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.

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.

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