Dear PANDAS, It’s me again.


Dear PANDAS,

Often times you are so painful to be around, that I tend to forget the blessings that you bring.

I know we don’t get along very well, and lately I’ve found myself yelling at you, outside in the middle of the night.

The past two days you’ve given my daughter a fever, which meant she was stuck in bed pretty much the entire time. You leave her exhausted, with painful joints, crazy rituals she has to do, before moving on, and little desire to eat.

You turn her into something akin to a caged wild animal.

You overextend your welcome more then any house guest I’ve ever had, and just when I think you are gone, you return like a tsunami.

But.

You have also blessed us. You have made my 8 year old daughter, stronger then most adults. You have softened her heart towards others, and showed her that every child has a unique journey, and is so very precious.

You have taught me to go way out of my comfort zone, and to surround myself with an incredible tribe of women who also know you well.

Most of all, you have taught me to appreciate and cling to the precious glimpses of normalcy, like the one we got tonight, as my daughter loved on our Mammoth Donkey, EmmaKate.

Don’t get me wrong. I still hate you. We are still in this fight with you, and we have no plans of stopping.

In fact, you need to know, that we will win this. It may take some time, but we will. Count on it.

Sincerely,

Me. Again.

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Choose Joy


After PANDAS hits your family like a Tsunami you are going to have to make a choice to live again.

Make no mistake. It is a choice.

You can choose to be with people who will love on you, and support you through this.

Or you can choose to keep people in your life who will bring you down, and hurt you.

Choose wisely my friends, because one will bring you Joy, while the other will just bring you to bitterness.

Bitterness is a terrible place to be, and it is toxic for the soul.

Find joy wherever you can. Choose something that you can call your own, that is purely just for you.

Little by little, day by day, you can get through this.

Choose Joy, and let it define you.

Not your circumstances.

You should live.

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…”

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.