The Day My Son Blamed Me for His Medical Challenges


My son hurt my heart today. Earlier we were at the ear doctor for a hearing test, and we were also discussing medical tests my son needed to determine the cause of his chronic ear infections and decreasing hearing. I could tell my boy was feeling down, but we pressed on through the remainder of the day.

Later that night, he snuggled up next to me on the couch with a worried look on his face and tears in his eyes. He asked me, “Why am I like this? Why do I have all of these challenges?” I felt that all too familiar feeling — the one where my heart feels like it’s going to beat out of my chest and my eyes begin to burn as the tears form. I started to try and comfort him by talking about how we all have challenges and how no one person is perfect. Parents of children with chronic illness or other challenges know the drill. “No one is perfect, sweetie, some people have heart issues and some people have high cholesterol…” He pulled away from me and looked right at me and said, “It’s your fault… you were the one who made me, and you did not do it right. What did you do wrong?” My heart went from beating out of my chest to feeling as if it had broken completely. I’ve asked myself the same questions. I’ve felt guilt, loss and sadness that I didn’t give my son a healthy start in life. My doctors had to deliver him at 28 weeks to save both of our lives. Why did my body fail my baby boy?

colton premature

For many years, it was difficult for me to relate to my friends and family members who had healthy babies and full-term pregnancies. Yes, I was happy for them, but I was also a little jealous. I’d find myself feeling frustrated when they were complaining about how tired they were of being huge and pregnant. I’d have given almost anything to have that experience. Even today, I’m slightly annoyed when I hear someone make the cliché statement, “As long as it’s healthy!” After having two premature babies with chronic illness, developmental delays and hearing loss, I have to bite my tongue when I hear people say those words. I find myself wanting to ask them, “But, what if your baby is not healthy? Have you thought of that? What if your baby enters this world in less than a perfect way? What will you do? I’ll tell you what you’ll do! You’ll do what you have to do for your child because you’ll have no other choice. And your life will still go on… and, it will be hard, but you will find your way. You will love your child, and you will not be able to imagine any other life, including one where you baby was born healthy.”  

There we were, 10 years after my baby boy was born unhealthy. Life was going on, and we were dealing with it. I pulled myself together, and I wrapped my arms around my son, and I held him close, and I told him all the ways he’s wonderful. “Colton, you’re kind, polite, loving, smart and funny, and you build houses and neighborhoods — on your iPad and with your Legos — in which I would love to live because they have your special touch. You’re the son I always dreamed of having. No matter what, I would not change anything about you. You’re perfect to me, and I love you more than all the stars in the sky and all the way to the moon and back down. You make me happy.”  

I knew my son didn’t really blame me for his issues, but he needed to blame someone; and, at that moment I was there for him and I was strong enough and more than willing to take on his pain so he could get his feeling out. We sat quietly like that for a while, he in my arms and both of us crying. Both of us healing.

Then we talked. We discussed the fact that everyone has challenges. Some people’s challenges we can see and others’ we can’t because not all challenges are physical; some are emotional. I told him, “The most important thing is to never let the challenges get to us. We must never give up and never let the challenges win. We must continue to live our lives.” And he replied, “I promise to not give up, Mom, I promise to always live my life.”

“Me too, buddy,” I replied. “Me too.”

10968192_10205846511146284_1275653542880653565_n


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


Related to Chiari Malformation

When My Son's Teacher Told Him He Didn't Have a Brain

Recently, I was helping my 11-year-old son with his homework when he told me an adult at school said something mean to him.  I found this hard to believe, but of course I took him seriously and investigated a little further.  “What happened?” I asked him.  “Mrs. Smith said I don’t have a brain,” he told [...]

My Sister's Question Made Me Reevaluate Our Special Needs Life

I used to think that once I had a name for all of the rare conditions that affect my children, somehow everything would be all right. I guess I thought that if we had a diagnosis, maybe we could then find a cure or a treatment and fix the issues and then move on with [...]

Why I View My Chiari Malformation as a Blessing, Not a Curse

To my dearest Chiari Malformation Disorder, I’ve lived with you my whole life, yet you didn’t affect me. You were dormant for so long, and I was so happy to live my life without a problem. I actually didn’t know about you until I was 14, and it was an accidental find. Why didn’t I decide to [...]

My Daughter Has Severe Hearing Loss. And Perfect Pitch.

My 14-year-old daughter, Shea (pronounced Shay), plays violin in the school orchestra and takes piano lessons. She has an incredible ability to hear and replicate music, and she has the ability to learn a song on the violin and then play it by memory on the piano. As a person who’s never played any instrument, this [...]