Wish I may Wish I might

The most heartbreaking thing one can ask of a mother is to have her watch her child suffer. I have done just that for over a decade. I watch and can do little. I am caretaker not biologist nor immunologist ..virologist ..researcher..or doctor..though I have met with and discussed in depth with these "specialists" what they think is causing this disease in over 3 million people in the US alone. They are guessing..they don't know. Do no harm means do nothing. Mothers can not do nothing.
So we are 6 weeks into the desert air. Patient is a bit more active..we are outside most of the day..his phone app tells him he has taken more steps on some days here than at home. Stomach ( gut biome) is working well..with fairly restricted diet. Sleep is mostly uninterrupted. Half day excursions to hike or shop the farmers market are manageable. What we look for is how Ty feels the next day.In years past energy spent on one day..gets taken away 10 fold in a day or two..( yes they are studying that as well). There appears a little less loss here...but still there. He has a schedule of detox treatments he performs on a daily basis..and added a "good"dust mask to wear in public places that feel "problematic" to him . Molds and toxins we breath everyday can cause sudden onset of whole body inflammation and slow down cognitive function..almost immediately for a great number of ME/CFS/SEID  affected patients (the name is a mouthful and part of the problem..not recognized by the medical profession). Systemic Exertion Intolerance Disease.We wish it was called " can't move, can't think, and find out fucking why please" disease.
The most notable improvements seem to occur at higher elevations. We know that higher means less oxygen content..there are theories about that as well..pathogens may be making excess oxygen in the tissue causing too much oxygen to accumulate in the body...going where there is already less..may balance things a bit..? .."give us a million bucks" researchers say "and we can study that!"
I've seen a few half smiles and heard some light-hearted whistling..small things.
A new camera to document the desert and her delights has also added some physical and mental exercise ..and a reason to wait for the next sunset. For me..writing helps..thanks for reading.
Here's some sculpture I found in the desert..and

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First Things First

     We settle into our little abode for a 2 month stay. I sweep, wash and inspect every cupboard and shelf. Critters live here in the desert. I don't want any surprises. We go to town, get provisions, set up mail delivery, obtain a library card and find the post office, hardware store and a coffee shop with internet. I make mental notes of seeing a hospital, police and laundromat if I need them. 
The basics done..I let folks who need to know, we are safe..and we will not be missing the colder weather back in North Carolina or Maine. We are about 10 miles from town..but the big open desert with mountains on three sides make our little spot of humanity seem very isolated indeed...an oasis of sorts. The town was named for a group of palms that indicated a water source to the native Americans and miners that crossed the mountains. In the 40's land here was parceled out for cheap if you could build a structure and live there for 3 years..abandoned cabins dot the horizon. 
I too seek an oasis...where a hint of health might be found for one young man.
thanks for reading..next time ..well...how is the lad doing you might ask?  join the blog to get the next news..there"ll be critters!!

into the sand

With motels being so problematic we decide to drive on to get to our little shed in the sand one day early. I text the owner..someone will meet us and guide us to the house..as it will be "pitch black" and some of the roads are "impassable"..oh jeez..what have I gotten us into. We meet our guide at the local convenience store I grab some eggs, milk and gallons of water..and we are led out into the night. The surrounding area is dotted with a twinkle here and there, signs of life. A few more miles of dirt roads and so many turns I will never find my way back, and a small structure appears out of the dust.
The motion detection lights click on and there she is..just like her pictures (they aren't always). A modest 1950's structure designed with flat roof, one bedroom ,a working kitchen and thank the lord, hot water in the shower. OK ..relax..the fight or flight mechanism inside my motherhood slowly starts to subside. Here we will live for 2 months. In the morning we can "see" where we really are.

Thanks for reading ..you can join to get notifications of the ongoing saga if interested. Next time .."where are we?"