1 YEAR OLD!

Well almost, next Thursday on January 30th our little miracle boy will be one year old.

This last year and a half has felt like a decade but we are slogging through. The last blog entry was in July just before school started; kindergarten for Powell, Isabella in fourth grade and Earle's second semester of graduate school, the whirlwind increased in tempo.

 July 27 we celebrated Powell's 6th birthday. Beth made him a mombo cool Batman cookie, he played at Planet Kid with his buddies and received his first big boy bike!















In early August, Isabella journeyed to Yellowstone with Grandma and Grandpa Swope and cousin Jacqui so we took the boys to McCall.






 Gabriel enjoyed some sailing and sun bathing.

Beth took some cool photos of Powell.











I manipulated the contrast of one photo and transferred the image to a piece of pine.

I then created a woodblock and printed a woodcut in the style of Edvard Munch.

 And since life always segues so thematically perfect Beth took the kids on a Boise River float (Dad and G ran shuttle).

They stopped and checked out the cool 'stone boys' garden near BSU.

Isabella is obviously ready to get started on her first dig.

Over the summer I read 'Metamorphosis" by Franz Kafka so of course I found his likeliness spray painted on a garage in Boise.

I love Boise, as soon as you label and categorize it, it surprises the hell out of you. So here's the gauntlet; comment on this blog with your City's Kafka renditions and references. GO BOISE!!!

 Beth continued her aquatic theme taking the kids to the aquarium.

At Costco Powell discovered his most personally appropriate size of Nutella!

Oh yes, my big brother was right, they can bottle happiness and joy!

Isabella took photos of Gabriel's first lawn feel.

Back to school!

The Boise ballon festival is always fun, especially when a ballon lands across the street from your house.

And then gives every neighborhood kid a ride

The kids had a blast going for rides.
The entire neighborhood helped the balloon crew pack up and load the balloon. They just laid the balloon down in the intersection and shut down the street for about fifteen minutes and most all people stopped and watched. Have I mentioned what a cool City this place is?

I had worked in my studio a bit during our break between the two surgeries and came up with this piece working my way through everything I felt regarding Gabriel.

I created a 2d consisting of lots of visual language describing his condition and the emotional impact of the surgeries. Overlaid on top of this work is a chalked rendition of a derivative heart shaped death/life mask. The entire piece was slathered with acrylic caulking.

After the caulking had dried clear I spent countless hours wetting and hand rubbing the paper away. The result is the paint embedded in the caulking.

5 Months of Baby Bottles

He is now on only three medications; enalapril, furosemide (lasix) and baby aspirin.

Gabriel definitely influenced my work this year, in printmaking I created a tribute piece to our esteemed cardiologist Dooley Womack.

 

The press and the linoleum block inked and ready to print the first color.

The rest of my semester's work and other art is viewable at Earle's art blog. It was nice being back in school but the semester was pretty rough with all of the stressors and a rather adversarial committee, 'adversarial' might be not be the best term to use, maybe 'strained communication'? 
 I do need to credit them for irritating me enough to pushback against them which caused me to write the first half of novel. Hopefully I'll finish it up in the next few months.

Most of the fall was spent wrangling and reacting, three kids is..... whew! My Grandmother who raised nine children told us that everything after three was pretty much just more of the same (workload that is). I don't think we're going to try and personally vet her statement.

Powell's 1st day of school we rode bikes, he on his new black bike. At times I feel a little Mayberryish in Boise but then remember Opie did not have flames on his helmet!

Summer flew by; swinging, remodeling and at art in the park, Beth and Isabella flew to Florida to welcome Amelia Dixon into this world and we visited Dooley.


Fall we searched for Pumpkins with the Stansell's

and they're off... for the Washington Elementary annual jog-a-thon, they lap the school (4 blocks) as many times as they can on 20 minutes. Powell started off fast and made 5 or 6 laps, so at least a mile.

The kids carved their own pumpkins this year. Gabriel found it smashingly marvelous.

Go Broncos! (he can cheer for the family alma mater while at Stanford).

Dia de los muertos (the day of the dead) the Mexican holiday remembering those who are gone. Kind of a quirkily morbid memorial day, but fun. Center is Prodigal Cousin Amaya recently returned to Idaho!

The kids are thrilled to have Amaya back. Isabella really is I think she's just practicing her teenage face (or maybe really in character).








The nice thing about dia de los muertos for Beth and I was that we could actually get dressed up, paint our faces and show everyone what we've felt like for the last year. It was a fun evening parading through Boise with huge prints made from huge woodblocks and printed the previous week with a steamroller (sans steam).

We had a houseful of family when my Alaska cousin Erin Knoch and her husband Ed came to visit their daughter at NNU. My folks, sister, Grandma and Uncle Lindsay and Aunt Gini as well as Amaya and her parents Norma and John all stopped by.

Christmas season was kicked off by the holiday parade; shriners, fire trucks, Basque sheepherding wagons, Kelli Brown's dance class from Idaho Arts Charter school, rodeo queens, and a bemused baby boy.

Christmas season was our sicky season, three Sundays in a row saw a different child in the Dr's office. Powell started first with strep throat, we were terrified that Gabriel would come down with it and

voiced our concerns. Our normal pediatrician wasn't around so we saw the on call Doctor for the weekend who told us children under two couldn't get strep. That sounded weird but was reassuring so we took it and went home placated. The next Sunday Isabella came down with strep, a different on call Dr was in the office and told us to be careful with Gabriel so he didn't come down with it. I mentioned the under 2 bit and she said "Oh that's an urban legend. That just doesn't make sense." I agreed with her especially the bit about it not making sense but did mention she might want to get the group's Doctors together and go over which urban legends were acceptable to promote, just for consistency's sake. The third Sunday Gabriel came down with what must have been the flu stacked on top of an ear infection and possibly a sinus infection. It was miserable, he was inconsolable, his body wracked with pain and suffering a soaring fever. One night was so bad we deliberated taking him to the ER as his fever spiked occasionally up to a 103 degrees F. It would spike and ebb and we would decide not to go and it would spike and we would pack-up to take him to the ER and it would ebb. It was a long night.

Festival of trees.












Beth cooked her own gingerbread to build a gingerbread house. Two out of three of the kids were excited to decorate the tree.

Gabriel just wanted a cookie and left alone Pardner!

 Followed by the clean-up bath.

The kids Christmas concert was terrific. Powell was dressed quite handsomely, picking out every part of his ensemble himself. Isabella literally wore out one Santa hat, I delivered a new one  just prior to showtime. Powell was the only 'Rudolph' in character.

Isabella's Girl Scout Troop caroled at the Idaho Botanical Gardens, Powell threw snowballs with another little brother and we raced home to meet Grandparents and friends and drive to the Basque Center.

Gabriel was the primary beneficiary and honored guest of the Basque Charity Foundation nominated by some good soul who shall go nameless but that might have given birth to a Cousin of mine that previously worked at Stanford University. The Basque newsletter carried her full recommendation. The evening was incredible. A sheep is brought into the hall and auctioned off many, many times. People bid several hundred dollars, win the sheep, donate the sheep back and someone else bids and the cycle repeats over and over. In the end they raised almost twenty thousand dollars. My buddy, Rich watching the process commented, "This is awesome.  I don't want to be Italian anymore I want to be Basque. These people are wonderful." The foundation pays bills directly, luckily due to my insurance covering most of our bills we can't use all of the funds raised so they will be able to help some other folks out. We've submitted our last outstanding bills to the foundation and are so grateful for yet another layer of support; the entire Basque Community.

Eskerrik asko.

Thank-you.

Christmas Eve was spent at our house with family. Dad read the Christmas story and Gabriel loved the obstacle course. It's hard to imagine how fast this kid would be with a full heart, well maybe not- he'd be Powell.

Christmas Day the families joined 

myself and compadres Rich and Dana for dinner at the Firehouse. Since this is a somewhat family oriented blog I can't show the back side of Rich's outfit.

January 1 we spent the day with my Aunt Janie at her farm, checking out hours old lambs, eating good food and chatting with interesting people. No TV so I had to rely on periodic text updates from Amaya regarding the Rosebowl. Stanford didn't quite pull it off this year but hey two Rosebowls in two years is hard to complain about. And if they did have to lose, well Michigan State isn't too bad to lose to, a lot better than Michigan. I've come to love the State of Michigan after visiting it several years ago, but I have a good buddy from Ohio. A requisite component of Ohio State person friendship is hatred of or at least no support of anything related to the University of Michigan. Another kudos to the Stanford athletic system is the lack of any of their players pissing anywhere in public. Good show!

Gabriel's pulling himself to standing, crawling, climbing stairs and gnawing everything he can get in between his four teeth.

A year out and things are so much better, we realize how fortunate we are but still have tough days. We are so blessed to have this little guy in our life and are thankful daily. A wonderful side bar to all of this is realizing how large our support network is and how many wonderful friends we have. Beth and I have spoken several times about how impossible this would have been without all of you there to buoy us up along the way; the cards, phone calls, gifts, texts, messages, prayers and thoughts have been vital to our survival. I think both of us would have cracked without it and we came close multiple times with it. Beth has found additional support from two Mother's of cardiac kids internet support groups; sisters-by-heart and another private heart group of Mom's-a-venting, suffering and rejoicing group that you can only access if you have one of these beautiful little people. Both are wonderful groups that share information and give hope but temper that hope with the reality of what can occur. Just the other day a Mom posted her two year old had suffered heart failure and was now awaiting a heart transplant, his story was so similar to Gabriel's we couldn't believe he was doing poorly. The sites also validate how Mom feels. Stanford told Beth that mothers are actually post-partum for a year after delivery. We have heard that can be extended with difficulties like Gabriel, obstacles that do not allow Mom to confront what is occurring, basically PTSD. Transferred emotional trauma that cannot be processed the way it is supposed to be processed. She reads from multiple other Mothers that regardless of the age of their cardiac baby they grieve every day,  e-v-e-r-y-s-i-n-g-l-e-d-a-y. Every day they suffer, they blame themselves, they assign guilt, they cry, they chastise their womb, they hate themselves for feeling guilty about their child, their gift and realize they are horrible Mothers for feeling the way they do. I'm a male. The older I get the more I think we probably possess about 10% of the emotions and love that females do. Men can hit harder and smash more ferociously and at times not be assholes but our levels of parental compassion are often deficit. We do not create life, we do not carry life, we do not birth life. We do not have the bonds, which is why we so often walk away. We have no responsibility, we are devoid of real ethics but we are the ones who espouse ethics and morality the loudest, but I digress.

I cannot imagine how difficult it is to be the mother of a baby with half a heart.

I am so sorry for all the times I am not understanding, for the times I'm short, rude or a complete asshole.

Those times are often. 

Little boy and a big dog, our lab/chesapeake Choco.

Some days we look at him and think of him as a normal little boy, we don't dwell on his condition nor think of his impending third surgery. 

We just thnk of \hi as te normal little tyrant--= pre]s\sing additioonal\ keys on your comp\ut\r,crying when you stop him and just eng a generally obnoxious litle \ critter. 

So you stop and hold him and finish typing one handed.

Other days you change his diaper or bathe him or change his shirt or change his PJ's and you see the scars. The vertical 'zipper' on his sternum and all the little 'disks,' the puncture wounds caused by the drainage tubes and RA lines.  Those days you realize what a beautiful little gift he is, a gorgeous gift you don't deserve. Putting things in a comparative global and historical context you realize he doesn't deserve to be alive, the odds of him living are on par with winning the lottery. So we don't know what tomorrow or next week or a couple of years will bring; so we spoil the boy.

Tube Less

I am absolutely not advocating a disinterest in the band The Tubes nor their song She's a Beauty, both are classics and significant components of both my adolescence and perspective on shallow, sexist, fickleness in regard to feminine beauty (although I was fortunate enough to hook up with the smart hottie so I'm far from beyond reproach, I'm probably actually kind of reprehensible but I ended up with the hot chick so I can live with whatever label persons wish to assign). There is something specifically delicious and lovely about extended run on sentences, kind of raising a finger to the literary world and saying "I can say what I want and don't care what your rules are!" or maybe that's just the sub motto of...

The last week or so was a whirlwind; Beth's folks came up to visit and were right on time to check out the Lavender Festival (a week in which all the lavender farms in the area sell every conceivable lavender influenced product possible) and rode into the Boise foothills with Beth to enjoy a little altitude (Florida tops out around 200 feet). 

My Grandmother Pearl returned from a week at the Oregon Coast with my Aunt Julia and spent several days with my folks. 

It's awesome to observe my 92 year old Grandmother interacting with her two great Grandsons. I do realize how fortunate I am to have such a wonderful person in my life. After playing with the boys she and I discussed books and spoke of our recent readings and recommended varying texts to each other. Her reading list is varied, extensive and extremely vast... the best example I can think is this; last summer she attended an opening for a show I assisted as an assistant to the curator. The show featured the collection of David Leroy (former assistant Governor and attorney general and book collector and Lincoln scholar). So I assisted in researching a few books, rebuilding some cabinets and doing whatever the Curator and organizer Stephanie Bacon had in mind. The coolest part of the whole thing was Grandmother and the Chair of the BSU English Department conversing about literature on par and forgetting anyone else was in the room. That's the type of person to emulate, a self educated person who can converse in toto with a Phd on their subject of expertise. 

I watch her interact with the boys and hope Gabriel might be as smart as she is.   

 We broke away for a few hours and attended the zoo. The Sloth Bear rooted at the glass hoping to break through and share Powell's corn dog.

 I worked 5 out of the 7 days Beth's folks were here. On one of the last days we observed a pyrocumulus cloud from the Grimes Creek fire just on the other side of the foothills. My buddy and co-worker Rich advised us as to the name of the cloud, which none of the rest of us knew and were therefore suitably impressed. Walking into the grocery store a little old lady asked if we'd seen the pyrocumulus cloud and after returning to the Fire Station and turning on the news we heard the weatherman Rick Lantz refer to the large pyrocumulus cloud. Poor Rich.

 My second day at work my Dad showed up with a unique gift, a new (to us) minivan and proclaimed Beth a soccer Mom. This is what happens when Dad is a retired used car salesman (and decent human being). Powell cannot not press buttons and switches and dismantle things, Dad cannot not turn over cars and wheel and deal and buy cars and boats and campers and stuff. We've been humbled and grateful and fortunate for so much help in the past year but no one has given us a car. Beth cried (in the good way) when Dad dropped it off and gave her the keys. He can be gruff and short and abrupt and short and extremely loving but without the requisite language so he does what he does with everything else, he figures out a way to make it work and in this case that is expressing his love.

 If I made more pragmatic vehicular decisions maybe Dad wouldn't have to get involved but I think "cool" first and "running" second. This thing looks great in the driveway.... which is why Dad interacted.

Tubeless! After bragging in the last blog that we had taped him so well that he wasn't pulling the tube; the next day he pulled it twice. The day after though he took several 60 ml (2 oz.) bottles, the day after that a couple of 90ml (3 oz.) bottles, we decided on Thursday to see if he could take 120 ml (4 oz.) bottles with no tube feeds and all meds administered orally. He did! Friday morning we untaped the feeding tube on his cheek and let him pull it himself, he pulled it without fuss (if we would have done it, oh the horror). He is now on normal enfamil via bottle and loudly announcing when he wants chow. Thank you all for your prayers, thoughts and wishes in helping us get here! We are moving into a good place!

Side Effects

Still getting the blog caught up to date, this post should move things closer  to real time. Gabriel's stable and we're working at enduring but another Firefighter's Child is in dire need so I'm starting this off with a link to Ally Defur's caring bridge page. Her Mother is a Nampa Firefighter, the entire family was involved in a rollover accident last week and little Ally is fighting for her life. She could use your prayers and thoughts.

We arrived home in the early evening and met my folks at our house. The kids were overjoyed to see us and happy we were home and... Isabella decided to spend the night at Grandma and Grandpa's, we didn't take it personal as her cousin Jackie was spending the night with the Grandparents. Mom and Dad can't compete with cousin Jackie. Powell though hung out with us, so after bedding Gabriel we snuggled him up while watching a movie.

The next day I ran into Spiderman, coincidence we were both shopping for Charmin ultra soft? I think not!

That Saturday we took Gabriel on his first official camping trip to Anderson Ranch Reservoir. A few years ago my Dad decided he wanted to celebrate his birthday and Father's day at the reservoir and a family tradition was born. It has firmly become Isabella's favorite supplanting Christmas.

We always camp at the Pine Dock and are therefore treated to a spectacular view of the reservoir and surrounding terrain. 

Several years ago I was attending a dive rescue course in Calera, Alabama, a sleepy little town about an hour south of Birmingham. Half of the guys were cops so a considerable bit of banter bounced back and forth between the firemen and the cops. The first day we performed sub surface boat based search patterns at a local lake. The day progressed uneventfully (I did find an upturned old car in the mud and wrenched the old license plate off of it, by old I mean 1920's era.) The following day we conducted swift water diving in a river at the base of a dam. In fact the dam which created the "lake" we had dove the prior day.

 I mentioned this observance to one of the local cops "That's not a lake that's a reservoir." 

"Toematoe, tomato." he replied "Ya'll call it one thing we call it another."

"Oh yeah, semantics" I responded "Like what ya'll call relationships we in the West refer to as incest!" After a few tense seconds in which I second guessed the wisdom of verbalizing my response, laughter prevailed and we were one again. A group of divers focusing on a mission. 

Beth and I can't do much together anymore, we just tag team and do our own thing either caring for Gabriel or entertaining one or more of the kids or every now and then we get a wee bit of personal time. I watched Gabriel in the early morning while she borrowed Aunt Norma's kayak and paddled for an hour or so. Beth relieved me and I paddled out on a windsurfing board, too small to support me standing but just the right size to allow me to paddle about and abrade my nipples.

 Returning to shore, Isabella asked if I would paddle to the the far shore with her and Jackie. I was gassed after paddling on the board, assessed they were both in watercraft with life jackets and blessed the adventure.

 Far shore, the off center dark spot at the waterline are the two cousins.

 Powell and Choco didn't realize the girls were gone and enjoyed the near shore.

 Powell may be our little waterman.

 Dog

The end of a wonderful adventure, I'd be lying if I didn't say Dad was anxiously awaiting the return.

 Amaya and her folks joined us taking the kids on 4 wheeler rides. Isabella and Powell had to ride with their much loved Cousin Amaya.

 Jackie riding with Aunt Norma.

 My Dad and Mom in their rig with Isabella and Cousin Jonnie.

 Dad and the little camper.

 Norma in position snapping pictures and probably simultaneously posting to Facebook. Kind of like having your own paparazzi (albeit much nicer than the normal Hollywood fare).

Camping with a high needs baby gave us cause to really appreciate the  motorhome which allowed us to fire up the generator to power the microwave and the A/C.

Seems only a few years ago Beth and I backpacked past RV'ers deriding their patheticness.

Two nights was all our pathetic parenting skills could handle and we returned to the coddling of a house in the big City of Boise.

 We feel like we're running on empty and about 5 steps behind. The Occupational Therapist (OT) and Dietician stopped by the other day to work with Gabriel (and us) to transition him from the NG tube (tube feed that enters his nose and runs down his esophagus to his belly) to a bottle. Gabriel's Physical Therapist (PT) had recommended these two persons come out to help with the bottle feed because "his cheeks and tongue are really tight and we have to catch him prior to 7 months before he develops an oral aversion, you guys are in for a tough year."

"A tough year?" What the hell was the last year? Beth and I weren't sure whether to laugh or cry or... We just want to get the little guy on the bottle to simplify all of our lives. The tube is a royal pain as we have to transport the pump and rig it everywhere we go, around the house we have the pole which we move all over trailing Gabriel with his feed. We're getting better at solidly taping the tube to his cheek so he doesn't pull his NG tube as often as he used to. Not long ago we had the brilliant idea of tucking the tube inside his sleeping gown, the tube left his cheek, ran down his back and exited at the bottom of his little boy sleeping dress. Exiting the bottom of the gown the feeding tube connected to the supply tube coming from the pump, we didn't envision him kicking the two apart. An hour later and the feeding pump had filled his crib with formula. Or last night; he managed to uncork his tube and while he was disconnected from the pump the formula in his tube and some stomach contents made their way back out and soaked his nighty and woke him up.

Prior to leaving the Dietician stated she did not need to return as often as the OT but she would like to stay up on Gabriel's feeding pattern. I offered to send her a weekly Excel worksheet with the information and she commented "I can't believe how well you two have it together with all of this going on." Later Beth and I discussed that if we have it together there are some folks out there in real sad shape.

Our marriage is officially the legal drinking age, as of June 20th we celebrated our 21st wedding anniversary. 21 years is literally a life time, a generational gap; if we use the 20 year generational standard we are 2 generations removed from Gabriel. Although the census bureaus generational periods show him more as Generation Z. Recent generational nomenclature vividly displays a significant lack of creativity.

The first group to begin current labeling scheme Generation X was birthed from Post Modernism, the Punk scene and a free flux melding of everything; disparate world cultures, music, technology in the form of videos, cellphones, vcr's, pacman, starwars, cd's, pc's and the unique phenomena of square knit ties, the Brat Pack and Billy Idol.

 The youthful members of Generation X, the band which gave Billy Idol his start. The band was named after the book Generation X,  written in 1964 it chronicles interviews of counter culture British youth. Idol's Mum owned a copy.

Headin for the 80's. 

Generation Y though? and Generation Z? Sometimes there is a real dearth of creativity in this world (Hollywood is a prime example: remakes, sequels and derivative movies). I've heard of Generation Y referred to as the Millenials, I can dig that. Post 2000 is where my kids exist though, Z... gotta do better.

Gabriel's healing and thriving, in a few weeks we should be able to pick him up under his arms. We still have to take sternal precautions as his sternum is wired shut and we need to make sure it is completely healed prior to lifting him in any manner that stresses the area. Dr. Womack is fine tuning Gabriel's medications; lessening some and removing others. We are currently weaning Gabriel off Propanolol and experiencing the side effects. Gabriel was originally prescribed Propanolol to lessen his tachycardia (rapid heart rate) after his Norwood procedure. The drug is a beta blocker which basically suppresses epinephrine and norepinephrine and also adrenalin. We initially cut his dose in half but the restlessness and agitation he experienced caused us to cut it by only one fourth and take a longer period of time to ween him off the med.

This experience is ripe with side effects; I don't think Beth and I have communicated without regard to baby and cardiac issues for almost a year. My folks watched the kids for an hour or so while we rode bicycles downtown, ate dinner and spoke to a relative stranger (each other) the end result being Earle stating "Let's just ride home, we're done!"

A Nurse at Lucile Packard told us the hospital staff observes many couples experiencing child diseases, illnesses and the like end their marriages in divorce. It's easy to see why; one kid with a significant health issue could put anyone over the edge but add that kid into the normal hanging on the fringes family; siblings battling, finances pushing, personal time non-existent and familial armageddon is just around the corner!

I work and cook and help a bit with the kids, but that's it. Beth does the rest of the crap (not demeaning her at all instead just the opposite I applaud her for doing all the stuff that makes a family work). The non-congratulatory, mindless, essential to the family, absolute drudgery crap- bills, laundry, dishes, housework (toilets, counters, vacuuming, dusting, scrubbing, mopping, ugh...), discipline, grocery shopping, lawn care (I hate the stuff), errands, etc... and a third of the time she has to do it as a single Mom. A Firefighter's wife is a single Mom one third of her life. The Boise Fire Department schedule is 48 on, 96 off. It's a cool schedule when off duty but when at work we're gone for 48 hours. Only Mom's with traveling husband's can relate. The additional problem exacerbating the issue is Dad's selfishness, after 48 hours at work sometimes it's nice to get a little alone time. This doesn't happen very often and adds to the tension level.

 I did manage to build a 2 kayak trailer so the kids and I can bike to the pond about a mile away and paddle to escape the heat and have a little fun.

 Isabella assisted in design and construction.

La piece de resistance! 

(sorry about the lacking aigu et grave)

Powell ready for water!

This last week Powell and Isabella have spent each morning at basketball camp taught by their friend Noah's Uncle. A heartfelt thank-you to Noah's folks Dave and Emily who enrolled the kids and have transported them to and from each day. We are so fortunate to be surrounded by so many people who reflect what humanity is supposed to look like. The Gabriel experience continues to humble us and test us each day but the kindness, prayers, thoughts and love so many of you direct at us are felt and needed and nourish us enough to make it another day and sometimes even two.