When Every Day Feels Like a Marathon for You and Your Medically Complex Child


When my son Hartley was first diagnosed at 3 days old, I simply couldn’t believe this was happening. To be honest, I still have moments when I wonder why and how this could have happened to my sweet boy. The doctors explained how critically ill he was and how rare he was, and I had never been so scared in my entire life. I thought we were going to lose him. It was so difficult to get pregnant in the first place, and I really felt like he was all I had ever hoped for.

Flash-forward almost seven years, and Hartley is a vibrant, hilarious, brilliant little boy who has been through more than many adults have in their entire lives. He has had more surgeries than I can count, hospital admissions, blood tests, ultrasounds, X-rays and has been part of several studies. When he was first diagnosed, I never would have imagined being where we are today. I never would have believed that we could survive — that he could survive all that he has. But in many ways, life is just as difficult as those first few scary days.

young boy smiling
Ashley’s son, Hartley.

There is so much worry that comes with his illness. A simple cold or flu can be life-threatening and at the very least make him lose weight and strength and set him back a few weeks every time. He has to fight every day to survive, gain weight and grow. He has to endure painful procedures daily and miss more days of school than he attends. My husband and I have to take on the school board, speciality pharmacy and hospital every day. We are constantly advocating for Hartley and his medical needs. The average person has no idea what it takes just to get Hartley physically ready to attend two hours of school, or packed up and ready to spend the day at the hospital for various appointments and tests. Most days he is exhausted before we even leave the house.

Despite everything, and even though most days it feels like we are running a never-ending marathon, Hartley is so worth it. He is our daily reminder of why we keep advocating and trying to bring awareness to intestinal failure. He is our strength and our hero.

So to parents going through this, please remember it’s all worth it. You can push through. When you feel like your heart cannot possibly take watching your child in pain again, just look at that beautiful face and remind yourself why it’s all so worth it. I would give anything to have Hartley be happy, healthy, safe and with me forever.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Find this story helpful? Share it with someone you care about.


Related to General Parenting

31 Gifts Special Needs Moms Want but Won't Ask for This Year

Special needs moms don’t get to write letters to Santa, and often their holiday seasons are consumed with figuring out ways to make everyone else happy. When they do offer up a wish list, they’re not always honest about what they’d really like. The Mighty teamed up with A Very Special Needs Resource and Stop Discrimination Against Special Needs and [...]

To the Special Needs Parents Who Feel Bad About Canceling Plans (Again)

Before becoming a stay-at-home mom to my three boys, I was a social worker. I worked with families who had children with various special needs, and I would always hear them speak about how they lost friends and family members after the birth of their child. I never understood how you could lose support after [...]

My Confession as a Special Needs Mom to the 'Typical' Moms

I see you, Mom. You and your child. I see you, and I think to myself how beautiful you both are. I wonder if you even know it. I doubt it. You probably think you’re the worst mom in the world most days, but I see you as perfection. And that little one is just [...]

3 Tips for Explaining My Child's Differences to Your Kids

Many of my sweet friends have asked me the following question: “What do you want me to tell my kids about Julia?” I love my friends for asking this. I love that they’re talking to their kids about Julia. I love that they want my opinion and my words. I love that they want to [...]