Overdue Update

Twenty three weeks. I can’t believe it.  It’s been that long since confirmation of what we already knew. We already had a plan, and so we took no chances and jumped. I don’t regret it. What followed is mostly a blur.  It took much longer than it should have to escape our house.  We took every precaution we possibly could to not cross contaminate. But even bodies living in a space will do that. Of course the construction hang ups on the property were to be expected. But they kept coming. Now the goal is to just finish the shop before snow. My husband is doing that plus overseeing remediation and re-build of the other house’s interior while running a busy company. Oh yes, he has a wife and kids, too.  We look forward to every chance we have to spend time with him. And hopefully not add more stresses. Besides the move we are about to make again

Three months in a trailer isn’t so bad. If you are adventuring. If you have the right clothes for the season. If you can control humidity. Yes I have the tools. If your friends come visit you. If you are invited and included with those nearby. If everyone is well. If you’re not very injury prone. It’s not all bad, but I wish I could erase a lot of it. Just for a little while. Forget. Look back to before. Oh yes, before mold. My new timeline. Because what it means to us is  un-fathomable.

I thought it would sink in. I thought more would understand if they heard it enough times.  Which I really, really tried to not over share. And then always wondered if I had done it anyway. Thought of contacting people repeatedly to apologize for saying too much because perhaps they didn’t ask. Or want to know that much detail. Because when I say that it’s a lot, it is. And I have been told that people don’t want to be around it. Neither do I. I’m sorry.  I will try to not go there. That would be easier if I wasn’t asked. And then if I am it’s really hard to draw the line. The short story is pray for us. But love us. In person. Be my friend. And I’ll talk about it. If I am not told what not to say

The things I have had to decline! I wish I didn’t have to. We cannot take your used stuff. But thank you so much.  Please do share it with a  family not  so awkward.  Please don’t describe to me, after I politely declined, that it’s not moldy. If I describe further you likely won’t want to hear the reasons or actually KNOW what the numbers mean to us.  Please don’t ask me if you are not ready to hear the real answer.  Politely tell me that I will get through it and then never call me.  Assuming that somebody else will.

I haven’t opened my mouth on the Internet much at all.  It’s so cold. Surface. Like a text that is just that. Some words and that’s it. LOL. And so I don’t know where to go to bleed with tears but to my Heavenly Father.  Working every day to enter into His rest. Oh that’s the rest I need.

For the record. If there is one. As many have thought,  we did not just move into a house. We moved into a travel trailer in a rocky and muddy construction zone. True danger. Not because it’s cute.  Not free from the stresses of owning two properties but no livable home.  Constant construction in both places, while the tiny space we live in goes down fast.  The symptoms in my son increasing.  Mom is the one to see that. Must be my parenting. Some visuals and knowledge of humidity or not getting the “mold food” which is dust from that one window just that one time.  But that’s “normal“ for an RV. And that’s “normal“ for the Pacific Northwest. Every. Single. Day.  If I speak to anyone outside of my household.  It’s hard for me to hear this, knowing what I know. The only one who knows the numbers and what they actually mean for us. Don’t. I’m really begging.  I know, you didn’t mean to. I know it. This is next level crazy.  But it’s OK, I know it will still be said. I am just so tired.

I tested the trailer. I knew it was a waste of money, but it was helpful in a few ways for me. I did a surface dust ERMI from http://www.envirobiomics.com just like before.  Just like the beginning of our mold journey.  It’s actually better than 9 out of 10 homes you would find in our area.  For us, that’s not saying much.  It revealed the specific group of species that my son’s body has in high-levels of and cannot easily excrete. For this reason and more, we began plotting escape again.

We have been a little “floaty” And technically homeless for a couple of weeks. Eric has been getting by at the trailer because he has work on the shop to complete. A very good friend, his right-hand man, fell from about 16 feet up a couple of days ago. He won’t walk for at least three months.  In a wheelchair at best up until he can put weight on his crushed pelvis and six broken ribs. Praising God that his life was not taken.  The kids and I arrived 30 seconds after it happened. They still don’t grasp the severity, and that’s OK. Please pray for his healing.  He does not have insurance and we are helping him in every way we possibly can.

We have found a home for healing. In just a few days we will get the keys and we will have at least 12 months there to heal and find a rhythm. It is not far from the home we left just a few months ago.  We can have the dogs, it is fenced, no carpet to trap dust or to offgass. My husband wired it in July and even has full video of every wall. It baked through the late summer with finishing touches.  We could not ask for more right now. Well,  other than the fact that we own no furniture.

Some mattresses are on the way. Here I go with my frivolous shopping habits again. I’m just kidding! In all seriousness, I don’t have a choice. You have to have things to live. I’m waiting until we get the keys to buy winter coats for all five of us and we are just trying to layer in the meantime.  Most everything from inside the trailer that belongs to the kids or myself is in our new minivan.  I go back-and-forth with my comfort level of that scenario.  The gray lines, praying, the numbers, praying, the species, praying, duration, praying. Always praying that I will make the right call.  It’s too much on my husband to go into any of it.  So I am praying and using every tool I have.  I am tired.

Philippians 4:4-9

Rejoice in the Lord always; again I will say, rejoice!Let your gentle spirit be known to all men. The Lord is [c]near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all [d]comprehension, will guard your hearts and your minds in Christ Jesus.

Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is [e]lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, [f]dwell on these things. The things you have learned and received and heard and seen in me, practice these things, and the God of peace will be with you.

Therefore My Heart is Glad

I am purging. I am cleaning. I am moving every waking moment. It hurts. My children can’t fully comprehend what we must do. So we let them have precious play time and don’t drag them into these things so grand and so hard. I don’t want them to bear this burden.

The information is a relief. It confirms what I have had to fight for. It validates each piece of this thing we call escape. It’s giant and threatens to consume me. It won’t, but I still cry. I am angry at our competitors that would devour us. Decay of my child is what I imagine, because it’s the truth. Just breathing air. No coughing hacking symptoms one would imagine. Just silently and slowly trying to take him to the grave. That’s what mold does. It sounds so morbid because it is.

We have confirmation that my son has both PANS and CIRS. Mycoplasma Pnumonia is the infection that his immune system is trying to attack as it also attacks his brain. He’s positive for the HLA “canary” gene. Susceptibility has always been there. Looking back, it makes sense to me now. In an overwhelming and confusing sort of way.

Lyme disease is negative. Revealed past Epstein Bar Virus exposure which is quite normal. I didn’t know that, so it was alarming. His blood literally holds the memory and we can see it.

Today I will be picking up a prescription binder that will not allow as much mycotoxin in the bile to be re-absorbed by the intestines.  It’s to be taken 4 times each day. We will have to begin slowly, and work up to higher amounts as is tolerated. Which I have read about and it’s not something any mother would want to impose on her child.

We have to take herbals in the place of antibiotics. We are all likely resistant, at least some of us. My son was on antibiotics two years ago and I hated that. I felt it was needed because he had pneumonia that wouldn’t go away for months. I didn’t feel like it fully worked, but I had hoped it would help more. We’ll be finding out via nasal swab testing if we all truly are resistant. MARCoNS is something I have barely looked into. I have been down every rabbit hole I knew to try and now I have several more. I will figure out linking these in the blog later. I’m going in.

Psalm 16:5-11

5The LORD is my chosen portion and my cup;

You have made my lot secure.

6The lines of my boundary have fallen in pleasant places;

surely my inheritance is delightful.

7I will bless the LORD who counsels me;

even at night my conscience instructs me.

8I have set the LORD always before me.

Because He is at my right hand, I will not be shaken.

9Therefore my heart is glad and my tongue rejoices;

my body also will dwell securely.

10For You will not abandon my soul to Sheol,

nor will You let your Holy One see decay.

11You have made known to me the path of life;

You will fill me with joy in Your presence

with eternal pleasures at Your right hand.

 

 

 

Plotting Escape

“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.

https://www.survivingmold.com/
https://www.avoidingmold.com/
http://paradigmchange.me/
http://it-takes-time.com/2017/02/27/5-myths-toxic-mold/
http://moldrecovery.blogspot.com/…/how-to-do-ermi-mold-test…
https://www.envirobiomics.com/shopping