Monday, September 29, 2014


I stopped at my usual a.m. 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 as 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"


Please do not feel sorry for me...

I know it is 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 am lucky because I am 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 am 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 that maybe someday I will have a voice of my own. 

Please don't talk to me like I am a baby. I know that it is hard sometimes because I can only do the things a baby can do, but I am a little boy and I understand everything you are 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 am not contagious. You can not "catch" whatever it is I have. So please allow your children to play with me. It is hard watching other children play without me. Even my own brother and sister play around me and not with me. Although there is very little my body allows me to do, I can play. I know it is 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, someday can. Please don't walk away when I am 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 is sometimes hard to come up with the right questions to ask but that's okay. I don't mind if you ask what is "wrong" with me. My Mommy and Daddy know what you are asking and it doesn't offend them. What upsets them is when you avoid me or the topic of me. In their eyes I am 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 am 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 can not 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 am 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 is best for me. Try your very best to "listen" to what I have to say.

Please appreciate the little things...

I know it is 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 have missed too many seasons and too many memories because I have been in the hospital. I have 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 am lucky to have a family that loves me so much. I am 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.


  1. Hi Jill,
    This is absolutely beautiful and perfectly describes Caden. To know him is to love him. We miss him so much!! Please give him extra hugs and kisses from Ccmco family. xoxoxoxoxoxoxoxoxoxoxoxoxoxo

  2. Oh how I love to love him. Thank you for sharing him with me.

  3. This was posted by a friend this morning, and I've read it at least 4 times today and shared it on Facebook. I could have written this myself. I have a 4 year old boy who is so much like your Caden- thank you for giving our sweet children a voice though your writing. I will definitely be reading more!

    1. Thank you for your kindness. I checked out your blog and I added it to my blog list (I hope you don't mind). It seems we have a lot in common. Many doctors think Caden has a mito disease but don't know what. Your family is beautiful and I will be following your journey as well.

    2. Hi Jill, he is a mighty warrior, as are you. This is not an easy path, we all have a different challenges, yet I feel the same when it comes to our children. Following!

  4. You know what sweetheart, it does not matter how many conditions you have, you keep smiling that gorgeous smile, and do what you can, you may have, what you refer to as "a broken body and a hurt head", but that does not make up who you are, what i see, when i look at your photo, is a fun loving, cheeky little warrior, who makes me smile, you, your brother and your sister are very special children, who your mummy and daddy love very much, I too, have a boy who has special needs, but all i see is a cheeky monkey, who is learning lots of new things, just like you honey, so you keep getting stronger each day, take one step at a time, and learn lots of new things. And to mummy and daddy, keep up your good work, XXX

    Kind regards, from New Zealand xxx

  5. This made my day. I am a mother of one of these angel children, he would be 27 in Nov. He has been gone for 12 years and how I long to hold him and have him with me again. I love what you say about talking to him and asking his mommy or daddy about him. I find myself even now so drawn to these sweet spirits and even I shy away from approaching them, all I want to do is hold them and love them but I let my barriers talk me into thinking I may offend the parents. Your words are a fresh reminder of how I felt pushing my son in his wheelchair and the stares I would get. I will make a point to approach and offer my love and support for this sweet child and his parents!

  6. What an excellent post, and what a beautiful family! I cried through the video on YouTube! Although I cannot relate to even a fraction of what you, Caden and your family have been through, I can relate in a small way since I've been paralyzed from the neck down for the past 11 years due to a car accident. I wanted to share a quote with you:

    Stellar spirits are often housed in imperfect bodies. The gift of such a body can actually strengthen a family as parents and siblings willingly build their lives around that child born with special needs. – Russell M. Nelson

    God bless you and your sweet family!

    – Heather

  7. Beautifully said!! Caden sounds like an amazing little boy.

  8. My name is Jeyson and I have a child aged 5 years old with CP. I would like to contact someone who has a wheelchair for my child. I would appreciate your help.

    1. Jeyson....I don't know what state you are in but most states have a place where you can either exchange or purchase used special needs equipment. Another option might be a local charitable organization like the Elks who do so much for special needs kids. I hope this helps and thanks for being a part of my sons journey.

    2. Jill Zane I'd love to talk to you and swap stories.. I have a 6 year old who was diagnosed with infantile Neuroaxonal dystrophy. Hope to hear from you soon. You can find d me on fb under Jennifer Goff.

    3. Jennifer....I tried to look you up but there were too many people with your name. If you LIKE my sons FB page I can friend request you from there. I would love to talk.

  9. Thanks. you are so kind. Well right now I am in south America but some american friends might help me with that.

  10. Wonderfully written and exactly what my son would say too! x

  11. Jill,
    I just read your post on FB and it really touched my heart. Your little boy is an absolutely beautiful child. Thank you for sharing your experience with us. You are a wonderful mom. You and Caden are lucky to have one another. God bless your sweet family.

  12. Thank you for this post. I have an adopted daughter, Ileina, who was severely shaken as a 2-month old infant, and she has suffered from a permanent brain injury. That, added to the pre-existing conditions she was already contending with as a drug-exposed, prematurely born child, has resulted in a life that is full of similar challenges as you describe for Caden. But each of these sentiments you expressed about Caden are the EXACT same things I continue to think for my Ileina. We recently were awarded a DisneyWorld vacation from Make-a-Wish and our story is online at and you can see her there.

  13. incredibly insightful. I loved it. Lisa from Quirks and Chaos on Facebook.

  14. Jill,
    I saw this on The Mighty and was incredibly moved. I have a 19-year old with no specific diagnosis and experience the same thing often.

    I know this sounds pedantic, but one of the sentences in paragraph three of your blog entry was not transcribed exactly to your article on The Mighty and it may have changed its meaning in a material way. On your blog you wrote, "I appreciated the fact that she wanted to know what was "wrong" with my son." On The Mighty, it appears without quotes around the word 'wrong.' I only point this out because at least one commenter has already taken to chastising you for saying that something is wrong with your child.