Thursday, November 4, 2010

California Adventure

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.

Wednesday, October 20, 2010

Styling Help


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!

Wednesday, October 13, 2010

Capturing Light


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.

Sunday, October 10, 2010

In Their Own Time

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

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.

Thursday, October 7, 2010

Triumph

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.}

Sunday, September 26, 2010

Summer Memories



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.

Thursday, September 9, 2010

Holding Pattern

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.

Friday, August 13, 2010

Objects of Light

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.

Wednesday, August 4, 2010

Beginning Again

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.

Monday, July 26, 2010

Three Cheers for Esra


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!


Wednesday, July 21, 2010

Great Media Day

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. }

Tuesday, July 20, 2010

Hope Is Kindled

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

Saturday, July 17, 2010

The Light In Her Eyes

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

Monday, July 12, 2010

Making the News

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.


Tuesday, July 6, 2010

SnapDragon Press Release

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.

Tuesday, June 29, 2010

Momentum and a Matinee

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.

Monday, June 28, 2010

Leading the Way

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!

Sunday, June 27, 2010

Measure Twice...

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.

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.)

Saturday, June 26, 2010

Keeping Busy

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!

Monday, April 19, 2010

From A Distance


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.

Thursday, April 8, 2010

Sponsor Highlight: Think Thankful

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.