I stopped at my usual morning iced coffee place, and as I was paying for my caffeine, the woman behind the counter asked what Caden has. She asked because I was wearing my Team Caden shirt — a shirt I wear with pride as often as possible, a shirt that has raised money for other children who are medically fragile.
I stuttered over my words. She was the first person to ever just ask me that. “What does Caden have?” There was no one word answer, no specific diagnosis. So there I was spatting off a bunch of symptoms as the line behind me began to grow. I could tell she was sorry she asked. But she did, so I felt she needed to know.
After I listed a bunch of medical terms I’m sure she didn’t understand, I thanked her for asking me. I appreciated the fact that she wanted to know what was wrong with my son. All too often people avoid the topic of Caden or just look at me with those “I feel sorry for you” eyes, or they possibly even turn away.
As I continued my drive to work, I thought about what my son might say if he could. I envisioned him relaying a message for all who had no voice, for all the children the world does not understand, for all those who are “different.”
What he would say:
Please do not feel sorry for me.
I know it’s hard not to because I can not do the things others my age can do. I can not sit up, walk, talk, run or eat, but I can feel. I can feel the breeze on my face and the warmth of the sun. I feel the love that surrounds me, the touch of my daddy’s whiskers as he kisses me, my mommy’s heartbeat as she rocks me to sleep. I hear my brother and sister’s conversations and smile when they mention my name because I know they, too, love me.
I may not be able to do the things I want to but I’m lucky because I’m so loved. I know I will always be protected and my mommy and daddy will never stop fighting for me. They take me everywhere and do their very best to give me all of life’s experiences. Because of this I’m luckier than many, so please do not feel sorry for me.
Please do not be afraid to hold me.
I know I have many medical conditions which make my body more fragile than most but I promise I will not break. Holding me is like holding any other child. If you feel comfortable with me in your arms, I will respond positively towards you. You will feel my body move as I laugh. You will see me look up into your eyes with love. I know it may seem scary to you, but I want to be hugged; I need to be held. I want to know that you are not afraid of me. Please ask to hold me next time you see me. My mommy and daddy would appreciate it too.
Please talk to me.
My body may be broken, but my mind is not. I understand you, and although I may not be able to respond verbally, I want to. I have so much to say to the world and the more you talk to me the more I will learn so maybe someday I will have a voice of my own.
Please don’t talk to me like I’m a baby. I know that it’s hard sometimes because I can only do the things a baby can do, but I’m a little boy, and I understand everything you’re saying. And because of that, please watch what you say in front of me. Your words can hurt me, heal me, scare me or comfort me. They can make me laugh. They can make me cry. Your words can give me strength or break me down. So please speak positively to me, encourage me and let me know you love me.
Please let your children play with me.
I’m not contagious. You can’t catch whatever it is I have. So please allow your children to play with me. It’s hard watching other children play without me. Even my own brother and sister play around me and not with me. Although there’s very little my body allows me to do, I can play. I know it’s hard but please try to find a way to make me a part of your world. I want to be able to do all the things you can do and maybe with your encouragement, some day can. Please don’t walk away when I’m near; walk towards me; hold my hand; try to make me a part of what you are doing. You may be surprised as to what I am able to do.
Please do not be afraid to ask questions.
My mommy and daddy are so very proud of me and always appreciate it when people ask about me. They always say they would rather you ask than walk away. I know it’s sometimes hard to come up with the right questions to ask but that’s OK. I don’t mind if you ask what’s wrong with me. My mommy and daddy know what you’re asking and it doesn’t offend them. What upsets them is when you avoid me or the topic of me. In their eyes I’m a perfect little boy with a broken body. That’s all it is. My body doesn’t work right because my brain got hurt. Otherwise I’m as typical as you or your child. Ask questions because knowledge will open your eyes to who I really am.
Please listen to me.
I know I cannot put words together, but I do have a lot to say. I say it with my expressions, my body and my eyes. If you pay attention, you can understand what I am trying to say. I may be saying “thank you” or “I love you.” Or maybe I am letting you know I’m in pain or am scared. Just like a newborn I have different ways of telling you my needs. Please do not assume you always know what’s best for me. Try your very best to listen to what I have to say.
Please appreciate the little things.
I know it’s hard sometimes and life can get pretty hectic, but please take the time to appreciate the little things. Appreciate your family, your friends and the world around you. Enjoy the beautiful sunrise, the sweet smells, and those perfect days. I know I do because I never know where I will be tomorrow. I’ve missed too many seasons and too many memories because I’ve been in the hospital. I’ve watched too many friends like me pass away. Life is so precious no matter who you are or how you live it. I may be limited with what I can do, but I know how very lucky I am. I’m lucky to have a family that loves me so much. I’m lucky because I was able to go to school today rather than lay in a hospital bed.