To the Parents Whose Children Have a Life-Limiting Illness


Dear parents who have a child with a life-limiting disorder,

I know you are afraid. You dreamed about this child long before he or she was born, and those dreams did not involve a rare disorder. Now you have found yourself parenting in uncharted waters, unsure of how your child’s particular story is going to end, but knowing in the deep recesses of your soul it most likely will end before yours. Not everyone will understand, not even every parent who has a child with the same diagnosis as yours, but that is OK. Your fears are real, and the thoughts you have are understandable.

I know this is scary. Each day you wake up wondering if today will be your child’s first time completing a long overdue inch-stone, or the last time he or she will make an attempt. You do everything you can throughout the day to ensure that if tomorrow does not occur, you did the best that you could, hoping that it will maybe prevent the inevitable guilt you will most likely feel when eventually tomorrow does not come. When the day comes to a close, you secretly wonder if this will be your last time you will both take part in their bedtime routine. You kiss your child goodnight and give an extra squeeze — you just never know.

I know this is lonely. The subject remains taboo. You fight within yourself whenever one of these negative thoughts pop into your mind. Others will tell you “not to think like this” and that “it’s not healthy,” so you are left to wonder if you are the only one who thinks about these things. You are afraid to talk about death and your child in the same sentence openly, not wanting to be silenced by those who might disagree with your feelings or be misunderstood by those who really have no idea. Sometimes, you might feel a sense of entrapment, suffocation, and uncertainty.

I know this is your life, so do your best to make the most of every situation. If you have other children, then I believe these thoughts in the back of your mind will inevitably make you a better parent. You are not alone with  your thoughts, because I am someone who gets it. I am someone who thinks these thoughts. I am someone who lives this journey along with you, and I am someone who will be here when your reality becomes real.

Image Credits: Randi Zaila

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


Related to Rare Disease

Watercolor illustration of lonely woman in the forest

When Your 'Chronic Illness Fears' Become Your Reality

Those with complex chronic illness know that after being tossed around the medical system, we sometimes can end up traumatized. Appointments become scary things. We worry about the outcome. We worry about whether our doctor will be able to help or not. We worry our doctor will give up on us. And sometimes, our fears [...]
street signs: one saying "possible," and one saying "impossible"

Why Making Decisions Can Be Daunting When You Don't Have Your Health

We all make decisions every day — big decisions and small decisions. Some we are aware of and others are just automatic. When I had reasonable health, I would spend my days making business and personal decisions without much effort. Some might have kept me awake at night, but not many. I never had to [...]
Black and white image of a little girl hugging her mother

Why I Cried When I Received My Daughter's Diagnosis

For parents of children with rare diseases, we are in a constant state of learning. We experience the joy of learning about this amazing new baby in our lives. We learn our child has differences compared to other children. We learn about those differences through a clinical diagnosis we oftentimes struggle to associate with our [...]

Offering 'Thoughts and Prayers' Isn't Good Enough for Children With Rare Disease

We have seen dark and scary times recently for our nation’s schools. What should be a safe place of learning and experiences that shape a young person, now also includes intruder drills, active shooter scenarios, and training on what to do if someone enters the property with the intent to cause pain, death, and devastation. [...]