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.