Down Syndrome Awareness: We still have lots of work to do

“I do not understand how their degree of happiness and joy derived from parenthood could be enhanced by the child’s handicap – there is something distasteful about it, also a total denial of reality associated with the choice to have a child with Down syndrome.”
“Some use special needs as a way to force others to just smile and they are so happy, and it is wonderful: It is work! 24/7.”
“I don’t mean to be politically incorrect, but from what I know about DS I would never be able or willing to take the gamble that my potential future child would be as disabled.”

I read the above comments in an article recently. It hurts to read such comments. It hurts deep. It hurts because I know the truth and I can’t get the truth out fast enough. Whenever I believe we are 2 steps ahead, I read comments like the above and realize we are still light years behind.

Here is the problem: We are wired to find the easy way. And we want perfection. Why? Because we believe perfection and ease will bring us happiness. No, not happiness. Let’s go a step further. We think perfection and ease will bring us lasting fulfillment. An ever-present joy that fills us up and takes away all those empty and hurting places within us. We are pleasure seekers by nature. The tough part is, pleasure only lasts so long.

But here’s the solution. Growth through our challenges and giving of love. These are what bring fulfillment, and they are not stagnant. We don’t reach a peak, and fulfillment is there. It’s an ever-growing and ever-loving and ever-giving process. How do I know this? Raising a child with Down syndrome. And guess what? He is not “perfect” and he’s not “easy.” He is the so-called burden. A woman I know who was recently having her eggs harvested said directly to me that she didn’t want the “abnormal” eggs; the eggs that may produce a child with Down syndrome. Surely I understood, she said. Meaning, I knew what this life of raising a child with special needs was first-hand. I responded, after my shock, that surely I did not understand. That having a child with special needs was the best thing that ever happened to me, even though I didn’t realize it before I experienced it. When, oh when, will we get over the stigma that perfection is where it’s at? When we will get over the Darwinian aspect of survival of the fittest? When will we finally place the greatest value on lifting one another up as true success in life? If you look back at our greatest leaders, spiritual and otherwise, they did not seek perfection or ease. They took on challenges with vigor, sought to bring growth to society by lifting others to higher levels backed with love. When will we realize that not our perfection, but our differences give our lives a much deeper sense of meaning and fulfillment?

So many before us have fought hard for the rights of our children with 47 chromosomes. Because they knew not the burden that is so heavily spoken of, but the love our kids have and bring to our lives. They know from first-hand experience, not from those who surmise a burden from the outside looking in. We do not fight for the “burden.” We fight for the value of kids with Down syndrome. We fight for giving. We fight for growth. We fight for acceptance of all. When will we rise above our desire for perfection, and instead realize how powerful we can be when driven by life-giving love?

Our friends with Down syndrome are abound with love. Beyond the capacity I knew was even available until I experienced this life first-hand. I will not deny that I do need to give more for Wil. As a commenter said, it is 24/7. But here’s the thing that they missed: the smiles are not forced, and I’m not forcing happiness on anyone else. In fact, Wil’s kind of joy is the most natural experience there is. You should see his eyes light up when he hears his favorite song and starts dancing on the spot. You should experience eating chocolate ice cream with Wil and try not to hum “mmmmmm” along with him the entire time. I’m telling you, you can’t help but rejoice over the smallest things in life a million times a day in his presence. The little joys that lit you up as a child all come cascading back and make you feel that special kind of alive you thought you once grew out of. There is no force, there is only the natural feeling of joy and companionship that is innate in all of us. Wil hasn’t forgotten that, where many of us have in our pursuit of perfection.

Of course, the argument could be made that those moments of joys won’t pay the bills, or take away the therapies and the doctor visits and the other challenging pieces. But here’s the thing, it’s not the burden you may think it is. I have met the most amazing, proactive people doing the things I do for Wil. The people involved in these endeavors are proactive leaders filled with just as much vigor and love as the life-changing leaders I mentioned above. But they fight a closer to home battle. They fight the stigmas we face in every day life. They fight for inclusion in schools which has proven to be beneficial for ALL kids involved. Inclusion will overcome many of the beliefs in the comments you read above. Kids who are in inclusion schools know our kids with special needs for the valuable individuals they are. Also, the Buddy Walk walks I have been on, the marathons I have run for National Down Syndrome Society, and being involved with the parents that champion for their kids. They say you rise to the level of your peer group. Well, I’ve got a darn miraculous and proactive peer group. They are true leaders. These are people that lift me up and help me be a better person in this life, so I can do that same for others. I would not know this part of life without having a child with Down syndrome.

The burden is not in raising a child with Down syndrome. The burden is in what I was missing in not knowing the miracle of raising a child with Down syndrome. I was missing out on so much I didn’t even know it. Without awareness, we live in ignorance. What a shame to allow fear to close ourselves off from truly knowing our beautiful friends with Down syndrome.

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