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Thunderstorms & Grief

Sep 02, 2022
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Parenting a child or teen with PANS brings grief

If you are part of my Facebook Group for PANS Parents, you may have seen my post about this quote.

I used that quote as a way to express what it can feel like to deal with the stressors of parenting a PANS child.  There is a need to feel like you are not the only one who wants to scream sometimes!  So if nature needs to "scream" also, in the shape of a thunderstorm, then maybe we can rest assured that it's natural and healthy to express the intense emotions that we experience as PANS parents.

Grief has several stages, and in theory, these stages lead to "acceptance".  Acceptance is not giving up or giving in to PANS, but it's making some peace with our situation so that we do have more energy to fight for and take care of our PANS kids/teens and ourselves.

Grief can be comprised of many feelings and PANS parents need to be able to express these feelings, and feel seen and heard.

Some of these feelings can include:

  • Grief from the loss of a childhood or time when a teen should be able to be a "normal teen".
  • Grief from the loss of the opportunity to parent a child or teen through "typical" developmental stages.
  • Fear due to the unknown prognosis for a PANS child or teen.
  • Anger at the injustices a PANS family contends with--illness, lack of support, gaslighting.
  • Anger at the expense of treating a PANS child(ren) or teen(s).
  • Frustration from lack of clarity and efficacy of treatment methods.
  • Sadness about the impact of PANS on the whole family (siblings, spouses, extended family)
  • Guilt, fear or confusion about "Should I be doing something additional or different for my PANS child/teen to help them get better (treatment, therapy, etc)?"

PANS parents walk a very difficult path, and often, a lonely path.

As a PANS parent, I have experienced all of the above emotions and experiences.  I still have times where I cycle back through these emotions, even though we have been walking this path for 18 years with my daughter. 

When we PANS parents have the chance to tell our story, express our emotions, feel heard and understood, we do begin to emerge with a new strength. We begin to feel empowered to care for and fight for ourselves and our PANS child or teen.

An important step we can take during the PANS grief process is to connect with others on the same path and support and validate each other.  If you are feeling alone, I encourage you to join my Facebook Group for PANS Parents

Did you know that I have a course for PANDAS/PANS parents?  You can check it out here: PANDAS/PANS parenting course