The Not So Linear Life

Linear.

I’ve thought a lot about that word, over the years, especially recent years.

It’s easy to get bogged down when your journey looks more like this: ^^^^^ then it does this: ——–

But sweet friends, if you get anything from reading my ramblings, I hope that you get this: rarely is anything in life linear. So, don’t let your road discourage you!.

Yes, we have lows. Sometimes downright awful ones, that threaten to take the very breath out of our lungs. But we have highs too. We still laugh until our sides hurt, and tear stream down our faces.

As a PANDAS Mama, our roller coaster life, has taught me to appreciate the little things. Even the mundane moments, turn into huge victories, and treasured moments of time.

Just don’t let the lows have a chance to steal away those small victories, because I assure you, they will try their very best to do so.

Every rage, and OCD moment, and tears shed at the multitude of Dr appointments, will do their best to suck every little ounce of joy that you have worked so hard to squander away.

Do. Not. Let. It.

As hard as it may be to travel down our bumpy, dusty, pot hole riddled hilly road that we call PANDAS, never, ever forget that you are still on a road. No matter the direction you take, every step taken, is still better then standing still.

Also know that as hard as our path is to traverse, it will always being up more endurance then walking on a smooth, paved linear path.

So, keep on my friends. As Dory says, in Finding Nemo, “Just keep swimming, swimming, swimming…”

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Fa La La La Friggin’ Christmas.

Yeah. I know. It’s the most wonderful time of the year, full of magic and wonder and – at least for us PANDAS Mom’s – meltdowns. Lots and lots of meltdowns.

We spend most of October, November and December, in survival mode, walking on eggshells, just trying to keep as many snotty nosed kids away from our own. So by the time Christmas rolls around, we are literally running on fumes.

While our Facebook feeds are filled with joyous pictures of holiday gatherings, concerts, and celebrations, our own private lives may be completely different.

If you have a child with PANDAS, then you know exactly what I mean. If you don’t have one, then chances are, you know one. If you do, please reach out to them. They are exhausted, and just trying to hold it together.

They may decide it’s easier to withdraw and go into hermit mode. They aren’t trying to be unsociable. They are just trying to survive, and trust me, their desire for a good friend, wine, abd dark chocolate is most assuredly still there.

If the walls do crack some, and you see Facebook posts that aren’t so jolly and merry, please try not to forget the amount of courage it took them to click on that “post” button. Know that just because we choose to be transparent, doesn’t mean that we are ungrateful, or that we aren’t appreciative of our blessings.

I think in most cases, we are even more grateful for we have been blessed with, because we are able to see how priceless the little things truly are.

Regardless of who reads this, I urge you to reach out. Just reach out.

If you are a parents of a PANDAS child, who is just barely keeping your head above water…just reach out. Don’t be afraid to as for help. There are many of us out there when would love to help you carry your burden, on your journey.

You can do this, and you don’t have to do this alone.

If you know a PANDAS parent, then again…just reach out. Sometimes all we need is a good ear, and a shoulder to cry on, and of course chocolate and wine never hurt.

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.

My Tribe

Yesterday I got to join many other families on SEPPA’s first ever “Walk In The Park” for PANDAS Awareness.

It was a pretty amazing day, but do you know what the best part of the day was? The best part, was that there were no expectations of my child. When she didn’t want to be in a picture, she wasn’t forced. When she didn’t want to play with the other kids, a few just sat patiently beside her. When she had a little melt down, every time I would start to apologize for her, I was sweetly interrupted by a fellow PANDAS Mama, who would look knowingly at me, and say, “It’s OK. Really. I get it” And, they did.

You see, this is what you get when you “join” a tribe who are walking the same walk that you are. They truly get it.

The walk that we went on yesterday was maybe a mile. It was short, and sweet. The road that we are all walking on in life, is neither short, nor sweet. But, I am not alone. As I walked down the path yesterday, there were kids and parents ahead of me, and beside me, and on either side of me.

That’s just what my Tribe does for me. I am surrounded by PANDAS Parents who have just started this journey, as well as parents who have been walking it for many years.

The journey is still tough. We still face tough battles, and many unknowns. But, through it all, I know that I am not alone. You, my friend, are not alone.

If you are a PANDAS Parent, and have yet to find your tribe, this is a great place to start: https://www.sepans.org/

Thank you SEPPA for being my Tribe.

Dear PANDAS…

Dear PANDAS,

This past week you tried your best to steal away our family vacation. Our precious memories. Our joy. But you didn’t. You failed.

You may have thought you had won when my daughter had a complete meltdown the other day, in the middle of Old Town St Augustine, because her shoes hurt, but instead, we all went to the mall, and bought some cute new sneakers. Because, you see, you have taught us well, on how to be flexible.

And, that time when my daughter freaked out in the beach house, because she was overtired, I bet you thought that you had struck gold, when you saw that I was about to lose my ever loving mind. But, I didn’t, and eventually she fell asleep, and woke up from her nap, feeling much better, and we had a fun afternoon at the beach.

Or, how about tonight, when my daughter was tetering on the edge of sanity because it was pouring outside, and she hadn’t been to beach yet today, on our last full day here. Sorry to disappoint you, but we ended up putting our bathing suits on, and going out in the rain, chasing waves, building sand castles, dancing, and collecting shells. We even saw a dolphin, so….there.

There have been many times where you have, unfortunately, won.

Many sports, groups, and activities have been lost because of you.

You seem to have an insatiable appetite for consuming any and all things good in our lives. However, every time you knock us down, it only makes us stronger.

It may take me a while, but slowly, I am learning your ways, and you really aren’t as slick as you think you are.

Because of you I have met precious friends. I have gained a deep appreciation for life, and I know the goodness that even the most simple of things can bring.

You may not have meant to, but in your haste to ruin our lives, you have instead blessed us with much.

So, sorry PANDAS, but, you lose.

Check mate.

Sincerely,
A PANDAS Mom