Friday, December 9, 2011

Ryan House Christmas Party

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!

Sunday, October 2, 2011


     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  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! 

Monday, September 19, 2011

The Angels

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!

Friday, August 19, 2011

Dress-up Jobs

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!

Wednesday, August 10, 2011

Fire Station Fieldtrip

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.

Esra and Estelle Edwards

Tuesday, August 9, 2011

Esra's New Backpack

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!!

Wednesday, July 27, 2011

The Cheerful Giver

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

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

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.  

Wednesday, May 25, 2011

On Walking

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

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.

Tuesday, May 10, 2011

Gaining Ground

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.

Saturday, April 30, 2011

Southwest Wildlife Sanctuary

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!

Friday, April 29, 2011

Meeting Elmo at the Ryan House

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.

Thursday, April 28, 2011

The Learning Tower

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.

Friday, January 28, 2011

A Treasured Story

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.

Thursday, January 27, 2011


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.