House of love...

I recently went on a wonderful scavenger hunt at the local salvage warehouse with some fellow artists...I am already planning a return trip -OMG - what fun!!! Like an indoor yard sale of discarded house parts!!!. Among my finds were the escutcheons and keyholes that now adorn this piece of fence post...the fence post itself was saved from a previous junque outing...I just knew that I'd find a use for it one of these days.

I also brought back some larger pieces - shutters & window screens, perfectly distressed with age, which will find their way into some future projects. I love old things -- well some old things. Actually some things are not so good old. For instance: computers, underwear, milk, Danny Bonaduce, water pipes and teeth all come to mind.

So it's probably safe to say that you won't find any old underwear (or teeth) in my mixed media pieces. Or Danny Bonaduce (or old teeth) in my underwear. I just thought you should know.

Some believe...

Some believe - (trio) 5 x 5 acrylic, mixed media & collage on canvas.

I am in a mood today, or more accurately many moods. They change by the moment. I am uncomfortable in my skin when I get this way, but I know I just have to ride it out.

Do you ever ask yourself if you are enough? Or simply why? Or how?

Multi-tasking & art...

I think that painting - and particularly creating mixed-media works, definitely benefits from an ability to multi-task. I know that for me, it's a necessity. I am often impatient when I paint, wanting to add the next layer or object but having to wait for it to dry first. So, working on several pieces at once helps me to fill in the waiting time and not break my creative flow.

Last night I noticed, while blotting some paint brushes, that one of my paint rags was full of paint & wonderful colors, so while my pieces were drying, I decided to create some decorative paper backgrounds using just the rag and some bristol. Fun!

True...

True - 10 x 10 acrylic, mixed media & collage on canvas.

There is major construction taking place on my regular route to and from work, and it is virtually impassable during commuter hours these days, so I took a side road into work today. As I wound this way and that before being deposited just above the traffic jam, I gave a moment's thought to the creation of roads, and how some of them go straight from point A to point B, while others, like the one I was on, have dips and curves, meandering this way and that before reaching their end.

It could be that winding roads are that way because making them straight would have meant plowing through rock or impossible terrain, but I like to think that some creative soul made them that way because they make the ride better - more rhythmic and fluid.

Either way, it also reminded me to take the side road more often - just for the change in scenery and the enjoyment of the journey.

"Welcome to the '90s!"

...that is what one of my friends exclaimed last year when I gave her my new (and first) cell phone number. Now, like most, I cannot believe I lived 44 years without a cell phone. I carry it with me at all times, check it frequently and recently had to upgrade my texting package. I've lost it twice and both times I thought the world was coming to an end. Though I like to think I am not as bad as many, I have broken all of the cell phone habits I find most annoying -- talking in public, talking while driving, and leaving my ring tone on during meetings. Did I mention that my ring tone is a song by Pink called Bad Influence? It's not a tune you want screaming out of your briefcase at a staff meeting, I discovered recently. And that texting package? At the time I was averaging about 35 texts per month, and it was cheaper to upgrade to 250 per month. By the following month I was averaging 200 texts. WTF? So as resistant as I am to new technologies, I embrace them enthusiastically once I get around to it.


Now I've taken another major technological leap -- because apparently I missed the 80s too. I just upgraded my cable package so that I can DVR. Is that a verb? I think it is. Of course, I have absolutely no idea how to DVR. There have always been about 45 more buttons on my remote than I needed. On/Off/volume/channels/mute -- what else could one possibly do with a TV? Now I need all those buttons, but I will have to take a special ed course at the junior high in order to learn how to do it. In fact, I even have a second remote that came with my TV, and I have never taken it off the end table. I am afraid I will learn that I need two remotes!

One of the things I worry about with my new ability to DVR is that I will like it. A lot. And that I will sit in front of the TV like a giant vegetable and do nothing all winter but watch all the shows that I claim I don't have time for or that come on too late. Because now I can watch them on a weekend afternoon when the only thing that used to be on was Roadhouse with Patrick Swayzee or football and I would normally be doing something more productive.

Like talking on my cell phone. Or texting.

Home...

Home - 18 x 24, acrylic & mixed media on canvas

This is a gift for a friend who just bought her first home. As any of my regular blog readers know, home is a recurring theme in my art and a very important symbol in my life. It represents security, family, comfort, love, and acceptance - the one place I always feel grounded and real and safe.

I wish you all a good weekend and a place to call home.

More little heart paintings...

Heart swirls - 4 x 4 mixed media and acrylics on canvas.

I am 45 today. Probably more than halfway there.

Fun fall flowers...

I pass a local farmers market on my way home each week, and they have had the most colorful assortment of late summer/early fall blooms - marigolds, zinnias, & lots of hearty greens. I just love 'em!

Off for a fun fall weekend with family and friends!

Courage, Brains...and HEART!

(from my sister's update...)

I'd be tender, I'd be gentle
and awful sentimental
regarding love and art
I could stay young and chipper
and I'd lock it with a zipper
If I only had a heart.... xo

Hi everyone,
Avery is doing spectacular! She is walking almost on her own, eating (she grazes all day long), weaning on her oxygen, and just looks like the Avery we remember almost a year ago - when this unbelievable journey came to a peak last November when she was admitted the day before Thanksgiving due to her human aortic valve deteriorating.
That was really the start of this extraordinary experience - having a mechanical aortic valve placed in early December followed by a bi-ventricular repair (a 14 hour bypass surgery) in mid-December, and then emergency surgery a week later (on a Sunday night in a blizzard) when the OR team was called in from home to repair her pulmonary artery which was bleeding around her heart.
After weeks of recovery - she was finally discharged home January 26, 2009 - skinny and week - but fortunate to have 2 ventricles (or so we thought).
Avery was home for 7 weeks but on March 22nd we brought her to the emergency room at around midnight for a "belly ache" and what we thought would be a stomach virus. Neither Mike nor I were overly excited about sitting in the ER for 6 hours to be told - "make sure she drinks plenty of fluids" but she had come so far and we didn't want to take ay chances - even if it meant a tired Sunday the next day.
A couple of hours later, Avery went into cardiac arrest -- her first of what would end up being 3 arrests due to coronary artery clotting, spasms and heart ischemia. Avery also suffered severe pulmonary and GI hemorrhages from damage to her lungs and CPR with extensive anticoagulation.
On June 10th she had her 3rd cardiac arrest and was placed on ECMO for the 4th time. She was officially listed on the heart transplant wait list on June 14th as a Status 1A.
On June 15th - Avery had her bi-ventricular artificial heart pumps placed and was changed temporarily to a hold -- or "Status 7" on the transplant list to allow her to recover from her VAD surgery.

On August 6th - Day # 51 on the transplant wait list, Avery received the ultimate gift that would save her life and allow her, with a beautifully healthy heart - to heal the many many parts of her body that had suffered from an extremely sick, exhausted, dreadfully damaged heart.
Avery's liver, lungs, kidneys, pancreas, stomach, bowel, skin, muscles and nerves (especially those in her legs from the ECMO cannulas) were all effected - but are ALL recovering now that she has the heart of her super hero beating life (and love) into her every second of every day!
...and because of this...and Avery's inexplicable WILL to live (as Dr. Laussen eloquently stated one grim night on ECMO) - her spirit, sheer guts, and love for life and all it hands her remains completely unscathed.
On Monday, Avery will have her 4th routine post transplant biopsy and if all goes as planned - she will be transferred to the cardiac floor (OUT OF THE ICU!!!!) sometime during next week.
She has been in the ICU 180 days (which does not include Thanksgiving, December and January)
As I write this - Avery is sleeping peacefully arms above her head, her covers kicked off...as she rests up to welcome another tomorrow. Her DVD player is at the end of Polar Express which is one of her favorite night time movies (year round)...which seems perfectly appropriate for how Avery faces life...
Believing!
xo
Cheryl and Mike

The best of times...

(l. to r.) Cheryl, me, Jennifer, and (seated) mom.

My sister Cheryl (Avery's mom), invited us to a fundraising dinner in Boston last week, to benefit my niece's heart transplant surgeon, Dr. Francis Fynn Thompson. Dr. Fynn Thompson returns to his native Ghana at least once a year (but preferably twice) to do life-saving open heart surgeries on children there. More importantly, the team that travels there is teaching the medical staff there so that they will be able to continue his work and have a cardiac surgery program of their own in Ghana.

The evening was wonderful. We laughed and talked with Avery's doctors and nurses, ate some wonderful food, and contributed to an amazing cause.

And speaking of my niece, Avery has been up and walking - on her own - in the hospital garden. She is progressing wonderfully and we believe she is on the path to going home in the near future.

Truth...

Truth.
11 x 14 mixed media and collage on canvas.

I am working a lot with rusty pieces of flotsam and jetsam that I find primarily on my dog walks. Although there are ways to rust new objects with chemicals and smelly stuff (liver of sulfur), I prefer to find items that have survived the elements. In addition to being rusted, they are usually mangled and crushed and run over and abused, and something about this appeals to me -- perhaps that they have managed to survive, and to me, all that weathering adds a beauty that was lacking in their original form -- another metaphor for life.

Some new art pieces...

Just a little fun in my studio.

Life. Love. Joy. Hope. Peace.
5 x 5 mixed media & collage on canvas

Sacred Spaces...

Now on exhibit...
Art 'Round Town, a group of local artists to which I belong, has an exhibit at the Colonie Town Hall through the end of October. The theme is Sacred Spaces, and the exhibit features the works of eight artists, who work in a range of media -- art quilting, mixed media, collage, acrylics and pastels among them.

If you live in or around the Albany, New York area, I hope you have an opportunity to visit the second floor of the Town Hall. Information is also available about purchasing works on display.

Above is a glimpse of my pieces. All are 11 x 14 mixed media & collage on deep set canvas.

A wet summer...

Part 2 of my travels took my sister Jennifer and I to the NY State Fair in Syracuse for the Kenny Chesney concert. If you think we were wet running through the Prudential fountain (previous post), you should have seen us by the encore.

Thank heavens for Cowgirl hats & stylin' rain phonchos! The Fair boasts a booth called Pride of NY where you can purchase NY grown/manufactured goods. I wanted(naturally) a bottle of NY State wine, but apparently State law prohibits my carrying the bottle around the Fair -- I could, however, carry 4 plastic cups of the same bottle, poured for me. Ya gotta love the law! I was also tempted to get an airbrush temporary tattoo, but I am glad I resisted this urge, as it would have been dripping down my back by the end of the concert.

I would also be remiss if I didnt' mention Kenny's warm-up act - one Jake Owen - I see a crush of the month blog in my future.

Here, again are the highlights.

Road trip update...

Within the last week, I've been to Maine (Rockland), Massachusetts (Boston) and Syracuse, so I've not had much time to blog. My overnight of mischief with Ali was pretty tame by our standards, and I only took one decent photo, so I don't have much to share, in spite of the build-up in the last post.

Then I was off to Boston with my cousin Susan to visit my niece Avery, and take my sister Cheryl out for a night (actually 2) on the town. In spite of (or because of) having spent the better part of 2009 in a hospital with her daughter, Cheryl decided to dare us all to run (repeatedly) through the fountain at Prudential Center. We don't need much coaxing...and quite frankly, after all my sister has been through, if Cheryl had asked us to walk against traffic on the yellow line, we would probably would have indulged her, so the fountain was just plain fun. She then dared me to wade in the reflecting pool, which earned me a serious scolding by the Prudential security madame with the big flashlight. Kinda scary (not!)- unfortunately it was dark and we could not capture this second dare, but here are some of the highlights (above).

Thelma n Louise (with a better ending- we hope!)

After about five minutes of careful consideration and another five minutes of intense planning (and several hours to deliberate our wardrobe choices), my friend Ali and I are off on a road trip - just a night - or most of it - or possibly part of another day - or not... we really don't know except we'll have about 12 hours of driving time, round trip, with my dog Max, to expound at great length and painful detail on our strangely parallel lives, eat, laugh, hear some good music and generally find just a bit of mischief.

These photos are from our last haphazardly planned get together, which included flavored martinis-I've already forgotten what flavor; fishnets, 80s prom dresses, a hula hoop, redneck barbie and bunny ears.

Maybe more Lucy & Ethel? Or can you think of another dynamic female duo???

Sunflowers, I just love 'em

I can't resist at least one post each summer dedicated to my favorite flower. I just love everything about them -- Their size: so large they look almost comical in contrast to my manicured shrubs -- their color: some very yellow, some with red highlights, some more ochre and brown -- their shape: round and happy and symmetrical -- their seeds: that attract and feed the summer birds and bees.

In my garden they grow whereever the birds drop them out of the feeders, so I never quite know when or where or how many I'll have.

This is the last of them for this summer, brightening my dining room table.

"Fish imitating life..."

Many of you ask how my sister and her husband have managed to cope with my niece's condition over the last nine months. Humor plays a big part...

We are saddened to start tonights update with the news that "Daddy the goldfish" is no longer with us.

Mike (whom "Daddy the goldfish" was named after - by Avery of course) was found belly up tonight when Mike got home.

Avery received her 2 goldfish a year and a half ago -- on Easter Sunday - from her Aunt Jesse and Aunt Mary.
Avery which - she affectionately named them "Daddy" (after Mike) and GiGI (after my mom - Avery's grandmother).

Needless to say - Mike's response to being named after a goldfish was:
"this is my worst nightmare - I have to live trapped in a tank with my mother-in-law" :))

Anyway - after I received the news this evening - I called my mother to let her know. She was inconsolable.....laughing.

Of course when Mike told me - I asked him "how GiGi the fish was doing" -- his response:
"she is fine - happy to be eating her food all by herself as if nothing ever happened - and every now and then - she will swim around and bump into him."

So - all in all - "fish imitating life"

As for Avery - I am happy to report - she is MUCH better than Daddy AND GiGI! She is a little more awake today and we were able to start weaning her ventilator a little bit more.

We are still battling this infection as well as trying to heal her belly wounds. We are also trying to figure out when the best time is for her to go to the cath lab for her first post transplant biopsy. When this does occur - we will place new "clean" lines in her - but want to make sure we have her blood cultures clear before that - so her new line doesn't get infected.

We are also continuing to follow her creatinine (for renal function) which is still elevated but stable. She continues to pee very well - so this is reassuring - but "mom" a data driven gal - so she won't rest until the number is just right :)

We will keep you posted and please continue the prayers!!

xo
Cheryl and Mike

Avery - on the road to recovery...

Avery continues to have a lot of swelling and the usual balance of fluid levels after major surgery, so she will not be closed up until Wednesday. She has a very long road of recovery, but thanks to all of you and your support, wishes, prayers, she's well on her way. Here is the latest update my sister sent us Sunday night...

"No longer an only child..."
Hi everyone,
As promised - tonight's update is dedicated to Avery's donor - and in our minds and hearts - her new sibling - a child we love as if they were our own.
Yesterday - one of Avery's nurse's asked me "did you feel it"?
I asked her - "feel what?"...and she responded - "her heart - it is so strong beating inside of her"
Avery's heart is literally covered only by a thin bandage made out of plastic - so you can literally gently place your hand over it and feel her new heart "jump up and hit the palm of your hand" with each beat.
At first I thought - I have no intentions of putting my hand there -- but being the mom and insanely curious nurse that I am -- I did.
It was overwhelming on every level!
I could not help but think of the parents of Avery's donor - some how wishing I could hold their hand there too - so they could feel the life of their child inside of Avery.
We hope that one day - God willing - if the donor family wants to - that we are able to meet them...and even more so...that they are able to meet Avery and know her story! They will forever be part of our family.
It is inexplicable to even imagine what they have experienced and the void that losing their child will leave in their lives.
We pray that God gives them strength and that they somehow find peace in knowing what they and their child have done for Avery and our family.
The following is a song that my dear friend Julie heard the morning of Avery's transplant. I had never heard of it - so I looked up the lyrics.
I cannot think of words that could better capture what "We Wish" for Avery and her donor.

written by: Jeffrey Steele and Steve Robson
recorded by: Rascal Flatts

"My Wish"
I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walking until you find the window,
If it's cold outside, show the world the warmth of your smile
But more than anything
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
and you never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
I hope you never look back, but you never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
More than anything
This is my wish...
~Cheryl and Mike xo

No additional words necessary.

To fall in love. 10 x 10 acrylic & mixed media collage on deep set canvas.

Avery will get a new heart - TODAY!

Beep... Beep... Beep!
(was the sound of the pager that alerted my sister and her husband at 2 am)...
Excerpted from Avery's carepage updates...
Good morning everyone! Avery's heart has been found. She went down to the operating room at 5:35 a.m. and we are told she will be there for most of the day. We got the call around 2 a.m. Her transplant cardiologist Dr. Betsy Blume told Cheryl it is "the perfect heart."
Her surgeon Dr. Francis Fynn-Thompson left his vacation on the Cape and drove here to the hospital around 4 a.m.
We don't have any information on the donor or where the heart came from... and we may never know.
Please say a prayer for Avery, her donor and their family today.
We will keep you posted once we have more information.
Thanks for all of your prayers, messages and support!
Mike, Cheryl, and Avery



These are Avery's most recent photos with her parents, in the hospital garden, enjoying some watermelon. To the left of her mom is the IV pole with her meds, and in front is the Berlin heart that has been keeping her alive and allowing her to build the strength she needed to receive a new heart.

I cannot thank you all enough for sharing this journey with us. Your prayers, good wishes and messages of support have made a huge difference for all of us. I will continue to share information as I know more.

Sacred Spaces...

Sacred Spaces-Home. 11 x 14 acrylic & mixed-media collage on deep set canvas.

That's the theme of the exhibit I will be participating in from Sept 3 to Oct 29 at the Colonie Town Hall in Latham, NY. This is the first of 4 or 5 pieces I will be exhibiting.

I was recently invited by my friend Marilyn to become a member of a newly-formed local artists group - art 'round town (a.r.t.), and since the rules are few and participation is flexible, it sounded like just the right opportunity for a rules-resistant, deadline-hating artist such as myself.

And although I am busy with a lot of things this summer, I loved the theme for this exhibit, so I could not resist participating.

Here is the flier promoting the event:


If you're in the area, stop by the Town Hall and check out the exhibit!

My crush "of the month"...

Okay, so it's been waaaay more than a month since I posted my last crush. In fact, it's been about two years. It's not that I haven't had any other crushes, celebrity and otherwise, I just kind of forgot this particular blog topic until the other day.

You see, early this summer, my sister Jesse asked me if I wanted to see Kenny at the NY State fair (at the end of this month), and I said sure. I actually like his music and even own a couple of his CDs. I just wasn't all crazy about him like most of his (mostly female) fans seem to be. I have, in fact, resisted the charms of this particular cowboy for more than a decade, while my sister has not missed a concert within a hundred mile radius, and owns every CD he's ever made. I must even confess that after one particularly unfortunate wardrobe choice Kenny wore to the CMA awards back in the late 90s, -- a white, sequined Elvis-style jumpsuit -- I was one of those who suspected he might be, well, a little Brokeback Mountain -- not that there's anything wrong with that,(and I now believe that I was wrong) but I teased my sister unmercifully about the fact that her favorite cowboy probably didn't like her as much as she liked him.

Anyway, a couple of weeks ago, my sister gave me this CD and I am smitten. It's a little Jimmy Buffet, perfect for summer, and I am just reggae-in' all over the place and loving this guy's mellow vocals and laid back carribean charms. After I sang Jes my best rendition of Key Lime Pie for the fourth time, and told her how I want find a way to get backstage at the concert, she finally confronted me -- " I think you have a bigger crush on Kenny than I do!"

And for this month, at least, she's right!

Did I say tomorrow? I really meant, um, never.

I just read my last post to see where I left off and apparently I had promised photos from a recent art gathering "tomorrow." That was a week ago. What can I say? Time flies! And when I finally opened the file with the photos I took, they were all blurry. Have I mentioned lately that I am one of the world's worst photographers with my digital camera? The camera I've had for 4 years? And every January I make a resolution to actually read the manual and learn to use it? And then I don't? Have I mentioned that lately?

So in lieu of my own photos, I will link you to the blogs of some of the attendees who actually do know how to use their cameras -- Tabitha and Ginger.

It was a perfect day. The hostess, a very good friend of mine, is an event planner as well as an artist, so in addition to good company, we had great food, beautiful surroundings, and a seamless choreography of the day's events. She even managed to make it stop raining -- no small feat this summer.

Heart strength

16 x 20, mixed media acrylic & collage on canvas

I have a number of new paintings in the works - several more in the heart series, which will continue at least until my niece gets her transplant*, and a new series of 4(or 5) for an upcoming local show with a new group of artists that I have joined. I will be providing more info as the date gets closer and when the official logo for our group has been approved.

*FYI, Avery is doing very well with her Berlin heart, eating, drinking, making crafts and even taking trips out to the hospital garden during the day.
I am also on the verge of meeting with one of my co-conspirators in art to discuss some workshops that we would like to offer, so teaching will be back on the table very soon.

I would tell you more, but so many details are still up in the air.

Tomorrow I will share some photos from a weekend luncheon and artist's date that I attended. It was so great to hang with a group of "art girls" for an afternoon.

Art therapy?

As some of you know, my sister Jes and I visited my niece (and sister, and brother in law) in Children's Hospital last weekend. As always, it is soooo good to see Avery when she is awake and alert and on the road to receiving the ultimate gift. Not to mention how good it is to be able to take my sister out for just a little while to give her some much-needed respite from the daily stress of caring for (and worrying about) Cutes.

During the visit, we spent a good deal of time in Avery's room, and I had time to take in all of the wonderful cards, letters and works of art created by her classmates and friends. Her walls and windows are a celebration of hope and color and creativity, and well, in the middle of it all... one big, black sorta scary painting of a shark.

During this visit, I also happened to be reading this book, which is a fictional novel based on the very real shootings by two students at Columbine High School in the 90s. So I look at the shark painting, for probably the fifth time that day, and I say to my sister Jesse, (somewhat jokingly), "they'd better keep an eye on this kid when they get older," and my sister responds, with a smirk "um, that would be YOUR NIECE!"

So, as you can see from this painting, which I was allowed to take with me, and which I now have hanging in my office to intimidate my colleagues, Cutes is definitely expressing her frustrations about having spent the better part of 2009 in a hospital bed.

From her little heart...

From her little heart - 12 x 12 acrylic mixed media collage on deep set canvas.

I've finally returned to my art room after an unplanned hiatus, and this is my first finished piece. To give you an idea of how I create, and the kind of planning that goes into my paintings...I dropped a paintbrush on the floor as I was working on this piece, and saw the watch faces in a box under my table as I bent to pick it up. That's how it ended up as part of this painting. It's very often that simple. It's one of the reasons I like to have art supplies and found objects stored in open containers around me. It looks messy and chaotic, but if they're in my line of sight, and I don't have to break the creative flow to find them, they're more likely to end up in a finished piece.

In other news...
I was interviewed a short time ago by fellow artist and blogger Liz Ness, and the interview has now been published on her blog. Check it out. Liz and I have never met in person, but we've been fans of each other's art and blogs for several years. Take your time when you visit Liz' website and blog (which she maintains with friend and artist Jackie Wood) -- it's full of great artist interviews, digital tutorials, product demos, and a great online store, to name just a few.

A glimpse of summer around my house...

I am really loving the summer this year. Even with all the rain, we've have relatively cool evenings until this week, and I love opening the windows wide and listening to the birds singing outside my windows.

And Cutes (my niece's nickname)is doing well. She's had all of chest tubes removed and is slowly being weaned from pain meds, ventilator, etc. Next week, I have will have a Cutes-related giveaway. Stay tuned!!

Have a good weekend all!

Visualize world peace...

Just a little Photoshop fun. I took one of my recent paintings, and, using a series of filters (which I could never duplicate) this is what happened. Kinda far out and groovy, I think...

I have some exciting art opportunities in the works for the late summer & early fall, but details are still up in the air, so I will refrain from sharing the details for now.

Meanwhile, my niece Avery is back at Status 1A on the heart transplant list. She continues to be weaned from the ventilator and given extra high-calorie feeds to build up her strength. She is still sedated most of each day to give her body time to rest and heal from her most recent procedure (the Berlin heart). Now it's a bittersweet wait for a heart to become available.

Heal...

Heal: 12 x 36, Acrylic & mixed media on deep set canvas

This was a painting I made as a gift for the CICU at Children's Hospital when I last visited. It was late May, but it already seems like ages ago, given all that has happened since then.

I think I may have been hiding a bit behind my sister's "Avery updates" these past few days. I am reluctant to share all the thoughts and emotions that continuously run through my head and heart. It's too close, too much, too fluid. It changes so often that by the time I write something down, it's no longer quite accurate. So instead, I leave you with this confusing jumble of words.

And always, gratitude. For your friendship, thoughts and prayers for my niece and our family.

PS - Avery was awakened very briefly last night -she waved at her mom & dad, wiggled her toes and opened her eyes briefly before falling back into much-needed slumber.

Donate life...spread the word

(Maintaining a blog is so easy when you just lift your sister's entries...)Here's the latest about Cutes...

Hi everyone,
Avery had a good night and is having a good day as well.
Her Bi-VAD (Berlin Heart) is doing all the work it needs to. We started her back on some heparin last evening and will start on some aspirin and either plavix or persantine in a few days.
All of this will be to anticoagulate her blood toward preventing clot and fibrin formation in her Berlin Heart.
On occasion - (not infrequently) - the device needs to be "changed out" if clots or fibrin build up occurs. This would NOT require open heart surgery -they would only change out the "pump heads" which are all external - but they would likely do this in the OR if necessary since they removed Avery's mechanical aortic valve.
As for transplant - Avery is currently a "status 7 - inactive status" on the transplant list. This means we are in a temporary "holding pattern" for transplant in order to optimize her some more following her surgery on Monday.
This is very typical and we were told this would be the case following her surgery for a few days - a very temporary period of time.
Basically - if you are a status 1A and active - you need to be completely ready and prepared at any point a heart should become available to go to the OR. If you are not - then this delays precious time to notify other potential recipients - and this is precious time lost for all.
Avery will likely be re-activated by Friday - and she will return to an "active 1A status" -- thus -- keeping the hours" she has accrued on the list prior to going on "status 7/inactive" - so she starts reaccumulating time immediately.
As for how she is doing today -
She is much less "puffy" then she has been since her surgery on Monday - so the diuretics are doing a great job helping her kidneys to get rid of the extra fluid.
We are weaning slowly on her ventilator - which is great - given all the fluid she still has to lose.
Her nurse placed a feeding tube. We will probably start a very small amount of pedialyte to get her belly used to it and then start ramping up the high test calories in a few days.
Finally - we are planning to do a brief "wake up" test today to briefly see how she responds to us.
Dr. Fynn Thompson is very happy with how she has and continues to do.
As we continue on this journey - and hope, pray...and wait...we would like to ask all of you to spread the word about organ donation.
It is something that is rarely talked about - understandibly - not exactly "life of the party chit chat."
But organ donation is an underappreciated issue - especially when it comes to children donating to children! - despite hundreds of kids (and thousands of adults) whose lives can be saved each day.
If we have learned nothing else over these past 5+ years it is that life takes unexpected turns - and despite our best efforts - we have little control over much of it.
The best we can do - is take what we are faced with and do the best we can - hoping that even in the worst of times - we can somehow make a positive difference.
We will never understand why Avery has had to endure so much - but have full faith she will continue to inspire and teach us for many, many years and get back to her "childhood" - because mom and dad need a break before the adolescent years!
We also do not subscribe to the "every thing happens for a reason" gibberish - because no explanation in the world could make sense of what these kids go through.
But since we cannot change the "why's"...we can at least impact the "what and how" and all make a difference!
So today - tomorrow and whenever you have an eager ear to listen - spread the word about organ donation!
Check your drivers license, talk to your children (if they are old enough to understand

We underestimate what our kids can understand - and sometimes in a much clearer and simpler way.
You never know.... your message could save a life someday!!
xoxox
Cheryl and Mike

First steps...

(the latest excerpt)

Avery came out of the operating room at 11:30pm with her new "Bi-VAD.

Dr. Fynn-Thompson placed both a left and right VAD - so she now has her Berlin Heart pumping her complete pulmonary and cardiac output - another miracle that we have been blessed to receive!

She looks beautiful and is on A LOT of pain medication and sedation - so hopefully - she took our advice and is dreaming of her eventual trip to Disney World, pink elephants and ice cream -- and all other really fun thoughts!!

She has a team of MANY caring for her tonight - it is overwhelming and beyond extraordinary to see the dedication of so many - who stayed with her - WELL beyond their shift in the cardiac OR - led by Dr. Fynn-Thompson who is still here guarding over her and his amazing work!

Avery is stable thanks to the efforts of many and prayers of millions!!
We will send another update tomorrow - but I will end tonights update with the saying in a perfectly beautiful card that we read as Avery's surgical team wheeled her into her room (thanks Bets!! xo)

Only you can create your own path...

when you find it - and set foot on it

step boldly in the direction of what feels right

The first steps can be the hardest

New landscapes

can be astonishingly beautiful.

...Good night sweet beautiful "cutes"
We are ALL here with you - on your new path! xoxo
We love you "to the moon and back"

Cheryl and Mike

Bruchgefahr!

(excerpted from my sister's carepage website this weekend)

Saturday news...
Hi everyone,
Avery had a stable day on ecmo. Nothing new - which is good.
Her chest x-ray looked even a little better than yesterday - so keep the prayers for clear lungs with low pressures coming!!
She is still on schedule to receive her Left Ventricular Assist Device L-VAD) on Monday.
There is a huge black metal box in the hallway with the word "Bruchgefahr!"
in big red letters.
This means "handle with care" in German.
This box contains the artificial heart pump for Avery.
Of course to hear Mike exclaim this in his best German accent is a whole other experience :)
Mike - who vowed he would NEVER carry a beeper - now has his very own - courtesy of the transplant team! This way - we both can be reached anytime -
when the most important call we will ever receive - comes!
We went out for Chinese tonight and my fortune read:
"you will get what your heart desires"
We sure hope so!!
Keep praying!
Here is to a peaceful night with the exception of our phone ringing.
xoxox
Cheryl and Mike


Sunday news...
"From Hungary...to Ghana...to Avery..."

Hi everyone,
Another nice quiet day in the CICU with Avery.
Her chest x-ray is unchanged (which is good)
She is scheduled as "second case" tomorrow for the operating room - which means she probably will not go for surgery until about 12pm. Dr. Fynn Thompson said he wants to be fully available post operatively to monitor her - so this will free him up for the remainder of the day tomorrow.
She looks beautiful today and when I whispered in her ear and asked if she could hear us talking she knodded "no"....:)She is sporting a princess bun with a big pink bow that says "Bruchgefahr"! all over it in hot pink marker with fancy hearts :))
We will keep you posted.
In the meantime - I have placed a couple of links about Avery's surgeon Dr. Fynn Thompson for you to learn a little more about this amazing man.
http://abcnews.go.com/GMA/story?id=5487217&page=1
http://childrensinghana.typepad.com/childrens_hospital_boston/profile-1.html
xoxo
Cheryl and Mike

The latest news about Avery's progress...

"Good Friday"....
(excerpted from my sister's carepage website)

Note: The photo is Avery enjoying the ocean last summer.

Hi everyone,

Avery's chest x-ray this morning had more fluid - so she went to the cath lab today to help decrease her left atrial (upper chamber) pressure that can be causing some of her high lung pressures and fluid (backup)in her lungs.

Dr. Lock dilated the stent between the atria (2 upper chambers) from 7mm up to 10mm.

Our hope is that we can further work on clearing out her lungs over the weekend to place them in the best state possible for her L-VAD (Berlin Heart)on Monday.

Her chest x-ray tonight already looks improved so keep those prayers coming!

Also - as of 2:22pm today - she was officially "Listed" with the UNOS (United Network of Organ Sharing) for a new heart.

She is classified as a status 1a within Region 9 (New England). This includes Ma, RI, NH, Maine, CT, Vt.

Status priority goes from 1A (first priority) to 1B and 2.

As long as Avery is actively listed - she will always be a 1A based on ecmo - or the Berlin Heart.

Children's Hospital is the only pediatric transplant center within the 6 New England states - so she is top priority for this area. While we are not allowed to know who - if anyone - is on the list "before her" - since we have been in the cardiac ICU for months -in the only center that does transplants - we are pretty sure she is in a good spot:)for our region.

Since Avery is O+ - she can only receive a heart from an O+ donor.
This places her at a slight disadvantage if there is a heart that is A, B or AB - HOWEVER -
O+ is the most common blood type - so this balances out her compatibility quotient.

Also - because she can ONLY receive an O+ heart -
if she were waiting among others of the same status (1A) and an O heart became available - she would receive it first- pending the size was appropriate - because she cannot receive any other type.

She can also receive a heart up to a 2,000 mile radius - if she is higher priority than others on the list based on her being on ecmo - or soon to be - the Berlin heart.

As for her right now-

She looks beautiful and is sleeping comfortably.
She was almost wide awake when she came back from the cath lab today - which is somewhat frowned upon - when you are on ecmo - since you do not want to move the cannulas (the tubes in her leg).

She was trying to sit up and put her legs over the bed.
We quickly sedated her and made sure she was comfortable - but not before Dr. Lock stopped in to check on her.
She pointed at him and pointed to the door - basically - throwing him out of the room.

His response:
"It's good to see she still has her senses" :))

Dr. Lock also very kindly offered Mike and I Red Sox/ Yankees tickets for Wed and/or Thursday night.

This was prior to Avery going on to ecmo this week- but such a kind gesture!
We told him we would take a rain check - but thanked him for thinking of us.

(editors note: the "we" in "we told him" was Cheryl)

So - with that said - we will say good night and ask to continue the prayers
"Clear lungs with low pressure" !!

Thank you all xxoxoxox
Cheryl and Mike
"Team Supergirl"

A New Chapter...

This is a reprint written by Avery's parents, from the carepage website they maintain to keep us all informed...

(and the photos are from a trip last year to the Vineyard. Avery loves to play make-believe, and one of her favorite characters is a bossy, but charming waittress, pictured here.)

Hi everyone,
It has been a very long day and we have plenty of news to share with you.
(This will be a long update, but we hope you have a better understanding of everything by the end of it)
First of all, Avery is back on ECMO bypass. She is ok and will be on it for several days.

How did she get there?
As Cheryl mentioned last night, Avery has been very fragile and weak lately and hasn't been getting better.
Late this morning she took a turn for the worse.
As she was sitting in bed, she went into heart failure. Her nurse Lauren hit the code alert button and the ICU team went into action.
One of the doctors immediately started CPR - and it worked.
In fact, Avery woke up during the compressions and actually tried to push the doctor away.
Once she was stable the decision was made to put her back on bypass. Not so much because it was necessary at that very moment, but because she was certainly going to have another episode again soon - so why risk it?
She is stabile and her heart and lungs are getting the support they need right now.

So what's next?
That's why we're calling this update "A New Chapter."
To make a very long story short, Avery will soon be on the list to get a heart transplant.
After nearly two-and-a-half months of struggling with her coronary arteries, Avery's heart simply can't go any further.
In many ways, it's been a miracle to get five-plus years out of the heart she was born with. We are forever grateful to Dr. Delnido and everyone here at Children's for getting her this far.
When she had her biventricular repair back in December, her coronary arteries were removed and put back as part of the procedure.
They have not been the same since, which came as a surprise to all of us because this had never happened before to any of the other biventricular repair patients.
When she had her first coronary episode on March 22 it was simply the first sign of things to come.
Her condition improved - so much in fact that she was about a day or two away from going home.
That's when the second episode hit and, looking back, she's never fully recovered from it.
Add that to the fact that they will surely keep happening and the decision became very clear - it's time for a new plan.
A heart transplant is her best and only option at this point.

So what does that mean?
It's a complicated process, but here's what we're expecting to happen.
Avery will be on ECMO into next week.
From there she will be taken to the operating room (exact day not decided yet) and she will be connected to a VAD (Ventricular Assist Device)
The VAD, which they call a "Berlin heart" (that's where it's made, in Germany) is a portable mechanical device that essentially will do the work for her heart and allow her to rehabilitate until a donor heart is found.

How long will it take to find a donor heart?
Here's how her surgeon Dr. Delnido answered that one:
"I've seen it take as little as six hours and as long as a year-and-a-half."
The bottom line - Avery will be here in the hospital for a very long time.
So, while she waits for a new heart, this "Berlin heart" will basically buy us some time. Kids who have been on it in the past (about 20 here at Children's Hospital in the last five years) have been able to come off the respirator, work out with physical therapy, eat, drink, and some have even been able to ride a bike.
So how long do they think she'll be in the hospital?
It's impossible to guess at this point, but of course, we asked.
Because Avery's condition is so fragile she will be moved to the top of the waiting list once she is formally on it (she has to wait for a small infection to go away in a day or two before she can offically enter the list)
We have been told that for a child in her condition the average wait is about two-to-six months.
They will need to find a heart that has the same blood type as Avery (O positive) and one that is about the same size.
When they find a heart that matches, she'll have the surgery.
So, if they find a heart quickly, she will have a long recovery time afterwards, because she will not have had time to build up strength before the surgery.
If it takes a long time to find a match, her recovery time after the surgery would likely be shorter because she would be in better shape for the surgery.

How are you all doing to this point?
It's a lot to digest - but we're getting near the end.
Once Avery gets a new heart, another whole new chapter will begin that will surely have ups and downs that we can't begin to think about right now.
None of this will be easy - it will be a very, very long road.

Please keep the prayers and support coming!
They've helped us get this far - and we are all very grateful!
As always - Thank You!
Mike, Cheryl and Avery

More miracles please...

This was Avery on Valentines Day of this year, in between her two very long stays in the hospital. She is back on ECMO now, which is just buying her time until she (hopefully) can get a new heart. Her amazing little heart has done all it can and can no longer work on its own.

I just want all of you who visit my blog to know how grateful I am for your kind words, thoughts, prayers and insights for Avery and our family. I know that we are blessed, every minute of every day, and I do not take it for granted.

Miracles happen...

10 x 10 acrylic and mixed media painting on deep set canvas.

My apologies for dropping off the blog-o-sphere for awhile. The warmer months (though they've not been terribly warm so far) bring with them a lot of outdoor chores and activities that consume time I might otherwise spend blogging or painting, or doing any other number of essentially indoor activities.

I finished this painting last night while waiting for a call from my mom about Avery. She needs a miracle these days my friends. In spite of her absolutely fierce determination, which is evidenced daily by her expressions and gestures, she continues to have a tough fight ahead of her. I hope to know more tomorrow, but a heart transplant may be her next hurdle.

Please continue to keep Avery in your hearts, minds and prayers along with her parents and the medical team who are working so hard to get her home and back to a normal little girl's life.

Gratitude and humility...

My friend Marilyn stopped by my office yesterday to hand-deliver a wonderful gift: a group of heart-themed ATCs made for my niece -- the timing is perfect, as I will be traveling with my dad tomorrow to see her. (Marilyn also collaged the house pictured here, in which the ATCs will reside.)

In addition to the beads, glitter, buttons and embellishments that any little girl would love, these very special ATCs also carry messages of hope, love, family, and strength (to name just a few) which brought tears to my eyes, and I am sure they will be treasured by Avery when I share them with her.

Thank you Marilyn, Melanie, Melissa, Lori, Fran, Laura, Sharon, Miriam, Peggy, Roberta, Pam, Linda, Ginger, Elaine, Helen, Tabitha, and Patti. I will carry your thoughts, prayers, wishes and friendship with me on this visit, and everyday.

Warning - I am ranting just a little bit here...

Control issue!? - Me?!

I've discovered recently (or is it again?) that I have one. Actually, I don't think it's an issue at all. I like to be in control - of MY life, MY art, MY decisions. That's all. Is that an issue? I don't think so. I can compromise, but I find that compromise comes easiest to me about things I don't care much about. The things about which I am really passionate and have strong opinions - like my art, my house, or my dog, for example - those are things about which I want to be the sole decision-maker. I don't want to compromise. I don't want to have to meet in the middle, or spend my time doing something out of obligation rather than something born of natural desire.

Of course, I've mentioned in previous posts that I am well aware that control of any sort is an illusion. How often do I get up in the morning and mentally plan how my day will unfold, only to find it doesn't work that way? To some extent, every day. I know that there are a billion details beyond my control - to me, this is another argument to hang on to as much of the illusion as I can.

All this, and yet I consider myself a pretty easy-going person. There are just a few things about which I have become very protective lately. My art - which is coming from a very personal place these days, so I am protective of the source and of the motivation. I want to share it, and I plan to -- but how and when? I just haven't decided yet. And my time - I never have enough to do all that I want. Does anyone??

In the meantime, here are some journal pages from my overnight in the country with Debbie. We also did a collaborative painting, but I forgot to take a photo. (FYI a collaborative painting is definitely a surrender of control!!!)

Footnote: It has been pointed out to me that my recent change in marital status could be part of my current control "thing." It is amazing how quickly one can get used to not having to consult with another human being when making decisions.

The art exhibit...

My friend Marilyn's exhibit opening at the Five Rivers Environmental Center on Saturday was a great beginning to the weekend. After taking in all of the exhibits(Marilyn was one of five artists whose work was on display), I made a nature print at Marilyn's demo table, and then painted a metal heart (for Avery, of course) that I was able to rivet onto a metal sculpture. I love exhibits that allow for some interaction. I would have liked to stay longer to enjoy the hiking trails and see the grounds more thoroughly, but I had lots to do, so I plan to visit again when I can just take some time to walk around with my camera and my journal.

After some much-needed yard work, I headed out to farm country to visit my friend Debbie. I'll be posting the artful results of that visit tomorrow.

Aries, art, artists, friends...

These images are of an owl named Aries, hooooo I may very well meet this weekend... I first learned about him in this blog post by my friend Marilyn, who is having an art exhibit which begins tomorrow at the Five Rivers Nature Preserve, where Aries resides.
When Marilyn first wrote about Aries, she offered a blog challenge to create an altered art image of him. At the time, I was busy with other projects, but I decided to create one today in anticipation of meeting him and seeing Marilyn's exhibit. Clearly, I can't improve on the art of Mother Nature. He's a beautiful and majestic creature.

After the exhibit, I will hit the road with my faithful sidekick Max, and head out to my friend Debbie's, for an overnight of art, food, friends and fun on the farm.

I hope to have pictures of art & adventures to share with you on Monday.
Enjoy the weekend, my friends!

There's no place like home...

Tomorrow, my last heart in the "nine hearts" series (previous post) will be headed to Boston, so I created a new series. This one has an obvious theme. It will carry with it my wish (and all of yours) for Avery's full recovery so that she can go home and resume her normal five-year-old life, with friends, neighbors, swingset, goldfish, a fridge full of Pelligrino and stops by the ice cream man, to name just a few of her favorites. These are just simple pencil sketches on foam core, embellished with buttons & velvet rickrack.

I have also been busy with some new heart paintings, which will make their debut here soon. I need to add just a few finishing touches!

And speaking of Avery, just a quick update:
She continues to amaze her doctors and make progress. Her lungs are improving and her heart has been stable. She may be extubated in the next few days (again), and we hope this is the road to her return home for sure this time!!

Nine hearts.

I made this series one night last week. They're just simple colored pencil sketches on black foam core. I began mailing them to my niece, one a day, with little notes attached to the back.

I used to mail things to my friends and family all the time, before email made it so easy to get in touch in a split second. But I think a little note or gift in the mail is a treat, and I should do it more often. I love to get mail that does not consist of junk and bills, but it's rare these days.

For those who are thinking of and praying for Avery, she's still having some issues with clotting in her lungs. Please continue to send your prayers her way. Thank you

That's what Avery would call an "Ow-y"

In a recent post, I ended with a note about how "I love to feel the earth beneath my feet. Cool, scratchy blades of grass make my toes happy." This is true. I love walking barefoot in summer, but it is not without its perils. A splinter from my deck, a sharp stone under foot - each year, I risk inevitable injury for the pleasure of romping around in shoeless bliss.

This year, my undoing -- yes, I've been undone and it wasn't even May yet! -- was the stump of a dying shrub I cut down late last summer. Now hidden under the grass that filled in around it, I stomped down on it, Max in tow, and promptly fell to the ground, cursing and in considerable pain, with Max tugging at his leash. I now have two sizable wounds in the arch of my right foot, and I'm stocked up on bacitracin and bandaids!

...but this is one lesson I refuse to learn. I will be romping around barefoot on my lawn again in no time. Who knows, maybe I'll find a ground hive!!!

Heart music...

Heart music - 8 x 10 acrylic & mixed media on canvas

This particular heart was inspired by my niece's love of music. She sings and dances with wild abandon, and it is impossible not to smile at such uninhibited joy.

Better news than yesterday...

Save - 10 x 10 acrylic & mixed media on canvas

Which isn't difficult!
Avery's cath doctor - Dr. Locke, admitted he'd painted "a pretty black picture" yesterday. Gee, do ya think?
Anyway, After several hours back in the cath lab today, he put 5 stents in various arteries and reports
that they are working as he had hoped. They even took her off the Echmo bypass to see how it was working
and they were pleased. She is back on Echmo for several days to let her heart rest & gradually work on its
own. All of her other arteries are clear and look good.

In the meantime, the big question is why she keeps clotting (while on blood thinners), so that's what her team
will be focusing on in the coming days.

I want to thank you all again and again for listening, praying, and just generally being there for Avery and Cheryl and Mike and my family. I count you all among my blessings every day.

Aunt Kerri