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Why This Saying Is Not Helpful to Mamas of Kids With Disabilities

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“You are so lucky – you really could have it so much worse!”

I have heard that quite a bit over the past few years, since our journey with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) first began. It’s usually followed up with names of other childhood diseases, like leukemia, cystic fibrosis, Down syndrome, and whatnot. Now, don’t get me wrong. If either of my children ever got cancer, I would be devastated, and despite the hardships they both have endured, I am grateful that my daughter’s PANDAS is –every now and then– somewhat manageable, and is not by itself a life-threatening disease.

However, that does nothing to lessen how devastatingly life-altering it can be.

As much as it stings hearing someone try to nullify our trials with a greater trial, I try and remind myself that people usually do this to make themselves feel more comfortable. It’s hard sharing your struggles with anyone, be it a complete stranger or a close friend. We, as the “sharers” have to chip away at walls that we have spent months, sometimes years, putting up — just to survive the bombshells that life has brought us. And the receivers are left trying to decide what to do with heartache so deep.

You see, many of us have had years, or even our entire lifetime, to figure out how to navigate through our journey.

However, to those we encounter, or those who haven’t walked our same journey hand in hand with us, it’s uncharted territory, full of unimaginable, “terrifying” things.

I think, as their way of coping, they come up with a trial that’s even more unimaginable and “terrifying” to try and comfort others.

I first saw this phenomenon when I was widowed six years ago at the age of 35. People would tell me how they knew someone who had lost their spouse and all of their children in a horrible car wreck. Of course, my heart broke for that person, but their tragedy didn’t do anything to lesson my own.

You see, the greatest grief we will ever experience is when something happens directly in our lives.

So, if you are reading this and have a friend or family member who is a parent to a PANDAS kid, know that we know how blessed we are. We really do. We have learned how to celebrate the small things like you wouldn’t believe. Please also know that our struggle is very real. Our heartache is deep, and we grieve daily just for normalcy.

I know that embracing our pain is a lot to ask. There is a higher price to pay when you’re friends with any mama to a kid with a disability, but I promise, the return will be even greater.

Just listen. That’s all any of us ever really want. Just listen.

If you are a PANDAS parent reading this, or any mama whose child has a health condition or disability, remember – they don’t know what it’s like to be on your journey.

Show them. Tell them.

And give them grace when they respond, because they really don’t know.

Originally published: December 7, 2018
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