Since 2012 – I looked this up – World Down Syndrome Day has been in place to create awareness for individuals who are sporting an extra chromosome. So today, you will notice a frenzy of posts showcasing these spectacular individuals. My own experience has been full of beautiful reminders on how parenting skills can be stretched and molded in an effort to accommodate someone who the world sees as different.
Several years ago, I had met a woman who was assisting me with a project. As we chatted, she grabbed my hand and said, “I totally get being the mother of a special needs child. My daughter has ADD,”. It took me a second to absorb the statement. Trying to grasp that she was comparing ADD to Down syndrome was confusing. I mean, my kid will always need guidance. He will always require an advocate, a driver, a financial planner, well, the list is lengthy. While I am compassionate on her struggle to identify what the correct course would be for her daughter, there is no comparison of the two. But, I didn’t say that. Because what I have learned through this journey is that comparing struggles is futile.
My experience is vastly different from anyone else’s. Parenting is hard enough but when you add some extra chromosomes to the mix, well, it can go either way. It is tough on marriages. It is tough on the family. The fear of not knowing what will happen to them when you are gone is real. No matter how much planning you do in advance, there is that aching pain of them being without you.
But, then there is the present moment where I can’t believe how far we have come. Being employed by a community who loves and accepts him. He is active in sports, can cook, clean, do his own laundry, and will tell you that he “loves his life”. This might not seem like much to the average person, but to us, it is everything. He makes the world a better place and well, I like to think that he makes me a better person.
Square Peg, Round Hole 