But Wherever I Go

Ryan House Christmas Party

2011-12-09T01:29:00.000-07:00

Ryan House hosted our family to dinner, games, gifts and the opportunity for Esra to follow Santa and Mrs. Clause around for two hours. You could hear Esra in the next room, "Hold Santa hand!" And then later, "Sit on Santa's lap." She would break through the group wherever he was. The girls had a great time. And I had the chance to sit and talk with other parents while the children played. We all left with happy feelings in our hearts. What a nice evening. Thanks Ryan House!

Wetsuits

2011-10-02T01:28:00.000-07:00

We have now survived two summers in the desert. And sandwiched in between those summers has been amazing, dry and beautiful desert weather and two little girls saddened that our pool was too cold to swim in.

We have a pool service that comes year round, but we can only swim in the pool for about four months. Once the evening temperatures dip below 75 degrees, it is too cold for anyone to swim, but especially Esra, whose core body temp changes quickly. We wanted to extend our family's swimming season, and we knew we could not afford to heat the pool or buy solar covers. So, why not wetsuits?

We found these O'Neill Toddler Full Frontzip Wetsuits on iSnorkel.com. Estelle is wearing a size 3 and Esra has a size 2. Her legs are as long as Estelle's but her torso is slighter and shorter. We ended up buying some booties to cover Esra's leg. Our rep, Beatrice, was helpful with sizing and care instructions. And our order came fast. Plus, nestled in the packing boxes were tiny boxes of candy. A double treat! The girls are now back to swimming after a few weeks off because of cool weather. They are just loving it.

Now, Sam and I need to get our own wetsuits!

The Angels

2011-09-19T01:27:00.000-07:00

We met angels at the park today. First, it was this girl in the Lakers shirt. She offered to take Esra all around the park. She just pushed Esra's chair and chatted with her through a few laps around the jungle gyms. This girl was old enough to know how to be encouraging and young enough to be playful. And she didn't get distracted by others or impatient with Esra like other kids we meet at the park. Then the younger sister in the orange shirt began to tag-a-long with her scooter. She, too, had a friendly demeanor about her. Not too much later, the little boy with his scooter joined in. The stuck with Esra for awhile. They were quite the crew circling the park. Esra was in heaven!

Dress-up Jobs

2011-08-19T01:26:00.000-07:00

In our home preschool, we are learning about all sorts of jobs this month. The girls are loving dressing-up. So far we have learned about doctors, dentists and mail carriers. We took some creative license, since we didn't have a post office costume, but we did have a play horse, chaps, bandanas and such. So, we learned about the Pony Express. Hey, the curriculum didn't say we had to stay in this century!

Letting Esra play doctor has been such a treat. She loves to listen to heartbeats and take temperatures. But the dramatic play has also provided some much-needed therapy to help her overcome her fear of the blood pressure cuff. She is deathly afraid of the "squeezer," as we call it, since she has been "squeezed" incessantly since her birth to monitor her heart defect. All is well with her heart now, and check-ups are now once a year. However, having the opportunity to process this fear through play has lessened her anxiety. I think being able to play the role of doctor and patient has calmed her uneasiness.

Ah, the blessings and power of play!

Fire Station Fieldtrip

2011-08-10T01:24:00.000-07:00

Dear Firefighters at Avila Beach Station,

Thank you for showing us around your fire station. We have been learning about firefighters at school. We especially loved seeing the big red trucks and the surfboards on top.

We did not think you would mind us stopping by for a quick 15 minute tour. But we felt so special after you spent over an hour with us talking about fire safety, dressing in your gear and letting us use the radios on your trucks.

When we come to visit our grandparents again, we will wave when we drive by the fire house.

Love,

Esra and Estelle Edwards

Esra's New Backpack

2011-08-09T01:22:00.000-07:00

Right before we left for our Fall trip to California, I read this blog post from Rachel Coleman, of Signing Time fame. The post was all about babywearing. In fact, long-term babywearing that becomes toddler-wearing that becomes eleven-year-old-wearing. Rachel and her husband, Aaron, are raising a daughter with Spina Bifida just like we are. Her name is Lucy. I understand completely why Rachel does not post very often. But every time she does, I am inspired and educated. Her insights are always timely and seem to help me through a specific challenge.

As I read this time, she talk about her family's goal to include their daughter in their love of the outdoors, namely hiking. So, their Lucy, like our Esra uses a wheelchair and they don't jive too well with anything but the paved paths of Zion's Emerald Falls or the Grand Canyon's main vistas. The Coleman family hikes far and wide: Arches, Yellowstone, Moab. How inspiring!

Rachel highlighted three different backpacks that they use to ensure that Lucy can enjoy hiking as much as her parents and sister as she has grown. I was please to read that they used a Baby Hawk wrap like us. We enjoy using that one. But we needed something to provide more support for longer hikes. I was so glad that Rachel made the recommendations she did. I saw the Deuter Kids Comfort III Carrier and knew we had to get it. So we did. And we tested it out on a stop while driving near Big Sur.

Sam did not have any complaints with comfort. And Esra enjoyed the soft padding in front of her so she could lean her head forward, as well as to the side, to rest.

We had a great time on our first little hike, thanks to the Deuter. We were exploring San Luis Obispo a few days later with the girls. We decided to bring the pack, too. Esra loved the new vantage point as we strolled to get some milk shakes. Plus, Sam and I got do to something we don't usually get to do when Esra is in a wheelchair. We got to hold hands!!

The Cheerful Giver

2011-07-27T01:13:00.000-07:00

Ray and Rose Brown with the girls

A few days ago, we read about a dear friend and his wife in the Deseret News. The article is by Jeff Benedict and he writes about Ray Brown, a real George Bailey of our day, who lives in Groton, Connecticut.

Ray's health is failing. A diagnosis of cancer in his 86 year old body has taken him to a nursing home far from his wife, who is now home alone. They are marvelous folk who saw our need when we were fundraising for Esra's Trust. I hope we can come up with a way to help them in their time of need.

Mr. Benedict writes:

When a man dedicates 50 years to building a business, it ends up being the main narrative of his life. But the thing I cherish most about Ray is his sense of humor. He used to wear a pin that said: I AM THE MOST HUMBLE. He'd grin when he wore it. People who knew him cracked up because a humble person would never wear a pin like that.

Yet Ray is the humblest man I know. He wore old clothes; drove an old car; lived in an old simple house; and packed a lunch that he seldom stopped to eat.

We love Ray's humor, too. In the winter, we would bundle up our little girls on those cold, Connecticut evenings, and spend the evening visiting with the Browns. We miss being far away; we always enjoy their stories, memories and laughter.

As a lifelong accountant, Ray would spin tales to Sam. Usually they were awe-inspiring number-crunching stories involving only Ray's brain, paper and pencil. While Sam listened, I would sit with Rose and she would tell of her growing up in the Italian neighborhood of New London.

Their authenticity and history wrapped up with the foibles and mistakes of marriage and parenting always had us thinking what our legacy would be one day. Rays' humorous storytelling always balances Rose's details that make the past seem near. Human, imperfect, and so loved. Those two teach us that marriage includes a lot of putting-up with one another. But they keep going in spite of their imperfections or hearing loss.

The news article tells more about Ray:

But he always had time for a laugh. Only Ray didn't just laugh. He bellowed, often so loud that his face would turn cherry red and the skin on his forehead would furrow. Usually he was the butt of his best jokes, especially when things were going wrong.

Ray did my taxes for years. I started going to him when my wife and I first got married. He'd always pass along tips about saving money and being frugal.

But the priceless life lesson that Ray taught me was unspoken. By example he taught me to laugh at life, even when life isn't funny.

Ray experienced his share of sadness. But he smothered it with laughter. Teach a man to do that and it's like giving him a fountain of youth.

The Browns are not only our friends but supporters of Esra's Trust. Their love and devotion to us kept us going even when things were evidently difficult for them. I hope these highlights help you to know Ray and his sweet wife Rose so you may pray for them.

May you be inspired by their goodness, like I am, to be better; more cheerful, more giving.

At The Baseball Game

2011-07-27T01:12:00.000-07:00

Last week, we spent an evening at Chase Field thanks to HopeKids. It was the D'backs and the Brewers. Here are some random thoughts from our night out:

Thanks to the worlds biggest bag of kettle corn, we made it to the fourth inning.

Esra loved clapping and cheering. And Estelle thought the outfielder with the long hair was a girl.

Thank goodness the ceiling to Chase Field was closed, because it was a hot day.

The next time we go, we will have to try something at the gluten-free vendor.

We had about half of our bag of kettle corn left when we got home. {Yes, the bag was that big. And No, I do not regret that I left it on the counter or that Estelle snuck the back into their room or that the girls had kettle corn for breakfast.}

Making Friends

2011-07-27T01:09:00.000-07:00

Esra is no shrinking-violet. Have you ever seen this girl work a room? She will charm you out of your drink, your food, your bag even. Now that I think about it, we have a lot of social appropriateness issues to work on. But to say the least, she is friendly, unconditional, fearless and bossy. And she loves her friends. Here are few of them:

Esra and Cloey at the Circus.

We met Cloey and her family at the Elmo event at Ryan House. Cloey is ten and, like Esra, has the only documented case of a genetic disorder. These girls are bosom friends and they just glow when they are together. So, when Bridget at Hopekids called and said we could spend some time with Cloey's family at the circus, we were thrilled. Thanks to HopeKids and their amazing donor who gave us their skybox and parking for the night. The girls giggled, held hands and gave hugs. Seeing these girls together really was the main event.

Esra, Estelle and Faith pushing/pulling the "train"

This weekend, we went to the Arizona State Homeschool Convention. We visited a booth hosted by veteran homeschool moms. We were blessed to meet a mom who understood what we were going through. She has several children. Three of them are adopted and have spina bifida. Of course, Esra made friends with one of their lovely and equally friendly teenagers, Faith. The first thing Esra wanted to do was to push Faith's wheelchair. So, Esra held on to Faith's wheelchair and grinned while Faith pushed along and they explored the exhibitor hall.

Esra and Anna

Last night, we had dinner with Anna and her family. Anna is a year younger than Esra and she, too, has Spina Bifida. I actually was introduced to Anna's mom through email when we lived in Connecticut. Anna had just been born and because our families share the same faith and endure the same military insurance, our mutual friend thought we were a great match.

We had no idea that we would one day live in Arizona. So, now that the girls have met, they just adore each other. And I always learn from Anna's mom. She has a deep reservoir of faith and perserverance, plus the greatest record-keeping and documentation skills. I always leave conversations with her with a renewed drive to document!

I should have gotten a picture of Anna pushing Esra's wheelchair. Needless to say, Anna endured cheerfully all of Esra's bossing.

Luna's Sea

2011-07-07T01:01:00.000-07:00

About this time last summer, our friends at Cornerstone Productions, a hidden gem housed in Mistick Village Art Cinema in Mystic, Connecticut, hosted Esra and our family to fundraise for her SnapDragon.

Cornerstone and the Cinema donated the proceeds from one showing of an energetic and creative show to Esra's Trust. It was an exciting weekend. Their support made going to England possible.

We wish we were in Mystic this summer to show our support for Cornerstone. We are excited for the launch of their Children's Theater. And, in partnership with the Mystic Aquarium, they are showing a darling play called "Luna's Sea". I am so excited for this family-friendly production. The package-deal with the treasure hunt and tickets to the Aquarium make this a great summertime outing in Mystic.

I hope you and your family will go. Please tell Hunter that Esra and her family wishes they were there to see the show. {Disclaimer: the Trust receives no benefit, except good vibes, for publicizing this event.}

Here's what their press release has to say:

“Luna’s Sea” is the story of a young child who is swept up into a mysterious puppet theater on the beach. Guided by a gentle moon-puppeteer, she journeys deeper and deeper into the ocean and explores the history of mankind’s relationship with the sea. Through the use of dance, puppetry, optical illusions and black light theater, the audience travels from the penguin inhabited shores of Africa through tides of elegant flying sting rays to the dark underwater homelands of bioluminescent animals, and in the end discover that all life on earth is ultimately connected.

The magical voyage of “Luna’s Sea” offers families with children under 12 a unique attraction that both educates and entertains. At the conclusion of the production, the journey continues when guests participate in a treasure hunt through Olde Mistick Village and are then admitted to Mystic Aquarium. During the treasure hunt, participants will have to find the secret Luna logos hidden within the village to receive a special reward. Families end with a visit to Mystic Aquarium where they experience many of the animals that were depicted in “Luna’s Sea.”

“Luna’s Sea” will run every Saturday morning at 10:30 AM a.m. from April 16 through October of 2011 at the Cornerstone Playhouse in Olde Mystic Village. Cost is $25 for the production, treasure map and admission to Mystic Aquarium. Aquarium members and military families received a special rate of $12 for the show and treasure map.

Update: Blame it on the recession, the heat wave or the casinos, but Luna's Sea ended its run last week. I hope Luna's Sea will come back again next summer.

On Walking

2011-05-25T00:58:00.000-07:00

As we see Esra push her limits, we realize that she really does not have any inner limitations. Add sheer will with the amazing speed of technology, and we have one Esra who can do great things.

During my pregnancy with Esra, she was breech. I can still recall the strange stretching made by her little body. She was nestled in my womb as if she were sitting in a hammock. Her head shaded by my ribs and her bottom resting on my bladder. Her legs and feet stretched straight, pointing out towards my side.Her physical movement was slight as she rarely moved or readjusted. But I knew she possessed a great spirit.

So, when the neonatologists predicted her legs would never have any neurological function or feeling, I was puzzled because, deep down, I knew it didn't matter if she did not have leg function, she still had a great purpose one earth and she would accomplish great things. But his forecast has still shaped how I see her and her abilities.

Thanks to Tami, our optimistic physical therapist, she has helped me create a new picture of Esra in my mind's eye, now and in the future. I wanted to share this fantastic TED talk about human exoskeletons, since we at the Edwards house are thinking much about adaptive technology. Plus, we are contemplating what direction to take next. We know wheelchairs will be a primary support for Esra, but we are pleased to have more options for exercise, movement in our home, and beyond.

Sing Something

2011-05-25T00:52:00.000-07:00

In the last post, you read about Esra's new penchant for belting out her favorite songs. Well, we had a moment not too long ago to capture her emerging skill on video.

She is rather shy and timid when she is with others, but when she is alone, she does not hesitate to carry a happy tune. But since we are all in the room with her, there isn't much singing going on. She is trying to conduct the song!

Our little recording session has a part 2 and part 3, if you are interested.

Gaining Ground

2011-05-10T00:50:00.000-07:00

This weekend, I went away for a medical conference in Seattle. I was only gone for three days. But I when I got back, I noticed that Esra looked different. But I wasn't quite sure how.

So, when Tami came for our weekly PT visit yesterday, I was astounded when she said Esra grew at least two inches! Tami explained that the growth came with Esra "walking" in earnest everyday for the past week.

She gets faster and more confident each day. I am amazed as I watch her practicing in her walker/standing frame combo. To think all those unused muscles and bones have gotten the message that they are now required! "Get to work", Esra is telling them.

I am ecstatic for this new dimension in her mobility. We are gaining ground in more ways than one. Because she is becoming the master of her body, her confidence shines and she is speaking more words, more sentences, and she is singing! She won't sing on command, but if you come and sit in an adjoining room, out of site from Esra, you can hear her sing "I am a Child of God" and "Love One Another".

Grand messages for anyone who might be having trouble gaining their own ground.

Southwest Wildlife Sanctuary

2011-04-30T00:47:00.000-07:00

We don't venture out of the paved grid of suburban Scottsdale very often. But today we did. Hopekids invited us to tour the Southwest Wildlife Sanctuary, an animal rescue and education center in northern Scottsdale. Narrower roads, dusty, hilly streets that turn to paths, brought us to an amazing place in a rural neighborhood! We saw owl, fox, bear, mountain lion, wolf, javelina and the like. After the tour, the director and owner, Linda, brought out her trick horse and let the girls take turns riding. Thanks to Linda and her crew at Southwest for letting us come. And thanks, Hopekids!

Meeting Elmo at the Ryan House

2011-04-29T00:31:00.000-07:00

It has been a great day. We just returned from an outing at the Ryan House in Phoenix to meet Elmo. (And this is after going to Sesame Street Live sponsored by HopeKids.) It was a grand time. The whole week the girls have been anxiously awaiting when they could see Elmo and Grover and the like.

As we waited in line to meet the Sesame Street characters, Esra said over and over again, "Sit Elmo Lap". She was just enthralled with everything about this life-size Elmo. Enough so, that after her photo-op, she attempted several times to cut back in line to get another peak at her furry favorite.

I must say, I am always recharged after a visit to Ryan House. The marvelous nurses and stellar staff there adore every child and, as a parent, I feel just as appreciated and welcomed. I feel most gratified by meeting other moms and dads doing the same thing we are. And seeing those tender little ones doing their best with their challenges helps me remember how far Esra has come. One can't forget the special siblings, like Estelle, that amidst their exuberance and willfulness, must balance their life with their challenged sibling. They, too, are exceptional people.

That's Ryan House is really about. Exceptional people being brought together for one purpose, to find joy in their journey together.

Like I said, it has been a great day.

The Learning Tower

2011-04-28T00:00:00.000-07:00

For physical therapy this week, we were lent a Learning Tower.

I have seen it in the Sky Mall catalog on many an airplane flight. It is at 30,000 feet that I remember that I want, want, want this great tool. But, alas, it is $200, or more. Thus, as I snack on my roasted nuts and ginger ale, I conveniently park that lovely little want in the back-lot of my mind.

Thankfully, we get to borrow this forgotten want for awhile. And, boy howdy, does Esra sure love it. She has been able to participate in washing the dishes for the first time in her life this week. And she helped make fresh corn tortillas with our new assistant, Marta, who is a doting grandma originally from Mexico City. We had such a great time rolling and pressing the masa harina. Esra loved being in the middle of the daily work and conversation that comes with it.

But she really brightens up to any chance to stand at the sink. The Tower is such a great bridge for Esra and her innate desire to wash her hands. (Esra is not alone...A few days ago, I read a great post from Rachel Coleman of Signing Times about how she and her husband finally have an accessible bathroom for their teenage daughter with Spina Bifida. Lucy, too, just wants to be able to wash her hands all by herself.)

There is another plus to having Esra in the tower. She is in her standing frame in these shots. She can turn and swivel at will within its square confines. Tami sees this small space as a super introduction to another back-lot want: manuevering with a walker.

A Treasured Story

2011-01-28T23:51:00.000-07:00

The girls' paternal grandfather, Norm Edwards, past away last week, after a two-year struggle with brain cancer.

A commercial fisherman and fisheries advocate, he loved to keep up on the news. Whenever he and Lynda, his wife, came to our home to visit, he always had a bag jam-packed with paper. Reports, fisheries journals, correspondence, magazines, his planner/journal, scriptures, next sunday's lesson plan, and a legal pad. Usually the bag was never opened during their brief stays, but he was always ready to work.

At the dinner table last month, I asked Norm if he had any interest in having us read to him from that trusty stack of stuff, as his eyesight and hand strength declined. He replied, with a grin, "they have been filed away." The filing cabinet being a large trash receptacle. Lynda was standing behind him nodding confidently.

Nothing of import or history was thrown out, but Norm was keen on keeping every bit of print dealing with his love of the sea. We joke with Norm that his office should have been roped off as an archealogical dig, as we frequently endeavored to find the top of his desk hidden under his intricate piles of files. Still, even to his last days of using his hands, and cooperative eyesight, he was managing a pen, trying to write or doing his best to read.

There is lots of cleaning out happening here in New York. Norm's closet, the garage, the basement. Sacred moments as treasured objects pass from one generation to another. As we pack to depart, Sam describes the newest contents of our bags: Norm's workshirts, blazers, pins and tie-tacks. I do not know yet how I will be able to see those things in our closet without stopping to remember.

Norm was a keeper. Truly a keeper of all things that were good. And he adored his grandchildren. And he had a special connection with Esra. In fact, the day Esra was born, she heard and saw Norm before she and I met. Their bond was unbreakable. He would have been excited for her today, as her story of light and love is spread in the most recent edition of BYU Magazine. I wish I could have given him this lovely publication, to tuck into his backpack.

Cousins

2011-01-27T23:50:00.000-07:00

Esra and Estelle had a chance to see many of their cousins this Christmas season. It wasn't the best of circumstances, as all of Sam's siblings came to Arizona to see their mom and dad, most especially their dad, Norm, who was at the end of a two-year struggle with brain cancer. Each of us served in different ways. While Sam's sister served her parents, we helped her by watching her little one. Both of my girls loved having their little cousin to pal around with. Great memories.

I am actually writing this in frigid, snow-bound New York after a glorious week of memories as we said good-bye to Norm. The last six weeks have been difficult as we adjusted to this inevitable moment when he would no longer be with us. With all of Sam's siblings and their spouses here, we have found renewed connection and friendship. It was wonderful to prepare for the funeral together. Sam delivered the eulogy, and we all were able to perform some lovely music at the funeral, as well.

We have been blessed with the great support of extended family. Especially Norm's cousins in Amagansett. We are grateful for their love and generosity as we move through this period of mourning.

California Adventure

2010-11-04T23:46:00.000-07:00

Business brought Sam to California last month, so we jammed in the mini-van and came along for the week. While our Coastie was testing towers, the girls and I toured around, fixed all our meals from the fridges of Trader Joe's and enjoyed the sweet bliss of Pacific humidity gently mixed with dappled sunshine.

The highlights of our trip were water-based. Esra's mischievious side came out when she was free to maneuver the beach on her own. Thanks to Mr. Nick, head of the Parks and Rec in this lovely seaside town, he just happened to have a power beach chair for rent. (Now, when we look at the online photo albums, Esra immediately searches for Mr. Nick! I think he is at the top of her list.) It didn't take her long to figure the chair out since the joystick is the same as her permobil powerchair. She taunted us many a time with high speeds that pointed her straight for the surf. She giggled the whole way as her hand pressed down hard on the joy-stick and she saw her Grandpa or Dad chasing quickly behind.

Another wonder from our trip, was seeing the deep-see divers at the Aquarium of the Pacific, giving a lecture from inside one of the gigantic tanks. The diver-docent was such a gem, as he positioned himself directly in front of Esra. They waved at each other the whole time and she grinned back at him non-stop.

We took the free public bus in Long Beach. It was our first turn on a kneeling, accessible bus. Too bad we didn't have the Snappie. But it was recovering from a spill! Really a nasty chain of events that started when Estelle put an uncapped blue marker in a cup of water and then Esra got a hold of it. Try explaining corroded wires with blue-ish goo to techs an ocean away. One feels pretty foolish. But I am sure they have heard it all. So after, a quick exchange of Royal Mail, email support, and a few evenings of tinkering, the Snappie is up and running like usual. We will be back in California before too long to do some more sight-seeing.

Styling Help

2010-10-20T23:42:00.000-07:00

We had help on more than one front to get this magazine article pulled together. After contacting Shawni, I found some remaining courage and asked Reachel Bagley of Cardigan Empire.

What a confidence booster it was to work with her, a BYU alumna, who inspires me with her lovely and logical fashion blog. Her expertise blended perfectly with her vision as she led me down a path of complementary colors and blended knits.

Thanks to Reachel's resourcefulness and our swift timeline, she put her recommendations online. I love Amazon's Universal Wish List. She had a visual shopping list waiting for us, so I wouldn't forget the light blue, dark blue, coral, and white colors. With my ADD, that's a lot to remember. With the budget pretty tight, she suggested that Sam and I use outfits from our closet and we would buy something new for the girls. She directed my closet search for Sam based on what I had pieced together for myself.
Everything I had is from Target. The dark denim capris are my favorite. I wore them in England and they made me feel like a star. Sam's turquoise permanent press shirt has seen better days. In fact, I think we bought it at Goodwill when we lived in Herndon in 2002! But it worked in a pinch and he was relaxed and comfortable in the 107 degree weather.

I ended doing all of my shopping at Old Navy. The total bill was $45 dollars for two shirts and two skirts. A bit more than I wanted to spend, but I couldn't pass up Esra's pink cowgirl skirt or Estelle's bright blue corduroy mini-skirt.

Thank you, Reachel, for putting your special touch on this project. Here's to January!

Capturing Light

2010-10-13T23:25:00.000-07:00

Last month, we were approached by BYU Magazine to run a small story about me, a Cougar through and through, and our amazing journey with Esra. (Take a sneak peak at the photos here.)

I knew we needed an extra-ordinary person to capture Esra's light. I immediately thought of Shawni. For awhile now, I have been reading her blog and finding inspiration from her own experiences raising a daughter with a rare genetic disorder. And she has blog posts just dripping with gorgeous photography that are effused with light, love, and balance and boldness. I knew her skill behind the lense would make the difference for this article and a few other projects we have at Esra's Trust.

She no longer does professional photography, so I took a deep breath and pressed send on my polite request for her help in making this BYU article stand-out. As a fellow alumna, I hoped that she wouldn't think twice about helping us out. She agreed, and we set a date.

But the real miracle about this all, is that I had never met Shawni before the day of our scheduled photo shoot. She was a gem as she coaxed the girls smiles out in the record-breaking heat of the Arizona desert. We felt at ease as we chatted and got to know her better.

Thank you, Shawni, for such a extraordinary moment where we could celebrate Esra's miraculous story and capture that immense light that she willingly shares with all she meets.

In Their Own Time

2010-10-10T23:17:00.000-07:00

After my visit to the Ryan House, I have been contemplating accessible living. We thought having a one-level would suffice for now, but since the Snappie moved in, we are singing a different tune.

In May, we moved into a lovely one-level suburban desert home. It has an updated kitchen with granite counter tops and a lovely swimming pool. But besides that, it is just a funky 70's era home, with lots of quirks. After four months here, I am regretting the narrow hallways, deep garden tub, limited storage (for our five wheelchairs!), tile floors and difficult access to the toilet and sink with the Snappie in tow.The holes in the wall are growing each day. A mirrored closet door has cracks in it from a misjudged turn. Esra can only exit the backdoor on her own. The thresholds are too high at the front door and garage entrance. The list can go on...

Believe it or not, even with one-level, accessibility is even more of an issue now that Esra is completely mobile. Not only mobile, but gaining awareness, skills and preferences everyday.

With the addition of the SnapDragon, our newest family member makes us think more carefully about the future. We are realizing quickly that our future will include a totally custom home incorporating universal design. Not only accessibility for Esra but for me. (I have a fused spine, fibromyalgia and other troubles.) I can totally visualize a home with no thresholds or barriers, plus lift-systems in the ceiling, a hospital bed, accessible bathroom, wider hallways and doorways, accessible sinks, cabinetry for medical supplies, storage for wheelchairs and devices. Plus, all the great concepts from Ryan House.

Because of my challenges, caring for Esra takes a lot of effort. I love her and I do it. I am strengthened by perspective and patience. I am grateful for modern-day prophets who guide, leaders who lift and a Heavenly Father who is always there. I know things will happen in their own time.

Tour of Ryan House

2010-10-10T23:08:00.000-07:00

This week, I took a tour of Ryan House in Phoenix. It is a short-term respite home for children with exceptional medical challenges and their families. The photo tour online does not communicate the love and warmth that were infused into the planning of this lovely place.

With eight beds, it can serve the palliative needs of children early on in their life giving them a safe and enjoyable place to stay while their parents get a much-needed break. And when the child's life comes to an end, the house can serve as place of true rest for child and family.

But, you ask, why would Esra need this?

With the opening of Ryan House just two months ago, I can now take advantage of 28 days per year where Esra can stay there for consecutive 24-hour periods, get all of her medical needs cared for, have a watchful eye for infections, and there is no out-of-pocket expense for our family.

I was so inspired by this place. After visiting the Ryan House, I began to see the benefits of incorporating features of a hydrotherapy room with a lift, along with PT, Music and Sensory rooms. Ryan House didn't have a climbing wall and gymnastics bars and mats, but I could see them at our house.

We already have some dedicated homeschool space for Esra and Estelle...an accessible dramatic play area, a library/reading nook, an art area and music area. But there is always room for improvement.

Triumph

2010-10-07T23:06:00.000-07:00

Everyday we take one grand round through the house and look for this...

Some would call it Trouble.

But here at the Edwards' house, we call it Triumph. Esra is getting a chance to be herself, her true self. The past eight weeks, I have seen her mind open. Her brain is rewiring and relearning as she navigates, problem solves, accepts, refuses, serves and, best of all, tells us about it all.

We appreciate these little knicks and bends that make Esra's daily exploration possible.

Here she nimbly joined Estelle in playing in the fort before she toppled the whole thing. Estelle was miffed, but, boy, was Esra sure impressed with herself.

Then there are the times when there is a lake of freshly filtered water on the kitchen floor thanks to Esra new found love of filling her cup, all by herself, at the fridge water dispenser. {Note to self: Remember to lock the panel.}

The sweetest reward for all the trouble and such, is having Esra join in at the kitchen counter and enjoy time together. {Esra is helping serve up some lemon slushie during one of our desert hot days here in Arizona.}

Three Cheers for Sam!

2010-10-01T22:52:00.000-07:00

The wait is over.

Sam is being promoted to LT Commander!

What a relief. And what an honor. He has worked very hard this year to excel in his profession and care for us. We wouldn't be where we are without him.

Summer Memories

2010-09-26T22:48:00.000-07:00

We sandwiched our much-anticipated trip to England between visits to New York. The girls were great travelers. And Estelle was smiles most of the time. The exception has to do with me, Esra and Estelle huddled in the corner of an international terminal and a room full of Europeans staring at me. We were glad to be on our way home, that is for sure.

This meant time with family and celebrating Esra's new found freedom, and embracing that golden, dappled with time with Grandma and Pop. We were so glad to get back to Sam's parents house, after our life changing week in England plus a long day of flying back to the States. And encountering a grumpy US Customs official who wouldn't let us bring the Snappie across the border made the day feel even longer. Thankfully, his enlightened and friendly coworkers overcame his bad attitude and we were on our way to sunshine, sand and sleep!

And this is after the American Airlines ground crew told us they did not have the Snappie or our stroller in the cargo bay of the plane. Once we reached the 30 minute mark of waiting inside the gate ramp with two preschoolers, I began to wonder if we had lost the Snappie. At the 45 minute mark though it was all sorted out. The London crew had not informed the JFK crew that all of the Snappie's seven disconnected components (batteries, etc.) and our Phil and Ted Stroller had been neatly crated! In fact, all ten families on board with children were told there were no strollers on that flight when there most assuredly were. We were not crazy but the ground crew thought we were.

We found our wheelchair-accessible rental van, and headed east. Driving further and further away from the airport got us closer and closer to much-needed rest. We floated away in the waves of Fresh Pond. Minnows, jellies and crabs jetted passed our feet. There were sailboats tacking. The girls were so curious to see those little vessels tip over. Then they would witness the student-occupants jump out and right everything and then begin into the wind again. And it was just heavenly there.

We are always so happy to arrive in this magical, back-in-time place. Its a quaint hamlet on the Eastern End of Long Island. Cedar shingles and hydrangeas abound. Over-priced vegetables and seafood are overlooked since they are grown or caught by hands at home. History, heritage and grilled peach s'mores are remembered fondly.

Here in our summer memories, one can find homemade fudge in the fridge and love freely given, freedom-loving lawn signs and bumper stickers, refridgerator wisdom, prayers, blessings and late-night conversations. We are so grateful for this place that we will never forget.

Holding Pattern

2010-09-09T22:46:00.000-07:00

Our loyal iMac G4 finally gave up the ghost a few weeks ago after seven years of faithful service. We have visited the Apple store and drooled on the new Macbooks, but we haven't taken the plunge in buying anything yet.

We first need to find out if Sam will be promoted to Lieutenant Commander next week. We have been waiting on pins and needles for months. There are two potential outcomes: one, he gets promoted and a substantial raise. We will stay with the Coast Guard at least another ten years until retirement. (I am really trying to be excited about another ten years of socialized medicine. I really am.) The second outcome is he gets passed over and we separate from the Coast Guard next May or June with a hefty severance check. (I actually think I might miss TRICARE at that point.)

So, bare with us as we wait out this uncertain moment. One thing is certain, the Trust exists and is working for Esra, especially where we or the Military Insurance and Medicaid cannot help her. Unfortunately, the Arizona Medicaid system wants to have a say in how we run the trust, so we have not received any services from the state. We bristle at any consideration of using government entitlements, but TRICARE has yet to cover our needs for respite and, of course, customized equipment. The state funds would really help. But we will not sacrifice the Trust to the bureaucrats in Phoenix.

Thus, we wait....Wait for our attorney to weigh in on the Trust and waiting for news about Sam's future in the Coast Guard.

Objects of Light

2010-08-13T22:41:00.000-07:00

We've safely returned to our new home in Arizona. Esra is using her Snappie regularly, and has quickly learned to raise and lower herself. This wheelchair has truly increased our daughter's mobility and sense of self. While waiting by the sliding glass door to go outside, she confidently exclaimed, "Ra Ra here! Ra Ra here!" The Snappie is surely the foundation to independent motion and thinking.

Our trip to England has brought to me a marvelous sense of completion. Mixed in with that marvel is admiration for those who supported us through this journey. And we are glad for those who we met along the way. In fact, we even made friends with a band! They were going to London and so we got to chatting in the terminal at JFK while we all waited for our flight to board. Esra scoped out their instruments and she started pointing. That's all the encouragement the lead singer needed.

He is part of a Brazilian band called Candelore. The band's name refers to an object of light (e.g.- candle, torch or lighthouse) in the original Italian. The artist's grace shown in this video signifies to me the grace with which all of our friends have received Esra and helped us to meet her needs. I dedicate this song to our many friends who've helped us fulfill the mission of Esra's Trust.

Beginning Again

2010-08-04T22:40:00.000-07:00

After arriving in England, we discovered, despite our preparation, that we would not be as connected as we had hoped. Our best laid plans to keep a daily online diary were thrown out the double decker bus window. We were forced to enjoy the landscapes and people instead of craft pithy blog posts as the sun set each day. What a bummer that we couldn't solve the connectivity problem. Oh, well.

For those of you who have newly joined Esra's Trust, some background. Our journey began over two years ago. Peggy was eight months pregnant with Estelle. She felt an intense need to help our then 19 month old Esra to achieve greater mobility and ultimately independence. The advent of our newest child only exacerbated her drive to initiate contact Dragon Mobility in December of 2008. Two and a half years later, we have developed skills, encouraged relationships, been taught how to truly give, found strength in our weaknesses and used our God-given talents to make this project a success. We never anticipated the pressure, opposition and poor policy that would block our way, but we did it!

Our hearts are full. Thank you to all who thought and prayed for us while we were away... and your loyal checking of the blog for updates. We feel your love and interest and we will continue to provide details about our travels to England.

The orange wheelchair in the picture below is a loaner from DragonMobility, while Esra's own bright blue Snappie was being customized to fit her. I am standing next to Ruth Everard, watching as Esra gets the hang of driving. Ruth's needs were the inspiration for the initial design of this electric wheelchair, almost 30 years ago.

We spent many days with the charming Everard family and the Dragon Mobility team in Cambridge. During our down time as we got over jetlag or waited for the custom work on the Snappie, we ventured to Canterbury Cathedral, Kings College Cambridge, Westminster Abbey, National Gallery, and the Cliffs of Dover.

Esra, met her bright blue Snappie last Monday. She has gained skill and confidence each day. Her eyes shine with delight as she finds more freedom every time she manuevers the joystick. And, of course, sometimes we had a real dragon in the room. Everyone did their best to make sure both Esra and Estelle were having a good time.

Three Cheers for Esra

2010-07-26T22:38:00.000-07:00

Cornerstone Productions and Olde Mistick Art Cinema gave Esra a spectacular send-off in Connecticut this weekend.

Ramping up to the event this week, we had radio, print and internet media telling Esra's story. And the exposure helped us to have more than 70 people attend. But there were others who came only to donate. One family, who we never got to meet, came across on the ferry from Long Island to donate to the benefit. We are told, as they exited the theater doors, after donating a sizeable sum, gave each other high fives!

Young, old and in-between enjoyed the energetic and engaging show. I especially enjoyed the young man, Braiden, who played the six-year old bearded Cassanova. But the entire company was gracious and so enthusiastic. We got a great cast photo with Esra in their midst, megaphone in hand. We left with a great feeling, sweet memories and ample funds to cover the costs of our travels to England.

A great success! Special thanks to Jon Kodama and Steak Loft for providing boxed lunches. Gina Morin made our posters, and Michele DeLima created our press releases. Mark Dullea created the Esra's Trust logo. The event was truly a celebration of the joy we receive when we extend ourselves in the service of others. Three Cheers for Bill Dougherty, Hunter Charnow, Karl Gasteyer and the whole cast and crew!

Great Media Day

2010-07-21T22:37:00.000-07:00

A lovely local story was featured in The New London Day today.

Plus, Sam arose before the sun here in Arizona to do a live interview with Lee Elci at WXLM. I wish we had a recording. He did a lovely job. {I nominate him to be the face and voice of our little project for the foreseeable future. }

Hope Is Kindled

2010-07-20T22:29:00.000-07:00

Sam and I were married in May 2000. We wanted children immediately and we tried and waited for, what seemed to us, five long years. At the end of the fifth year, all the disappointments of our empty home compounded until we considered divorce. But Sam and I made amends, reordered our expectations of one another and just kept trying. Our hope for the future was restored. But it took a lot of work.

First, we found a wise marriage therapist. Then, we found a compassionate fertility specialist. We entered our sixth year together, rededicated to one another and pregnant. Because of hope, we now had our Esra, which in Arabic is loosely translated to mean "miraculous journey".

Mid-way through the pregnancy, we were told that Esra had the most severe form of Spina Bifida. She would never have a normal life, we were told. Because we were still within the legal window to abort, we were asked not once, but twice if that was our desire. We affirmed Esra's life by saying no both times and telling the doctors to never ask us again.

As the birth approached, more doctors came to us saying that Esra had a genetic disorder incompatible with life. She would most likely not survive the labor. We were advised to begin making preparations for her death. We did the opposite. We proceeded with our life by making preparations for hers. We bought a home with a nursery. We unpacked. We waited, cried, and prayed.

She came four weeks early. She lived. The team at Yale, in preparation to close the opening in her spine, found a serious heart defect. They did not think she would survive the week, but she did. She stayed on life support for eight weeks while heart, back and brain surgeries corrected her many birth defects.

But Esra persisted and thrived. She did the opposite what was predicted. At nine weeks old, she came home. She has grown and so have we.

Life is beautiful.

Our life would be so different if we decided to divorce. Hope has made all the difference.

This hope is a buoy for my marriage and it silently directs me as a mother. It fills me with optimism. It works as an assurance that there are wonderful things ahead. One of those wonders came into our life in 2008. Her name is Estelle Marie from the Latin "Stella Maris" for "guiding star." She is our second child and a marvelous companion and friend to all of us. Because of these two miraculous girls, we know that step by step, hope is kindled, making brighter that guiding star that lights our path ahead.

I also know if I keep doing good and trying my best, this hope will overflow with all the bounty that the future holds. I am grateful for this moment, so I can see where I am and where I am going with my little family.
_______________________
Image by Lewis Nicholson Portrait Design, Washington DC

The Light In Her Eyes

2010-07-17T22:28:00.000-07:00

This is Sam blogging, again.

Peggy and I recently listened to a TED talk by Simon Sinek, where he explained that the great organizations stand out by their ability to communicate their purpose over their product. The Why versus the What. This talk made me think back upon why Peggy and I started Esra's Trust, and I'd like to share with you a few of my reflections.

Esra's Trust transcends a wheelchair. It transcends even providing for Esra's medical needs. Esra's Trust extends to sharing the light which our daughter transmits to us, and to every other recipient.
As evidence of this transmission of light, I share three principles by which my daughter has helped me to see my life more clearly. First, my daughter's persistence (indeed, her insistence) in what she wants shows her faith. Even right this moment, she is seated next to me in her wheelchair, signing and saying "puter"... she has great faith that I will let her type on the computer! Of course, faith is also demonstrated by aligning our wills... so not always does she get the computer! Still, my prayers have been strengthened to be persistent in the things I know are good...

The next principle that has enlightened my life is that "pure love brings happiness". Esra loves everyone, and shares a pure interest in new acquaintances which quickly wins her friends. As protective parents who are aware of commonly-held social boundaries, we are often made uncomfortable with Esra's request to hug every stranger who she meets. Nevertheless, our happiness is increased because our daughter encourages us to stretch beyond our comfort zones with pure love.

"Priesthood is powerful to heal through faith in the Lord, Jesus Christ." This is the third principle that Esra's life has taught to me. Our daughter has had many surgeries, and healed from every one. Once, while we lived in CT, Esra tumbled down the stairs in her wheeled stander. She fell ten feet vertically onto a concrete floor, and landing inches from the woodstove. Peggy and I were both downstairs (thinking that the door to the stairs was properly secured) when the accident occurred. We heard the thumping as her stander bounced down the stairs wildly, and when we found her, we feared that we would lose her. Peggy called 9-1-1, while I administered to her and gave her a priesthood blessing. Still, I was filled with fear as the paramedics whisked Esra and Peggy to the Emergency Room. We were amazed when all tests (including CAT scan & MRI) revealed that Esra had suffered no injuries more severe than a big bruise on the side of her face which disappeared within a couple of weeks.

Esra's life affirms to us (over and over) that life is sacred and eternal. We believe that the family is ordained of God; that every life has potential to do good, and that every person has an eternal identity and mission. Consistent with these strongly held beliefs, then, we believe that Esra comes into this world with a special mission made possible by her special body. She has been healed many times, but never cured of a condition that allows her to accomplish her life's mission.

Peggy and I are determined to help our children fulfill their missions on earth. We are excited to learn and grow with our children as their individual identities unfold, and eventually as our children begin to realize and achieve their potential. We hope that they will choose the very best that is within them.
My purpose in this project has been to help Esra share her light. She will teach us many things during the course of her life, and we need to learn and grow with her. We think that increasing her independence and enhancing her communication will also accelerate her transmission of light in our world. We invite you to join us in sharing the light that Esra's life brings to us!

Images by Chris Jenkins

Making the News

2010-07-12T22:24:00.000-07:00

Esra's story was featured online over at Mormon Times on Sunday. I hope people are inspired by her brightness, friendliness and persistence. But from the looks of her today, her brightness is a bit clouded over. She's been feeling ill lately. We had some concerns about some shunt problems considering she experienced vomiting, lethargy and a high fever over a few days. She has not been her usual self. We took her into the hospital for observation. They said it was more than likely a stomach flu that will last up to five days. She is on the mend and asking for Blues Clues again.

Today we head to the orthotist to get Esra's new back brace and AFO's (ankle-foot orthotic) fitted. These pictures are from her brace casting a few weeks ago. She was such a trooper waiting for that plaster to set. She was hot and uncomfortable as the temperature in the plaster rose, but she didn't complain a bit.

The team at Dragon Mobility is waiting on the braces for a very important reason. Her new seating for the Snappie will be based on her measurements in the braces. And because of her newly diagnosed scoliosis and lordosis, we want the chair to fit her as well as possible.

Dragon Mobility said they needed the rest of her measurements for her seating no later than July 13th. I am so glad the timing worked out. I was prompted to call to get into the orthopedic surgeon one day earlier than scheduled, even though I had that original appointment for a month. That visit got us a referral for the orthotist. We got Esra cast for both braces just in time because, look, here it is...July 12th. Perfect timing.

SnapDragon Press Release

2010-07-06T22:02:00.000-07:00

Contact: Sam Edwards, esrastrust@gmail.com
FOR IMMEDIATE RELEASE
Scottsdale, AZ, July 6, 2010 -- Four-year-old Esra Grace Edwards gasps and giggles at the prospect of flying to a “far-away place” and receiving a new wheelchair. A small family firm in Cambridge, England - DragonMobility Ltd. - makes a unique, fully-customized wheelchair that can change Esra’s life. Built for children 12 months to elementary school age, the SnapDragon provides movement in three directions; full speed at any height; controller programming to suit the needs of the user; custom built seating; a standing attachment and more.

Daughter of an active-duty Coast Guardsman, Esra was born with severe Spina Bifida; neurological, orthopedic, cardiac, respiratory and genetic impairments; along with cognitive, motor and speech delays. Esra does not currently walk or stand, and crawls with difficulty. While she uses her arms to propel her manual wheelchair small distances, without a mobility device Esra barely moves from where she is initially placed. When Esra was 21 months old, her parents starting searching for ways for Esra to move independently and to explore her world. As devout Latter-day Saints, they knew God would provide a way.

After an extensive search, Esra’s parents found Dan and Lou Everard, the masterminds behind DragonMobility and parents of Ruth. Ruth, who has Spinal Muscular Atrophy, is 30, went to Oxford University and trained as a paralegal in London, where she has her own apartment, drives her own car, and lives independently. All this success has been possible because when she was 21 months old her father had designed and built her a special powered wheelchair. This allowed her independent mobility both in a seat that went up and down as well as along, and in a standing frame in which she could move as if she were walking or running. From 22 months old she was confident and highly mobile. It enabled her to develop her personality and social skills at the same rate as her able-bodied peers, and her expectations have therefore never been different from theirs.

A SnapDragon wheelchair will give Esra the independence she needs to thrive and engage in everyday activities all four year-olds experience,” explained Sam Edwards, Esra’s father. “For the first time, she could go to a sink and brush her teeth, or wash her own hands in preparation for a meal. In a social setting she could meet new friends standing up and look them in their faces. She will be able to reach objects on the kitchen counters and lower her seat to ‘run’ in a field and feel the grass pass under her hand.”

No wheelchair made in the USA would provide Esra with more access than the SnapDragon. However, the family’s military health insurance provider, TRICARE, does not cover the cost because the wheelchair has raising and lowering capability. They only cover devices that take a person from point a to point b. In any event, DragonMobility does not accept TRICARE nor does it distribute through U.S durable medical equipment vendors.

The short-sightedness of the insurance industry illustrates why Esra’s is such a moving but disturbing story. For the last 25 years most small disabled children have been left immobile to suffer the secondary disabilities of compromised joints, passive attitudes and low expectations that affect children if they miss out on their developmental milestones. The appropriate technology has been there for 25 years. The research has been done. It is just a failure of awareness, will and finance.

Since this January Esra’s parents, Sam and Peggy Edwards, have been raising money to off-set the roughly $26,000 cost. Charitable donations allowed them to purchase a used SnapDragon and ship it from Texas to DragonMobility’s facility in England, while a separate donation of frequent flyer miles has provided round-trip plane tickets for the family to London’s Heathrow airport.

The Edwards will traveling to England the last week in July. On the way, they will participate in a benefit for Esra in Mystic, CT near their previous military station. They will spend ten days in England training, fitting and customizing the chair for Esra.

Momentum and a Matinee

2010-06-29T21:59:00.000-07:00

There is a lot of momentum now as we implement Sam's expertly crafted project plan. We are almost press-ready for a little event I will announce shortly. And we are happy to reveal our lovely little logo.

We have sandwiched our trip to England with a fundraiser in Mystic, CT and several meet and greets in CT and Long Island. Our first event is a live production at Olde Mistick Village Art Cinemas on Saturday, July 24th at 11am. All the ticket proceeds go to the Trust. And if you buy your tickets early, a Ten Clams box lunch will be provided for free.

Our donors will get a chance to meet Esra and her Snappie at several post-trip events. Those are still in the works, but all of our donors will be getting invitations. {Imagine, we don't know half of our donors...I am excited to meet you all.} You don't have to donate to attend, but we hope you will. You will be joining an amazing group of people.
Please share the news of our progress. Tell someone about Esra today. Life is beautiful, my friends.

Leading the Way

2010-06-28T21:56:00.000-07:00

Here is Sam's first go-around the blog block:

When Peggy first identified the SnapDragon for our daughter, I said "no way". I could not imagine that we could find a way to pay for an electric wheelchair that was as expensive as a car! The chair would not be covered by TRICARE, and I needed to change myself, lengthen my perspective... Really, I needed help!

While visiting with friends over Thanksgiving last year, I had one of those choice experiences that come to friends who seek to listen more than speak. I confided in my friend Erin that I was getting a lot of pressure from Peggy to buy Esra the SnapDragon. He listened to my concerns about the price and many other things. As he let me talk, I realized that my project management skills could be applied to plan, advertise and raise sufficient funds to buy Esra's needed wheelchair. He has continued to provide immense support during this project. A true friend, indeed.

Along with Erin, I called together several friends whose experiences and skills complimented my own. One of our project members, Mark, works for a local newspaper. He listened to our story, and saw the butterfly pictures that are listed as the first blog on this site. He designed a stunning and yet simple logo to communicate Esra's journey.

Other team members and boosters have come through true serendipity. Peggy frequently says, "Open your mouth, and talk about this project!" She tells anyone who will listen or even make eye contact about our task ahead and how far we have come. We don't discriminate, and God has put some incredible and charitable people into our paths because of it. I have met complete strangers on airplane trips who have expressed real interest in Esra, and eventually donated toward her wheelchair. I'll reserve more discussion of these seemingly serendipitous events to a later blog.

Esra's trust in me, as her Dad, has drawn me to see beyond present obstacles to contemplate the life changing benefits which a special wheelchair will offer to my daughter. I am also touched to consider the trust which God and Esra put in us, her parents, to help Esra develop her full potential.

Because of this realization, I see that my true purpose is to enable my daughter to share her "light" with the world. Now, I recognize that God and the Coast Guard have already given me all of the skills that I need to provide for my daughter. I don't take any of the credit for our progress. I'm just glad to be a part of this wonderful work!

Measure Twice...

2010-06-27T21:52:00.000-07:00

In preparation for getting our customized SnapDragon, we must provide measurements of Esra for her new seating. And since the company is across a continent and an ocean, we must do the measuring ourselves. So, I gathered my measuring tape, camera and wits and set about to record Esra from top to bottom.

Not only did I need to get numbers, but I needed to document Esra sitting unsupported for several angles. So, I got the girls raising their arms together and giggling until they were on the floor. But I underestimated the interest of my two-year-old. So, we measured all extremities, worked on our numbers and counting, and then worked on learning body parts. Our session was part work, part school. The girls loved it, and I got to tell Esra all about our upcoming trip to England. Esra gave her trademark *gasp* that she then covers her mouth with her hands as if to hide her excitement. She is so excited to get her new chair. For Esra, words truly cannot express it. And it cannot be measured. You've just got to see it.

Coast Guard in Arizona? Yep.

2010-06-27T00:21:00.002-07:00

Welcome to the Desert Edition of But Wherever I Go!

With our house sold in Connecticut, our family has settled safely in Arizona.

We house-hunted in stages; first Sam came out and then I came with the girls. After almost twenty houses, we actually chose the very first house Sam visited when he came out. But there was a sunken living room and Sam was crest-fallen. But when I saw the house, I just said, "no problem. we will put in a floor." End of discussion.

Hey, it was me and my power of attorney making all the decisions, since he stayed and took care of things in Connecticut. (And there was word he might be providing support for an event in the Caribbean or with the Oil Spill.) A mom's gotta do what a mom's gotta do...

The boxes are unpacked and we are loving the gorgeous weather and friendly people. And, everyone, thank Sam for the GPS that he got me for our 10th anniversary. I would have kept driving to the border if I didn't have that. But I make it home after every outing thanks to that tiny, hunky Australian voice on my dash board giving directions.

Anyway, the house is darling. Estelle calls it "the orange house" because it is literally the color of orange sherbet on the exterior. We have an orange tree and a lime tree and a wall of oleander and towering palm trees backing the pool. The house is all one level, with a gorgeous pool, two yards, an amazing kitchen. Just perfect.

Sam is now in AZ full-time. He began his new assignment this week. It has been nice to have him home in-between jobs. After three weeks of unpacking, there are still a few boxes lingering, and a few broken items, but life is moving forward. So, we are happily nestled in and ready to do what the natives do. (Sam won't let me buy a solar oven yet, though.)

Keeping Busy

2010-06-26T21:40:00.000-07:00

So much has happened since Sam and I started raising money for Esra's wheelchair! I'm just catching up, and I'll break my thoughts into several blogs. And I have invited Sam to share his thoughts too.

First, let me tell you the SnapDragon arrived safely in Cambridge earlier this month. The crating and shipping was a big fiasco for Sam to figure out. But he is now a authorized exporter/importer with FedEx. So, if any of you enterprising folks want to go into business...

I've had a few consultations with the Dragon Mobility team this week, who will help us customize the Snappie and make it perfect for Esra. Well, really there have been many phone calls and applications this week. Department of Developmental Disabilities, Arizona Long-Term Care, Social Security Disability {denial, by the way} plus setting up Esra's team here in the Valley.

Its too hot to go outside, so we are making the best of it as I press on with paperwork whilst Esra and Estelle keep busy with art projects, music making, playing in the water table and getting to know the inner workings of the Ingalls Family. In fact, we are on our way to finish the second season of Little House in the Prairie. If anyone wants to help preserve my sanity, please send the next four seasons!

From A Distance

2010-04-19T21:32:00.000-07:00

The words from a Bette Midler song come to my mind..."God is watching us from a distance." There are so many great things happening that are not coincidence put truly Providence. Every person that is put in our path is either greatly blessing us or they have confessed the goodness that they feel when they see and interact with Esra. Goodness flows from this project to directly help Esra but indirectly is affecting many to be better and do good.

In the past month, our paths have crossed with three influential individuals. They have jumped on board the Esra Booster Bandwagon and we are gaining speed quickly. Their enthusiasm has brought large, anonymous donations, corporate sponsorship, proceeds promised from a local theatrical production (and a cameo for Esra), airline mileage, long-term strategic planning, technological team-building, and immense confidence.

But we don't forget that the bandwagon is already full of fantastic family and friends, school mates and work associates who want to help Esra achieve her full potential. Thank you to all, old and new friends, sweet family members and those we have yet to meet. And because of the amazing financial support we have received, Sam spent yesterday in Texas looking at a used SnapDragon!

A family there in Texas has a child with cerebral palsy that ended up not using it very much. It is decent condition and we have made an offer of $15,000 USD to the family. We will have the chair shipped directly to England and refurbished if the family accepts our offer. (I am hoping the volcanic eruption doesn't stall our plans to go over the pond.) But even if our offer is rejected, we have the funds to begin the order on a new chair. I have to write that again, because I doubted we would ever get to this point...and its only April! We have enough funds now to start the building process! This company is in such demand, despite the economic crisis, they are projecting 120 days out for finishing orders. We hope we don't have to wait that long.

We still need to raise funds for our food and lodging in England. So, please share our story and pass it on that God is watching and helping this amazing effort.

Sponsor Highlight: Think Thankful

2010-04-08T21:39:00.000-07:00

Great news! Today we are announcing our first sponsor, Think Thankful. We are excited to announce this collaboration. This is such a simple but powerful statement, and it is presented in such a beautiful way. I knew when I first saw this logo in a shop window in Mystic that I had to meet its creator. I am so glad I did.

Dreamed up three years ago by a young mom desiring to make a creative and caring contribution to the world, she found the concept of gratitude resonating within her as her daily life unfolded. She wanted to share the simplicity of thinking thankful and its positive impact on ourselves, families and communities. She chose the chrysanthemum to be part of her logo because of the countless petals that fall reminding her of the innumerable blessings that make her life beautiful. The website gives you opportunities to share gratitudes and read other's. You can connect on facebook and twitter to get gratitude reminders and connect with other folks striving to find simplicity and meaning through thanking.

Don't forget the merchandise! Make a statement of gratitude wherever you go with a tote, shirt, cards, aprons and more that are all quite the conversation starters. Half of Think Thankful's proceeds will go directly to Esra's Trust! We are thankful for our darling Esra and the opportunity to connect with inspired and caring people who are doing what they love.

Love, Peggy

2009-08-06T19:32:00.001-07:00

I hope you call or write and when you do here is a little food for thought:

I love to explore Farmer's Markets. I delight in artisanal cheeses and shopkeepers who relish in the delight of their customers. I believe that customer service is not dead. The produce at Super-Walmart is, however, very dead. I know, I was just there. Sad, sad little tomatoes.

I wonder often what it would be like to have my own little farm. Chickens, goats, geese, sheep, maybe even some bees. I've been dreaming about a greenhouse and cold-frames too. But in the meantime, I think I've figured out why my fresh ground wheat isn't rising.

I am contemplating getting an iPhone, or completely designing my own custom paper planner. Not sure which. I have some other projects up my sleeve. Always thinking.

Loving being a wife, mother and domestic artist-in-residence. Embracing creativity, compassion and courage in my journey here on Earth. I yearn to give to the greater good and harness the sweet blessings of wise stewardship, unfettered spirituality and loving service to my God, my family and my country.

House Tour Finale and Going Offline

2009-08-06T18:14:00.001-07:00

We're getting ready to move. So, the internet connection is going away. So, I'll end my house tour by taking you to the library downstairs. There are floor-to-ceiling book cases, a lovely sitting area, gorgeous buttercream yellow carpeting and a tidy spot for all the technology.

I'm sad that this inviting and lovely little space is downstairs far from the activity of my two little ones upstairs. I'll be relieved when we get situated in a one-level house, so everyone can be included in all aspects of home living i.e. folding laundry, piano, games, listening to online radio, reading together. All things that are so much more fun and easier to do in the library.

We still don't have any offers on our home, but we are moving anyway. Because we value our quality of life more than our home, Sam knows that our three-story cottage on a hill isn't working anymore. Sam is working like a dog to keep our realtors, attorney, the bank, his boss and various other official people involved and working for the well-being of this active duty family.

I will probably go through computer withdrawals for the next few weeks. Please call me or write me a letter. You would make Estelle's day! {She can just barely reach the rural mailbox on our country road and she loves to show you she can do it on her tip-toes. So adorable.} I love houseguests, too. Come for some lemonade and we can chat about being creative, even courageous.

I will really miss reading my Google Reader everyday. I feel part of something dynamic and down-right darling. I hope that by moving to a space that doesn't drain my creative and physical energy anymore, I can be as creative and quirky and confident as the ladies I read about everyday.

Virtual House Tour Part II

2009-08-06T17:22:00.001-07:00

The master suite was once the attic. An addition was added decades ago to give a bit more ceiling room on one end of the master bedroom and it gave room to add a second bath upstairs. There is also a large closet that really is just a well-dressed hallway. There is lots of character to this little house. For those of you who have been here, there are some changes that have been made for the better. Staging really does wonders for once's sense of space and ownership. We packed away a lot of extra stuff....And we made do with what had to stage. I really wanted to redo the whole color scheme of this room. The green accent wall was there when we moved in. I did my best to use the linens and accents that I had to make this room lovely and modern-enough.

Like in the hallway, I {sadly, reluctantly} removed our bright and beautiful family portraits and replaced the frames with an abundance of nature shots. I think I'm the only one that is really excited about this little detail...but moving on to the master bathroom:

I lament that there is not a before picture of master bath. Just imagine that at one point in this quirky little bathroom's existence were an infinite amount of pink, black and white squares. On the wall. On the floor. On the trim.

But no more. I found a lovely botanical leaf printed shower curtain that tied the colors of the bedroom with the bath. And that brought the browns and blacks of the bathroom together, as well. I'm so glad that I didn't have to paint the bathroom though it was a lot of work.

Actually, my dad and Sam did. While the girls and I spend the week at my in-laws home in New York, they covered the shiny pink and black tiled walls with numerous coats of epoxy appliance paint. Oh, that stuff is toxic. I was sick for weeks as we tried to get the fumes out of the house. But the torture has really paid off. The bathroom has a new floor, new toilet, and a new feeling. It is peaceful and lovely. I feel so beautiful in this space.

Virtual House Tour Part I

2009-08-03T13:15:00.001-07:00

We have been enjoying summer to the fullest and I've finally organized the virtual tour of our home. Welcome! We fussed and primped, decluttered and arranged, organized, huffed, puffed and then asked for help to get our bright blue Cape Cod ready for listing on the MLS. The house got ready thanks to the hard work of Sam and many friends who helped along the way.

We've had five showings in five weeks and two open house weekends. No offers, nibbles or even feedback from any potential buyers. This is one tough market. But we are optimistic that it will all work out. And we have a lovely little cottage to enjoy in the meantime.

So, I'll start you on the main level in the hallway. This connects you to the living room. The gallery wall in the hallway actually had some gorgeous prints from a session we did last summer with the very talented Chris Jenkins. If you are in Las Vegas, call her! She has a great temperment, flair for color and she listens to your ideas. But I digress. I thought the amazing family shots would be too distracting to potential buyers. So, I dug through all of my still-life photography that I've taken over the three years and found some great prints that capture the colorful flora on our property.

Across from the gallery wall is the entrance to guest bathroom. When we bought the house, this property was the only offering on the market with two bathrooms. Knowing Esra's condition would require us to ask for help from our parents who live far enough away to require a place to sleep, we knew we'd need an extra space to house guests. It is small and quaint and cheerful thanks to the craftsmen-style stained glass overlay I added to the window. {I know, this is a Cape Cod in New England, but I wanted something craftsmen in my house!}

Head down the hallway to the living room. Knowing we didn't have much time to paint or money to reupholster, I redid the color scheme to incorporate what I had. The valances we a quick project and added a bit of flair to the room. I love the copper tones played against the blues hues and white and yellow notes of the furniture. We don't have any area rugs for Esra's ease of movement in her wheelchair. {I did see a lovely rug at Target a few weeks that would go perfectly here. Oh, well. Another house.} The television is tucked in the reformed closet. There were sliding doors, but we removed them and hid all the entertainment gear in the pine hutch.

Stay tuned. The Virtual House Tour will continue soon...

Exploring R.I. Part III

2009-07-11T20:09:00.003-07:00

There are always a few shots from ones cluster of memories that truly stand out. I'm glad I caught these.

I love the elephant shot, because it reminds me of my answer to Sam when he asked "what was your favorite part of the weekend?" And I responded, "sitting on a bench under a tree at the zoo".

Sam and I were at the end of our zoo excursion with the girls. As we rested right across from the elephant's eating area, we snacked on cotton candy and watched our large lunch companion eat its hay.

Then it began to rain. Thankfully, we were protected by the tree above, so, we didn't mind the rain. And neither did the elephant. We all went on contentedly eating and relished in the joys of cotton candy, elephants, moms, dads, and rain.

This sunset is at Point Judith, RI. We had just gotten off the fast ferry from Block Island. I couldn't resist attempting a silhouette shot of the boat in the sunset. I am so wishing for my Nikon D300!

But my Canon Powershot is great in a pinch, sense it tucks so easily in your pocket. The other shots are from Providence, RI; Bristol, RI and Block Island.

Exploring R.I., Part II

2009-07-11T17:20:00.000-07:00

We were invited by a lovely local family to join them at the Bristol R.I. Independence Day Parade. They have an adult son living with a disability that requires him to use a wheelchair. It was a great way to get to know them and get some insights into parenting a disabled child. We got there early, so there was some time to chat. But once the parade started we were focused on keeping the girls entertained.

Wow, what an event! It was three hours long. We heard marching bands from all over the east coast, saluted veterans, soldiers, and sailors. Saw international groups, tea party demonstrators and some wierd, non-patriotic stuff too. The girls clapped their hearts out and were giddy when they saw the motorcycles and clydesdales coming down the way. I will certainly remember to pack hearing protection next time. I've never seen or heard so many muskets and cannons in my life. I think I was more jarred by the noise of the parade than the children were.

Exploring R.I., Part I

2009-07-11T17:19:00.000-07:00

Our 4th of July weekend somehow turned into a tour of Rhode Island. It wasn't planned or thought out. We just went. Sam had an itch to do some traveling, now that the house is on the market and he didn't have a honey-do list to wrangle over the long weekend. He insisted on playing tourist. So, we started simple: The Zoo. (I almost deleted the third picture because 1) I don't remember taking it 2) Its just a mob of people looking at the giraffe, right? Once you find Estelle, the picture is priceless. Her expression seems to say, "What are they looking at? Me?")

On our way home, as we cruised down 95 South, Sam noticed a sign for the Martha's Vineyard Fast Ferry. He wanted to see where it was for "future reference", so we headed of down the exit. The next thing we knew, after driving for an hour and not seeing anymore signs for Martha's Vineyard, we were at Point Judith, one of the most southerly points of the state. This was also the ferry terminus for Block Island. We deliberated as the babies napped and decided to pay $15 for parking, so we could enjoy the afternoon and, hopefully, some dinner on The Block.

Since we chose the busiest day of the year to go to Block Island, we also rode the ferry that had an all new crew. So, the journey over three foot seas took 20 minutes longer than normal. Ugh. But once we got into town, we could feel the holiday pulse moving through the beach air. So many people, bikes, scooters. But walking off the ferry you were immediately in a different world. I love the beachy, cottagey, cedar shakes and hydrangeas feel. Sam and I would love to spend a week at a cottage here, just us.

We ate at outdoor italian place and ate ice cream overlooking the seashore. We found a park on a hill with these knolls that were perfect for teaching little people to roll down them. The look on Esra's face was all we needed to know she loved it. We took the fast ferry home and marveled at our beautiful day.

Seeing the SnapDragon

2009-07-06T12:01:00.001-07:00

Thank you for the gracious and expeditious efforts of Dragon Mobility in the U.K. to transfer their promotional materials to YouTube. There is so better way to understand the immensity of this device than to see it in action.

Summer and Six Things

2009-07-06T11:16:00.001-07:00

There is lots to tell. The house is staged and life goes on. We are enjoying summer so much more now that it doesn't include painting, packing and all the rest. Instead we are enjoying BBQs, zoo trips, love from grandparents, getting to know cousins, dinner on an island, our first time on a catamaran, rolling down hills, ice cream by the bay, swimming lessons, taking the school bus, chasing bugs, playing in the sprinkler, and going to bed contended every night.

Over the week, we'll tell you more about all of our adventures. And give you a virtual tour of our house. Its such a lovely place. Any one moving to Connecticut?

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Six Things:

Sensibly Styled, a new site creating stylish yet modest outfits. I love the blouses they pick too.

Heather Ross inspires me to have magic markers and sketch pad wherever I go.

Design Mom always has a fun book of the week pick. 1000 Times No will be on our next library check-out list.

Diggin Food shows you how to make a super simple squash trellis.

Simple Mom is going back to the basics. I'm looking forward to reading her installments on managing hearth and home.

Ali Edwards writes a touching, mid-year essay on nurture, her word of the year.

Come Tweet With Me!

2009-06-17T19:08:00.001-07:00

When I need a break from the renovating and house-staging, I crawl down to the library tucked away in our basement and read my Reader and Twitter. The blogs and tweets I read are connected to creative and savvy people and I feel inspired to do more creative and savvy things. One definitely has to be savvy for Twitter. I am slowly getting the hang of it. But I like Twitter better than chat rooms and forums and the like. Its short and sweet and there is never a dull conversation. Plus, you can decide who to follow or not follow at any time. This how-to segment helped me figure out the direct message function, which I've been confused about. I still need some clarity on hash-tags...I'll learn as I tweet. So, come tweet with me. http://www.twitter.com/peggybe

Elegance Tomorrow

2009-06-05T23:25:00.001-07:00

Renovation is in full-swing here at our house. The poodle-skirt pink tiles in the master bath are getting ripped out and wainscotting put in its place, plus all the woodwork in the whole house is getting a fresh coat of Poetic Light. (That's the shade we picked out of the No-VOC paint available at Home Depot.)

I was thinking of something for inspiration, and this Oren Lavie song, called Her Morning Elegance, came to mind. Add the great lyrics and strings to this glorious, visual meal, and I have enough creative inspiration for one weekend full of elegance-waiting-to-happen.

Every Penny Counts

2009-06-05T22:11:00.001-07:00

Thank you, devoted readers for sticking by me for so long. I've decluttered the site and am working on some upcoming features. Stay Tuned!

In the meantime, please support our amazing affiliates that have just come on board. {Click on the ads to the right} Order that grain grinder you've been meaning to add to the food storage from Earth Wave Living. Put together a design for some custom shirts at Spread Shirt. Even splurge on some new organic face cream at Our Green House. Or maybe you've recently been concerned about protecting your identity or maybe even your children's identity and credit. Consider LifeLock. Want to spruce up your digital scrapbooking skills or enhance your storytelling abilities. Sign-up for a class at Jessica Sprague. Oh, don't forget, the Fourth of July is coming up. Retire your old flags and splurge on some new ones at American Flags!

Here is my last suggestion: Are you going to see Esra this summer? Pick up a Signing Times DVD (or two) and learn some signs. She would be tickled that you know her language.

There is certainly something for everyone.

Your support of BwIG Affiliates is support for Esra's Trust. All commissions go directly to benefit Esra's Trust and the purchase of her power wheelchair. Every Penny Counts!

Breakfast and Bling

2009-06-01T14:16:00.001-07:00

I was taking some old, forgotten jewelry to the pawn shop. {No, I didn't pawn my Young Womenhood Recognition Award. Tempted...but I did learn that there is no market for silver, only gold.}

Estelle found it on the table and decided breakfast wouldn't be complete unless she was bedazzled with bling. I guess it made the oatmeal and raisins go down better. She ate all of it.

Seeing the Potential

2009-06-01T13:01:00.001-07:00

Our first road trip for the summer took us to the Roger Williams Zoo in Providence, RI. With our new van at the ready and a special butterfly exhibit just opened, we packed a picnic and hit the road.

We had a lovely day together. The greenhouse was bursting with gorgeous flowering plants, amazing scents and butterflies flitted about all around. I never seen so many different kinds of butterflies all in one place before. A great exhibit and worth the trip to Providence. Plus, the zoo was a big hit. The girls loved seeing the giraffes and elephants, plus watching the seal lions swim near them as they peered through the aquarium glass. But we really loved the Flutterby house the best.

{bright thought: This exhibit would be a great location to film an evening news story about Esra. I think the butterfly is a great choice as the brand for our campaign. There is so much beautiful potential in Esra. What a great backdrop this would make to highlight our need to help Esra get her wings!}

What a great outing. As the butterflies supped on their feast of nectar around us, we thought about the amazing potential that, not too many days before, was growing in a cocoon. We are all about potential at the Edwards house. This was a great moment to rejuvenate our focus remembering our purpose and priorities as we gazed upon the realized potential flying around us.

We're so glad we took some time to visit the Flutterby exhibit. There we found color, energy, delight in God's creations, and time together to enjoy one another's uniqueness and indelible potential that is nurtured in our little family.

Happy Summer!

Falling In Love

2009-05-24T18:57:00.002-07:00

Every year, I fall in love with those beautiful blue hydrangeas at the front of my yard. As summer begins, I see the green shoots of hydrangea elegance peaking out of last years faded stalks. We just have this summer to enjoy and then we will me moving on.

Can I have one order of West Coast and a side of palm trees and eucalyptus, please?

I will miss seeing those amazing floppy heads of ocean blue take on a mossy tinge of green by summers end. These brief, glorious reminders of our time here on the country road, will remind me that we must enjoy and cherish people and things while we've got them.

For Memorial Day, I remember those who have sacrificed so that I can cherish every season and fall in love every summer.

President Monson Said...

2009-05-24T18:54:00.002-07:00

I have been thinking upon these quotes lately:

"Our realization of what is most important in life goes hand in hand with gratitude for our blessings.
Said one well-known author: “Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend . . . when we choose not to focus on what is missing from our lives but are grateful for the abundance that’s present—love, health, family, friends, work, the joys of nature, and personal pursuits that bring us [happiness]—the wasteland of illusion falls away and we experience heaven on earth.”

-President Thomas S. Monson, Joy In The Journey, October 2008 General Conference of the Church of Jesus Christ of Latter-day Saints

"[A]re we prepared for our journey through life? The pathway can at times be difficult. Chart your course, be cautious, and determine to study diligently, pray fervently, and live righteously.
Let us never despair, for the work in which we are engaged is the work of the Lord. It has been said, “The Lord shapes the back to bear the burden placed upon it.”
The strength which we earnestly seek in order to meet the challenges of a complex and changing world can be ours when, with fortitude and resolute courage, we stand and declare with Joshua, “As for me and my house, we will serve the Lord.”

-President Thomas S. Monson, Be Your Best Self, April 2009 General Conference

Esra's Story

2009-05-24T18:42:00.001-07:00

Esra lives in New England with her mom and dad and little sister, Estelle. Before she was born, her family juggled prenatal care in Virginia and Connecticut while they managed a move with the Coast Guard. They settled into their new home with just a week to spare before she made her entrance into the world.

Her Spina Bifida was diagnosed in the womb at 19 weeks. {You can see a black line on her back in the ultrasound picture. That is the opening in her spine.} We were devastated, since it had taken us five years to get to 19 weeks gestation. But we were determined to hold on tight to all of our hope that she would be healthy. There would be more prenatal testing offered to us, but we declined it, putting our trust in God. At 32 weeks, we were told that she would not survive birth. Again, we asked for Heavenly Father's help in being prepared for all situations.

She was born four weeks early in Connecticut and she was very ill. She surprised the doctors by surviving, but was immediately put on life support as they stabilized a heart defect. In her first eight weeks of life, she had five major operations to correct her back, heart and brain. Because of the delicate sutures healing on her back, she spent her first six weeks on her stomach. The only way we cold hold her was while she laid on the isolette mattress that was ever so deftly lowered onto our laps or chest. At seven weeks old, we finally got our first good snuggle with her when she moved from the Newborn Special Care to the Pediatric ICU after her heart surgery. Things just kept getting better after that.

She currently attends the Spina Bifida and Urine & Bowel Clinics at Childrens Hospital Boston. There is a host of other doctors and therapists that we fit in when we are in Boston. As for the nitty gritty of diagnoses; she has a the most severe form of Spina Bifida. The lesion was 5 cm at its longest point in the lower thoracic/upper lumbar area of the spine.

She also has:
hydrocephalus or water on the brain corrected by a VP Shunt,
twice-corrected heart defect or coarctation of the aorta
rare genetic disorder of the 6th chromosome called "E.E. Deletion" {named after her}
the smallest traces of neurological function in hips and upper legs
sub-mucous cleft palate
speech delay
obstructive sleep apnea {tonsils and adenoids removed}
neurogenic bowel and bladder
straight cath'd 4x/day
uses the cutest purple razzleberry manual wheelchair
wears braces for the ankles and feet

Esra communicates with American Sign Language. She knows quite a few signs. In fact, she loves to watch Signing Time! and Blues Clues. And she loves to be mobile. She is the queen of wheels. Oh, she loves watching cars, trucks, buses and the like drive by our house. We call her the neighborhood greeter because she waves to all passing vehicles. As for her personal vehicles, she has outgrown her hot-pink crawler but still uses her manual wheelchair and dynamic stander with glee. She is learning how to ride a hand-powered tricycle. But the most important thing of all...She has just discovered the joy of dolls and baby sisters.

Listen and Obey

2009-05-21T04:56:00.000-07:00

I love listening to the radio. Talk Radio, Public Radio, Jazz and R&B on the radio. And I love all the great content that comes from Internet Radio too. My a.m. dial isn't too dependable, so I love going online for Cuban and Mariachi music. Oh, and when my Krall and Bublé cravings hit, there is a great standards station that I turn up loud.

I love listening to the Prophet. I know the direction I receive will always be for my benefit. I just wish there were more places to hear that direction. The Church of Jesus Christ of Latter-day Saints just announced an online radio station streaming directly from Salt Lake. I've enjoyed BYU radio in the past, but I'm excited for more avenues to get inspiring, directing and empowering content.

I love it when my one year old listens to me. And she is surprisingly obedient. For one minute. But after a few gentle redirections, she gets the idea and presses on to a new activity. I hope that when I need gentle redirection, the ideas and motivation I recieve from hearing the Prophets voice more often, will help me listen and obey.

Document Your Weekend

2009-05-15T07:19:00.001-07:00

Spring is in full-bloom, the my little girls are growing and the mini-van has arrived! And to celebrate, I saw this great idea from Ali Edwards (sadly, no relation) about capturing the happenings in your life for the weekend. I'm thinking of this fun project to do with the girls and Sam. Especially since there is so much happening and the newness and fun of the van shouldn't be forgotten. Really lots of blessings to capture and remember for later.

So, here's a glimpse into our weekend from The List:

reseed bare spots in lawn
bake bread
work on Esra's Trust campaign
appointment with Realtor
tour Navy Housing
set-up schedule with housekeeper
call about swimming classes for the girls
connect with C. about Joy School
grocery shopping
transfer everything to Odyssey
authorization req for ENT, CUB Clinic and Immunology and Sleep Study all at CHB
change Estelle's diaper more frequently
get A.'s travel itinerary
consolidate Lists (there are many)
FLYLady: morning routine and evening routine list and the five most important things list
walk for 15 minutes everyday
call to schedule Elliptical machine repair

Esra's Trust

2009-04-30T10:47:00.000-07:00

The blog for Esra's Trust is up and running. You can find information about Esra's need and donating to the Trust. Phew! I'm so excited that we're getting closer to Esra moving on her own.

There have been so many little miracles lately. Too many to tell, except for one. We survived Sam's emergency deployment this week! He only had 24 hours notice to prepare for a very important project that took him onto a Navy frigate near Florida and out of cellphone range. This is not what we signed up for with this shore tour! Oh, there were some hard moments, and even more messy, cluttered, tearful moments. But I came through with the help of caring friends and neighbors. Plus, I learned that I am more resourceful and capable than I previously thought. And I think Sam feels confident that he is a critical contributor to the R&D Center. And that makes me have warm fuzzies because that means food, shelter and insurance. (Insurance for everything but the powerchair, that is!)

Help us have more warm fuzzies by donating to Esra's Trust, so she can do what toddlers do best, explore, create, and have fun!

Spring in a Box

2009-04-24T19:47:00.000-07:00

I read about a perfect way to shoo-away the last bits of winter by sending someone Spring in a Box. Kelly at Make Grow Gather pointed this great site out called Inchmark and its creator, Brooke. She is a book lover and designer. Amazing how she made these Spring-time Capsules that instantly release feelings of happiness and optimism inside of whomever opens it. What a fantastic gift waiting to happen.

Talking Points

2009-04-14T16:59:00.000-07:00

We are ramping up to begin fundraising for Esra and her power-chair and our accessible mini-van. A campaign, really. Sam has almost wrapped up the paperwork for establishing a Special Needs Trust for Esra. So, I need to come up with some talking points, to get my message out quickly and clearly, so people know what we are asking for.

I need to work on answering the following question to get the funding we need for the SnapDragon Power Chair made by Dragon Mobility in Cambridge, England:

Specifically what helps does she need? Most of the time should be talking about who she is as a person ( likes, dislikes), what she has to overcome and very clearly how this wheelchair will change her life.

Currently, Esra cannot sit, crawl, stand or walk. She is completely dependent on others to move her. She uses a manual wheelchair with great confidence, but cannot access things around her, even if she wheels up close to them. She cannot manuever slanted surfaces or hilly terrain. Curbs and thresholds are nearly impossible to clear.

Despite, her dependence on others to move safely and to interact with her environment, she is happy and friendly. However, she has the cognition of a one-year old even though she just turned three, her spoken and signed language is small and imprecise and she is easily distractable. We believe a chair that can give her elevation to peer eye-level, counter and sink-height, as well as access to the floor will open up her world, improve her cognition and language. Also, having a device that will allow to enter and exit buildings, move along uneven sidewalks and roads (like our driveway on a hill) will give her great confidence in herself and an independent self-image. Ultimately, she will participate more fully and gain valuable experience from actively moving through the experiences of family work, home life, play and friends and school.

Still there are my needs, as my back is losing its ability to bend and lift. With scoliosis and fibromyalgia, the physical demands of caring for Esra are mounting. Having a power chair and a ramp-van will vastly lengthen the life-span of my back, or soon I will not be able to stand or walk. Currently, we have a VW station wagon. It is difficult for me to get in and out of and I have to stoop to put Esra and her baby sister into their car seats. Plus, I must lift her 40 pound manual chair into the back compartment. There is a lot of wear and tear happening to my body. The chair and van will change everything!

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As you can see, there is a lot to say. I'm looking for help...even if you are far, far away, I could use some help with getting the word out (and organizing all those words!). Does anyone want to help with brainstorming and, possibly putting together a brand/logo/identity, as well as a blog? Plus, some press releases and posters. Anyone want to volunteer? Please email: peggy6e(at)gmail(dot)com. Thats the number "6" in the first part, not the letter "b". Or if you have my phone number, call me!

An Incredible Journey

2009-04-14T16:55:00.000-07:00

Sam's dad published his first post on his blog, detailing his journey with brain cancer. Amazing...And he has the fortitude to post amidst the fog of chemo and radiation.

Please leave him a comment and tell him that you want to read more!

Strike of Inspiration

2009-04-14T16:10:00.000-07:00

I am typing this post from the public library, since last weeks lightening storm took out our phone, internet and fax. If it weren't for the cell phone on the kitchen table and the glass cook top in the kitchen, you'd think it were 1990 at my house. (If it were the nineties, I wouldn't know about or be tempted to watch "What Not To Wear".) I'm so glad that the distraction of the computer is gone for the time-being. I think this was a strike of inspiration, as I am sleeping better, our family has more of a routine and I am getting more tasks accomlished that have meaning and a physical return of enjoyment in either "scrum-diddley-umptious" or "ah-hah, that's how I do that" or "wow, I did that!"

I really think that I was/am addicted to the email and internet. It is so easy to get sucked in to hours of compelling, interesting, and add-to-my-to-do-list-of-cool-projects-I-see-on-my-Google-Reader, but I still feel unfulfilled when I finally pull myself away.

I was talking to another mom today. She, too, has some technology addictions, but I don't think she quite grasped them, as she tuck her Blackberry away to chat with me. We were talking about the internet and all the great stuff you can find on it and how distracting it can be. We talked about other distractions too. She said she took her t.v. out of her bedroom and is now sleeping so much better, even though she doesn't go to bed until 11pm or so each night. There are still two other t.v.'s in her house. After work, she enjoys surfing the net into the wee hours. (Who doesn't?) And her little son, who is immensely energetic, usally doesn't go to bed until then either. I commended for making improvements in her life and I tried to recognize the healthy habits that I am trying to instill in my life.

Is there more of a problem out there? Is there anyone else out there that feels distracted?

The Etsy Mini

2009-03-24T19:48:00.000-07:00

My urge to create only grows when I cruise the creations of fellow Etsy-ites. There are some very talented people out there. The folks at Etsy tweeted about this fun widget above called an Etsy Mini. You can display either your own creations that are on your Etsy site or your favorite creations of others at Etsy. Since I am not quite there in the creation department, I'll stay happily in the appreciation department for a little bit longer.

Esra's New Tricycle

2009-03-18T14:36:00.000-07:00

Esra braved the brisk, windy and snowy weather a few weeks ago to test ride her new hand-powered tricycle. It is a beautiful thing for Esra. Its silver frame and mountain bike tires will make for many fun outings. Esra was so excited to get in and take ride. It was really cold out though, so she was ready to go back in after only a few minutes.

We are so thankful to our gracious PT for coordinating the application process for this device. These custom cycles are a pretty penny and we are mindful of the funding provided by Save the Kid, a non-profit affiliated with the employees of the local nuclear power station. Thank you!

Appreciating the Future

2009-03-18T11:00:00.000-07:00

This TED talk about the sixth sense device being created at the MIT Media Lab is utterly fascinating. Even if I feel totally compelled to ignore the siren call of the iPhone at the moment, I am intrigued by the premise that we can acquire a sixth sense through creatively organizing our technological pieces. Certainly, the future is now. But I don't want it to be. So, how do I think about starting seeds and being economical and earth-wise when this is such a big idea?

Looking for the Light

2009-03-07T16:22:00.000-07:00

There is a lot going right now. So, I am refocusing, regrouping, especially after having Esra's transition meeting for the public schools. She's going to stay at the college center until September when she'll move to the preschool program in our town. There were ten educators and therapists at that meeting. Thankfully, Sam was there and he kept the tone simple. Plus, he wasn't afraid to ask questions. That helped me but I was still intimidated easily. The meeting went well and all of our therapy goals were accepted but there is one item that wasn't received well. That is the concept of motorized mobility. We understand it, but no one else was excited about it. Its probably because we are so immersed in the care for Esra that its hard to communicate her needs. Or my needs for that matter.

The most appropriate chair for Esra, who is a non-walking toddler, is not available in the USA. It is made and sold only in the UK. We would have to go to Cambridge for a few weeks to have the device fitted and programmed for Esra. It also costs 16,000 pounds sterling. (Currently, $24,000 USD).

Overall, the educators and therapists associated with Esra are baffled why I would want to travel to England to get a power chair for my daughter. {sigh} For example, I had a very terse conversation with the director of Esra's school yesterday. She is adamantly opposed to Esra's use of powered mobility in the educational setting. I wanted to go crawl under a rock after talking to her. I tried to talk to her about the cognitive components that Esra is missing by being stationary and dependent on others. She was unfazed by my argument. But the director does support home use and will help us secure funding based on our needs at home. So, I guess there is a light at the end of the tunnel.

Here is a link to an article giving some fascinating history on the family that brought about the SnapDragon, the chair model we are seeking out for our daughter. This article articulates what we all have experienced with Esra (extreme dependence), what Esra really needs (a device that helps her be independent and inspires curiosity and cognition) and what we are working to get Esra right now (an elevating power wheelchair).

Not an FB BFF

2009-03-07T15:56:00.000-07:00

Even though I do not participate in Lent, the concept of abstaining from a vice for a prolonged period is intriguing. Why not permanently? I have decided to do that with Facebook, mostly and the internet and email, in general. If I had to tell the world my one vice, speeding wrecklessly on the internet super-highway would be it. Not smoking or drinking or recreational drugs but instead....hours and hours wasted on the computer. So, last week, Sam pulled the plug. Literally. Sam actually disconnects the modem and takes it to work with him, because I am so distracted by the computer. He has been so supportive and loving in helping me make a transition to a healthier frame of mind. It hasn't been hard to give up though, and I'm finding that I'm happier when I don't feel compelled to "check" email all the time.

Moreover, I ask myself, "what kind of person do I want to be when the power goes out?" Certainly, I'd be grumpy because I can't wash my clothes in a machine, and I've insisted that Sam get a generator to power the washer/dryer and fridge if and when the power does go out. I think I could be quite happy without the TV, telephone, computer, internet, microwave, etc. And I haven't had any misgivings for disabling my Facebook account a week before their policy changed even more peoples minds about the service.

Honestly, I've been thinking so concertedly about the help and hinderance of technology in our life and how I want to balance it. (And, I am less and less curious on whether an iPhone would really improve my life!) I remember reading a book review in the Wall Street Journal last year about some policy maker intertwined in the poverty struggles of America. The reviewer stated that sixty years ago, poverty wasn't defined by VCRS, dishwashers and microwave ovens. No one had them. The whole scale was different. Now, even lower income families in the US have those things. I want wealth...of time and experience, knowledge and interest. I can't say that now. I feel pretty empty. The distractions of the computer had to go, so I can work on filling my proverbial cup, again.

Messages of Love and Hope

2009-02-17T13:17:00.000-07:00

Here is a fantastic youtube channel that gives inspirational medicine a few doses at a time. I hope you'll watch Jeffery Holland's "How Do I Love Thee". Short and sweet. His words inspire me to be better. I want to be better at loving. Especially loving Sam. He is so good to me. I'll be thinking about this little clip all day and "how" I can love him.

I especially appreciate the beautiful video on Temples and why they are built today. The President of the Church of Jesus Christ of Latter-day Saints offers an eloquent yet simple statement that brings hope to my heart. There is goodness, light, hope and healing in this world. We can find it in the Temple and all that the Temple represents.

Spina Bifida Monday: Know Your Equipment Well

2009-02-16T19:15:00.000-07:00

One of Esra's challenges with Spina Bifida is that she needs some help to sit. She does not walk or stand, but she has become a confident sitter. We are so proud of her. And her strength improves more and more each week, but without the support of her arms or a device, her sitting time can be pretty unsteady. This is certainly true of the bathtime. Since Esra needs some support while sitting, bathing can be quite the challenge. But she enjoys it nonetheless. Despite the slippery, soapiness of a full bathtub, she loves to take a bath. Both she and Estelle had become very proficient at signing "bath". As for me, I couldn't always say that I enjoyed doing the bath. Esra, is basically a big, wet noodle. And crouching over the tub to pull her out isn't getting easier. But I sure do love wrapping her up in her big towl and holding her tightly right after I hoist her out of the tub. Usually, Sam has to take over from that point, though because my back is too tired.

But things have gotten better and now its quite enjoyable, thanks to a Columbia bathseat we received second-hand. We used a bathring for a long time, but she was starting to need a bit more support, especially in the slippery surfaces of the tub. About a year ago, I had seen a bathseat in the Rifton catalog. It looked perfect for what we needed. This one could recline and it had interchangeable leg supports, so one could sit closer to the tub or be at standing height of the caregiver. And I didn't even think that there could be different types of designs of bathseat. So, I told our rehab vendor to order the Rifton.

Now we have a beautiful, only-used-once bathseat sitting in our shed. We tried it once, but Esra was terrified of its reclining motion. {I now know better not to adjust a device while she is in it.} The next time she saw it, she protested. And that was the end of that. So, Esra has continued to sit more and more precariously in her bath ring, her legs to long to get her in or out of it without two people. One to hold her and the other to shimmy her legs in and out of the the rings.

But things are different now. She sits so comfortably in this new seat and she plays pleasantly with Estelle. They splash and giggle. And its so much easier for me to do bathtime. I could use a bigger bathroom to fit her wheelchair and a changing table. Ooooh, a pocket door would be nice too, but those are dreams for the next house. We're just grateful for what we've got.

Moral of the Story: Know Your Equipment Well. If you can't, find someone who does. Never assume that what a vendor shows you is all that is available. You always have the right to research your options, choose a different product and/or vendor and get what works the very best for you.

Creative Friends Save the Day

2009-02-07T14:47:00.000-07:00

As the fifth week of 2009 rolls forward, I want to write about some great people in my life, helping me do great things. My friends have helped me be even more creative and thoughtful, as I endeavored upon quite a few projects already this year.

First, there is Mary. She created the most lovely quilt for Estelle for her birth. So, in preparation for Estelle's first birthday, I thought it would be a treat to give her a doll-size quilt that matched her own bigger one. So, I proposed my idea to Mary, and thanks to the APO/FPO mail system, we got the gorgeous fabric scraps in a weeks time straight from the Philippines. And I think the little quilt turned out very well. Especially considering I'd never done pleats before.

Then there was the need to make a website for Sam's dad. For those of you who have just started reading, his life dramatically changed in January, as he adapts to the affects of a brain tumor. Wanting to help get the news out and share his inspiring and ongoing story, I thought a blog might just do the trick. So, I turned to the heftily talented Chris to put something together. She designed this blog, plus my first blog, Fresh Courage, as well as doing the photography. Really a consummate professional and thorough in every way. She did a great job in putting together a blog design that will represent Sam's dad, the fishermen and, now, fisher of men. (Now to show Norm how to post...)

Then there was Esra's mishap meeting with the concrete at the bottom of our basement staircase. I got an appointment for her in Boston, but I needed to find a place for Estelle to go for the day. So, I called my friend, Pretty Girl's mom, and she gladly took our little wiggle-worm while Esra and I hurried off to Children's. I'm so glad Estelle got to spend some time with her and her children. Her home is so full of beauty, art and learning. She inspires me to be creative everytime I get together with her.

Lastly, I was looking to make a gift for my energetic nephew, Reed, who turned eight this past month. He lives in Japan and he was ready to have his Pop and Grandma (Sam's parents) come visit for his birthday and baptism. He was sincerely disappointed when he learned the news that his Pop's health would change their travel plans. So, I wanted to give Reed a gift of a poem that would help him appreciate and remember the moment of his baptism, as if his Pop was there. That's where my friend Catherine enters the scene. She is exuberant and radiant and she is the best poetess I know. And so, I asked Catherine to help me come up with a poem for the occasion, since, I think, she should have delivered the Inaugural Poem, but I digress! Its called "The Promise Pop Made"...here are the first few verses:

It started out with Pop
A promise made long ago
To always remember God
And Christ's example to follow.

A promise to be true,
to obey and choose the right
A promise to remember
And with faith to fight the fight.

A promise to embrace new traditions
To serve, to help, to give
A promise to seek for God's will,
To repent and to forgive....

The beginning of this year has started out well, even amidst the set-backs. I am working to SEE and BE (my words for the year). These creative projects have helped me do those things. But I couldn't do it by myself, though. Thank you, my sweet friends, for helping me beautify and uplift. I hope I can do the same for you one day soon.

Validation

2009-02-04T19:11:00.000-07:00

An upbeat and creative short film. 16 minutes that will make you smile.

Estelle's First Birthday

2009-02-04T18:36:00.000-07:00

Estelle's garden birthday party was a big success. We had tissue paper flowers and ceiling decorations. Lots of pinks and creams and green. There were delectable cupcakes decorated with hyacinths, daffodils, dahlias and irises. Plus, mini quiches and other scrumptious finger food. Its was an adorable party. My dad was there and Sam's parents and his brother, plus, some wonderful family friends and their daughters. All-in-all, a nice little get-together. And, Esra was so happy for Estelle's great birthday gifts. The doll, stroller and quilt made her very happy. She loves playing with them, too. Especially since she figured out how to attach the stroller onto her stander and take the doll for a walk.

Spina Bifida Monday

2009-01-26T21:28:00.000-07:00

I'll try something new. Every Monday, I will try to highlight some facet of Spina Bifida. Today its a motivational clip on a young girl living with Spina Bifida.

I was talking to someone today about Esra's potential and what the future has in store for her. Its hard to know how her spina bifida will affect her long-term. But that won't stop us from doing as much as we can to give her chances grow and learn. I have a list of ideas in my head of what we can do with Esra after seeing this clip about a little girl born with Spina Bifida.

Just like Esra, her impaired nervous system prevents her from using her legs to walk. Her name is Abigail and her family has encouraged her everyday. They are accentuating every part of today and helping their daughter and sister succeed and find happiness. I am so impressed by Abigail's abilities and her eloquence, daring and strength. She swims competitively and is trying other sports. I would love for Esra to meet Abigail and other children like her.

Musically Inclined

2009-01-24T20:48:00.001-07:00

We just got home from NYC. I can't believe that the $95 parking ticket hidden under our wiper blades stayed put after driving 80 miles an hour for the entire stretch of Connecticut.

My companion on the drive home was Delilah, of course. (Sam and the girls were sound asleep, so, I could revel in all the sappy dedications and requests.) This show transmits warmth and acceptance and commitment. And I always get a little teary after listening for awhile. I remember one particularly difficult night when Esra was a newborn and struggling for life in the Newborn Special Care at Yale-New Haven. I had stayed all day and into the night with her. She was showing signs of a serious infection. Things were so unsure. But my energy had left me and I had to go home. There wasn't anymore I could do.

So, I said a prayer and got in my car hoping I could make the hour drive. I turned on the radio and found Delilah. Her caring voice, tenderness to her callers and uplifting songs got me through the dark and seemingly empty night as I drove further and further away from my daughter. After a few days, things improved for Esra, and after a few more surgeries she was ready to come home. Sam and I were there for her as much we could be. In the moments that I couldn't be there, I always felt buoyed and supported. Looking back, surrounding myself with positive uplifting sounds (music, sermons, affirmations, etc.) always helped me get through the hard moments. And whenever I'm driving on dark, cold nights, like tonight, I always turn on Delilah and rejoice in the miracles that happened then and are happening now for our family.

Going with that vain of Delilah-like songs, I am enamored with this song that Cathy at Bits & Pieces posted:

How The Day Sounds from Miky Wolf on Vimeo.

Cleared for Take-off

2009-01-22T19:19:00.000-07:00

I feel like the last few weeks we've been stuck on the proverbial runway of life, ever taxi-ing and never quite taking-off.

Yesterday, I took Esra to Boston for an acute visit with the Neurosurgeons. They were amazed that she overcame such a huge fall. But they were especially unconcerned after seeing her scans (and her happy wave and bright voice pointing them out of the exam room). We did go over the MRI, though. Since we were there, right? Essentially, Esra's Chiari malformation is prominent and THE reason behind her eating, swallowing, breathing and speaking difficulties. They would surgically intervene, but not on someone her age. Any removal of bone will most likely regenerate in children, so they will wait and watch. But we will need to ever watchful for signs of excess compression. They symptoms are pronounced headache and difficulty in arm movement. Other than that, she is as functional as she can be considering a major part of her brain is being pulled through her skull. An amazing gal, our Esra.

Still, I'm interested in a second opinion.. So, time for some more research. But its good to know that she did not suffer any internal damage from the fall. In fact, I think she fell on her "be more spunky" spot. Her teacher and therapist today commented on her energy and spunky attitude today. She is very happy to be back doing what she loves to do.

Sam's dad is also full of excitement and spunk as he is making excellent progress as he heals from surgery. The brain tumor was cancerous, but all of the tissue was removed. He'll need chemo and radiation, but that's at least a month away. He was transferred to a rehab hospital yesterday and he is optimistic about walking out of the hospital, on his own, next week. He is invested in an intense regimen of PT, OT and Speech Therapy, much like what Esra does every week. His goal is to regain 100% of his function. Now that's spunk!

Well, now time to rest. I am grateful that the anxiety of waiting for one's plane to take-off eventually goes away as the plane ascends into the wild, blue yonder. One can finally feel at ease to dive into that good book or scan the magazines that you saved for this occasion, or just sleep. Sounds so nice.

Tending Part II

2009-01-18T12:07:00.000-07:00

We are home. {between this sentence and what I write next is the following events: Esra falling down the basement staircase in her stander, landing on her face on the concrete floor. Screams, panic, calling 9-1-1, Estelle goes to a neighbor she's never met before, ambulance, x-rays, cat scan, a frightened little Esra strapped to a back board, lots of singing, more screaming, using sign language to thank the radiologists and good-bye (or go-away) to the nurses and doctors, a few vocal prayers so Esra could here them, angels-friends bringing us dinner and then, finally sleep, and we are given the all-clear to go home. No broken bones anywhere, no concussion... Just a scraped up face, a bloody nose and a big old goose egg on her forehead opposite her shunt. Miracle of miracles!}

So, I was sitting at the computer when Esra fell. We were getting the house in order after returning from a short trip to Manhattan, where Norm was admitted. We arrived with girls in tow the night before the surgery. He was so grateful to see the grandchildren. And he was buoyed by the sight of his two bright and strong sons standing on either side of his hospital bed as they administered a Priesthood Blessing to him. {you'll have to read more about that on Norm's forthcoming blog.} We expressed our well-wishes and spent the evening at a hotel on the Upper East Side. The next morning, we got updates from Lynda as Norm was in surgery all morning. We stayed put to let the girls play. I did a little shopping in the city for Estelle's birthday. We arrived at the Recovery Waiting Area and Sam and Zack again spent much time with Norm while he recovered.

So, fast forward to now: I'm still in such shock the it happened but more so that its over and she's okay. After this week, one would think there would be more devastation and grief happening in this little family considering what has occurred. If we were trying to sell copy, I guess the headlines would read: "Cancerous brain tumor leaves patriarch of family immobilized and hopeless." "Paralyzed little girl gravely injured after fall down stairs. Parents devastated." Instead, this is what is being written, "A bright future lies in store for optimistic fisherman and his family. Tumor removed successfully and replaced by immense joy, gratitude and love." And, also, "Brave and cheerful Esra, a little sore but very thankful and happy after frightening fall."

I am learning a lot about tending my secret garden this week. I really don't know where to go next, because I feel compelled to dwell in the negative and be stunned and shocked and tell everyone "wo, is me", but, its not true. If there were a geiger counter for ministering of angels, we'd be off the charts this week. The tender mercies that have come to Norm and Lynda, Sam and I have been watched over and blessed with immense abundance as we work through the events of the past week.

Which secret garden are you tending?

Tending

2009-01-15T18:14:00.000-07:00

I've felt exceptionally lonely and exhausted today. I've been thinking a lot about which secret garden I've been tending by dwelling on my state. {see Thomas S. Monson quote in the left sidebar.} I can't help it. But, thankfully, I was helped by some sweet friends. Their service helped buoy me through some of the tougher parts of the day. But I've been home mostly for the past three days. And its been cold. Those things don't help either. The girls don't have snowsuits or a sled that can fit the both of them. I'm thinking its time get all of those things plus some snowshoes or cross-country skis, so we can get out and enjoy the cold weather. Its hard though to do much outside with Esra. She can't move in the snow easily and she gets cold quickly. I wish I had an assistant to help me shop and remember all the things that the girls and I need.

Sam is diligently assisting his parents. He has been such a help to them. The appointment in NYC gave them much insight into Norm's condition. The composition of the tumor is unknown, but possibly connected to his previous melanoma. Plus, it seems to be located on the perimeter of the brain. So, Norm is scheduled for open brain surgery on Saturday. The neurosurgeon feels that it is best if Norm is admitted and remain under observation until then. Their younger son, Zack, is flying in to be of assistance tomorrow. I think the Lord has really prepared the family for this. He was all set to go to grad school this semester, but some paperwork was lost, or some other bureaucratic excuse. Zack has undergone multiple open heart surgeries, so his experiences and devotion to his parents is appreciated.

Sam and I spent an hour trying to figure out how to get our little family to NYC to visit with Pop and Grandma before the surgery. I certainly don't want to drive, but Norm and Lynda weren't anticipating being admited, so they need things from home. So, someone needs to drive the minivan back to the South Fork. Plus, Sam's car is still at his parents house. A very tricky thing. Someone will be spending a lot of time driving. I think Sam is going to drive back with the van, then drive his volvo back to our house, then we'll all drive together back to Manhattan.

I'm considering just putting the girls into the car now and driving there, because I don't have anything else better to do. And the last two nights, I've stayed up past midnight anyway. But then we have to figure out somewhere to stay. Anyone have any extra hotel points they can spare?

The Fork in the Road

2009-01-13T07:43:00.000-07:00

Well, Sam and I now have a better idea why we are not moving this spring. We are in the Lord's hands everyday. Even though our plan has encompassed to preparing the house to sell and move West, we were not surprised or sad. (Even though I pine for a warmer climate in both people and weather.) But we can last another 18 months here. Especially since two days after learning the news that the Coast Guard had more applicants than job openings, we learned that Norm, Sam's dad, has a brain tumor.

We don't have much information as of late. But he's lost much function and feeling in his left side, especially his arm and leg, and a CAT Scan and MRI show a mass in the brain applying pressure to its motor portions. We are hopeful that they can find a competent neurosurgeon to help excise the mostly benign mass as soon as possible. Fishing season is only a few months away, you know! He has a lot to look forward to and his personal perspective is positive. He doesn't feel this loss of movement is a loss of momentum. He still has his mind, his voice, and moreover, his abilty to communicate his knowledge, passion and expertise through the written and spoken word. And there are innumerable people ready to make his physical self is where he needs to be. As Esra shows us everyday, it takes effort, patience and love to entrust yourself to others. But she does as much as can whenever she can. She IS happiness. And she adores her "Pop". We're sure she'll share her wheelchair tricks with him so he can get where he needs to go while he recovers.

There is much to rejoice in and I think having a spirit of gratitude brings optimism and comfort as we pursue this new course with Norm. Sam is on his way now to their home on Long Island, to get things ready for his parents to arrive. Norm and Lynda were on their yearly winter vacation, visiting loved ones all over the world. They had just visited Alaska and had stopped in California for a time before continuing on to Japan. Thankfully, the symptoms occurred stateside and they suspended the remainder of their trip and are coming home today. They arrive tonight and Sam will be at the airport in NYC to pick them up. He will spend the rest of the week there making necessary preparations and assisting Norm in whatever way. Plus, he has his first consult on Thursday with a neurosurgeon in NYC and a second opinion at Yale with one of Esra's neurosurgeons. Sam will help as much as he can especially in helping Norm complete his "to-do" list. It is long and full of love for the things that bring him happiness: family, sharing the gospel and fisheries (in no particular order, of course).

We suggested to Norm that creating a web-presence through this journey may be beneficial for him and all who benefit from knowing him. Using the web may give him an elevated platform to share his ideas, projects, personal recollections and testimony of what he holds the most dear. There is much for him to do and well-positioned blog or website may help them also answer questions about his health status, progress, and outlook for the future. He has a great tool at his disposal and a willing team of children waiting to dispense assistance in broadcasting his net to share, lift, educate and comfort. They too want a way to provide care, comfort and show commitment to their parents by supporting them in any way they can.

We look forward with hope. Surely, fresh courage. But wherever we go, we know God lift's us and guides us.

All Things Bright and Beautiful

2009-01-07T17:52:00.000-07:00

The beautifying continues in the playroom today. I painted this hymn saying on an artist canvas. Its a little more "fruit crate"-ish than I had planned, but it will do for my purpose of staging. Whether my house will remained staged like this for 18 months is a question to be asked another day.

I also took a map of the world and of the U.S.A., cropped them creatively and fixed those crops to canvas for some real quickie art. I think the room now has just the right touch of color and art without overdoing it.

Once the decorating was all done, we sat (or reclined) and enjoyed the brightness and beauty of our little house and family.

My Word

2009-01-06T09:55:00.000-07:00

As many of you know, my previous blog, Fresh Courage, lies dormant in a peaceful winter hibernation. (It will reawaken!) But my thoughts on courage and refreshing my own personal supply is a daily work. This is especially poignant as I feel like there is more to my life now that I am emerging from the darkness of postpartum depression. Courage was my watch word last year, my every breath, remembering my purpose for being me. Now, as I think on my word for this year, I wanted to go beyond courage. I feel clearer, there is more light around me, and I want beautify this world through love, art and service. As I think on this new direction, other words that have come to me: compassion, creativity, clarity, Christian. As all of these attributes require great vision both figuratively and literally, and I feel up to the challenge to lift my lantern to the darkness and step out into the unknown of living and loving. I decided that my word for this year will be SEE.

Life is a Stage

2009-01-05T14:15:00.001-07:00

I am in the throws of staging our little cottage in New England, as we are hoping to move soon. As I am trying to be more of an optimist this year, I am not going to be thrown off by this morning's news that we probably will not be moving this Spring. 2010 is STILL right around the corner. And we WILL be moving then. (Well, 2009 surprised me, so I'm not going to get lazy thinking this year is going to last any longer than any other year.) There is still a lot to do. And I've done a lot already.

I just finished the dining room with new valances, cell blinds, wall bling, and a little rearranging and decluttering. I'm in the midst of consolidating the girls' room with the playroom, plus creating some colorful map art coordinated with the word "All Things Bright and Beautiful/All Creatures Great and Small". (I know, I love the hymns!) I've also started putting new vinyl down in the bathroom, because the old stuff had to go...I'll post pictures soon.

We'll have to reassess my frenzied pace to stage this place. But in the meantime, here's to making the most of what you've got. Bloom where you are planted! (Speaking of planting, I am so ready to start planning my garden...a field of sunflowers, raised beds full of tomatoes, herbs galore, onions and leeks, garlic, bok choy and spinach and I would love to have some chickens and a goat. I wish we were moving to California this year! But maybe it'll have to happen here next to our little cottage.)

Christmas at Home, Part II

2008-12-28T19:02:00.000-07:00

I wanted to do something a little different this Christmas. I am envious of those who can spend days baking every kind of cookie and confection to present with a plate and a carol. I just don't have that kind of energy. I felt my culinary contribution this Christmas need to be based on Christ's ministry on earth. Focusing on Him resonated with me more than any other. So, I pulled out my most prized recipe book from Alaska and got busy.

I love this charming book. It has recipes from my high school librarian, my violin teacher, my favorite Alaskan artist and many Alaskans who I've read about and admired. So loved is this little sugary wonder, it opens automatically to my favorite recipe: Fiddlehead Ginger Crinkles. I don't let them get crinkly, so I would actually call them "chews."

And they cut great with a cookie as the ginger chews would be my "fish." (I would think a nice round porgy or snapper-like fish would have worked, but the only fish cookie cutter I have is a king salmon. It worked though.)
For the loaves, I made some mini-pumpkin variety from my beautiful Bon Appetit cookbook. Since we were delivering this to fellow Latter-day Saints, I also included a brief perspective written by one the leaders of our Church, President James E. Faust. Its from his book, Finding Light in a Dark World. I enjoyed reading his words because his outlook provides a sweetness that will not go away. One bite of this morsel of knowledge and we are reminded of why this season of remembering Christ's advent and arrival into the world is so important.

He wrote: "In our time, we seem to have forgotten the miracle of the five loaves and the two fishes in favor of the miracles wrought by the mind and hand of men. I refer to the marvels of modern transportation and the increasing sophistication of all scientific knowledge, including the new electronic highway. We have forgotten that this amazing knowledge comes to mankind only as God chooses to reveal it, and it should be used for purposes nobler and wiser than mere entertainment. This knowledge permits the words of the prophets of God to be bounced off satellites hovering over the earth so it is possible for much of mankind to hear their messages.

"With this great knowledge has come also some skepticism about the simple and profound eternal truths taught in the miracle of the loaves and of the fishes—namely, that God rules in the heavens and the earth through his infinite intelligence and goodness.

"We are also to understand and remember that we too, like the lad in the New Testament account, are the spirit children of our Heavenly Father and that Jesus is the Christ, our Savior, and the Redeemer of the world. We believe that in the centuries following the establishment of his kingdom upon the earth, the doctrines and the ordinances were changed, resulting in a falling away and the loss of the keys of priesthood authority from the earth.

"A miracle even greater than that of the loaves and the fishes was the vision of the Prophet Joseph Smith, who saw the Father and the Son in the Sacred Grove near Palmyra, New York. Subsequently the keys, the priesthood, and the saving ordinances were restored in their fulness, and Christ's church was reestablished in our time. Thus God has again fed us and filled our baskets to overflowing."

Elf Yourself Link

2008-12-28T12:59:00.000-07:00

We had so much fun this Christmas, we decided to dance!
(Thanks, Liz, for making us look so darn cute.)

The Cup Trick

2008-12-28T12:32:00.000-07:00

This is my first attempt at editing and posting with our Canon Elph. Pretty easy...I tried a bit of editing too. Its very elementary, but fun. The girls were eating lunch at Grandma and Pop's house on Long Island. Sadly, they weren't there, but I'm sure they were enjoying the squirms and wiggles of Isabelle in Alaska. Here's what they missed:

Christmas at Home, Part I

2008-12-23T10:26:00.000-07:00

We are relishing in the sights, sounds and smells of Christmas. And we're enjoying staying home for it all. The snowstorms and windchill here in the Northeast have made staying indoors so attractive and inviting. We've only gone outside to play once. Its just too cold, especially for two little people who don't walk. Still, we're enjoying making memories and remembering (and rejoicing) that we got all of Esra's appointments finished before winter officially rolled in.

So, my favorite part of Christmas is pulling out the Nativity scenes. Especially the one I bought in Jerusalem. I bought this set specifically for my future home and family. Esra finds satisfaction in inspecting the pieces and putting them in place. So, while the girls were keeping busy, I did a few artistic shots of this olive wood set modeled amidst the bows of the tree and lights.

I should have known that they were getting into trouble...It was too quiet!

Also, Christmas came a little early here, as the IKEA elves couldn't resist assembling things right after arriving from Sweden (via New Haven). The girls got a little table with two chairs to go in their playroom. And I got a gorgeous, indispensable, been-eyeing-one-for-twelve-months kitchen island. Oh, its a thing of beauty. And more storage!

Almost Finished

2008-12-23T10:09:00.000-07:00

The new blog design is almost done. Just a few tweeks here and there plus making the sidebar headers. Chris did a superb job with the colors and style...See it here.

Boston and Blessings

2008-12-17T18:35:00.001-07:00

The trip to Boston went well. Yep, Esra made it to the MRI! Oh, frabjous day! Calloo! Callay! They did diagnose her with Chiari (KEY-ar-ee) Malformation, Type II. We could only assume she had this condition, since many children with Spina Bifida do. But we needed the imagery to confirm it. The Neurosurgery Attending didn't feel that she needs surgical intervention now, but he said he wanted a second opinion from his colleague who oversees the Spina Bifida clinic. We'll be going back for clinic (and ENT, Pulmonology and, possibly G.I.) in February. Anyone want to come?

So, we decided to do things a bit differently this trip: we took the train and I played tourist, briefly. The girls were fantastic travel companions.

We traveled very light, only taking a suit case and the Phil and Ted stroller. We didn't even bring Esra's wheelchair.

It all worked...While Esra slept off the anesthesia in the ICU, Estelle and I explored the Freedom Trail and enjoyed the city and all the seasonal sights and sounds. We didn't savor too long though. The wind bit our noses and nipped at our heals all the way back to Children's.

Now, we are settling into a nice winter's rest, after ramping up for six weeks doing our most vigilant to keep Esra away from germs and foreign bodies. Staying sequestered at home was the best way to stay well, even though she still went to pre-school and we attended the Sacrament (Communion) portion of the Sunday Services. We even made a button for Esra to wear at church. It said "Please don't touch me. I'm feeling sensitive today." It wasn't very successful, as the only people who wanted to touch her and love her are the ones who can't read anything without reading glasses.

Our list of tender mercies is growing...First, there were the gymmats and corner seat. Then it was the tuition for preschool, Next, it was the wagon. Now, a group of three families is giving Esra a sand/water table for Christmas. And our application to a local non-profit to fund a hand-powered tricycle was approved yesterday. (There is even talk of acquiring a used power-chair from a little girl who has outgrown it. More to come on that soon...) Most of these items have come to us through a very intuitive and giving woman. She sees our need and helps us fill it. The other items have also come to us through equally hard-working, dedicated professionals and community memebers who care about Esra's well-being and success. We are blessed.

Bravo!

2008-11-30T20:52:00.000-07:00

The concert was a great success...the girls even sat through most of it. And I survived standing for over 90 minutes. It was tough. I could see Sam and the girls from where I was in the choir. It was neat to see their smiling faces in the audience. And they made lots of friends around them. They started squirming right as the Hallelujah Chorus was about to begin. (Note: we only performed the first part of Messiah! Much shorter than the all three parts. I was so tired and we only sang six pieces. But the soloists were such a treat!) It was such a great way to start the Christmas Season.

Deck The Halls, Everyone!

holiday project

2008-11-30T10:00:00.000-07:00

Visit my new creative blog to see what I just finished over the holiday weekend...

Oh, and don't forget, I will be singing in the Handel's Messiah at the Noank Baptist Church is tonight at 7:30pm.

Also, I will be performing O Holy Night on the violin this coming Friday, Dec 5th at 7:30pm at the local LDS Church's 2nd Annual Choir and Creche Festival.

The Wheels are Turning

2008-11-25T22:16:00.000-07:00

I have begun to research the pros and cons of a power chair for Esra. So far I have received great resistance from her early intervention team to pursue one so early in life. But my belief is that exploration is learning and cognition comes from investigating every aspect of one's environment. Certainly, Esra is limited in her exploration because of her devices. I want to include her in family work and that just isn't possible with the devices we have. Last year, I stumbled upon a fantastic chair that is made in the U.K. Its called a SnapDragon...I have yet to convince Esra's therapists about its advantages.

The main reason for disagreement from the team is the need to build her upper-body strength. But with the mobility emphasis put on building physical capacity, what is being done to ensure the building of her congnitive and emotional capacities, without continued, almost constant one-on-one supervision? In her devices, she must constantly be monitored. Nothing stays in her hands for long, everything falls or is thrown to the floor because there is nothing to support, and nothing can be accessed with out assistance. And what about learning to bake and wash dishes, sweep and dust, set the table? Certainly wonderful activities for a toddler to participate in. With that in mind, I feel strongly that I should proceed with my intuition to, at least, learn more about the advantages and disadvantages of a toddler-driven power chair.

For those of you who do not know, my daughter has spina bifida, hydrocephalus, Chiari II, speech delay, uses pigeon ASL, cleft palate, heart defect, sleep apnea, neurogenic bowel and bladder (incontinent), can't sit independently, is non-ambulatory (doesn't walk or stand) and overall is about 6-9 months behind her peers. She goes to an early intervention pre-school twice a week for four hours each day. She is in class with normally developing peers. Currently, she uses a manual chair (Quickie) and a mobile dynamic stander (Rifton). Both are servicable, but certainly they only help to move her and put her in place to play at a surface that has nothing underneath it. Even though she is greatly constrained by the bulk and radius of the chair and stander, she can navigate a room with ease. She has excellent hand-eye coordination and can manuever 360 degrees through most flat, home and community environments.

So, back to the SnapDragon. There are only a few families in the U.S.A. that have one of these chairs. I found one. And I'm so inspired by the parents and their little boy. The mom is an artist. She is an exquisite print designer and letterpress artisan. Her combinations in line and color are pleasant and peaceful. I so want to emulate that. Especially, because she, too, is dealing with the needs of a physically dependent person, who daily needs can eclipse much of ones desire to create. She's got my wheels turning, in her ingenuity to find the right tools to take care of her little guy and in keeping her artistic drive spinning.

A New Design

2008-11-20T15:08:00.000-07:00

Peeps, exciting things are happening here at BWIG.

Chris Jenkins, a very talented Las Vegas-based photographer and creative mind, is putting together a blog design for me. I'm so thrilled. There is a sneak peak at the finished product on her blog. Since the title is based on song about a very charitable body of water, I wanted to incorporate blue and water into the new design. I think it will all go nicely with the sessions shots that Chris took of our family while we were in Las Vegas this summer.

So, while we wait for the artistic alchemy to come together, I'll show you what is happening at our house:Enough said...oh, plus Esra's runny nose has returned. (I'm debating whether or not to tell the MRI folks about it this time. We've rescheduled her brain and spine MRI five times now all because of this perpetual runny nose...I'm under-the-weather too. So, once the clouds part around my head then, well, we'll see.)

Thank"fullness"

2008-11-14T20:00:00.000-07:00

My friend Catherine, who I met at the BYU Jerusalem Center, has an endearing list on her blog that she entitled, Thank"fullness". It has many wonderful things on it that I think most sane, quietly living person puts on their thankful list. But she also highlighted things that I hadn't considered being thankful for because took them for granted. (And they are just fun and quirky and put a smile on my face just thinking about them.) Like...

The occasional finger lick while baking

The circle of fifths

Never having a lack of things to do

and

Challah bread.

What are you thank"full" for?

A Little Article I Wrote

2008-11-14T19:45:00.001-07:00

So, yesterday, while Sam was nodding off in the JetBlue terminal in San Diego waiting to catch his flight back to Boston, I ventured out with the girls into the misty darkness and went to Spouses Club. I haven't done anything like that for awhile. There were a good number of ladies present, as well as a few other children there, so Esra and Estelle were kept busy. But still, I did more chasing of them than participating in the meeting. However, I did go for a specific purpose: to suggest a charity for them to support this year and also give some ideas on fun activities to do next year, too. I gave my two cents and had a nice time. They are all great ladies and dedicated wives to their men in uniform. Anyway, they also asked for article submissions for the monthly newsletter. I thought I'd share what I came up with since it was fun to write about places that I go to happily and frequently.

Around Town by Peggy

I am not too earthy, but I am concerned about my health and the well-being of my family. So, lately I have been seeking out more organic and holistic products, buying local and supporting local businesses. Here are two places that I've discovered.

The first place, Treehugger Organics, is a fun and funky new salon. Located off of State Street in Downtown New London, this hip salon is run by a wife-husband team. They specialize in all-natural products, no chemicals and a great fun vibe. They even compost all the clipped hair at the end of they day! I love going there and chatting with Gina, the owner, about family, homeschooling (salon-schooling for her), farmer's markets, gardening, home design, IKEA, etc. They also have a fantastic boutique of local artisan soaps, hair products, plus Gina's custom-made baby slings and clothe diapers. You can even book an appointment online. Treehugger is truly down-to-earth. Check it out.

The next place, SE CT Therapy and Wellness Center, has greatly improved my oldest daughter's health, who was born with life-threatening birth defects and now has multiple delays and uses a wheelchair. If you are feeling like the NACC leaves too much to be desired, then fill-in the gaps with the Center's services offered in Uncasville, just up Route 32. This, too, is a family-owned venture run by a mother and her two sons. They provide both conventional Physical and Occupational therapy, as well as Cranio-Sacral therapy and other holistic therapies. My daughter participates in Cranio-Sacral therapy. What a difference it has made! She has regained more leg movement and sensation after six months of treatment. The Center also offers homeopathic and fish oil nutritional support. They also have a board-certified Naturopathic Doctor and Acupuncturist, as well as a Massage Therapist. Even better yet, they take Tricare Prime and Tricare Standard! What's not to love?

Treehugger Organic Salon
860-444-6452
13 Washington St, New London
www.treehuggerorganic.com

SE CT Therapy and Wellness Center
860-848-9157
303 Norwich New London Turnpike, Uncasville
www.therapywellness.com

To and Fro

2008-11-09T22:28:00.000-07:00

We have some great news. We're free! Free to roam and play that is....For the past two years we've been trying to overcome living in a three-story house thats on a hill while raising a child using a wheelchair. Comings and goings at our house has been difficult to say the least. In order to get to and from the car, we'd have to enter the road. And our little country road is very busy! So, our solution was to install a walkway from our porch to the driveway.

Sam really did a tremendous job, with the patient guidance and support of my dad. (Thanks, Dad, for the support to get this started!)But he also received some indispensable help from six really great guys from the various wards we've been associated with. I think he feels comforted that he can call each of them "friend" before he calls them "brother". (Thank you Brad, Miguel, Spencer, Joe, Chad and David for all the time you took away from your family and personal endeavors to assist our family.) Sam learned a lot from this project and I think he is very pleased with the outcome.

Come on by and take a walk down the path and invite Esra to come out and play.

The Dealio

2008-11-06T14:52:00.000-07:00

So, here's the dealio on why I took down all the posts on my first blog. Well, I was getting some very strong impressions to take my children's names and pictures off the internet. First, I should have know better when I chose a blog name with the word f-r-e-s-h in it. Silly Peggy!

Initially, I just tried changing everyones names to aliases. They were so cute, too. (I was Pearl, Esra was Ra-Ra, Estelle was L.L. and Sam was SuperGuy.) But even that change didn't feel adequate. Thanks to the Feedjit widget, I could see the search phrases that were bringing up the blog on engines. I didn't get good feelings when I saw search terms that were not looking for entries about sleep apnea and the cutest ankle-foot orthotics ever. These sites were from places in Africa and Europe. So, maybe it was just bad English. But, talk about icky feelings. I had to respond. And the only way I felt comfortable was to take down all of the content associated with the blog.

So, I chose a less nefarious title based on another lovely song, "Give, Said the Little Stream".

The verse goes, "I'm small I know, but wherever I go the fields grow greener still." Really sweet. And if some demento comes to this site looking for who-knows-what, I guess I should just give up the whole blogging thing. But I totally understand now when my friend Jessica does her own MS Word version of a blog that gets sent out through email just because she does not want her children names or likenesses on the internet. I completely admire her for blogging anyway.

Well, that's the dealio. On to dinner.

Insanity

2008-11-06T10:35:00.000-07:00

I've been doing a few things differently lately. Not a lot, but enough. (Didn't Albert Einstein say, " The definition of insanity is doing the same things over and over again expecting the different results"?)

First, welcome all of my FC Readers. You are the best! Today is a new day and I'm glad you're here. Format and design kinks are still being worked out but its time to press forward. So, we're going a different direction by splitting the blog into two. But Wherever I Go (BWIG) will peak into the everyday life of my family, while FC will highlight people, events, writing, photography, art that encompasses the journey to find courage and keep it fresh.

Back to my topic...Sam was released from his calling in the Spanish-speaking congregation on Sunday. What a relief. I feel like the flood gates of creativity have burst open. Knowing that he will be home and available is helping keep my anxiety to a minimum and heightening my interest in doing other things beside waiting for him to come home. Still, I think medication is in my future. But it can wait just a bit longer.

First, I got a fantastic digital point and shoot from my mom for my birthday. So, I'm actually enjoying taking pictures again.
Here are some pictures from this week:
Sam is installing a pathway so we can get to the car without going onto the road. He is working with Miguel, a friend from the Hispanic ward, who is a very talented brickmason.
Esra spotted this carriage in the shed and loves for Estelle to push her around in it.
While Sam works outside, Estelle like to watch from the screen door.

Second, I signed up to sing in the Handel's Messiah. Three rehearsals (Nov 16, 23 and 30 from 4-6pm) and one performance (Nov 30 at 7:30pm). Its at the Noank Baptist Church. Come and sing with me!

Third, I test-played some violins and bows this week. My favorite was a John Cheng 1737 Guarneri Violin and a Guy Laurent Two Star Bow. It was so fun to try out new instruments. I was lucky to inherit my violin from my Grandma Peggy, but I've never chosen an instrument to fit me. I've played the same instrument since I was seven years old. As of tomorrow, that's 23 years people! Sam says he'll help me buy a new violin and bow when I'm ready. How exciting.

Fourth, I researched local violin teachers in the area. I found a teacher at Thames Valley Music School which is on campus of the college where Esra goes to school. The teacher's philosophy resonated with me. She supports playing an instrument for pleasure versus soloing, getting young children involved in the music of our lives and the ever-nagging back problems that come with a life-time of practicing.

Fifth, I'm performing a piece with a talented mom and pianist in church on Sunday.

I hope I don't make myself insane by adding all of these things, but I think we're going in the right direction.