The PANDAS/PANS Community needs some GOOD news today. Here’s the third installment of Your Words: PANDAS Silver Linings.
The PANDAS Silver Lining series is where even though so much of PANDAS sucks (and I mean it TOTALLY SUCKS!), we realize that good stuff happens too. A PANDAS Silver Lining might be a life lesson, a favorite quote, a thank you to somebody that helped you, a celebration of a recovery milestone, where you count your blessings, or something that just made you smile. The PANDAS Silver Linings will vary since they are what brought YOU Light on a Dark Day, but they can bring hope to ALL. Your PANDAS Silver Lining can be somebody else’s lifeline as much as it is yours. (Read more about the start of this series here and submit your own PANDAS Silver Linings here.)
These PANDAS Silver Linings are from the web site form, and some were submitted during the PANDAS/PANS Community Survey last fall. PANDAS Sucks exists to tell our collective story about PANDAS/PANS. YOU help make that happen every single day with your submissions on our series PANDAS Silver Linings and PANDAS Sucks Because…, guest blogs, ideas for article topics, and Likes/Comments on the blog and social media. THANK YOU for all of your participation! I appreciate it! And it’s easier to submit on the new blog redesign.
With no further ado…Your Words: PANDAS Silver Linings #3:
My PANDAS Silver Lining Is…We appreciate everything. I will tear up at the most simplest of day trips because there was a very dark time with PANDAS when he could not leave the house let alone have fun at the beach. ~PANDAS Parent
My PANDAS Silver Lining Is…Getting the PANDAS diagnosis for our son taught us that his behaviors were not in fact due to poor parenting. When he’s well, he’s an amazing kid. ~Anonymous
My PANDAS Silver Lining Is…My husband and I are a team like never before. United. Strong. ~ES
My PANDAS Silver Lining Is…When it gets treated and you are in “remission” or not a flare, I would say we gain perspective on life. Both the parents and the kids. My daughter is more empathetic to those who struggle in any way. She has been there and will be a friend and a kind soul to those children that are “not like everyone else”. She will be okay, and stronger because of PANDAS. Our marriage has endured more than most, and we have come through to the other side. Those friends that stuck around are the best ones to have, and I have made new PANDAS friends that are the most amazing people. I would never wish PANDAS on anyone, and hearing my daughter pray sometimes and ask God to take away her PANDAS brings me to my knees. But it also helps me realize that she is a fighter and will grow up to do big things in life. Perhaps this is all part of the plan, even if I can’t understand it yet. ~Anon
My PANDAS Silver Lining Is…Helping others to recognize and understand PANDAS/PANS. ~Karrina
My PANDAS Silver Lining Is…My son’s sense of humor, sense of wonder, and kindness never wavered. Even on terrible days he would say funny things through the tears. In those moments it was like we were floating away but his humor and love pulled us back down to the earth. ~Bridget
My PANDAS Silver Lining Is…I have met some incredible people and doctors and researchers as a result. When my son flares my children rally around him, and even in the darkness moments, you see the purest love. Also my PANDAS son is now even more empathetic, kind and evolved because of how he has suffered. He is also stronger. ~Anonymous
My PANDAS Silver Lining Is…We have all learned techniques to manage anxiety. ~GW
My PANDAS Silver Lining Is…One on One time when my PANS boy is traveling to see his doctor. ~PANDAS Mom
My PANDAS Silver Lining Is…I’ve made some absolutely incredible friends who would give anything for anyone in our family. And these friends are non-PANDAS friends- all of our kids found each other- it’s how the parents met. There have been many “things happen for a reason” moments since PANDAS hit. There is meaning in all of it.~Marie
My PANDAS Silver Lining Is…My son emerged healed after 5 years and found his own voice hidden deep. He feels he can conquer anything life throws at him now. I met extraordinary people and found parts of myself too that will never back down when my gut says to act. ~AH
My PANDAS Silver Lining Is…the song “Brave” by Sara Bareilles. It energizes and lifts me up whenever I hear it. Sharing it with everybody else. ~A
My PANDAS Silver Lining Is…It’s made us appreciate the easy times way more. ~PANDAS Parent
My PANDAS Silver Lining Is…After three long years of off and on flares my 11 year old daughter has just participated in a gymnastics performance in front of thousands of people…. and in March will be in the half time show for the Harlem Globetrotters. ~Heather
My PANDAS Silver Lining Is…Your child CAN recover! Unfortunately, recovery takes a lot of time, commitment, and money. ~Anon [Note from Sarah: It’s very worth it!!!]
My PANDAS Silver Lining Is…It has been over 3 years since the official PANDAS adventure for our family began. One silver lining occurred last year, when Aidan, then 9, was so fixated on birds (talking about birds, thinking about birds, hiding in a tree to watch birds, preseverately making bird calls, acting like a tree, trying to “save” baby birds while being divebomed by the parents…) that his then 3 year old brother, Joseph, who has Autism and is considered nonverbal, said the word “bird”!!! Currently, even though Aidan’s obsessions have shifted to Pugs and Australia, he is happy to practice the following with his little brother: Joe first has to imitate the word “bird” then he gets what he wants, like the movie Angry Birds. ~Maureen
My PANDAS Silver Lining Is…I have learned that no matter how well I think I know my kids – they will always find new ways to amaze and astound me with their resilience, strength and determination to fight. ~Sandra
My PANDAS Silver Lining Is…We found a wonderful, compassionate pediatrician. ~Anonymous
My PANDAS Silver Lining Is…This past weekend, my son auditioned for an acting class with a new company, and he was accepted! Woohoo! It will be a very cool opportunity for him. He is likely still going to take a class where he usually studies too. But this time last year, we were on the brink of a major exacerbation, and he ended up needing to drop out of the TV/Film Acting class he was taking and needed an IVIG. He started acting classes back up in the fall, and this new win now is a super accomplishment and feels really good. We are very proud of Jesse…and he is very excited! It’s awesome! ~Sarah
I’ll also include the poem I recently shared in a blog post about Hope. Our Dark Days of PANDAS/PANS may make us forget, but we need to always have HOPE:
Hope Is The Thing With Feathers
by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I’ve heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
I really appreciate all of your participation on our Blog. Thank you for sharing all of your PANDAS Silver Lining. And remember, when things really suck, you can vent 24/7/365 by completing the sentence “PANDAS Sucks Because….”. Or if you have more you want to say/rant about PANDAS/PANS or wish to tell your story, write a Your Words – Guest Blog. I’m happy to share the space with y’all on the PANDAS Sucks blog.
Here’s hoping your today has some LIGHT moments. <3
Tell us why YOU think PANDAS Sucks. Click here.
Have YOU found a PANDAS Silver Lining? Click here.
Want to write a Guest Blog in YOUR WORDS? Click here.
Want to send a message to Sarah? Click here.
Sarah Jane Alleman is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. She is also the Director of Kentucky PANDAS/PANS Support,which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on Facebook, Instagram, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.