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.”

I took the kids to the park Sunday night and we played baseball and chased each other as dusk descended. The moon was bright behind us and it was over 90 with the sun down, but it felt like a respite from earlier in the day.

At 7:50 we stopped and looked north. I couldn’t see many stars and worried that the sun’s glow would thwart my plan. Plus there were big trees at the edge of the park.

Shannon ran for a picnic table and stood on it. “The mountains are too high,” she said. “They’re going to block it.”

“It’s supposed to be 26 degrees above the horizon,” I said, but I thought she might be right. That mountain range is lofty.

I ran into the trees where I could get a better look. I checked my watch at 7:58 and still could see nothing. The kids were barely visible behind me as the orange glow got softer.

Then I saw it. At least I thought I did. A silver speck moving from left to right a bit above the mountain range. “I see it!” I yelled.

The kids came running. “That’s it?”

“Where?” Brandon said.

The “speck” was the Space Shuttle orbiting the earth, along with the International Space Station, visible to the naked eye. It looked like an airplane moving fast in the sky.

“Are there people on it?” Brandon said.

“Yes, astronauts are up there right now.”

My cell rang. “I think we see it,” Kaitlyn said. They were returning from Phoenix. “Is it on our left and moving?”

“That’s it,” I said.

We watched it for about four minutes until it disappeared. We all clapped and everyone thought it was a great moment. We actually saw the Space Shuttle in flight.

Nobody else at the park knew what we were doing. They were going about their business of playing or walking the dog or rollerblading. And the only reason we knew about it was that our friends had told us that on Saturday and Sunday nights we could see the Shuttle in the sky. Saturday it was too cloudy but on Sunday we got our chance.

It’s that way in life. Some special things pass you by without you ever realizing it. Unless someone takes the time to tell you and you actually look up.

If you want to see the Space Shuttle, check out the times in your area by clicking HERE.

When I was in Denver, I had an experience I’ll never forget. A man I had never met heard our story of loss and illness and the road we’ve been on to recovery, and he was so touched by all we’d been through that he just shook his head and said, “Oh Chris…” It felt like he took several pounds from me. I gave him Andrea’s number and he called her the next day and related some of the things he told me.

“God is honoring you by giving you this trial,” he said.

It doesn’t feel like an honor, but I know he is right. His words rang true.

When we parted, he put his hand on my shoulder and prayed. With passion he asked God to give us a larger house for our needs. He asked God to give us laughter. Those are the two things I remember most.

Yesterday, we signed a lease on a house that has never been lived in. We met the builder on the day we walked through it. If he sold it now, he would lose about 50K. We’re going to rent it for a year while the court proceedings continue for our house in Colorado.

This new home is gorgeous and sits on about an acre of land. Four bedrooms—but as we count bedrooms, it has six. All electric. No pesticides have been sprayed outside on the landscaping. There is carpet in the home, but since it’s never been lived in, we’re not as concerned about reacting to it. Our lease is up at the present house on August 16, so this is perfect timing.

Last night we had some friends over. They played games with us. Scattergories and “Signs,” an acting game Ryan taught us. We laughed a lot. We laughed about eight of us sleeping in one bedroom. We laughed about the silly answers Andrea gave during the game. We laughed about how competitive men are and how agonizingly smart women are. The point is, we laughed.

For everything there is a season. A time to laugh and a time to cry. A time to pray and a time to wait. A time to move and a time to cancel the electricity. A time to escape to the desert and a time to give thanks. We are grateful for those who have put their hands on our shoulders and prayed, near and from a distance.

We’re not there yet. We have not arrived. But we’re still putting one foot in front of the other. We’re still trying. And sometimes amidst the tears and heartache, there is laughter.

I don’t have words for what I'm about to tell you. I make my living with words. Crafting words. Speaking words. But they seem so inadequate today.

I opened an envelope filled with gifts from people who had heard Andrea and me on Midday Connection in June. Then I opened a box. When Anita and Melinda asked us to tell our story, we had no idea they would also ask listeners to get involved. Just before we went on the air they mentioned it in passing. "And we want to give listeners a chance to get involved, if that's okay."

We received more than 200 gift cards and several people wrote us checks to help cover our medical and living expenses. It's amazing. Several times as I was opening the box, I had to close it and put it away. It was just too much. To see the love and generosity of people we don't even know was like getting a glimpse of God's love in red and blue envelopes.

I've learned a valuable lesson over the past few months. Don't refuse a gift from the heart. Become a good receiver. It's not my natural bent. Self sufficiency is more my style. Pride. I can do it myself, thank you. But I've learned the hard way that I can't do it myself. And that this is a season when we need to receive and be grateful for friends.

I've been in the dumps about our health insurance company that refuses to pay for our treatment, medicine, tests, pills, clay, etc. (I resisted the urge to put their logo here.) I want to write a song like those guys who sang "United Breaks Guitars." But the more I consider this, I realize that the gifts we’ve generously been given by friends and family have more than covered those bills. God takes better care of us than any insurance company ever will. And he works through his people.

It is a wonderful and humbling thing to simply receive. It is a measure of God's grace to us. We cannot repay these gifts, but some day we hope to pay forward. And I want to thank every person who took the time and effort to give. Words are not enough. But the best ones are simple.

Thank you.

Andrea looked at me the other day and said, "I can't wait until we get to do something like this for someone else."

"Yeah," I said. I can almost imagine the feeling. It's probably what God feels like all the time.