Jill Zane

@jill-zane | contributor
Jill Zane is a mom to triplet 3-year-olds and a public school teacher. You can follow her personal blog, ‘Cause Caden Can… for updates on her “medically complex, chronically ill” son.
Jill Zane

When Others Ask About Your Child's Special Needs

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. Yes… today, I am one very lucky little boy. This post originally appeared on ‘Cause Caden Can. Sign up for what we hope will be your favorite thing to read at night .

Jill Zane

Ehlers Danlos Syndrome: How My Son's Smile Keeps Me Going

When people ask me how Caden is doing, I put on my “smile” and usually respond with something like, “Caden is Caden but at least he’s home” or “Caden is stable” or if it appears the person doing the asking is hoping for great news, I might even say “Things are good.” But most of the time, they are not. People ask because they care; because Caden has become a part of their lives. But most people, understandably so, do not want to hear every detail of Caden’s day to day struggles; of how we were up all night trying to make his pain more bearable by venting his g-tube and giving him yet another glycerin suppository or holding his head as he vomits. No… people want to hear “Caden is doing well.” And so… that is what I try to say with a “smile” on my face. I “smile” so that others feel better, less awkward and more at ease. My “smile” forces me to stay positive; to be an upbeat, “you can do it”, inspiration to other parents who have sick children. No one wants to see me moping around, wallowing in self pity…so I don’t. Or at least I try not to. Now this is not to say that my smiles are never genuine. I smile when Caden smiles up at me or when he laughs his notorious belly laugh. I smile the few times I get to watch him sleep peacefully wondering what he is dreaming about that allows him to be comfortable for the first time all day. I smile when we get to be a family of five with no nurses or therapists. I smile when I see Emily and Ethan hugging Caden or holding his hand. But often, my “smiles” are simply disguises hiding the fear, anxiety, anger and sadness that I feel as I watch my little boy’s health decline. They suppress my need to lash out, yell, kick and scream. They allow me to temporarily bury my true emotions during difficult times or when I know acting on these emotions will only get me in trouble. But when Caden smiles, it is always genuine and I honestly do not know how he does it. Children are honest; sometimes brutally honest because they can be and they can get away with it. They wear their emotions on their sleeves. They will tell you that you have gotten fat or you are going bald. They will scream when they don’t get their way and cry when they want something. They do not care what others think. Children are genuine. And so are their smiles… So when I see Caden smile after just coming out of his fifth surgery in five weeks, I know it is genuine. For some unknown reason, Caden is happy. Caden smiles more than any other child I know. Why? Doesn’t he know what’s going on? Doesn’t he know he can not do the things his brother and sister can do? Shouldn’t he be angry or jealous? I know I would be. But he smiles. In fact, all the sick children I have had the pleasure of meeting over the past three years… smile. And they smile a lot. Caden’s smile is what keeps me going. It is his way of saying, “Mommy… everything will be okay.” It comforts me when my heart hurts and my spirit is crushed. His smile is the door to his pure soul and kind heart. It assures me that I am doing my best and he knows it. It is his way of saying, “I love you Mommy” and letting me know that no matter what happens, everything will be all right. Caden’s smile is my hope. This post originally appeared on ‘Cause Caden Can… Smile. Like us on Facebook.