Look past the body

As the parents of special needs children we are accustomed to the stares. Everyone does it, sometimes because they are so damn cute, most often because they are “different”. It’s the same human compulsion that makes people want to see the accident at the side of the road and the carnage of metal and man. Kids do it because they are curious and want to know why that girl or boy is different. Why adults do it is still beyond me, perhaps pity or because they have a special connection in their life and receive the same joy as we do from these special people. Here is a comment left on the blog that I want to make sure everyone reads because it is honesty from a child:

Kristina was one of your class mates. She came home one day and told me [mom] there is the beautiful girl in my class named Faith and told me how she helped guide you with work etc. Kristina said mommy this girl has a disease and some children don’t bother with her. Kristina then turns around and says mommy all children are equal and should be treated the same. During a Halloween parade at school she had pointed out to me who Faith was and after I saw that precious little smile on Faiths face I knew deep down in my heart my daughter was right. Faith you are a child from God and I pray and hope you fight and keep that special smile on you face in this world and the next. God Bless you Faith..

A long running argument I’ve always had with my Mother is that when my time comes. My final preparations are really simple. Comfortable clothes, heck a t-shirt and underwear or nothing at all are fine with me. Let my remains at least be comfortable. Who the heck wants to wear a suit for eternity. As for all the glamor of a funeral a cardboard box will do just fine and no wake. Her argument is that everyone needs to see the body as a form a finality to know that person is dead and pay their final respects. My opinion is if you didn’t take the time to do that in life you too late and only doing it for yourself. When we announced that the casket would be closed for Faith’s wake we got a few looks from family, but most were smart enough not to question us. Having experienced this my only opinion that has changed is it is important for the family in our case the parents to know exactly how much of an impact our little girl made on the world. So as for the wake I’m glad they all got to see the Faith they knew and loved, and am so overwhelmed with the outpouring of support and stories from some people I have never even met.

We all need to look past the body and look to the souls of the people we meet. Martin Luther King, Jr. once said “I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character.” this is what it’s all about people. We come in all different colors, sizes, shapes & religions. With the exception of my son Jonathan who again is wired differently with Williams Syndrome who don’t know the concept of stereotype we unfortunate “typical” people do. The next time you meet or are privileged enough to have a person with “special needs” cross your path in life take the time to know the soul you are interacting with and not just the body.

I will share with you my very personal and last experience with Faith’s remains on the day of her funeral. As a family we were there to say goodbye to her one final time. My gaze shifted between the beautiful smiling picture above that represented the Faith we all knew and loved and the very cold lifeless body that laid in the coffin and I knew it was the soul I cherished so much, not that little body. Her smile was gone, the glow from her eyes was dimmed when I gave her one final kiss on her head she did not smell like the Faith I knew and didn’t fight back like the Faith I loved so much. There was one in my family and we knew who it would be who walked away from the open coffin to say “She looks so peaceful, Like she is sleeping”. Anyone who really knew Faith knows she was always a force of nature and “peaceful” was not an adjective I would ever use for her, she was strong, determined and rarely took no for an answer. Faith was officially pronounced dead at 7:28PM on May 20, 2012. Many hours before that she broke through a medically induced coma and paralysis for just enough time to open her shining eyes look at both Mom and Dad and move her little lips in what we hope was either “I Love You” or goodbye. That was our Faith and that is when we said our last We Love You and to either fight or rest, we will always love you and be with you.

5 thoughts on “Look past the body

  1. Amen Joe! Not only do I feel privileged to have known Faith but I have also learned so much from her. She looked at the world as we all should. She just had love in her heart for everyone and never judged anyone. If more people were like her I know this world would be a much different and better place. I know that she was taken so soon because she was meant to be an angel who will watch over and help others. Your friend’s story at the luncheon just confirmed that for me. She was a gift to all of us on earth from God on loan and now she has been called back to do God’s work.

  2. Beautiful Joe! If Faith has inspired you to write, i agree! Your words are poignant and I certainly look forward to continue to read what you have to say. I love you all, Uncle Joe! XOXO

  3. “Look past the body”. Your words make so much sense. It’s something I felt as a child growing up, but didn’t know how to articulate then. My mother was stricken with polio when she was three. As an adult, she wore a leg brace and her gait was uneven. I remember adults staring obviously at her whenever we were out. My mother was strong; she may have been used to the stares. It made me sad. Reading your words reminded me of how I wished then, that those adults who stared could have “looked past the body”.

    Faith brought great joy to the people around her. Her strength and determination were inspiring. Her life is a reminder of the the importance of “looking past the body” to see the heart and soul of others.

    Blessings to your family.

  4. I, for one, was happy that Faiths casket was closed. Had I seen her in the coffin, it would have been my last memory of her. Instead I am left with the memory of her smiling face bursting into the therapy room at school as she was the last time I saw her. Thank you for sharing and as long as you write these blogs, I will read them. May your healing journey take you to the sunny places where Faith would want you to be.

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