utah

finally. i tried to blog last week, but the wifi at the flying j was wonky, and i went back to the canyon until tonight.

the scoop with the phone (i have a palm centro) is that i can blog from it, but the window for typing at blogspot is so tiny that it is difficult to reread my entry and heaven forbid i should miss a word or a punctuation, and i can't download pics, so i am going to try to blog from the laptop. i need to learn how to type while i'm offline and then when i reach wifi, i can upload my posts.

anyhow, another big catch-up here. my big sprint across the midwest paused for a stop in lincoln nebraska (june 16th) to visit adam and ann and their daughters sophie and iris. what a cool family! i was welcomed with hugs, and felt instantly like family. it was good to take a breath and regroup. we had dinner that night with their friends sean and amy....how great to talk to someone besides mutt!....and i began to get an idea of the great things that are being done in places like lincoln.....by people like ann and adam, who are making a difference every day. after dinner, they took a tour of the van, with an impromptu spindle spinning demonstration. adam taped it and stuck it on youtube, which was cool. my youtube debut! there will be a separate blog about my stay in lincoln, with more about adam and ann and the girls (you too, shuma) and their tribal business "meadowlark". but thank-you, guys, for the sanctuary, the food and friendship, the clean clothes and community, and the chance to hang out with some great kids..... i can't wait to see you at Ten Thousand Ways in oregon!

after a 2 day stay in lincoln, i headed west again, and made cheyenne, wyoming just before sunset. i spent two nights there, giddy with the cooler temps and the need to wear my mukluks again! i was having a problem with my cel phone....it kept ringing randomly throughout the day and night for no reason, and was seriously affecting my sleep. there is only one sprint store in wyoming, and they were unable to repair it. my choice was to go south to denver, or west to salt lake city to find a repair center......well, since my friend heidi was in slc, that was an easy choice. the drive across wyoming was so beautiful....i love the mountains so much....we made it to salt lake at 9 pm that night, and promptly got lost. yikes, are there alot of lanes in their highways! i ended up in a section of town with alot of pawnshops and LOTS of billboards for bailbondsmen. a fight broke out minutes after i pulled into a 7-11, and my first inclination was to get out and box some ears, i was so hysterical to find a flying j. not that that would have gotten me anywhere but in jail, or dead, but i woulda felt better anyhow. my friend laren came to my rescue with downloaded google maps and calm reassurance that i would eventually find my flying j, and talked me safely to my destination.

on sunday, heidi and scott rescued me from the big city, and took me to a canyon outside of the city, and near to where she works. we set up a camp near a creek formed by snowmelt from the mountains, underneath some cottonwoods. i thought i was in heaven, and mutt was certain he was :-) we have stayed there up til now, coming out to the mouth of the canyon to get cellphone reception, and into town for provisions, meetings and hot showers at the J. we had one excursion to petsmart which restored mutt's faith in mankind, and to REI, where we met another salt lake city vandweller named steve. we yakked it up and drooled over the cool gear and made plans to get together again before i leave utah.

living on the road is falling into a comforting non-routine.....we move more slowly, and more mindfully through our days....less worried about our next meal, my next shower, or where we will sleep next. things fall together more effortlessly, and wherever we are ends up being just right. i am more at peace than i have been for a long time......

more later, about people we have met, places we have visited here, and a persistant coyote at our camp.....

testing

this is just a test entry to see if I can blog from my sprint phone. if you are reading this, stand up and shout "woo-hoo"!

finally....on the road

well, i finally did it. i am on my road trip! tonight i am in nebraska, settled in at a truck stop to use the wifi and to get a few hours sleep. but i need to backtrack to catch you all up on my "great escape"....

i left on june 2nd, and my first stop was in southern pa to visit fellow vandweller john nomads and his wife rose and their little boy bobby. it was a great way to start the trip....i was welcomed as family, treated to chinese for dinner, and got to rub john's head for good luck.....it must have worked, because i haven't broken down yet :-) we watched the movie/documentary "rubber tramps" which is a must see, especially for all you vandwellers out there. mutt really enjoyed his new buddy bobby, who was kind enough to "dogsit" mutt for me, and charmed his way right into my heart. thank-you so much bobby, john and rose.....you made my first day very special!

at the chinese restaurant that night, my fortune cookie said "your dearest dream is coming true". how cool is that? so true.....that little slip of paper is in my wallet, at the bottom of my picture of olivia, who is my soon-to-be grandaughter and already the owner of my heart. she is my other dearest dream come true :-)

the next day i headed into lancaster county to visit my sister ann and to have dinner with her and her friend lexi. lexi has been a reader of my blog and a crocheter of my yarn, and i was glad to finally meet her in person. she is as sweet and as goodhearted as my sister had told me. my sister's not bad either ;-) ....love you both!!!

i headed north the next day and spent a few days with a friend in bradford county before heading back south, ultimately hitting rt 80 on june 10th and pointing the rondyvan west.

i was like a woman pursued. i couldn't get out of pa. fast enough. i spent my first night in a toll plaza in ohio, then discovered upon awakening that i couldn't get far enough from the east coast fast enough. i wanted to be too far away to be found, too far away to go back, too far away to realize how crazy it was to hit the road with a van and a dog and a tank of gas and some food and a dream too big to explain to anyone.....including myself. i didn't have a plan, but i didn't have cancer either, or one stinkin' medical appointment until october. hallelujah!

the next night i spent near gary indiana, continuing on to davenport iowa the next day.

i shoulda listened to the news....

iowa and surrounding areas were experiencing record storms and flooding, which closed down rt. 80. stubbornly refusing to detour, i stayed at the flying j for 3 nights. it was a pleasant three days....i had a visit from fellow vandweller john and his 3 cats, and spent time knitting and sleeping and reading. i woke up the second morning and cried because not one doctor or radiologist could find me if they wanted to. i felt such freedom and relief and gratitude, and very much in the now.

by sunday it was obvious it would be days until 80 opened again, and more roads had closed, so i headed north to dubuque to detour around to des moines, and on into nebraska. so here i am just outside of omaha. tomorrow i will continue on to lincoln to visit my friend adam, and his family. i have never met adam in person, but know him well through the ishmael/ daniel quinn related websites of ishcon and ishthink. i am looking forward to finally meeting face to face....

so that is an update via my mac laptop through wifi at the flying j. tomorrow, i will try posting using my sprint palm, and try a picture, too.....

catch ya then.....

i'm back!

well, it's been one month since i last blogged. and a busy, crazy one at that.

i am pretty well recovered from surgery, and owe a great deal to surviving the post-op period to my dear friend tara. i will fill you in later about her awesomeness....and a few of our choicer adventures....

i also had testing done last friday that determined that i am cancer free! i will now have a much needed reprieve from the medical merry-go-round. i am planning to go on the road, and hope to have adventures worth sharing.... well, worthy or not, you're gonna hear them:-)

blogger won't let me download pics, so i will try again tomorrow, and give you a real post, with van pics!

seven things

okay, so tara has tagged me to blog about seven things you don't want (or need) to know about me. check it out http://www.hobostripper.com/

there are a million things you don't want to know about me, but here are a sampling....

1) i hate roadkill. i have such a revulsion for it that i will go to great lengths to avoid it. and, staying true to form, i have been known to scrape it off the highway in order to conquer my fear.

(are ya still with me???)

2) i had to give up doing indian quillwork after finding out that many of the quills i used were harvested from roadkill porkies. i used my teeth to flatten the quills :-(

3) i believe the railroad bridge over lake ponchartrain is an act of evil. don't go there.

4) i don't like holidays, particularly Hallmark holidays. my kids were raised to believe they would be disinherited if they ever sent me a mothers day card. the handmade ones when they were babies were okay :-)

5) my kids honor me randomly and love me fiercely all through the year. they are wonderful people, and i was smart to have them. even better, Hallmark CEO's around the globe struggle to make their mortgage payments every mothers day. HA!

6) i practice a sport i call "tagging" (not to be confused with blog tagging as noted above). when an employee of a business is helpful or particularly kind, i like to tell the manager of the business, followed up by a letter to the corporate office. i tagged a young girl in kmart once, who was extremely patient with me in the camera department. her name was rachel, and she was sweet and soft-spoken and infinitely patient. i talked to her manager before i left, and told him his corporate office would be hearing from me about what great customer service they had. when i returned a few days later to purchase the camera, rachel was working behind the customer service desk.....a position she had applied for, but was told she was too "shy" for. she thanked me profusely, but mostly because her parents were so proud of her that they extended her curfew an hour :-) another benefit to tagging, is that managers tend to remember you, and are extremely grateful for any feathers in their cap at the corporate level.....the good karma tends to come around full circle. try tagging someone you run across....it's really cool.

7) i am against dog tethering. i support a group called "Dog's Deserve Better" who works to pass legislation against round-the-clock outdoor tethering of dogs. "if you don't want them in your house, then you don't really want them". dogs are pack animals....make them part of your pack.


so, now for the first of my seven tags.....

1) johnny, whose blog is http://whiporwill.blogspot.com/


2)this one is an exercise in futility, but i will include it with a grain of optimism....
http://www.blogger.com/profile/08905110912726640948
.....michael, you need a blog!

3) okay, phoenix, it's your turn....
http://leoloss.blogspot.com/

little jimmer

most babies are practically born smiling. i think there is an important story behind a baby boy who never smiled, ever, in his short life. it is a sad story, to be sure, but one that needs telling.

little jimmer was my friend sally's foster baby. now, sally is a story in her own right, to be told another time. she was a foster parent through an agency called "Best Nest" based in philly, who placed medically fragile and terminally ill kids. we met at a foster parent training session, and became fast friends. sally specialized in the toughest cases, the heartbreakers.

sally and i became each others "respite care" parents. since our kids were high skill levels of care, it was hard to find a place to put them if we needed a weekend off. so we sometimes traded babies. little jimmer was one of them.

jim was born with short gut syndrome, meaning he didn't have enough bowel to process nutrients necessary to survive. he was on a complicated mix of intravenous and tube feedings, but was growing and staying healthy. he was one of sally's babies that was expected to live a full life. when he got older, surgery would help him to be able to eat normally. he just had to get older. that was where we came in.

now, the thing about jimmer was that he never smiled. not once in his entire life, and it was not for lack of sally's trying. she loved him to pieces, as did everyone of us who ever met him. this little guy just looked out on a life that he could only guess at, from a place where none of us had ever been. there has to be a special loneliness in one of those places. what a terrible burden for little hearts to bear alone.

jimmer came to stay with us for a few days when he was 17 months old. his big eyes in a somber face watched every move you made, every kiss you gave, every procedure you performed. i can't even remember him making a noise, no matter what you did to him. he was like a silent referee with no whistle to signal "time out" when the game got too rough. what a fragile, tough, broken baby he was. i adored him.

life in our house went into hyperdrive when jimmer came, with all of his equipment in tow. special pharmacy arrangements were made to obtain the hyperalimentation (intravenous) feedings. we had to do some of the final mixing at home, injecting the unstable ingredients, using sterile technique, in the last minutes before infusion began.  the infusion ran overnight, for 8 hours, and the pumps needed frequent monitoring. the IV was run through a Broviac catheter which was implanted through his chest wall into his heart. unlike most implant devices, the Broviac was a tube that stuck out several inches from the chest wall, just begging to be tugged by a little fist. we had a big obsession with keeping that intact, and the dressings clean, to prevent infection.

jim also got tube feedings of special formula during the night. unlike most of our kids, jim's feeding tube was not implanted in his abdominal wall. a nasogastric tube, it had to be inserted through his nose and down into his stomach. placement was important, because if you ended up in a lung, you could literally drown them. it was a two person operation, and kinda scarey, but usually necessary at least once a day, as it was hard to anchor in place, and even harder to keep little hands off of it. but we did consider the yanking of an NG tube highly preferrable to the yanking of a Broviac, and accepted it as a small price to pay in the long run.

little jimmer's stay this time was uneventful (although we probably had a different definition of "uneventful" in our house, as compared to most) and we did the intricate "changing of the guard" after several days, and got him safely home to his mama.

or so we thought.

several days later we got a call from the children's hospital where all our babies get treated. little jimmer was in pediatric intensive care, and not expected to live. sally was inconsolable, powerless to save the one baby she had expected to actually grow up. i was sick to the very bottom of my heart, when i heard the reason why. jimmer was septic, and his organs were shutting down from a fulminating blood infection, most likely contracted by a break in sterile technique by some caregiver in his very recent past.

it is hard to breathe when judgement is coming down all around you, and you know you cannot go back to find the error and make it right. even worse is the uncertainty of not knowing just who, in what second, allowed the fatal germ to break through the mighty fortresses we try to build around these kids. but the walls were breached, and jimmer died later that night, a tiny warrior who had yet to find a reason to smile. a part of me died with him.

no one, ever, points the finger at any foster parent who loses a kid. we all know going into this that if we measure success by survival, we are failures before we start. we know that we are doing an impossible job, under impossible circumstances. being imperfect humans, mistakes will happen, and we can only do the best we can for these kids, and love them hard while we do.

the funeral was rough, as all of the baby's funerals are. it was made tougher by knowing we lost one that could have lived, long before we won that first smile. i wrote a song for him, and when it was read at the funeral, alot of parents wept, because it was a poem for all of our little angels, gone too soon.

i never cried for jim, until this morning, when i knew i had to get this story out of my heart and into the healing light of day. i know it is selfishness that drives alot of my writing, as there is little for you to get out of what i have to say, but it feels good to get these stories out, leaving a little vaccuum behind, where i hope forgiveness and love can rush in to take their place.