Monday, December 24, 2012

Cheer and Joy

Wishing you and yours a new year that is full of cheer and joy, no matter your circumstances.

Wherever You Go, may there be peace.  May you find strength from Jesus Christ, our Savior and Redeemer, who can do impossible things.

Merry Christmas!

Love, 
The Edwards

Friday, November 30, 2012

The Reward Store

The end of the week is much-anticipated for Esra and Estelle.  Thanks to Krystal, my dynamite assistant!  She takes care of the morning routine at our house, so I can rest.  (Lyme Disease is just that way.) But flying solo left Estelle, the four-year-old, more opportunities to be uncooperative and, well, four, since Krystal main priority is caring for Esra.  The situation required a way to get Estelle to be more cooperative and respectful.  

Hence, the Reward Store was born.


Here is Esra's morning routine list.  Estelle's is similar. All the pictures represent actions of body and spirit. I love that Krystal added a heart to represent love and respect.  But the one difference is in the dollar that they get paid.  Krystal printed up her own homemade currency customized for each child.  One has a red-headed mermaid on it and the other has a red puppet/marionette.  So, cute!


Esra just got paid!  She is inspecting her money.  Is it real?



The play money has been a great training tool for Estelle.  Especially helping her learn to keep track of something of value.  At first, they were scattered in various pockets, purses, and bookshelves.  Now she has one spot to deposit her riches.

Another result of the money has helped focus Estelle in the morning.  As I am exhausted most mornings, I cannot participate in the discipline and guidance of how the morning runs.  So, Krystal is able to remind Estelle with the incentives of the Store by reminding Estelle if she wants her dollar that day.  This gets Estelle back on track and finishing her responsibilities.  Woohoo!


Each day that that complete their entire morning routine, then they get one dollar.  And at the end of the week, the Reward Store opens for them to use their money on snacks, jewelry, coloring books, coin purses, and even a doll that is worth almost two weeks of dollars.  Since each item has a specific price, they are learning about saving and planning as well as being consistent in doing their routine each day.

Yay for Krystal!


Saturday, November 24, 2012

Thanksgiving Found


Keeping things simple this Thanksgiving, I decided to focus our time together in "finding" our blessings in the little things in our lives. 

With that, the girls and I hopped down to Hobby Lobby and found some darling little baskets to hold our "found" delights.  Estelle eyed some glittery, sequined pinecones and Esra found some seashells.  

In our wanderings during the rest of our day, we discovered vintage bottle caps, blossoms from our bouganvilla, and some shiny baubles.

Setting the table, I used our silver flatware that I bought on eBay when we were first married.  We have never used the fancy stuff with our four and six year olds, but it this year seemed like a good time to start.  So, out came the china settings that we got for our wedding.  We still only have five settings, but it was just four of us that night, so no rush for paper plates!  Pulling out a rarely- used green damask tableclothe that I made from the bargain bin, the girls were ready to help set the table.

With fresh-pressed apple juice made in our juicer, we did the rest of our meal from what we could rummage up from our pantry, food storage and freezer.  Honey Mustard-glazed chicken, kale brussel sprout salad, mashed potatoes, wild rice and cranberry-clementine sauce. Unfortunately, I put too much vanilla stevia in the cranberry sauce.  Bleh! But there was so much goodness to share, we did not miss it (that much)!

As we ate, we talked about our blessings with our tiny finds as catalysts.  Sam and I found that it was great exercise in stretching our creativity.   The conversation was sweet and simple.  Our centerpiece was bit abstract, totally different, and next year we will have to add candy coins and shelled nuts.  Here are some of the things we counted as our blessings (some expected, some not):  

the salty sea, wheels,  root beer, Jesus, pinecones, machines that make our world work, light, each other, mirrors, diamonds, love, forgiveness!





Sunday, October 28, 2012

An Open Heart to Heaven, Part II

The theme from Elder Kikuchi's BYU Devotional talk (from lasts week's blog post) has stuck with me.  What did you think when he demonstrated our physical closeness with Christ?  That visual representation of the clasped hands illustrated to me how physically close sanctification brings us to Christ.  How close? He is right there next to us.  But when we are not worthy to be in His presence we must step away, releasing that clasp that kept us close.

In this Three For All, I have found a few more resources that have and are helping me return to that joyful hand clasp with Christ.

Esra and me, on her Birth Day.  Seven weeks and five operations later, we got to snuggle again.  
1) In the talk, The Touch of the Master's Hand, President Boyd K. Packer talks about sin and change and the vitality brought about by becoming one with Christ.  In the midst of my own physical pain, I learned about spiritual pain and how the treatment plans are similar.

2) This Mormon Message about Lifting Burdens helped me have courage during a difficult beginning.  My sister-in-law, Jessie, shared this video with me during the first week of my Lyme Disease treatment.  I watched this over and over again.  Tears flowed as I began to feel so many emotions. And just like when Esra was diagnosed with Spina Bifida, the feeling of fear was the strongest.  As I trusted more, the fear faded.  That empty space gradually gave way to courage as I remembered God provided  a way for Esra, and He would do the same for me.

3) Become Your Best Self is a courageous life-list from Danny and Mara Kofoed's A Blog About Love.  Mara's list has had such an impact on how I am proceeding in my healing process, as she describes the different ways she used to find healing, to make lasting change and to more fully share herself with others.  Her list has no fear; it is dynamic and real.  Where else can you find Viktor Frankl, Oprah, James E. Faust and Lousie L. Hay all in one list?

Saturday, October 20, 2012

An Open Heart to Heaven, Part I

My best smile on my
first day of Lyme treatments
As I started my Lyme Disease treatment last year, I felt exhausted and empty.  I was physically and spiritually sick. {I was really trying smile in this picture.} I really did not know where to turn.

When I found Elder Kikuchi's messages, I felt connected to his simple dedication to the work of God.  His tender stories and connections to Christ's teachings spoke to my heart about how I could find real change.  Plus, his life experience in Japan illustrated the depth of his character and the continual change that the Gospel brought to his life.

Here are three things {a radio interview, a sermon and an article} that came into my path as I searched for direction:

1) An inspirational man of faith: Listen to this radio interview with Elder Yoshihiko Kikuchi who lived in WWII Japan and serves as a representative of Jesus Christ sharing his experiences about forgiveness and sanctification.

2) In a fireside sermon, Elder Kikuchi outlines tangible answers to this question: How do I open my heart to heaven? He outlines three things: Hold a personal morning devotional. Immerse yourself in the scriptures.  Purify your life through the Savior’s sanctifying and atoning power.

3) In my hardest moments during treatment, I picked up my church's worldwide magazine and Elder Kikuchi's words were a balm: The Healer's Art.

Dear Readers: What will be your one thought, thing or change to devote time and attention to this week? 

Three For All

Introducing Three For All, a new feature at But Wherever I Go.  Motivating me to get my spiritual self in gear and creating a foundation with you to share common themes in our varied faiths and experiences.

Every Sabbath's Eve, I will share three spiritual appetizers that will help us feast more deeply together during the Lord's Day and also throughout the week.  Really this list is a for me, as I want to improve, to grow, to glorify God.  And most likely, so do you.  Why not share?  I'd love to know more about you and your journey.

And by the way, I am a Mormon.  I Know It.  I Love It.  And I am trying hard to Live it.  Whether our faiths have similarities or not, I hope you will feel encouraged to stay, to take and eat.   Dear Readers, please join me as I start this devotional practice.  You are invited to impart upon these morsels with me, as I journey through healing and applying the blessings that come from observing the Lord's Day.

Craving to Create

In February 2011, not long after my father-in-law passed away,  I was diagnosed with late-stage Lyme Disease.  With that came hours of treatment-time away from home, connected to an IV and lots of time to read and think.  I had high hopes that child-free time would mean productive time; blog posts written, journal caught up, emails boxes emptied.

I quickly learned that would not be.

Treatment was tiring and, sometimes, poisonous as my body unloaded its toxins and infections.  Still, I recorded my encounters with the spoken word, media and spiritual buoys during a difficult time.  I had hoped to write about it all to preserve some cathartic connections made in the hardest moments.  But the writing about what I felt, read and thought never made it to paper or pixel.

Eighteen months later, I can gratefully say that I am not worse physically.

But my disease has not drastically improved either. The brain swelling and seeing stars has gone away, but I am still so tired.  I lose my ability to stand by dinner time and I seem to have a hard time remembering things both near and far. Calendars, clocks, appointments, mail, telephone calls still intimidate and overwhelm me.  The list can go on.  But I am functional enough to read to my daughters, to tickle them and when it's laundry day, I fold and Sam puts away.

I am craving to do more, to create, even if it means that we do school on the couch all week!  In order to get better, I feel compelled to press forward beyond this creative drought and do something!

Stay tuned for some new features at But Wherever I Go!  And catching up on the past year with pictures and news of our family!

Wednesday, September 26, 2012

Less Sitting

Yesterday, I had a hard day learning more about the origins of Esra's bottom blister and her future mobility.

Even when the skin completely heals, we really have to be cautious with that new skin.  It's integrity is different, weaker even than the original skin.  I was even told that because people die from skin breakdowns like the one Esra has, that we have to be take extra measures with prevention.

It will take me a few days to digest that news.

But I am trusting of the source of the news.  A company rep for ROHO, products for pressure sore seating, came to the house to evaluate Esra.  She observed her seated, as well as in her mobile stander.  She could see right away that the blister came from sheering as Esra is continually repositioning herself while sitting.  


Those little tiny back and forth movements are sheering the layers of skin together.

This rep is a veteran occupational therapist who has associates all over the western world.  She also travels internationally looking for the best devices and tools for disabled people.  She knew so much!  But her perspective was overwhelming because she validated how hard raising Esra really is.  And all the things or absence of things that are contributing to her skin breakdown.  She highlighted the need for transfer boards, padded seat for the toilet system, and restricting Esra's scooching on the floor  She did compliment me on my amazing kid-centric home.  I guess that is some consolation for all the things that we don't have.

I did ask her about sheepskin.  She did not bring up sheepskin until I asked about it, probably because most people do not have the funds to buy it out of pocket and it is not part of our culture, as it is in Australia and New Zealand.  But we actually use it quite a bit.  Esra sleeps on sheepskin, sits on it in the Snappie and also her carseat is covered with sheepskin as well. Yesterday, I realized that I was not utilizing it enough.  The one thing that is not covered is her manual wheelchair!  And that is where she has been spending most of her time.   She also needs her booster seat at the table lined as well.

I feel sad that there are so many loose ends in the care plan for Esra.  It is hard, hard work and so many things get overlooked, forgotten or put by the wayside because we don't have the time or energy to do it.   I desire to do more for her...at least for now she will be doing more standing and less sitting!

Saturday, September 1, 2012

Happy Everyday

Esra was admitted to hospital late Thursday night for a skin infection.  She is having exploratory surgery today because the antibiotics are not working.  Despite the discomfort, she is happy and friendly as usual.

It seems like every encounter she has with the Phoenix Childrens Staff, they say "Is she always this happy?"  And I respond, "Always!" 

She has to be in serious distress to change her mood to partially cloudy or stormy.   For example, she was a bit uncertain about riding a horse during our Hope Kids-sponsored weekend at Whispering Hope Ranch a few weeks ago.  She kept saying "stay with mommy."  I put her in the saddle despite her hesitance.  She still was unsure as she put her arms up for me to take her back into my arms.

But then our friend and Executive Director of HopeKids, Bridget, came up with her camera and coaxed Esra to smile.  She immediately beamed with her big smile for Bridget (she has those HopeKids trained!) and the lead on the reins started the horse forward.  Esra was brave the entire time as Bridget walked by her side.  After a few laps through the arena, she returned to me with a smile.

We can all do difficult things.  Esra is a fabulous teacher of how to find happiness each day despite the difficulties.  And to show it.



Saturday, April 14, 2012

Staying Put

We made a hard decision this weekend.  We decided to stay put.

The rental market just did not have what we needed.  The houses are older, so there are sunken rooms, tiny bathroom doorways, pools without gates, and carports.  The scenario just did not work for us.

So, once we unpack and do some spring cleaning, we will start a project to fundraise for our wheelchair accessible van.  As for the daytime aide, AZ Long-Term Care wants me to prove my disabilities again since my physician letters are a few years old.  I guess they don't know that scoliosis and the hardware used to control it does not get taken out.  Lyme Disease, of course, is a whole other story.

With the moving sale, bake sale hosted by our homeschool co-op and various donations, we have raised $1000 dollars towards Esra's van.  Awesome!

Wednesday, March 14, 2012

Moving Sale

The #1 and #2 items on our Current Needs list are coming closer and closer to reality.  However, we are going to need to move closer to Sam's work to make those things happen.  By eliminating Sam's commute, finding a smaller home and selling both vehicles, we will be able to pay for an accessible van and a daytime aide.

So, we are having a moving sale this weekend at our house from 7am to noon.  Please share our Craigslist ad with your friends: http://phoenix.craigslist.org/nph/gms/2901406979.html

We could sure use some help.  Do you have things you would like to donate to our sale?  Can you help us out with making signs or setting up?  

Email us at esrastrust(at)gmail(dot)com

Bicycles of Phoenix

It has been an amazing week of blessings.  With the clothe diapers, we can cross off two things from our Current Needs list!  Let me tell you about Esra's new bike.

The past few months, I have been searching for a bike trailer upgrade, since Estelle is now riding a two-wheeled bike (without training wheels). So, I needed to get creative on how to go from a two-child Burley trailer to a one-seat bike-like trailer. It needed to have a recumbent bike feel to it.  A high, supportive back with a five point harness.  In my searching, I spotted the Wee-Hoo Bike Trailer somewhere online. 

I inquired around town with the bike shops to see if any were available in a showroom.  No one had one in-stock or they stopped carrying it because it was too specialized.

Thankfully, we found Bicycles of Phoenix, which just opened near our home.  We told Andy, the owner, about our needs.  He was smitten by Esra's radiant smile and he made the order for us.  Andy said it was all about karma.  It wasn't but a few days later, that we got the call from Andy that the bike had arrived. After our test ride, Esra spent the rest of the week singing and cheering with joy, so excited for her new bike.  

Bicycles of Phoenix does not specialize in adaptive equipment but they do have excellent customer service.  The showroom is brimming with some gorgeous beach cruisers.  And Estelle has her eye on the Puddin' 16, too big for her still but it doesn't stop her from trying.  She takes a ride on it every time we come in.  Plus, there is a great vibe in the shop.  

So, folks, give Andy a call or a visit.  602-404-2453.  4848 E Cactus Blvd. #120 Scottsdale, AZ.  Buy some new bling for your bike, get a tune-up, or buy one of those gel-seats you have always wanted.  Buy something big or something small and tell them that Esra sent you!


Tuesday, March 13, 2012

A Gift from a Friend

Let me tell you about blessings! We have been given some lovely gifts this week.

Thank you to our sweet friend, Kimberly, who organized a little fundraiser to get Esra some new clothe diapers.  Thank you to her local and online circle for donating to this.

Because Esra is incontinent for the foreseeable future, we clothe diaper.  This eliminates long-term exposure to plastics, chemicals and such.  But even clothe diapers don't last forever.  After three years, our current set of diapers have just about worn out.  Leaks abound.  And the hard water here in the desert doesn't help in stripping them and getting the soap residue out.

With all of our money going to medical expenses, and AZ Long-term Care only paying for disposables,  we were hoping this set would last bit longer.  Well, I will just say, this new set came just in time!!!!

Kimberly, you are the best!  Kisses and Hugs all around!!!

Friday, March 2, 2012

Come What May and Smile

We are finishing up our month learning about dinosaurs.  I wish getting them to smile together for the camera was as easy as making those bright, purple headbands!

Despite the silly faces, we are having a hard time.  At times it can be difficult, especially me, to put my trust in the Lord.  And it can be easy to forget Him when I feel so much lacking.  

Even though we have enough food, shelter, clothing, and employment, my challenges seem to overshadow our one truly abundant gift: perspective.  Within the past few months, I feel more exhaustion and mental fog as Sam's 60-70 hour work week continues, our respite care is 20 hours too litle and Esra's challenges are growing. 

It is all taking a toll, chipping away at my resolve to be....well, to just be.  (Our daughter has been diagnosed as "failure to thrive" again.  She needs a G-tube, a Chait tube, as well as extensive dental work and another pair of eartubes.)   

I am being taught so, so slowly, that our perspective can help us decide beforehand how to handle adversity.  "Come What May and Love It" could just be my new inner resolution to keep me going when the days seem to never end.  How we respond to our challenges is the key.  Elder Joseph B. Wirthlin explains:


I am grateful for this message by an Apostle of the Lord to remind us why challenges come.  As we do our best to overcome, please pray for us.  Also consider visiting our Current Needs page above for more information.