How to Deal with Outliving Your Child

“He’s in end-stage heart failure,” the doctor said.

My son was only one year old at the time. I sat in shock at the results of his first echocardiogram.

How could this be possible?

“Isn't this something that happens to older people?” I asked the doctor.

I called my husband, who had just left the hospital to pick up our other two children, and all I could bring myself to say over the phone was to repeat the words of the doctor:

“He’s in end-stage heart failure.”

“Are you OK?” my husband asked.

“Why?” I asked him.

“Because you just told me that our baby is in end-stage heart failure like you’re telling me the weather.”

He was right. I was robotic in that moment. The same way I am typing this now. I felt frozen. Numb. The words came out of my mouth as a mother, as a parent, but they didn’t make any sense. They didn’t seem real or even possible. That was the day that the possibility of outliving my child or one of my children became a reality for me. So, writing about the topic of outliving my child and that possibility is very hard for me. I’m going to be as open and honest with you as I can. 

After we found out our toddler was in end-stage heart failure, he lived inside children’s hospitals for nearly a year before receiving his life-saving heart transplant. He was only expected to make it a few months, but the cardiologist at the time didn’t even want to say months. 

I remember my husband saying to the group of the cardiologists at that time, “I can’t believe there’s a possibility that I might outlive one of my children.”

He was devastated, and so was I. The words “critically ill” rang in our heads every day during that year. We couldn't eat, couldn't sleep, and there were times I felt like I couldn’t breathe while he was confined to an IV pole.

I would read my Bible and cry out to God on the hospital bathroom floor after my son fell asleep. It was during those times of desperation that I learned how I needed to deal with the possibility of outliving my child. My son is three years old now. He received his gift of life about 10 months ago, and he is thriving. We are so grateful everyday and for the miracle that our son made it through.

Being on the other side of transplant comes with its challenges, one being that he is continually monitored for rejection of his new heart for the rest of his life. Two, being that the anti-rejection medications he has to take are hard on the body and can cause other complications. So even still we wonder and we worry about what his life expectancy will look like and what his lifespan will be in comparison to his siblings. Every person is different.

During one of our many low moments on our journey as a heart warrior family I said to my husband, “You know, there is a possibility that HE could outlive us.”

Because with God ALL things are possible. With God, statistics and numbers don’t matter. My son could grow up to be the next world-renowned cardiologist, helping kids like him. He could be a researcher, a writer like me, or a whole host of any other possibilities imaginable. 

All that said, I’m here to tell you a few things that I learned about how to deal with the topic of outliving my child. This is not easy, and no parent does it perfectly. I know parents who have lost children and who are dealing with this reality, and I know that it could be my reality just as much as any other parent.

I remember saying to the cardiologist that I can walk out of the door today and end up in a car accident. I could be confined to a hospital bed just like my son was. I know that all of our lives are just as fragile, but that his seems more fragile because of his medical condition. 

Our Days Are Numbered

The truth is, when it comes to dealing with this possibility or this reality, it can help a little if we consider the fact that Scripture tells us that our days are numbered:

“So teach us to number our days, that we may apply our hearts unto wisdom.” - Psalm 90:12

"A person's days are determined; you have decreed the number of his months and have set limits he cannot exceed." - Job 14:5

"Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be." - Psalm 139:16

“And which of you by being anxious can add a single hour to his span of life?” - Matthew 6:27

Our days are numbered before we are born, and God knows the number of our days. He knows the number of my days and he knows the number of yours. He knows the number of our children’s days. He knows all these things and we do not, because we are not Him. 

We Don’t Live in a Perfect World

It's also helpful to remember that we do not live in a perfect world. We do not experience eternal life here and each life on this earth will come to an end at some point. No parent ever wants to think about the number of their children’s days being shorter than theirs. It seems completely unnatural. Especially when we consider the natural aging process. Which is why it was so shocking for us with a child who had not, in fact, aged yet. This feeling is gut-wrenching. 

Our Children’s Days Are Numbered

Remembering that our days are numbered and so are the days of our children is so very important. It is part of what helped me to get up off my toddler’s hospital room floor in realizing that I need to make the most of each day I have with him. On top of that, I also need to make the most of each day I have with my other two children and with my husband and everyone in this life that God has given me to love.

Why Does God Take People from Us?

I’ve heard the following question so many times: “If God loves us then why does He take people from us?”

I wrestled with this question inside hospitals for a very long time. I was even angry with God, but I was looking at God and his character from the wrong angle. The truth is, God gives people to us. He gives us life. He created love. God created the world as we’re told in Genesis. God created people. He gave them life. He gave us life AND He gave people to us to love and to cherish and do life with. He gives us so many blessings.

So, in dealing with death, especially when it comes too soon, too early, or too young, we must remember to cherish the days we’ve been given with the people we love. The people God gave us to do life with. The biggest thing that helped me peel myself off of that hospital bathroom floor was that, regardless of the number of days I get to live with my loved ones down here, someday He will give me back more days with them than I could have ever imagined in eternity.

Photo Credit: ©GettyImages/milan2099 

Kali Dawson graduated from St. Thomas University with a B.A. in English and a Minor in Journalism and Communications. She is a School Teacher, Pilates Instructor, and Mama of two young children and a beautiful 2020 baby. She is married to her real-life Superhero. When she's not holding small hands or looking for raised hands you will find her writing fervently about faith and family. To read more, you can find her on Facebook at Faith, Family, Freelance.