The Flog – The Fabry Log

Andrea wrote some friends in our old hometown to give them an update on our progress. It helps us to take a hard look at our situation. And it shows our progress. I thought you might like to peek over our shoulder and take a look at what we've told to friends who have been so dear to us. It hurts not to be able to enjoy their company and laugh with them.

Here is my edited version of her letter.

We signed a 12-month lease Friday and it became real that Monument will not be our home for awhile. I knew, then, that I wanted to update our community of friends who have offered such support these last two years. It's hard to believe that school is beginning soon for all of you. I will so miss that first day of school.

(By the way, Andrea always had a tea/coffee event on the first day of school in August. Women filled the house to overflowing and there was such life there. Pippen and Frodo went wild with all the attention and shoes to sniff. Andrea loved getting new people together. I loved the pastry left over afterward. That is a big loss this year.)

We continue to progress here. The climate is a contributing factor to this, even in the dog days of summer. We were at 107 yesterday. The progress is slow. Very slow. Some days I can't see it. Last night, as I watched all of them play at the park, I saw it.

Photo by Edward McCain

Brandon: His neurological recovery continues. He's much calmer and able to sit still. His rashes have greatly improved. He is extremely sensitive to any and all chemicals and his eyes will redden immediately. He continues to suffer severe nosebleeds.

Colin: his migraines are infrequent. Abdominal pain is rare. His blood sugars are still erratic. And just last week colonized fungus appeared all over the backs of his legs. This shows the de-tox is working. It also shows how far we have to go. He and Brandon are on a baseball team.

Kaitlyn: is extremely sensitive to the environment. Her immune system is so taxed that we had to stop her horseback riding lessons for awhile. She struggles with rashes and strong allergic reactions. Her vision has improved and she is back to reading! She has two friends and is excited about our new house.

Reagan: his light sensitivity has improved. Rarely has a migraine. Is still dizzy and struggles with the tinnitus. We are going after this intensely and he has had moments of no dizziness. This is very hopeful. He has become quite the magician and has some amazing card tricks up his sleeve.

Kristen: is chronically fatigued. Her pituitary was hit hard so we have been working on this. Her peripheral neuropathy is still an issue. She may try a few classes at the local high school. She loves photography--especially the Arizona sunsets.

Ryan: has decided against the conservatory in New York for financial and logistical reasons. The focus of his future has changed as well. He has responded well to the de-tox and is the healthiest I have seen him in years. He is meticulous about his diet. No gluten, sugar, etc. His digestive system was hit hard by the mold. Some exciting opportunities have already come his way.

Shannon: is working hard at her recovery. Her dedication is an inspiration. She loves the hiking here and is looking into possible classes in the fall.

Megan: is struggling. Her road to recovery will be long due to the complications from her Africa and Peru trips. Exposure to toxic mold becomes a breeding ground for parasites and other microbes. She has done some amazing video projects and continues to persevere.

Erin has decided to join us for a few months. Her rashes continue (which simply means there are more mycotoxins to come out) and her fatigue level is abnormally high, another common occurrence after a mold exposure. She is going to miss Rosie’s terribly. And I know many of you will miss her.

Chris is doing well. Dogwood won an award recently and he's excited about his new book, June Bug. He is the most chemically sensitive of us all. I am so grateful he can work from home in a "known" environment. He has been an amazing rock of support for me. He has gotten me up off the ground many days by his wisdom and humor. I don't know what I would do without him.

(I resisted the urge to embellish the above.)

As for me, I lost my mother unexpect-
edly on May 21st. She died of a brain hemorrhage following a severe coughing fit. My brother, my dad, and I were all with her and I am grateful I had the opportunity to say goodbye. She was a tremendous support to me these last two years and I miss her. A lot.

My health has been more of an issue in this last month as I have taken the much needed steps to recover. I am focusing on clearing my liver of mycotoxins, something my blood testing showed was a serious issue, and it has created a "die-off" which means the microbes are killed and then create sickness. My memory remains an issue and I miss it! So do my kids!

(For some reason, she is still able to remember why we fought during Christmas, 1984, etc.)

I continue my blog and have met other mothers just like me. I have secured the website "Moms Against Mold" and will continue my passion to get the word out.

We have been living in a 1700 square foot home in the middle of nowhere. Eight of us sleep on air mattresses in one room. There are two bathrooms. Our next home is about 3500 square feet and the good news is, we gain 1 more bathroom! It is on an acre and backs up to a sandy area known as a “wash” where rainwater rushes through after a monsoon. It stays sandy most of the year. We walked through the home with the builder last week. He agreed to rent to us even after hearing our story. I have a good gut feeling about the home as it is all electric and lots of tile and it has never been lived in. Still, a move brings back lots of fear and trauma. We have to continue to move foward, however, and this is a good next step.

Our home in Colorado remains just as we left it. A friend is cutting the grass for us. The home is still contaminated. We have a forbearance on our mortgage which enables us to pay the rent here. If anyone would like either of our trampolines let me know! We are pursuing legal action as this is what keeps the forbearance and keeps us from foreclosure.

I don't know what our future holds. I do know that my faith is not in the legal system or the medical world. It's definitely not in myself. I do believe that our story is bigger than our present circumstances and all of you have played an important role in it. You came alongside of us in critical ways in the days following our evacuation from our home. Thank you.

I conclude with this quote by Albert Einstein which has meant a lot to me.

"Strange is our situation here upon earth. Each of us comes for a short visit, not knowing why, yet sometimes seeming to a divine purpose. From the standpoint of daily life, however, there is one thing we do know: That we are here for the sake of others...for the countless unknown souls with whose fate we are connected by a bond of sympathy. Many times a day, I realize how much my outer and inner life is built upon the labors of people, both living and dead, and how earnestly I must exert myself in order to give in return as much as I have received.”