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,
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.