Until my older children angrily vocalized that life in our home was no cake walk for them either, I hadn’t realized the degree to which PANDAS affects siblings also.
Siblings of children with PANS and PANDAS have their own story to tell about these pediatric autoimmune diseases—they are patients too.
The brothers and sisters living in our homes are the patients who suffer silently behind their closed bedroom doors. They are the patients who look for reasons to be anywhere but home. They are the patients who eventually cannot be quiet any longer—their sibling’s illness wears on them just as it wears on the parents. And when they are saturated, they don’t mince words.
These kids have a lot to say about the turmoil that they have been living in and that nobody can reasonably explain. Eventually they lash out from a place of hurt, confusion, blame and emotional exhaustion. In my humble opinion, I think they deserve a space in time to be unequivocally vocal and, most importantly, be heard by their parents.
I will never forget hearing my older children tell me through tears how frustrated and upset they were about life in our home. Time stood still, and my heart pounded. No harsher words have ever been said about Aidan’s illness.
Listening to my children vocalize pent-up emotions about my youngest who could not control his emotions or actions took more grace than I alone had—a grace that could only come from a higher power.
Yet, in my moment of pain and desperation, I unknowingly accepted this unexpected gift of grace. I remember a stillness overcome me as I listened. Their messages resonated with me, and I was able to propel our honesty to the next level where I hoped that understanding and healing could occur.
Talking, Listening and Shifting
When our healthy kids lash out about how their PANDAS sibling is turning the house upside down and taking up all of our time, it’s time to tune in and listen. When we embrace the opportunity to have honest conversations with our secondary patients, we create a shift in emotions that only we as parents can.
Think of this shift as a leveling of the emotional landscape in our homes. Allowing our children to express how their lives have also been side swiped fosters unity, and transparency helps keep the family resilient.
Upon reflecting on the tough talks my kids and I had about Aidan’s illness, I tried to think about what messages were potentially the most meaningful to siblings affected by PANDAS.
Here are my top five:
- Acknowledge their perspectives of home life
- Gain their trust in your efforts to find healing
- Commend their bravery and vulnerability
- Admit that you share some, if not many, of their feelings about the situation
- Show that you need their love and support as much as they need yours
I’ve learned a lot through Aidan’s journey, but the one thing I have learned the most about is our children’s (healthy and otherwise) innate ability to perceive reality. They truly understand difficult situations at their face value–in their most simplistic terms.
If we listen to our children, I dare say we will gain insights that help us cope with the very situations that we desperately wished we could escape. We were given our families—especially our children—to help bolster and guide us through the toughest times and make the joyous times even more glorious.
Supporting Silently and Strongly
At the beginning of my post, I refer to siblings of PANDAS kids as the silent suffers until they reach their saturation point.
I would like to end with a story about how my oldest, who was very vocal when he reached his saturation point, supported his brother in a way that only he could when it counted the most.
I was hanging out in my oldest’s room after a high school soccer game a few months after Aidan’s psych hospital stay in 2016. We were talking about the game highlights, and I looked down at his cleats.
I saw “AJK 11-01-2005” written on the side of one of his cleats.
“Evan, what are Aidan’s initials and birth date doing on your cleat?”
“I wrote that when Aidan was in the hospital,” he replied.
Until that moment, months after our hospital ordeal, I had no idea how affected Evan was by Aidan’s absence from home.
We really have no idea what our kids are thinking when life is going well, let alone when a child in the home is suffering from PANS or PANDAS. I hope my sharing these experiences and my reflections encourage you to spark a conversation about how the illness is affecting the siblings in your home before they are pushed to the brink of combustion.
I also hope that you notice the small, sometimes silent, ways that siblings show their support for their sick brother or sister. I dare say this moment will stop time for you as well.
I truly believe our healthy children yearn for ways to hold us up while they watch us crumble before their own eyes.
PANDAS is hard on everyone–especially the siblings. Talk to them; listen to them. You’ll be amazed by how their young — and healthy – brains work.
After all, isn’t that why you’re here…because your life and home are consumed with how your child’s brain (unhealthy or otherwise) works?
It’s OK. I am too.