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Chronic Illness

Raising Your Kids With A Giving Heart, Despite Chronic Illness

After struggling through her son Ashton's kidney disease and her own health challenges, it's more important than ever for Amanda Zari to raise her kids with a giving heart.

When Ashton Zari was only four, he started asking for his birthday to be turned into a fundraiser, now called Ashton’s Birthday Wish, for the Ronald McDonald House of Central Ohio. In the last four years, Ashthon has raised over $40,000 in donations, organized face painting parties for the other kids at the home, volunteered his family to make dinner for the other residents, started a bathing suit closet for kids who didn’t know to pack one for the splash pad, met the President, and has written and illustrated a children’s book called How I Became a Superhero.

Ashton’s passion for helping families and other children at the Ronald McDonald House is inspired by his own experiences. Ashton was born with Bilateral Urinary Reflux, which means urine flows backwards from the bladder into the kidneys causing urinary tract infections and, when left untreated, kidney damage. Because Ashton was almost three years old before doctors realized what was going on, he now has Chronic Kidney Disease and Idiopathic Constipation. In the last 5 years, he and his family have spent close to 300 nights at the Ronald McDonald House of Central Ohio while receiving treatment at Nationwide Children’s Hospital.

Friends and family often joke that keeping up with Ashton’s fundraisers and service project ideas can be a full-time job for his mother, Amanda Zari. But Amanda, who also has two younger children, insists she is always willing to support Ashton’s wild ideas because she knows helping others is how he stays motivated. She explains that Ashton, a child with chronic pain and illness, needs those moments as often as possible.

Ashton Zari, and his mom, Amanda.

Amanda will be the first to tell you, though, that she hasn’t always been so willing. While today she considers it part of her life’s purpose to help other families on similar journeys, her motivation is fueled by memories of how dark her life was when their family first got the news of his illness.

Folks recently chatted with Amanda Zari about how her family navigates this difficult path and what inspired them to focus their energy on helping others. Our conversation has been edited for clarity and brevity.

You didn’t find out Ashton was in kidney failure until he was almost three, but there were signs all along that something was wrong. What led up to his diagnosis?

As a baby and toddler, Ashton cried all the time. He would get these random fevers and my husband, Anthony, and I would take him to the doctor, but they kept telling us he just had an ear infection or probably just a virus.

When I was 16 weeks pregnant with Addison, our second child, Ashton had been sick for almost three weeks. I took him to the pediatrician three times, and each time I was told it was just a virus. Eventually the fever spiked to 104.9, and I decided to take him to Urgent Care.

The doctor came in the room and I just started sobbing. “I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

“I’m not going to lie to you,” I said. “I’ve had him at the doctor’s three times in three weeks. This little boy is sick and no one is listening to me.”

They had him pee in a cup, they ran labs, they did x-rays of his urinary tract, and they did a renal ultrasound. Finally the doctor came back in and told me, “Amanda, your little boy is very sick. He is in kidney failure.”

Within two weeks, we were meeting with doctors at Nationwide Children’s Hospital in Ohio. His first surgery was when I was 36 weeks pregnant. No one wanted me to travel because they were afraid I would go into labor, but I had to be there. A week after we got home, I had Addison.

But then you had your own health scare which led you into a pretty dark place. What happened?

I did not take care of myself during my pregnancy. I pretty much sat around and cried, feeling bad for myself because my little boy was sick and might die. I wasn’t exercising, and I wasn’t sleeping. I was going to work and crushing it, but when I came home there was nothing left.

Addison was born, and she was perfect, but everything in my life was so out of control that I became determined I was going to breastfeed her —because this was something I could control. I already hadn’t been sleeping, but now I was setting my alarm for every two hours to nurse her. When she was just four weeks old, I found out I had to return to work or we would lose our family’s health insurance – it wasn’t a choice.

The doctors discovered I have a disorder called Addison’s Disease, just weeks after my daughter Addison was born.

I was only back at school teaching for a week when I started having seizures that led to me spending eight days in a medically induced coma. The doctors discovered I have a disorder called Addison’s Disease, and I am telling you that God is up there laughing because I’m diagnosed with Addison’s Disease just weeks after Addison was born. Essentially, what it means is that my body doesn’t produce enough cortisol. So when I was putting my body under all that stress, it didn’t have what it needed to deal with it, so it shut down.

When I woke up, I didn’t recognize my husband or know who my children were. I didn’t even know I lived in West Virginia. All of my muscles had atrophied, and I had to relearn everything – how to walk, tie my shoes, and feed myself.

It took about six weeks for my memory to come back, and I had to move back in with my mom because I needed full time care. It was demoralizing. She was having to take care of both me and my children, and that’s not at all who I am. I was angry, and no fun to be around. I wasn’t the person I am today or the person I was in college. I was a bitter, sour version of myself.

A woman holds her newborn baby while crying immediately after birth.

Amanda with her daughter, Addison, after her birth.

How did you get through that time?

On January 1st, 2015, about nine months after my seizures, my very sweet friend came to me and said, “I’m tired of you sitting here… You are not showing up for your family. This is not you.”

She started dragging me, three times a week, to the gym. I went begrudgingly, at first, but eventually that is where I began to find myself again.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker.

In the beginning, I felt like I was going to stay at the bottom of that ditch forever, but I found a community of people who loved me when I was unlovable and they helped me see things could get better. After a year, I stopped focusing on being sour and decided to focus on positivity so that when we got devastating news again, instead of going back into the ditch, we could acknowledge it sucks and start asking what we can do for other people.

I’ve learned that when you hit hard times, rock bottom, you’re going to come out a giver or you’re going to come out a taker. There’s not a whole lot of in between. You’re either going to be the person that sits on the bottom or you’re going to be the person who comes out fighting, even if it’s begrudgingly, so you can help other people fight it out too.

Amanda credits her work in the gym as giving her the strength to get through her own health and mental health challenges.

In what ways are you and Ashton using your unique situation to encourage others?

Inspired by everyone who had helped me at the gym, I decided to use all of that time sitting in the hospital with Ashton to get my personal training certification. I started making training plans for the other moms  that can be done from the hospital bedside, and leading exercise classes and healthy lifestyle challenges.

Ashton and I sort of fed off of each other because we were both going through a really hard time, and we will often joke that the Phoenix is our spirit animal because we sort of came out of the ashes at the same time, asking, “What can we do?”

“How can we serve the families that are going through the same things we are?”

I was making Facebook videos about body image and self love. Ashton began to take notice of this and realized, “If you can encourage people, so can I.” So he started making his own “How To Be Happy” videos.

Ashton’s Birthday Wish was eventually born out of that idea. We started it, with his fourth birthday, as a way to give back financially to the Ronald McDonald House, but it has made an evolution over the last four years. We’ve become very service based and we’re constantly asking, “How can we serve the families that are going through the same things we are?”

Amanda and her kids.

Ashton has done some pretty amazing things, but I am sure a lot of the work of implementing his ideas falls onto your shoulders. Do you ever say no to his ideas?

No, I don’t. There is no way to describe his life other than it is hell, but his cup is filled by serving people at the Ronald McDonald House — whether it is through raising money, putting out an inspirational video, writing cards to other kids, or writing a book.

My son inspires me all the time because he dreams big, and he very rarely falls short.

His cup is filled by that. So my job, as a parent, is to help him. I am so proud of him but I can’t take any credit for any of his ideas. He inspires me all the time because he dreams big, and he very rarely falls short. I have never met a child with his work ethic.

How have you reconciled the dreams you had for your family with the life you have been given?

This is a daily battle for me. I always knew I wanted to have kids, and I always knew I wanted to teach. Everything in my life was building up to that. I was going to get married, teach, and have children. I had my whole life planned out. When we found out Ashton was sick, and how sick he really was, that was one of the most soul crushing times for me because I realized my life was not going to look like what I had always imagined.

I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

There are still days that I look on social media and see my friends’ kids playing tee ball or going to school events. The jealousy still flares every once in a while, but what I have found is that there is so much beauty in day to day life. Sometimes it takes another second for us to sit down and look for it, but I can tell you that I appreciate the little special moments so much more than I would if I had the dream life that I expected. I wouldn’t know this joy, and I wouldn’t appreciate the moments where we belly laugh until we cry if I didn’t know how hard life can be.

The Zaris at Ronald McDonald House at Halloween.

When all of this is said and done, what lessons or memories do you hope your children come away from this with?

I hope that they come out of this with a sense of resiliency. We do our best to have a routine and plan. Sometimes, though, we just have to roll with the punches and make the best of it. But we do that by having dance parties while we cook pancakes, singing really loud in the van when we’re driving, and cherishing every moment we get at home because we’re on the road so much.

I also hope they always keep the servant heart they grew up with, seeing us giving when we have so little. I hope they continue to constantly try to bless other people because anything that we’ve done for other people, God has blessed us back with five or six times. I hope they come out with just a sense of no matter how hard your life is, there are things you can do for other people.

To learn more about Ashton’s Birthday Wish, visit AshtonsBirthdayWish.org