the place between


I have never been on this side of a respirator before. Nor have I been in the position to question daily where I went wrong as a parent due to my child's increasingly questionable and very challenging behavior. These two things have come together in the most unimaginable way this month. I know I have shared a tiny bit about our MOLD journey online recently, but I haven't shared many details. It feels like I am living in the void, or the place between. Half of 2017 is over and things just won't slow down for my family. I dread posting thoughts or even asking for help as I now feel like that "friend" that always has some crazy shit going on. 
Most of you know, we moved to Tallahassee last spring. Upon moving into our rental in the BEST neighborhood in Tally, we were pretty grossed out over the amount of dust and grunge in the home. My mother worked tirelessly for 5 straight days to help us unpack and clean as it just wasn't up to our standards. 
Winter came and went and upon spring and early summer of this year, I had had enough of the chronic colds and coughs in my children that had carried on regularly since the holidays that I decided to find a different pediatrician and doctor for my family. At the same time, the windows really started showing mold growth as the humidity levels rose (despite our basement grade dehumidifier).  Coincidentally (or so I thought), my oldest son was diagnosed with ADHD, ODD, anxiety and depression at age 5!!! A few months later, he was given a 'weak' autism diagnosis. Nothing added up and I struggled watching my little boy turn into something I know he is not. It was during this time, I delved into biomedical circles online, and began to research and read up on anything that sounded like our situation. It wasn't long before MOLD came up over and over again as a plausible cause for some of our struggles. The MOLD groups overlapped with PANDAS/PANS groups, and within weeks, I was confident that my son had developed PANS and that this disorder was triggered by MOLD exposure in our home. 
He struggles with every symptom on the list, and so do we as his parents.
I decided that I needed to test my home, and with the guidance of a dear friend that was also experiencing PANDAS and mold in her 3 year old, I tested using a HERTSMI-2 swiffer test from Mycometrics labs. We had all 5 toxic molds present with Aspergillus penicillioides being the highest. For those of you that are not familiar with this test, a whole house score of <11 is safe for those with any mold illness like CIRS. Our whole house number was a 28. Which calls for remediation. We luckily do not own this home, and we made June our last month there. The mold was coming from leaky HVAC duct work in our uninsulated crawl space. MOLD spores, which are everywhere outdoors, were being sucked into the home and circulated around and into the air. Lots of dust as well, like we had noticed upon our move in. Everyone in our family has been impacted including our animals with some of the highest vet bills to date this year. Skin issues, Mast Cell reactions, rashes, fatigue, poor sleep, bed wetting, rage and irritability, anxiety and OCD just to name a few symptoms from the MOLD and PANS. 
It has taken us weeks of slowly cleaning every single thing that we can save from our home and putting it all into storage. The rest that couldn't be properly remediated had to be sold or thrown away. Thank God for a few friends that really showed up to help. Leah, who came all the way from Gainesville for 4 days and made me laugh and played music AND visited a spring with me for detox. Dorrie from my hood that came and took away loads of laundry and returned them vacuum packed and ready for storage. Adina, who is local and brought me late night sugar filled snacks for my mental health, and helped me clean and supported me when my oldest son had a panic attack on one of our last days of clean out. (he saw us deconstructing his legos and trying to clean them). Melinda from the hood, made my family a delicious lunch of curried chicken and rice, and brought my kids clean toys to play with during the chaos of our home being taken apart. Sally, from the hood (whom I don't even know) that offered to pay for my first visit to her chinese medicine doctor to help us alleviate our symptoms. Carla, also in the hood took in my sweet boy Rocket (cat), while we search for temporary housing.  Catherine, a fellow biomedical warrior mom also from my neighborhood, had my home cleaned upon move out so we could focus on our belongings and not the moveout list. I am so proud of my amazing husband that worked tirelessly, and late into each night for 5 straight days, moving our entire home into storage ALL by himself. I honestly don't know how he managed it. I am grateful for all of these kind souls.
We are now at a local airbnb for the next week thanks to Adina, and then will be headed to the grandparent's home for a week, and then to NC for a vacation. we are frantically searching for a place to lease in the midst of all of this, as the property managers did not help us in any way upon moving out, they didn't even pay for our mold testing, or try and find us alternative housing.  
Needless to say, I haven't been picking up my camera much, but I have taken a few for documentation and a few for art, here they are at random in the place between.