Intention convention

My face when someone tells me that God only gives special children to special parents

Photo Credit: Jenny Lane

We all have our coping mechanisms. Skills, techniques and habits (both constructive and destructive) that bring us comfort. Over the years I’ve amassed an impressive collection of coping tools. Some work better than others and, of course, I have my personal faves: naps, a boozy night in, fundraising for epilepsy research (what, that’s not yours too?). When we find something that works for us we like to share it. A friend is having a bad day? Drop off a delicious comfort dish and a bottle of wine. A neighbor grieving a loss? Leave a beautiful bouquet on their doorstep. So, it makes sense to me that individuals who find lasting comfort in their faith would want to share that as well. 

Deep breaths cuz this tight rope is slick. I’m well aware that religion and faith are delicate topics but after years of receiving similarly distraught messages from hurt and confused caregivers I know that there are others out there that need to read this. Conversely, there are those that need to recognize that their words might be hurting more than helping. Welcome to my intention convention.

“God has a plan for us all.”

“Trust in God’s plan.” 

I preface the rest of this piece by noting that I truly believe that faith-based comments such as these are said with the best of intentions. After all, don’t we all desperately want to know why bad things happen? Was it something we did? Could it have been prevented? God offers an answer: it is his will, his plan.

Faith can bring with it a strong community of support and hope. It also offers prayer as an action, so that when nothing else is working we can still feel like we are doing something. For so many, faith and religion are the support system needed to make it through the day. But it is not for everyone and that is ok. I repeat: that is ok.

“God only gives special children to special parents.”

“God only gives us what we can handle.”

To the caregiver that is crying daily, sleep deprived and suffering from PTSD, sentiments like these could make them feel like they are failing. We get out of bed and care for our loved ones because we have to and if someone else was in our shoes they would do the same. Having a child with special needs didn’t make me feel special. I felt a lot of things - tired, in particular - but special was not one of them. And, honestly, there were many times when it was too much to handle. In fact, that is why I went to therapy and fought for home nursing. I know the positive intent is there but these particular sentiments fall flat more often than not. 

“How strong is your faith?”

“Have you been praying?”

Now, here is where this conversation gets particularly challenging. I want to believe that these questions are intended to provide faith as a resource. Prayer, meditation, or even simple self-reflection in the shower, can absolutely be powerful tools for centering ourselves and finding much needed resilience. But there is a subtext to these questions, intended or not, that can’t be ignored: if your faith was stronger your child wouldn’t be sick. If you prayed more God would make it better. 

I’m not sure who needs to hear this, but your loved one’s disabilities, illness, or disorder are not your fault.

As caregivers we already feel an intense responsibility for the well-being of our loved ones without being cast with unnecessary guilt. Not to mention that I have a very hard time reconciling a loving God with one that would punish an innocent child because their parents weren’t praying hard enough. Or a God that is choosing which person to save based on who is receiving the most prayers, like in a Homecoming court popularity contest. 

Religion and faith clearly have a space in comfort and healing. I frequently hear from friends and strangers alike that our family is in their prayers and these sentiments have buoyed me through some of my darker moments. However, at the end of the day, when it comes to using faith as a tool to comfort others, intent matters. If someone’s intent is truly to provide comfort, and they are receiving signs that their faith-based comments are not helpful, then it is time they try a new tool. Faith can bring one person so much peace. But peace and comfort are not one size fits all feelings. Let’s take the time to learn how to best support those we care about in a way that is actually supportive to them and not just the way that works best for us. After all, you wouldn’t bring a chicken pot pie and bottle of wine to a friend that’s a dry vegetarian. Just saying…