndrome. I instantly started to cry. I wasn’t sad. I was very overwhelmed. All the reality I wanted, that I was searching for, was instantly upon me. It was just like, “BAM, this is your new life.”
The parents in the room all walked over to me. They commented on how adorable Wil was, and how it’s hard to understand now, but I will love this life. And I sat down with these parents, and they talked about potty-training, and visual learning, and all kinds of other things. Then they laughed about the little idocyncrasies our kids have and I knew I was in exactly the right place. I would need time to take it all in, but these parents held what I was looking for. This was my snapshot, my picture. It was not a crystal ball, but it was a place where I knew I would have the support I needed as I made my way forward. These parents saw the realities as they were, but also laughed and shared openly with another. They viewed life in terms of solutions and support, not in terms of vague promises or negativity.
I can’t look to the past, or what was “supposed” to happen. Or past harms or past hurts. I need to look at right now. Who is the best I can be right now? Sometimes that is a lot of work, and sometimes it just works. I never quite know but that is what keeps life exciting. There is always a place to jump from one platform to another higher platform. Life is anything but stagnant. As my life changes, so have I. Quite a bit, actually. There are some who have been upset with me “changing.” I understand, I get it. By nature, a lot of us like things to fit in their neat compartments in our minds. But heck, my life has changed quite a bit, and I have changed with it. I find that fact quite exciting.
Life does not leave anyone untouched. And you know what, I’m so happy I have a child with Down syndrome. He really is happy, too, but it has nothing to do with him being “happy all the time” because I can assure you he is not. He feels a myriad of emotions and is not shy to express them. He is happy because he loves who he is. When we talk about him having Down sydnrome, he just says, “I know” and moves on with what he was doing. As we move into the teenage years, we will likely have more in-depth conversations about this, but that’s ok. I have amazing support, and I love my son. We will make it through and we will make it through stronger and better for it. I have the strong friends that have overcome so very, very many difficult challenges. Just to know these friends gives me strength that I can do this too. These friends, who could choose to be bitter, are some of the most compassionate and grateful people I know.
When I gave away the idea that life is supposed to be easy, and decided that life is a place to learn from and grow, and surrounded myself with people that believe the same, that is the day my life changed for the better and continues to do so.
I don’t need a crystal ball or even want one. I just need something concrete I can hold on to. And that concrete fact is, ironically, that life will always change, and I have the power to change with it. Continue to fly high, friends!