“Do you allow for guest bloggers?” I got the email last night from my new friend, Julie, a possible (probable) PANDAS Mom. I said, “Yas. Less work for me. lol.” Then I told her that it really was about the same amount of work minus all the experiences and writing it. I still have to set it and wrestle with WordPress, which can be a process sometimes. Omg.
Anyway, something struck Julie as her child was having a complete meltdown, and she started writing. I’m honored that she’d want to share it with Y’all here on PANDAS Sucks. Here are Julie’s Words and her story:
The Blue Door Fiasco
I wish I could say that it started with the blue door, but it didn’t. At about the age of 3, I lost my original daughter and she became a different human. Terrible threes is what everyone told me, and I believed them. It progressed from minor frustrations, to daily battles concerning clothing and cleaning. My first inclination something had changed, was the green pants. The green pants were never allowed to be washed. They developed holes, smelled terribly, and I lived in fear of the day the school would call me and inquire about why my child had literal knots in her hair and was wearing dirty clothing. Riding in the car was an epic battle as well. The car seat and then seat belt (when she was old enough to be in it) became a torture device. The reactions ranged from panic to rage and then to physical manifestations such as vomiting and urinating on herself. We dealt the best we knew how by going to Occupational Therapy with a wonderful therapist working on sensory developments that triggered her, adapting her diet, and beginning a homeopathic routine. Then things changed.
I’ll forever remember it. At the age of 6 she brought a knife into the room I was in and told me she wanted to kill her body because she hated it. She didn’t want to kill herself, but her body was making her crazy inside and she just couldn’t take it. Fast forward a few weeks, and my husband and I found ourselves in the office of a beloved psychologist sobbing like babies. We hadn’t realized the stress our whole family was under because of the eggshells we were walking on each and every day.
Did we give her the wrong cup to drink out of?
Did her brother sit in the wrong seat today?
Did anyone at all touch her clothes and therefore ruin them?
Will she be able to brush her hair today or will in continue to form mats?
Will she freak out because the tooth fairy lost her tooth and didn’t leave it for her?
Will we speak too loudly?
Will we say the wrong things?
Will we breathe incorrectly?
THIS became our life. EVERY. SINGLE. DAY.
A few weeks ago, I stumbled upon information that broadened my view of what our life has become. I wish I could say it was exciting to finally find a name for what she has been suffering through for the last 6 years of her life, but it’s not. I was warned of the proverbial rabbit hole of information, but that warning could never have prepared me for what I would be doing each and every night. I find myself scouring articles, reading reviews on doctors, and scanning Facebook groups. The thousands I now stand with in solidarity.
So, what’s up with the blue door?
Last night I painted the door blue. It’s a beautiful color that’s both warm and inviting. I proudly and deliberately made each stroke the same and finished with a smile on my face and excitement to show my family the work I had completed. This illness ruined that. The screams coming out of my daughter were that of someone being tortured.
“Put it back!”
“I HATEEEEE blue.”
“Paint it white again.”
This became her newest battle cry. I called for my husband, he worked to calm her, and after 20 minutes, she was feeling semi-better.
I retreated to the bathroom, cried, soaked up my sadness surrounding what this sickness has stolen from my child and our family, wiped my tears, and returned.
That’s what we do. We return each and every time. We return to the screams, the battles, the unending fits of rage. We return as mothers and fathers. We return as wounded brothers and sisters, but we return.
Thanks to Julie for taking time to chronicle her Blue Door Fiasco for us. While Julie’s daughter saw a blue door and wanted to paint it white, I have to post a Rolling Stones song here because it is relatable. In PANDAS/PANS, we see a Red Door and we want to Paint It Black (and White…since it’s PANDAS), eh? The lyrics of this song are apt to the experience of PANDAS/PANS that may not be overtly obvious until you listen. And I Can’t Get No Satisfaction is relatable too! Sympathy For the [PANDAS/PANS] anyone?..because PANDAS/PANS is certainly the Devil. Ugh.
I can relate to Julie’s mention of all the walking on eggshells we do because of PANDAS/PANS. My husband also calls it “always waiting for the other shoe to drop”. And it doesn’t matter how well things are going either…anything that mess up a good day. I’ve said before that in PANDAS/PANS you never know what kind of day you’ve had until it’s over. Basically, you need to ask me about my today tomorrow. And I’m the one that warned Julie about the “rabbit hole of information” you find yourself in when you discover PANDAS/PANS as a possibility as the answer to what has hijacked your child. Just when you think you might have part of it figured out…NOPE!…you find another puzzle that you need to solve. I think I might need to start calling it the black (and white) hole of PANDAS/PANS information since that makes sense too. Geez…PANDAS Sucks.
Thanks again to Julie for sharing. I asked her to complete the sentence “PANDAS Sucks Because….” She said, “PANDAS Sucks Because it is the very definition of fear. Fear that things will never get better. Fear that I found out about this too late. Fear that I’ll never have my daughter back. Fear that the relationships between my children will forever be strained.” Sigh.
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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” and a volunteer and technical adviser for the PANDAS/PANS documentary “My Kid Is Not Crazy.” 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.