When Someone Says I Use the 'Sick-Kid Excuse' Too Much


Raising a child with an incurable genetic disorder is no easy task. Watching your child deal with medical and social problems is heart-wrenching. Even with the advances in medical technology, doctors are still human, parents often go with questions unanswered and families and friends become frustrated with your absence from their lives. 

There are many misconceptions about childhood diseases, and parents of such children are often faced with great adversity as the children grow. A common misconceptions is that kids can grow out of them. While they may recover and outgrow certain issues, there is no cure for many of these diseases, and special precautions must be taken. For example, if you have a child with a depressed immune system, you have to carry extra supplies like inhalers, rescue medications, and a supply of wipes and hand sanitizer whenever you take him out of the house. Getting sick usually means a hospital stay, so parents go to extreme lengths to keep their medical kids healthy, even if it means locking them inside the house for the winter.

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One time, when my son was just over a year old, someone told me I “over-use the ‘sick-kid’ excuse.” That was a jab straight at my heart. How is it possible to use the “sick-kid excuse” too much when you have a chronically ill child?

My son has Kabuki syndrome, for which there is no cure. It can cause a slew of problems, including an immune deficiency, but at the time he had not received his diagnosis. But I know my child. He is 3 and will have his 11th surgery next month. He’s also had countless tests and inpatient stays for various illnesses.

Even if he’s only showing signs of a cold, I put him in a bubble at our house until he gets better. If I don’t, he will end up in the hospital.

My reaction to being told that wasn’t pretty. I am a fierce mama bear. Most moms are like that, but I believe special needs moms are the fiercest. We learn early on that we have to fight for our babies and be an advocate and a voice for them. When I keep my son inside because he has a runny nose, it’s not because I don’t want to leave the house. Believe me, I relish the times I get to take my kids outside and play. I want both of my boys to have social interaction and close relationships with family. I want them to attend school and play sports and join clubs. My older son is in two clubs already and will be playing flag football and basketball when his school starts it up this winter.

But my youngest may not ever get to play sports. His medical conditions will make him a difficult child to handle as he gets older. He will eventually need a  prosthetic mitral valve in his heart, which means he will be on blood thinners for the rest of his life. Any injury, even a paper cut, will be dangerous. But that doesn’t mean he can’t join after-school clubs and other activities. I want him to do that. But my caution with his health will never change.

So when someone tells me I use the “sick-kid excuse” too much, I say, “You are entitled to your opinion, but the health of my child will always come before anything else.”

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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 Share Your Story page for more about our submission guidelines.


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