When tragic things happen, we are often at a loss for words. There are simply some things that cannot be made better, no matter what we say.
It has only been a week since we learned of the incomprehensible tragedy that has befallen a family in our PANDAS/PANS Community. We know this was not the first loss. We desperately want it to be the last. This news may have come as a brutal wake up call to some, but many of us knew death from PANDAS/PANS was a specter looming out there for our kids. Some have even experienced threats of this kind of loss that never found their way to the finality of the action. Some have seen certain symptoms take their heavy toll and win the fights over mere children’s bodies fighting unimaginable battles. Our hearts go out to those who have felt the most tragic of losses in the grips of a terrible pediatric medical condition.
What makes all of this worse is that we know that even with the awful reality of this horrific loss, there are still some that will say PANDAS/PANS does not exist. There are doctors, teachers, family members, and friends that still may say to your face that you are making it all up and exaggerating the issues your children experience. This inability to believe in PANDAS/PANS means that treatments that could help prevent the worst case scenarios are still delayed or even denied. These Dissenters, Disputers, Doubters, Deniers do not know the fear of losing their child to a PANDAS/PANS exacerbation…or something worse. Meanwhile, our Community cries out for more support, and we constantly lose things that can never be replaced.
Our PANDAS/PANS Community is beset by various losses and tragedies on a daily basis. You can read about them in any of our online support groups. As PANDAS/PANS Parents and Caregivers, we are all grieving constantly whether we realize it or not. That hopelessness you feel in the middle of the night, that’s grief. That fear that your children will never be the same…that’s grief. That sobbing that racks your body from out of nowhere…that’s grief. We miss our old lives. We miss our old selves. We miss our kids the way they used to be. We miss our past, and we know we are missing so much of our present. We miss the future and the way we had imagined it. We miss peace. We miss so much because we have lost so much. But there is one thing that we must never lose…HOPE.
When we send heartfelt words of condolences to the PANDAS/PANS families experiencing terrible tragedies, we must also have hope for them. Hope that they will be well cared for and supported during this time of transition and survival. Hope that they will be loved. Hope that they will be comforted. Hope that they will find some semblance of peace very soon. Hope for a return of hope in their own lives when it must seem like all hope is gone.
It may seem selfish at a time like this, but we need to also have hope for ourselves. Hope that our PANDAS/PANS Advocacy and Awareness efforts will make a difference. Hope that the medical community will respond and stop ignoring and downplaying a very real pediatric medical condition. Hope for major breakthroughs in research and studies. Hope that all of our PANDAS/PANS children are effectively treated. Hope that all of the misdiagnosed and undiagnosed kids will find their way to help and receive effective treatments. Hope that our families find healing in every way needed because PANDAS/PANS does so much damage to everyone. Hope that no more PANDAS/PANS families suffer the most ultimate loss.
Emily Dickinson wrote a beautiful poem about 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.
The message in these lines is that even when it feels like all is lost, hope is still there. Hope never needs anything from you. Hope will patiently wait for you to remember when you have forgotten it exists. Hope will be keeping you warm even when you are so numb you cannot feel the cold. Hope is always singing and chirping in your ear even when all is silent around you. And my hope for you is that you will always find hope, even in your darkest PANDAS/PANS days.
As I’ve said in this blog before: “I speak your language…. Yes, I speak PANDAS and PANS and am fluent in all its dialects. But I also speak Amazing Kids and Awesome Parents. I speak Perseverance. I speak Dedication. I speak Determination. I speak Bravery. I speak Incredible Love. I speak Healing. And most of all, I speak Hope.”
So, grab a hold of those feathers perched in your soul, and let’s soar away together on our wings of…HOPE.
(“hope” image credit: pinterest)
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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.