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.}