“Wormhole” is often thought of as an invasive passage made through an apple by a worm. It is also defined as a passage that sometimes defies space and time. This is our lives right now; invasive; drawing us into a different place in life; even defying understanding. And it’s a gift. Letting us out. Set free.
I am not known for being speechless. When this all came to light, I had no words. Now I must find the words to convey what is happening in our home and the steps we MUST take to find our way back to health and wholeness. This is the hardest thing I have ever had to say. Most people don’t know. There are a handful of people I would rather not have know. But I can’t be silent. It’s not working out so well for me to continue that. The isolation is a killer. Choking or not, I am putting together this blog and more to help inform those in my circle of what is going on. Later, we hope to educate people regarding the issues we are facing. Right now; however, I am looking for a safe place; an understanding arena; a small tribe of people among friends and family.
Some people reading this may think we have put on tinfoil hats and spend too much time finding answers from sketchy sources. Not everyone likes our choices, and that’s okay. My husband is with me 100% and that’s a blessing. So, put on your tinfoil hat, too, and please join us in this journey. I am letting you in.
We are dealing with an extreme amount of changes necessary as the result of mold and the toxins from it in our home. This is a tiny portion of what has been a growing, changing ailment for 6 months and still remains the same problem for my eldest son despite all our efforts.. Some know he’s been “sick”. The odd thing is that it really IS all in his head, literally. When people are around him, they’d see an 11 year old boy. Normal. However, he now has a diagnosis of PANDAS/PANS, a controversial topic within the medical community. There is a possibility of Lyme disease, other co-infections are possible and vast. This may shift to a CIRS focus. At this time due to all the work ahead for us, I will let you look up the descriptions and symptoms and the possible causes, which can be different for each person. Each trigger you would find in a quick search is a possibility for him, but we have confirmation of some probable causes. Mold is at least a large portion and removing ourselves and attempting detox must be number one. Symptoms can vary from person to person greatly. I now have a few of my own. Very sporadic. I do question minor yet persistent health concerns in all of us now. We will be watching the layers come off. For all.
In his head? What does that mean? Encephalitis is swelling of the brain. The blood brain barrier is open; easily compared to a leaky gut. In this case, the body responds to a problem and also attacks itself. It’s autoimmune. We have decided not to go the way of typical treatment as it would further colonize the mycotoxins in his body and this is just not an option. We are not interested in “band-aids”. If you are thinking of suggesting, “Can’t you just…” fill in the blank… No. We can’t. Yes, we have questioned. We are moving mountains now on our decisions and they are all very meticulously sought out next steps. Or we risk it all. Now our goal is to make every change necessary so we do not have to do this again. This is not for fun. This is not for the sake of drama.
My son is that canary in a coal mine. Canaries were used to detect toxic air that could affect coal miners. This practice wasn’t that far back in history. When the canary no longer sang, the air had become dangerous. Deadly even. Levi’s ‘voice’ has been hindered by the air we have been breathing and we did not realize it. Not until a long stretch of sleuthing brought us to the facts. Not many are canaries like him. The blame he placed on himself for not communicating effectively what was actually happening. He had no way to know. No way to explain, wanted to give up, just be sick forever because the fight was hard. He now has hope. There is an electricity in the air. Hope! Light!
My house is normal. You’d come here and see a stretched but life loving family. I have many items, like most people. Creativity, unfinished projects, typical mom exhaustion. Or is it… I now know so much more about toxins and what is not good for us. Our items are safe for the general public; those non-canaries I suppose. Do you shop in thrift stores? Do you love antique books as I do? How about a library of brand new books even? These are a few of the things I must give up and be willing to stop thinking about now that we know of the danger to our canary. Some memories will need to be responsibly stored. Explaining the losses to come to our children was a weight welling up in me. Unavoidable. They now know, and are learning to understand, pick up cues, smile, and know we will shop a bit when it is safe to do. And only when necessary. It was heavy and I could barely think about it most days. Scaring my babies, tearing away their “friends” the stuffies. What was I going to do? Well, whatever is needed. Anything for them. Responsibly.
I knew before “I knew.” I had stayed awake often, on this amazing internet. Praying and reading and researching and praying. It was confirmed after testing that our normal home had mold. We performed a surface dust test called and ERMI. Surface dust is the only responsible way to get a FULL picture of what you are dealing with. Never settle for air testing if you find yourself in our place. We have just had an evaluation of our home that indicated the levels of what we are dealing with as a DEFINITE source of trigger for our son. You can’t “just kill it”, or it becomes a mycotoxin. A dead spore is still a spore. It becomes more easily broken and scattered, then releases VOCs as it continues to do this. For someone with a damaged blood/brain barrier, this is detrimental. The source and “events” of water damage, current or past, must be completely removed. There is no product, marketing slogan, consuming or eating or blocking or devouring thing in this world, that can take the place of this process for my family. We will re-build. For others here, for us elsewhere.
We are now working with a Shoemaker Protocol group in Millwaukie, OR. All of our costs are out of pocket. We are hopeful that recovery will become less expensive, but it won’t be for a long while. Our doctor is a pioneer and I couldn’t be more at ease. I have someone who won’t throw my child under the bus. Even on accident. I can’t afford that ever again. We hire who works and we follow the proof. God gave me these instincts and they have been right.
Our first step after the easy decision to go was to find an RV ASAP so we could responsibly leave our home and live on our new property in La Center. It needed to be one that had never been water damaged and was adequate for a family of 5 and 2 dogs for 4 seasons. We are still seeking a way to have the dogs safely outside. We have purchased OUR HOME and will park it on our acreage. We are in the beginning stages of building a shop so we can park undercover, as well. Beyond that, there are a myriad of micro decisions to be made regarding our belongings. It is a heavy weight that I must give up to God as it belongs to Him anyway. And hey, I get to be RIGHT.THERE during the building of our new home. That starts soon and choices of materials may change. Building biology is a new interest of late.
Our current home will be empty soon. It will undergo strict protocol to remediate the issue found. It will be carried out professionally. It will be for sale eventually. How amazing that we already were preparing for a move. It’s definitely different than we had planned. But everything will work out. We don’t know yet what the costs will be. It just has to all be done correctly. This is a wonderful place with wonderful neighbors. It saddens me that we won’t have the summer here. But relationships have been built that will not change. Our hearts have grown here for nearly 8 years. Our youngest son was born in this home. And it’s time to prepare it for someone else.
We will need to discard, sell, and giveaway most of our possessions so we can begin anew and find ‘fresh air.’ We cannot take shoes, toiletries, have decided to not even risk clothes at the start of the move. The process for those is meticulous, repetitive, still questionable whether it will be successful. We won’t know just how sensitive we all are until we are free. Total sabbatical from our items. We are in shopping mode, research mode, mom mode, and much of it has been crippling, but we are moving forward. I have been praying for a shift within my life and our home. I begged God and I meant it when I cried out to Him, “I don’t care what it looks like!” This is what it looks like. The blessings are already evident. The only thing that matters is that our family is together and our hearts are one. Many of us are going through hard things. We can emerge on the other side changed and strengthened. If I can do this, I can do anything.
Our needs right now? To move as quickly as possible, to offload our possessions safely, and to replace the essentials we will need in our new home. In addition, we must prepare for those times when we enter the real world… essentially, the coal mine again, and watch for signs that could be toxic to our family. We are taking extreme precautions that may seem overboard to some, but we are not interested in going through this process again.
Any way you can help is appreciated. Extra hands. We love that people have offered to help. We will need all of it we can get. During that time, just know that this woman of many words may need to unload sometimes. It may not seem understandable because most of this really doesn’t fit into any everyday way of life. You can help me by listening, lending a hand, doing some research, helping us pick up items, haul things to the dump or for donation, and above all, come up alongside us in understanding. Right now, rallying the troops and circling wagons sure would be amazing. We have experienced some of this. For now, our goal is to keep the canary singing. It is worth all the tears, countless hours, and every dollar spent.
Below are some links that might help you understand more of the issue we face and we know we are not alone. I will refine things and update as I learn this blogging thing. But I had to get it out.