Up until two weeks ago, my child, who has several life threatening diseases, was a child with an invisible illness. After two years of teaching him to eat, it became apparent we were failing to make progress. We had a feeding tube placed. Suddenly, my son’s illness was no longer invisible. It was visible to strangers. The 12 inch tube that comes out of his stomach hangs just below the end of his t-shirt. It gets in his way when he’s playing, and people notice it and stare at it. I still remember this week the look on the face of the mom that walked past us. She couldn’t stop staring at his backpack and his tube. There was a look of wonderment, confusion, and judgment. I felt powerless. I wanted to run to her and explain everything we have been through. Yet, in that moment I knew it would be one of many, many looks we will get going forward.
I get it because I was that person too. Anytime someone that walked before us with a disability or disease I would stare. My mind would race about what the person may be experiencing, what their life must be like, and most importantly the lengths they must need to take to simply survive. The same morning that woman stared at us at the park, my son and I left in discomfort and went on a walk. We walked a path along a lake. The wind was breezy, and the boats were rocking back and forth on the lake. My son was not at all concerned about what had just happened at the park. However, I was consumed by it. Then suddenly I saw two vans in the distance, and there was a pavilion to our left. It was filled with adults with special needs. They were on a picnic. Laughter was filling the air. I smiled as I saw how despite it all they were grown and HAPPY. For a moment, I felt like I was peering in to our future. I silently wondered if my son would have friends that were like him as an adult. Would he have care takers as kind as the people with this group?
We continued walking and approached the van. More and more adults with special needs were stepping out of the van. There faces were lit with delight and happiness to be out with friends. Their care takers seemed stressed but willing to give them these memories. We passed a woman that had fallen to the ground. I looked over and a older woman, who also had a physical disability, was cheering on the woman to get up. On the ground, she looked defeated and deflated. I watched a group of women kindly cheer her on. She extended her arm to her friend and got to her feet. Everyone cheered and clapped. I was incredibly touched in that moment. What I witnessed that morning wasn’t people with disabilities. I witnessed people loving and helping their friend; A friend that had fallen to the ground and felt defeated. They lifted her up and helped her to her feet. I realized that there are people out there that won’t stare. There will be people out there that will cheer on my son. They will accept him for everything he is and is not. It was as if God sent me this moment to remind me that the displeased looks of strangers should not effect me. I was reminded that while we may get stares, we will likely get a lot more cheers of encouragement.
Suddenly, I felt my entire thought process shift about what things will be for our future. It does not matter that a few random people stare at us. In fact, who cares! They do not know the lengths we go to care for our child. They do not know the sacrifices we make to give him the best life possible. All they know is he looks a bit different. They may think feeding him via a tube is strange and weird. But I know that tube is sustaining his growth, giving him the opportunity to learn and develop, and it’s giving his heart the nutrition it needs to function properly. If we spend our time focusing on the negative moments, we start living in the negative. However, when we are blessed to see the pure love of the human spirit, we start to realize that this world is full of incredible souls that love with no condition. They have spirit that will encourage and help develop those around them. They are the people that I want to be surrounded by. They are the people I want to think about when I doubt my choices and our journey.
Strangers will always stare. It will always feel uncomfortable. Instead of being angry, the next time someone stares, I am going to simply ask them if they want to know what is going on with my son. I realize this is yet another way for me to advocate for his inclusion and acceptance within society. If I talk about it, the less weird it will seem to those around us. In fact, all of our friends and family think it’s fantastic my son is finally getting the nutrition he needs. I think any stranger we meet and stares, would love to know how much he’s thriving now.
I know that group that day barely noticed me. But I noticed them. I wish I could thank them for teaching me that no matter what positivity is always possible. Thank you to that group. Your fight and your life is not in vein. I saw you that day. I saw your love and kindness, and that love and kindness is now in my heart.
Have you ever experienced something that completely altered your mind frame about disability or disease?