The PANDAS Silver Lining series is where even though so much of PANDAS totally sucks, we acknowledge 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.)
I have received several PANDAS Silver Linings via the web site form. Many people also included a PANDAS Silver Lining when they completed the recent PANDAS/PANS Community Survey. I’ll be using those survey answers here and in future blogs. (And I’ll be reporting on all of the survey results soon.) I appreciate all of the participation!
I want to begin with my own PANDAS Silver Lining and Thank You.
My PANDAS Silver Lining Is…that I am THANKFUL for all of the amazing people that I have met since my son got PANDAS. I want to say THANK YOU to everyone that has ever taken a moment to answer a question I had in a forum or group when I was having a meltdown or was totally stressed out. THANK YOU to the strangers that let me help them when they ask questions because it helps me feel that my journey and experiences have a purpose. THANK YOU to all of the PANDAS Mom and Dad friends that I have made where our relationships extends past PANDAS and into our everyday lives. THANK YOU to the Kentucky PANDAS/PANS Support folks for being such a great group and so willing to share their awesome brains full of knowledge. THANK YOU to the doctors and nurses and researchers and advocates that fight for our kids daily. THANK YOU to the nameless blood donors that made Jesse’s IVIG treatments possible because they have been lifesavers. THANK YOU to my husband, J, for sharing the load and listening to me yammer and bitch and moan and gripe and also listening when I have my epiphanies and big ideas. THANK YOU to my in-laws, Judy and Jim, for being so supportive of Jesse and me and J. THANK YOU to my son Jesse for being so brave and resilient and for forgiving me when I screw up left and right. THANK YOU to my non-PANDAS friends for loving me and taking care of me when I need it the most and for tolerating me when I am intolerable. THANK YOU to all the PANDAS Sucks readers and participants who let me give back to the PANDAS/PANS Community in a creative way. I want to dedicate the following song to all of y’all because if you see this I want to THANK YOU and urge you to think about all of those who help you during your time of need. YOU have my admiration for all that you do for children. I am sending you MANY HUGS and MUCH LOVE, and I wish you a VERY HAPPY THANKSGIVING. I hope that your Holiday Season is full of JOY and PEACE and GOODNESS. THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU! ~Sarah Jane Alleman
My PANDAS Silver Lining Is…Friends I’ve made throughout the world! ~MB
My PANDAS Silver Lining Is…I really appreciate what I have. I have a wonderful and brilliant mother-in-law who diagnosed my son before the doctors did. I have an awesome husband who supports his family in every way. I have two beautiful, smart and loving boys that keep me on my toes. Lastly, I have learned how to be a strong mama bear and advocate for my children. And everything else in life is just small potatoes. ~Kate G.
My PANDAS Silver Lining Is…People often say to me, “This must be so hard on your marriage.” And it is. But, we’re strong (25 years together) and my husband is our family”s bedrock. I’ve witnessed him becoming an even better father for both of our sons (10 yo with PANDAS and a newly minted teenager). I fall even more in love with him when I watch him helping one of the boys. He’s also proven to be far more observant and capable than I ever gave him credit for before our youngest started this dreaded journey. This illness hit our family hard, but it’s tempered us, like steel, and we’re stronger for it. ~Michele Johnson
My PANDAS Silver Lining Is…My husband is an amazing dad. ~KT
My PANDAS Silver Lining Is…Even though my PANS/PANDAS sons might be in a really bad flare, sometimes when it’s the worst, they are totally cuddly like when they were little toddlers and want nothing more to lay by me and snuggle. I know this means they are sick but I take full advantage of those moments and just snuggle and breathe. ~Kristen R.
My PANDAS Silver Lining Is…We appreciate the good days and can laugh at the most ridiculous of things that happen in what is the ordinary everyday life of a PANDAS family that would bring others to their knees. We have learned our own strength and love for each other. ~Amber
My PANDAS Silver Lining Is…It has brought our family closer together. ~PANDAS Parent
My PANDAS Silver Lining Is…The only silver lining is that my son and I have an irreplaceable bond. I believe that this was strengthened because of PANDAS. ~Anonymous
My PANDAS Silver Lining Is…We are doing a lot less than we would normally do. We are just grateful for the days when there are no meltdowns. ~Anon
My PANDAS Silver Lining Is…I know that my child is *so strong* and am very proud of myself for advocating so fiercely for him. I didn’t know that we had that kind of inner strength! ~PANDAS Parent
My PANDAS Silver Lining Is…I have some of the most amazing friends who are on this same path and we support each other. ~GMT
My PANDAS Silver Lining Is…No. it has not made me stronger. It has made me sick, tired, and angry. It has not made me more empathetic to others – I already was. The only good thing I can think of is that it has shown me that while many family and friends do not understand and lack empathy, I have many in my life who are there for me and are incredibly supportive. My professional life has suffered immensely from this but my work colleagues have all been amazing and stepped up to cover for me and give me time off. I am surrounded by love and support from family and friends. I knew that – but now I have proof. ~Anon
My PANDAS Silver Lining Is…I haven’t found any yet – except maybe that the current flare was such a steep change that it saved future years of missing diagnosis. ~PANDAS Parent [Note from Sarah: That can be counted as a blessing even as sad as it is. <3 ]
My PANDAS Silver Lining Is…I get to spend more quality time with my children, since we homeschool now, due to PANDAS. ~TB
My PANDAS Silver Lining Is…Each day I don’t cringe at my child is a positive day. It just plain sucks to cringe at a human who you love with your whole being. Sucks. ~Anonymous
My PANDAS Silver Lining Is…I think for us maybe a better understanding of overall health, maintaining proper diet, and being totally alert and aware of when my child is off. The first sniffle causes a complete action plan to be put into place. ~SMB
As you gather with your loved ones this Thanksgiving, send some positive vibes out to the PANDAS/PANS Families all over the world. We all share a bond and sit around the same table whether we know each other or not. Giving thanks for all that we do have to be grateful for can go a long way in our own healing and in helping our kids too. THANK YOU for all you do. You’re amazing. Always remember that and never doubt it.
I’m spending the holiday on my own…by choice. I needed some brain space and peace and quiet. I feel like lately all I’ve been doing is going, going, going. I absolutely LOVE having the house all to myself. I sent the boys to my in-laws, bought a whole chicken to roast for myself tomorrow (unless I’m too lazy and just eat cereal instead LOL!). I have a long list of things to do around the house and some other work I want to get done. I’m hoping I don’t just watch TV. So far, I’ve been somewhat productive, but didn’t have much planned for tonight. I still have all day tomorrow and at least part of Friday or maybe into Saturday…just depends on when the boys come home.
Thank you to everybody that sent in a PANDAS Silver Lining. Are you feeling inspired? Share your own PANDAS Silver Lining. And remember you can also complete the sentence “PANDAS Sucks Because….” because it DOES really suck. Sigh.
THANK YOU and HAPPY THANKSGIVING!
Tell us why YOU think PANDAS Sucks. Click here.
Have YOU found a PANDAS Silver Lining? Click here.
Read the full YOUR WORDS series 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.