The Sacred Black Hills

Our first camping trip to the Black Hills of South Dakota was nothing short of epic, full of wonders great and small.  One day we passed through a thunderstorm that pounded the land furiously with hail stones the size of golf balls-- the largest any of us had ever seen.  Even half melted this stone was an inch and a half in diameter.  There seemed to be a metaphor in this simple white ball, which had been thrown about so violently high above in the great black storm clouds, falling thousands of feet to land in the mud, and then recognized as a thing of great beauty and passed reverently from hand to warm hand.  It was easy to see why the Native Americans have always held these lands to be sacred.

We're abounding in good news and sweet blessings today! We just returned home from a week of camping in the Black Hills of South Dakota, our first ever camping trip with Gideon and Audrey. It was all planned by Justin's sister Carmen, whose birthday it also just happens to be today, and her husband Jared, who together took care of nearly every detail so that our only job was to tag along and see incredible things with them, their three children, and Justin's parents! Thank you Jared and Carmen, Diana and Michael, and Lynn for your hard work and generosity making those magical experiences possible! We and the kids will remember this forever. My feelings about this trip can be summed up in this quote by Johnson Holy Rock, a Lakota tribe Elder;

"If a man was starving, he was poor in spirit and in body, he went into the Black Hills. The next spring he would come out, his life and body would be renewed. So, to our grandfathers, the Black Hills was the center of life, and those areas all around it were considered sacred, and were kept in the light of reverence." To me that rings true of our family's experience this week.

 

In the past seven days I have slept in a place where the precious minerals are so abundant that the ground was littered with chunks of beautiful quartz, white agate and mica and even the dirt sparkles, in the stillness of the early morning I have listened to thunder rolling deep from one end of the wide sky to the other, I have stood in a crowd of people from all over the world honoring US Veterans and singing the National Anthem at the base of Mt Rushmore all lit up by night,

 

I have held a hail stone in the palm of my hand that was an inch and a half in diameter, watched the sunset from a boat on a serene mountain lake, shined our flashlight into a secret cave behind a waterfall, was spontaneously given 15 freshly caught trout for our dinner, pulled a handcart at the Martin's Cove memorial and wept for the lives lost in that historic place, driven down a curving mountain road lined with side streets with names like "Ghost Canyon" "Smuggler Lane" or "Grizzly Gulch" only to come to an intersection of "Gideon's" and "Playhouse",

 and I have watched Audrey wolf down handful after handful of foods she has never been able to swallow before in large pieces-- burritos, sausage and eggs, potatoes, watermelon, strawberries. I've been afraid to jinx it by saying this out loud, but she seems to have turned a major corner and must be staying much more open in her esophagus recently. I have had the opportunity this week to feel things on a deeper level with fresh perspective, to examine our life, our family, and myself from numerous angles, to feel or observe nearly every human emotion come out of the process as though someone were shaking out a blanket after a long winter, and to re evaluate things and come out with a fresh and renewed energy and hope. Thank you, especially to Carmen, for making all of that possible, and for your kind and patient understanding that we could never have done it if you had not sorted out all of the details from campsites to food to cooking and equipment and sleeping arrangements for everyone, and for putting up with the craziness of having seven extra people along and all the crazy that went with it. None of us knew for sure until practically the day of departure if it was actually going to be possible, and I'm so glad it worked out in the end that we were all actually able to go! Happy birthday sweet friend and sister, Audrey is blessed to have you for her auntie!

Audrey and her sweet Aunt Carmen

Audrey gave Justin a hand at the wheel as we pulled into our spot at the campground

Audrey and Gideon pulling a handcart at Martin's Cove Handcart Pioneers memorial.

 

Playing at Dinosaur Park in Custer, SD. I fondly remember visiting here as a little girl

Audrey is tickling the belly of the dinosaur!

Some dinosaurs are not so ticklish.

Visiting the friendly burros on the Wilderness Loop highway.

The kids loved visiting Mount Rushmore for the first time!

Taking a break for a delicious pie from "the Purple Pie Place"!

We rented a paddle boat and played all afternoon on the gorgeous Sylvan Lake in the midst of the famous Needles wilderness area.

 

The two babies were troopers through the LONG hours in the car!

We will remember this trip with Justin's family for a lifetime.

Bacon, Eggs, and a Fullness of Joy

I have so much on my mind today, and so many irons in the fire, but I've just learned that some of our friends are having a very rough time and really needed to hear some good news, so here are some beautiful things I just have to tell.  I was just reminded that four years ago today my sweet best friend Julie passed away from brain cancer. While yes that must sound sad at first, you would see what I mean how beautiful a gift it is to be reminded of her today, if I could just begin to explain what a great gift her friendship has been in my life, what a living wonderful sister-like friend she is to me. I have felt her and know she lives on, and was recently reminded of something she said to me that seemed odd at the time but has since come to mean so much to me. Once when she was beginning to be very ill she had a sudden moment of clarity and looked at me with her intense blue eyes and said, "I think you're already a superstar." She knew of my dreams to study dance and music, to write great books that would be remembered, to make some sort of great mark on the world and how ordinary, inadequate, even useless I sometimes felt, so that moment touched me deeply. During that summer I spent every spare minute by her side doing everything I could think to do to help her, and since then I have had two back to back pregnancies, the first which hemorrhaged in the first trimester and nearly miscarried but managed to cling to life, carry to term and blossom into my adorable joy-filled Gideon. The second pregnancy though easy at first, half killed me in the second half with the unrelenting pressure of three times the amniotic fluid I should have carried, then sweet Audrey had her own huge battle to fight these past two years with countless lifesaving medical interventions in her struggle to be physically capable of eating, but I have to tell you, by golly, this morning SHE ATE BACON AND EGGS, and smiled and laughed and filled us all with joy! I have SO many blessings to thank heaven for. Everyone reading this, thank you, you all have been such a support, absolutely vital to our survival through this past four years, God bless you and thank you!!!! Four years ago, my world was relatively small, and now our friends and family and experiences stretch across the Earth. Thank you, family, friends, cheerleaders of all kinds with your prayers both loud and silent, for your love and friendship and kindness. I feel deeply blessed to know you. Keep up the good fight.

Nerf Dart Epiphany

Yesterday I had an honest to goodness real old-fashioned summer day. No doctor appointments or other stressful errands that could not wait, procrastinated everything I could and just unwound. Spent most of the morning snuggling kids while watching Doctor Who together. At one point Audrey proudly brought me this contraption she had put together all by herself without help. I am actually pretty impressed! The blocks aren't locked together but she made a happy face, a two part hat and of course, gave it a great set of wheels. It never ceases to amaze me to watch babies grow.

  

Mid-day I set up the sewing machine in the backyard and got pretty far making the replacement canopy for the outdoor swing while the kids played in the sun, before I ran out of heavy duty thread. Baby was napping so I took the three who were begging to go and ran to the fabric store. Survived with my sanity and stopped on the way home to buy milk at the Creamery, and had to buy a box of their famous brownies too. Some of us chose the Creamery's signature Mint Chocolate brownie and some the July special, Salted Caramel, which was topped with caramel and chunks of stick pretzels. Not gonna lie, my own brownie did not quite make it home. Fixed a quick meal, nearly finished the canopy while a delicious rainstorm rolled in, and then it was time to leave for this month's women's meeting at the church, where we had a guest teacher lead us in a yoga class, followed by Greek yogurt smoothies. It was great to just ignore stuff for most of the day, though poor Justin has been working crazy long hours and the stress has been getting to us both, on top of many other things, but this morning I was doing some work and starting to feel that familiar crippling weight of stress again when suddenly, I noticed a nerf dart stuck to the wall high on the wall near the ceiling.  I have no idea how long it's been there. It was so random and unexpected that I found myself laughing and laughing and just knew everything is going to work out.

Building More Than a Bear

JJ decided to use some the birthday money he has carefully saved since March, on his very first Build a Bear Workshop animal. We actually had never done it before and he loved it.

The lady asked him to hug the little heart they were going to put inside the doggy, and make a wish on it before they put it inside. His wish was that Audrey would get better.

 

Of all my kids I worry about this one the most.  He is always affectionate and tender with Audrey and I, but he has been unusually moody and withdrawn recently and we are seeking answers for how best to help him find balance. I'm so thankful for this time now to be home with the other children in order to attend to these things.  Please keep him in your prayers.  We have really been trying to turn up the love and attention, and patience, for each of them but particularly him. This trip to the mall was with just him, me and Gideon, and although he was moody at first once we got some lunch he did much better. He doesn't eat much, has also become a pretty picky eater, and I sometimes think he gets extra grumpy partly just because he's hungry. He was so cute about the BBW though... we wandered in the store and he said to me, "Mom I have to say I'm very impressed with this place. I think we should come here more often." If it brings out that beautiful smile again more often, I agree 100%

Requited love, at its best.

Treatment History

I had a bit of silly fun at Audrey's ortho appt on Monday while filling out dry forms. She needs a cast for two more weeks, but this doctor said she can go swimming in the new waterproof one, so it feels like summer is finally here now!

Dr Manfredi's Report

At her dilation in Boston, Dr Manfredi said he was very pleased; she had stayed open to 9 mm after about a month since her last dilation (when she'd been dilated to 12mm). He did not do any cutting this time, and dilated her to 15mm, our "ultimate" dream diameter, for only the second time ever. He also injected some steroids into the stricture. He said to have her done in Utah in four to six weeks, and he will see her a few weeks after that. He is also considering reducing her medication dose, so tons of good news this time. Unfortunately she also came down with a cold that day, something that seemed to make her throat hurt more than usual and caused extra reflux. She has been refusing food and drink by mouth almost all weekend, including today, but tonight she ate some pizza during a visit with cousins. To my terror she stuffed an entire piece of pepperoni in her mouth and quickly swallowed it after barely chewing, and THEN to my shock it went all the way down and stayed there.  I shook my head when Dr Manfredi first told me the good news, and said "This is a brave new world."  It really feels like a fantasy and I've been afraid to jinx it or get too attached to things being this way, but for the moment (except for her sore throat from her cold) she seems to be wide open and capable of near normal eating.  Happy Independence Day, indeed!

I am planting flowers and sprucing up the patio for our exciting visitors for the Fourth of July celebration!!! Feels like Christmas to me! My mom and dad, plus Grandpa C AND Grandma S are all coming from Oregon to play with us for the holiday.  And I am so excited to do our family traditions together with them! Homemade ice cream, corn on the cob, watermelon, flag cake, barbeque, lawn darts, fireworks, hot air balloons, parade....  Audrey said it best in her little voice as she opened her eyes yesterday morning straight out of bed, "Want see grammas!!"