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Searching for Meaning in Life and Loss as the Parent of a Child With Down Syndrome

Today is a day I prepare to attend another family’s memorial service for their youngest child. Sadly, this is not the first funeral for a child in my community. In fact, it will not be the last time our community will grieve. This stark reality can make it seem impossible to carry on each day. Your heart goes out to the family. You know whatever you try to do to help them that it will never be enough! Then, there is the good old “survivor’s guilt” that will hit you on your way out of the service. Why does my child get to live? There are some hard, deep emotions and thoughts to work through. Or you could bottle them up, shove them down and not deal with the natural emotions that flood over you in waves. But we all know that is not healthy. Eventually, you get to a point where you value life as even more precious than you did the day before. Believe it or not, you are one day closer to your own death than you were yesterday. Many have pondered the meaning of life. I am no great philosopher (or even a good one.) Yet, with every loss of life, I get a better glimpse of the meaning of life.

When my son was born with Down syndrome, I went through the stages of grief. Not because I didn’t want my son. But because I had already made up a fake future of accomplishments and deeds. I had to mourn my “fake” expectations for him. Let me tell you how much my son has taught me about life! Alright, that would take a book or two to complete. Let’s just say I am genuinely grateful to be a part of the DS community. I can see the value of life. No, I can feel the value of life to my core.

I believe the meaning of life comes down to pure love. Love can be seen in acts of kindness, kind words, acceptance, inclusion, listening to others, giving help and in so many other forms. I was lucky enough to see some pure love walk this Earth in the form of a wonderful lady named Victoria. She showed grace beyond belief, a caring nature to every little child she saw, tenacity and grit to compete in sports, and fight that horrible “C” word. She showed everyone that knew her the true meaning of life, love in every form.

Photo by Matt Hoffman on Unsplash