There Are No Ribbons For My Son


“Your son’s fevers are not compatible with life.”

“Do you know how many minutes it would take for your son to bleed out on an operating table?”

“Your son is a rare bird.”

“Your son is a zebra.”

“Your son is a patient population of one.”

These are some of the memorable one liners I have heard over the past seven years of mothering Desi. And there are more. And then there are the meetings I get to have with principals and babysitters and local rescue departments and playdates to prepare those around him for what will hopefully never happen, all the while smiling and trying not to scare anyone away from him. And there are the emergency room visits where I know more about my son’s medical conditions than those caring for him.

ABOUT THE AUTHOR:   Carly is a mother of three whose son faced an undiagnosed, life-threatening illness.

ABOUT THE AUTHOR:  Carly is a mother of three whose son faced an undiagnosed, life-threatening illness.

But then there is the National Institutes of Health and the researchers and clinicians there who are so wicked smart and attuned to cases like Desi’s, who are willing to tell me that they don’t know what is wrong, but not to give up. And within the NIH is my son’s version of Disney World: The Children’s Inn, where his face lights up when he walks into the lobby and searches his mailbox to see what prizes have been left for his discovery. Where he walks around like a king, narrating his way through the playrooms and kitchens, stuffing donuts in his mouth and flopping on the bed in our room. Where he is so proud to be amongst the bravest of the brave. Where he learned first hand why we can’t stare at kids who are outwardly different. Where he played with an 8-year-old little boy whose mother was told he wouldn’t make it to 10.

You see, Desi gets it. He knows more than a 7-and-3-quarters little boy should know. He knows to ask for something to squeeze as they take 30 vials of blood, boasting to the phlebotomist that he doesn’t cry when he gets his weekly injections from mom. The Inn is his other home. It is where he feels part of. Where even though he doesn’t look like one of the “sick kids” he still knows what it feels like to be one of them. And what Desi is most proud of right now is his mom, because she, yes I, have pledged to run the Marine Corps 10k on The Children’s Inn team, a race to raise money and awareness for families that come from all over to stay at the Inn while they walk the long halls searching for answers.

There are no ribbons for what my son has. He is undiagnosed. When the doctors hear hoofbeats they are trained to think horse not zebra, but Desi is a zebra. And they don’t make races or bracelets for zebras.

This is the first time I have come across anything that directly benefits children like my son. Did I mention I hate running? Did I mention that I raised my goal so Desi could feel the support? But Desi hates bloodwork. And doesn’t really love to miss school, because he’s only a first grader and still loves to go. And he hates wearing his helmet on the playground, because he knows he looks different. So, I’m going to run for my son and all the families like ours and I’m going to show up for him and let him know that we grow stronger from our weaknesses. That our challenges are actually our blessings and that even if we don’t know what is wrong with him and I don’t have any answers just yet, that there are people out there rooting for us, paving the way, and while one more race and one more donation might not be the change that will fix all these broken pieces that it will make a difference to rare birds like Desi. #RunINN4Kids

If you want to show support please consider donating. All proceeds directly benefit families and children who show up afraid and barely holding on to hope and provide a safe harbor as they sail through the storms. Click here to help out.

The Children’s Inn at NIH provides free lodging—and so much more—to over 1,500 children that stay there each year while participating in clinical trials at the National Institutes of Health (NIH), the nation’s premier biomedical research institute. Each mile and each dollar raised from Team #RunINN4Kids fuels access to the research that makes childhood possible for the more than 13,000 kids, traveling from all 50 states and 94 different countries, who have stayed at The Inn. The Inn provides not only free lodging, but also meals, more than 1,300 hours of educational, recreational and therapeutic programming each year—things like homework help, field trips to the monuments in DC and even summer camp for children that could never otherwise attend—all while enabling families to develop friendships and learn from others who know what it’s like to seek the promise of hope or a cure for a seriously ill child.

A letter from Desi's mother to Mitch:

I have decided that I am going to send a message each day, for a year, to someone who has crossed my path and made my life brighter.

Mitchell (Christopher M. Jones),

Today it’s you. And just like you did, 4 years ago, you show up exactly when I need you. I used this picture, because this is the picture I remember seeing the first time I read about you. I was in the car, feeling really low and lost and almost hopeless. My son was really sick and I am usually really optimistic, but we were struggling. And then you came crashing into my life. Your father, as you know, has a gift with words and the very first post I saw was the day you passed away. I sat in my car and had a spiritual experience. I cried and cried and scrolled all the way down to your dad's first post and read the entire day. And you changed my life. You gave me perspective and gratitude and reminders and heartache and love. As I would sit, in the ER, with Desi burning up on my chest, with no one knowing what was going on, I searched for your father's latest post to get my dose of gratitude. That fall I sent your father an email telling him how much his posts and your story meant to me. I never heard back, but I hadn't sent him the letter to hear back. He has over 250,000 followers (that's how special you are!) But then one day, I got an email from him telling me how much my email meant to him and he asked me if I would be willing to have a film crew come to Cleveland and interview me and our family about the impact you had on us. It was one of the greatest honors of my life. The documentary aired and my entire world changed. You and your father brought people into my life that I would never have known about. There is never a day I do not think of you. I run with your name on my chest, I climb with you in my heart and we lit a candle in your honor at my wedding. Thank you for all you have given to this world. Thank you for reminding me what really matters and thank you for having such a beautiful family who is willing to share your light with all of us. I am forever changed because of you.