Good Old Update

Time could be perceived with much distortion, or is it the motions of this body-mine? I write in my journal, float along for a few days, muster the focus to pick up the pen again and... oh my, ten days have gone by? Really? I have to look at a time map to figure out where I've been. I've always been rather floaty, and calendars help me through the more vaporous times to maintain a solid narrative. If I get too lost, or get to despairing from the end of a magical tether tying me to reality, I can always be reminded of the physical realm things that have come to pass- 

• finally finished unloading the trailer from Buffalo Country- procrastination is like a carton of eggs in a forgotten cooler.
• Alex continues to steadily bust out braintan and barktan deerhides
• I cut out the paper and leather for seven new journals, bound one
• Pulled the first pack saddle into the house for yearly deep cleaning/oiling
• Spent way too much time indoors, reverting to my base-line indoor-kid ways, peering out at the brilliant grapple between winter and spring with detachment
• Occasionally (not daily, goals be damned) don the baby carrier and walk to town. No longer sore afterward. Still intimidated by the burly hill for the return walk but we're close.
• Alternating between periods of debilitation, mind off soaring in research, communication and blessed be Frank Herbert and the escape into Dune.... then I loo at the unpacked bozes from Montana, or the apothecary in deep disarray and say, I can do this, and judge the Togetherness Of My Shit by alphabetized tincture bottles and sharpened scissors.
• We drove to Omak for physical therapy, impatient with the getting-to-know-you pace and long car rides between these cities, but Rainan loves playing with these gentle women and their arsenal of novel toys. 
• Herbalist mama from Olympia sent us her son's outgrown Spio Suit , the hope with compression garments is that it provides extra support so Rainan can sit up straight again and ward off what many find to be the inevitable curvature of the spine and scoliosis in people with SMA
• The fundraiser that Alex's sister Rachel started has raised about a thousand dollars a day, let many people who might not otherwise have found out know what's going on with our family, and opened up communication with long lost friends and long silent family members. 
• We drove back to Seattle for our second appointment with Seattle Children's Hospital. The retiring head of neurology passed our care on to a brilliant and friendly woman who met us very presently, shared practical and theoretical musings around SMA, care and treatment, heard us out in our frustration around long-distance appointments (so far, so much driving, so little doing!). She explained that regardless of how many copies of the SMN2 gene this next genetic test reveals (the gene that compensates for some percentage of one's Survival Motor Neuron production) Rainan presents as Type 2, with clear lungs, a strong voice, and satisfactory ability to sit up and control his neck muscles. She assured us that folks with Type 2 tend to be relatively stable for longer periods of time then Type 1, and real noticeable changes in his body's abilities are likely to be measured over several years, not months. She siad he is an ideal candidate for Spinraza treatment should we choose to move forward with it. Though that choice is indeed a bold one to make, we would likely not meet tremendous obstacles should we proceed. This brought an immense sense of gratitude for the families who have paved the way to the sort of scenario we played out in the hospital, so very different from the ones families have experienced for decades with SMA. 
• Realized if we are going to be going over to Seattle often, we have to learn how to Do City better. We did alright, going for long wals and enjoying an exceptional meal at an Indian Restaurant, but we can make some bomb lemonade from any ol' feral lemon tree. 

I guess that all did happen. And the sweetness in between- wet snowflakes the size of your palm at dawn, young coyotes dancing on the edge of the meadow, old ones shot for no reason and brought to us to skin out, steamy wood-fired hot-tubs and the first Mountain Chickadee of the year.

I want to write about all of the healing that this situation is bringing up, the opportunities for everyone who swirls around with Rainan, but nap-time is just about finished and a moment cuddling with Papa Bear before the fire is worth a thousand words, so, until next time....