The Journey

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

I have heard that quite a bit over the past few years, since our journey with PANDAS first began. It’s usually followed up with names of pretty terrible childhood diseases, like leukemia, CF, Downs, and what not. Now, don’t get me wrong. If either of my children ever got cancer, I would be devastated, and despite the hardships that they have both had to endure, I am grateful that my daughter’s PANDAS is every now and then, somewhat manageable, and is not by it’s self, 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 that people usually do that to make themselves feel more comfortable. It’s hard sharing your struggles with anyone, be it a complete stranger, to a close friend. We, as the “sharers” have to chip away at walls that we have spend 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, that they are often times left wondering what to do with it.

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

But, 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 terrors.

So, as their way of coping, they come up with something even more terrifying. An even bigger trial.

I first saw this phenomenon when I was widowed 6 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 tragidy 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. But, 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. The price you pay to be friends with any special needs mama, will be great. 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 of a Special kid, 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.