“She needs to learn that she can’t do that” I said to my husband. “She can’t grow up thinking that….” and then my sentence trailed off.
There are a lot of things that a child needs to learn before they grow up, but what if there is a good possibility that your child might not grow up? What if the time that you had with them was limited? Does it become less important to spend that time teaching them to share and behave, things they might not need to learn if they never grow up?
What a horrific situation to have to think about, but unfortunately it does happen.
What if the doctor told you that the time your child had left was running out? How do you spend that time?
I had a hard time figuring that out myself. When my daughter was four months old she was diagnosed with what I was told was a “probably fatal genetic condition.” Due to the rarity of the disorder I didn’t find out until she was nearly three that while she does have a rare genetic condition, she most likely will not die from it.
Those several years were understandably rough, but buried among the topics that obviously come to mind when thinking about losing a child, are the normal day to day situations that just simply aren’t in typical parenting books.
How do you discipline a child who might not be here to reap the benefits of their learned behavior? Do you even waste your time doing it at all? It’s uncomfortable to think about yet so very true when dealing with a situation like this.
I spent the entirety of my daughter’s infancy through toddlerhood, critical learning years in the behavior department, not knowing whether anything I was teaching her was worthwhile. There were no chapters in the parenting books on this subject; there was no article in that month’s parenting magazine about the importance of disciplining (or not) a dying child. I did the only thing that I could do in that situation and I reached out to my fellow heartbroken moms and what I found wasn’t all that helpful; none of us knew what to do.
It’s been a few years now, my daughter is six, and I am thankful everyday for the miracle that is her. As she grew, I watched the hearts break of the mom’s whose children didn’t grow along with her. None of us ever did figure out a fool proof way to discipline a child that was dying, but somehow we found our way.
The most important rule we learned in disciplining our terminally ill child was that there are no rules. Each family has to do what is best for them. When it comes down to it, if it works for you, it will work best for your kid.
There are no judgments. No one is allowed to judge the way you parent your dying child. People just love to give parenting advice, don’t they? They hand out tips, tricks, and unwanted suggestions, but when it comes to a dying child, they are not allowed. “If my child won’t be here forever, then you don’t get to criticize how I’m raising her in this moment. I have enough to feel bad about and you are not allowed to make me feel worse.”
You reserve the right to be flexible. Strict parenting is all the rage these days. “Kids need structure, make a plan, and stick with it.” Well that’s all fine and good until life rips that plan out from under your feet. Allow yourself to be ok with being fluid. Your life is changing drastically and yours child’s is changing catastrophically. It is ok to go easy on yourself and easy on your child when you need to. You are allowed.
There are no regrets in how you choose to discipline them. Every parent has regrets, things they wish they would have done differently, it’s normal. Yet when the time you have with your child is significantly less than you were expecting, you can’t waste it regretting anything. Do the best that you can do with the options that you have and somehow find peace with it.
When the only thing that you will have left is the memory of the one that held your heart, make sure that those memories are made of the life that you enjoyed. However you choose to mold your life into that time is up to you.
Remember, the first rule? There are no rules.
This piece first ran on Lifetime Moms