My Personal Shift after Son’s PANS Journey: Healing, Letting Go and Moving Forward

Caring for a PANS / PANDAS child is emotionally, mentally and physically exhausting for parents — I speak from personal experience. Shortly after my son began to show signs of healing, I fell into a deep hole. I had struggled with depression for years, always attributing it to the stress of having a chronically ill child. However, when I thought I should be feeling better, my depression became debilitating.

Much too often the effects of PANS / PANDAS on parents is dismissed, and we suffer in silence for far too long. In this post I share about my own depression, my recovery, and how I’m moving forward.

Thanksgiving 2019

It looked something like this ...
_______________________

New year’s resolutions have never been my thing, and it’s been decades since I’ve thought about goals or aspirations.

All that consumed my thoughts for years was Aidan’s screaming and rages and defiance because of (undiagnosed) PANS, how his illness was dividing my family, and what could I possibly do next to make this better.

Nothing worked for more than a couple of weeks.
Not medicine increases or changes.
Not intensive in-home congnitive behavioral therapy.
Not occupational therapy.
Not reward systems.
Not tough love.
Not crying and begging.
Not a physician ordered inpatient psyche hospital stay.
Nothing.

Fast forward 13 years. Plasmapheresis works.
Aidan enters remission.
The weight lifts.
We breathe easier.

No!
Wait!
Mom.
crumbles.
Depression consumes her.
Anger embodies her.

She almost loses herself.
To a relentlessly oppressive weight.
A warped perception, desperation and delusion.
A wrath of emotions sends her into a never-ending tail spin.

CUT.
TAKE 2.
Year 2019.

My rebuilding year.
Slowly. Steadily. Like setting up Jenga blocks.
One at a time, holding my breath.
Keeping a steady hand, reaching out to new heights.

Correct diagnosis is once again key.
Commitment to treatment, compassion and grace.
Slow progression morphs depression’s face.
Suffering dissipates, she begins to feel free.

OUT TAKE.

LIVE from Times Square, New Year’s Eve
5, 4, 3, 2.
Aidan snaps a picture of the TV on his phone — for Instagram, I assume.

1!

Happy New Year’s, Aidan.
He’s all smiles.
I turn to my right to give my husband a kiss.
But instead swat his cheek.

“And that’s how we start 2020,” he quips.
We laughed.
We kissed.
We made it.
_______________________

I am so glad that I took the time I needed to focus on healing. I have spent the last year embracing my family and creating memories with the ones who are courageous to love me unconditionally.

I have allowed myself to recalibrate as a wife and mom of three teenage kids — the oldest of which turns 20 next month right down to my youngest, who is the inspiration behind my blog. I have also accepted Aidan’s illness and our family journey as part of our story, and no longer allow PANS to have a fresh handprint on my identity. In doing so, I have grown comfortable with the person I am now. Meeting myself where I am and practicing patience and kindness is a beautiful gift of self-care. It has made all the difference for me.

While I do not think there are any big New Year’s resolutions on the horizon for 2021, I can say that for the first time in well over a decade, I have aspirations — one of which is to take my blog to a new level. I want to delve into topics and offer insights gleaned from conversations with PANS / PANDAS caregivers and advocates. Our online community has grown by leaps and bounds in the last five years — my sources are endless. Some topics that come to mind are strategies for safe in-home infusions during a pandemic, raising awareness among state legislators virtually, and building a continuum of care via telehealth, just to name a few.

I hope you will share your ideas about what you would like me to cover. I look forward to dusting off my reporter’s cap and putting my journalism instincts to work for you.

4 Comments


  1. You all did make it!!!! Thank God for the miracle of Aidan’s recovery and your own. Your writing is as beautiful and moving as ever. I’m so glad to hear that you may be in a place where you can use your gift and life’s experience to spread realism, hope, and encouragement. I love you and my heart bursts with joy for you, Mike, and the kids.

    Reply

  2. Hi MJ!
    So enjoyed this! You are an amazing writer , mother and person! I am so happy both Aiden and you are feeling better! As you know Amelia struggled with PANDAS and my son did as well about a 2 years ago. Hard is an understatement! Thankfully, everyone doing much better now! My close friend‘s son battling PANDAS now too. He is making progress.
    Thank you for all you do to help bring awareness. So important!! All my best. Mary

    Reply

  3. MJ, this post brings tears to my eyes for a number of reasons. A child suffering like Aiden has is one, but your honest account of your own struggles and depression makes my heart hurt. Perhaps because it feels familiar. At any stage in our lives, the work to regain our footing and wrestle the ‘black dog’ back from every part of life is like climbing an insurmountable mountain. I’m so glad to hear you’re at a hard-won safe spot on that journey.

    It’s been far too long since I’ve seen you and Mike but I hope we can fix that soon.

    hugs,
    Kate

    Reply

  4. MJ, what a thoughtful and beautiful post! Thank you for being so honest in sharing your experiences. I especially love when you said:
    …no longer allow PANS to have a fresh handprint on my identity. In doing so, I have grown comfortable with the person I am now. Meeting myself where I am and practicing patience and kindness is a beautiful gift of self-care. It has made all the difference for me.

    The idea of PANS no long having a fresh handprint on your identity is huge! So is meeting yourself where you are!

    I’m looking forward to reading more of your blogs! I know many people (including myself) will benefit from you sharing your journey and be inspired by your willingness to be brave and vulnerable at the same time.

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *