Get used to the Stairs

Our home is complete (mostly), and we are thrilled!  It makes my heart flutter every time we pull up. This home is the fulfillment of a dream, full of beauty and accommodation.  Davey zooms up and down the ramps with freedom.  We all have our "favorite parts" of the home, and I can't narrow mine down to one. The Parade of Homes is happening now, and every day I get questions from friends, family and strangers asking about the parade process and where we purchased things.  I'll answer some of them on the blog.  Keep in mind, this is just our experience.  I'm sure it is different for everyone. Why did we build a parade home?  ·           Some of the subcontractors offered a discount price because their products or work would be featured.  It doesn’t necessarily mean it is cheaper to build a parade home, but it is possible to get more for your money.  For example, appliances.  We wouldn’t normally buy Bosc...

We celebrated the 4th of July in Yellowstone.  The paved paths make it a great destination for wheelchairs.  The only time we left the paved area was to swim in the Firehole River.  I carried Davey down the short but steep path and biffed it, lesson learned.  We stayed at the Old Faithful Inn which provided scenic views of the geyser from our bedroom and also our favorite past time...searching for the ghosts that haunt the hotel such as the Headless Bride.  The scariest sight was Maggie's face after she was bitten by a few blood thirsty mosquitoes.  It swelled up and required a trip to the clinic for medication.  Our trip was a slow paced, beautiful vacation. Next up was Davey's seventh birthday.  He invited a few friends to join him at Classic Skate for a night of grooving at the rink.  While the other kids got tired, injured, thirsty, or bored, Davey could "skate" all night.  He is lucky to have such good friends...

It happened again.  My phone won't allow any more photos because I've maxed out my storage.  I'm sure there is an easier way, but I finally downloaded them on the computer making room for more blurry memories. With the help of my lovely assistant, Kate, we made another family video .  Looking through these snap shots, I realize we are boring.  There's a lack of exotic sunsets, finish line poses, gourmet dinners, airplane selfies, arena jumbo-trons, and pallet wood backdrops.  But putting pictures to music makes our snapshots seem more blissful, contemporary, and meaningful than reality.  I'll take it! March is a game changer for this family.  It's in this blessed month when we found out that both Davey and Maggie have spina bifida.  2007 and then again in 2012.  In March 2015 we fully embrace our spina bifida madness.  Whoever said a disability doesn't define us...well, that's not true.  It's all semantics, but we couldn't imagi...

Maggie has a new haircut.  It's adorable, and eerily similar to the hair styles of some famous entertainers.  You can decide who wears it best :)

We bought our home in 2007 prior to the market crash and before the diagnosis of spina bifida blessed our family.  Our home has seventeen stairs with all the bedrooms on the second level.  Davey has conquered the flight, but it's tiring for him to go up and down several times.  Maggie has yet to climb one step of the stair mountain.  Her little world is the floor of our home, and the stairs cut her independent exploration in half.  The thick carpet, small kitchen, narrow door jams, and stairs make it difficult for a walker or wheelchair to be used.  As a Realtor, I'm always studying floor plans and looking for homes without stairs, but we live in Utah where basements are king and almost every home has multiple levels.  My list for "someday" is long.  There are many families who have the same accessibility challenges, so we focus on what we love about our home and get used to the stairs . Yesterday I transferred all the pics and videos from my ph...

Two years ago today we were in Houston, TEXAS! embarking on a new chapter in our lives.    (Yes, I know I capitalized and exclamation pointed the word in the previous sentence but as we all know, everything associated with that word is bigger, bolder, and begs to be shouted from the rooftops).    At that time our little Maggie was still developing in the womb, Davey had an awkward buzz haircut that showed just a little too much forehead, Josie was enthusiastically enjoying life as a hog-caller-in-training, and Kate reveled in her newly acquired ability to read simple chapter books.    We had experienced a surreal week of preparation, heartache, and joy as everything fell into place for us to move forward with Maggie’s fetal surgery at Children’s Memorial Hermann Hospital .    Two years ago today that surgery was completed by an amazing and awe-inspiring group of miracle workers.    Millie recuperated, Maggie was born, and here we ar...

Can't sleep.  Spina bifida does that sometimes!  On Tuesday Davey will have surgery at Shriners Hospital.  Some call the surgery a bilateral tibial rotational osteotomy.   I refer to it as fixing the feet forward.  Here's how he walks now.  See how he trips on his feet because they turn inward.  That's a result of being born with clubbed feet.  Hopefully in two months after his casts have been removed, his feet will face forward.   This is Davey's 8th surgery (I think).  It's difficult to know how he processes the thoughts of surgery.   He is most excited to have a slumber party with his dad at the hospital, and for his Papa from Texas to come and sword fight with him.  It's been a long time since Matt and I had one of our kiddos in an operating room...over a year.  I've appreciated the break and pray the doctors will have skill, wisdom, compassion and clarity as they care for my little boy.   My heart is really he...

Here's a little blurb I wrote for the Power of Moms website.   http://powerofmoms.com/2013/12/millie-killpack-redefining-perfect-miracle-and-normal/

Maggie is an interesting little lady.  Kate discovered that every time she sang this song, Maggie would get distressed.  Now it's our favorite family past time.   http://www.youtube.com/watch?v=kd2QgViFGuw&feature=youtu.be As far as spina bifida stuff, it's still thriving.  Maggie has been plagued with UTIs for months now.  We've tried all sorts of antibiotics and fancy catheters...no cure yet.  Her vision prescription has gotten better, so we are ordering two pairs of glasses.  I don't fancy the selection for baby girls...too pink.  So she'll be a fashion star in tortoise shell and blue frames.  Yesterday, Maggie rolled over twice by herself.  A wonderful accomplishment for my little lump of a lady.  But it's tough not to get discouraged by the slow progress. Davey has a surgery scheduled in January to realign his legs.  Right now his legs turn inward and he trips over them as he walks.  Hopefully the doc...

For the past two years, Davey rode a special needs bus to preschool.  The bus picked him up right in front of our house, had a ramp for his wheelchair, and an aid to help make transportation a breeze.  This year Davey wanted to ride the bus with his friends and sisters.  It's not been easy, but he loves it.  Here's an excerpt from an email that my dad wrote to our extended family about Davey's first bus ride to school. My dad has the ability to say how I feel better than I do. I just got off the phone with Millie.  Our last few phone conversations have been focused on a mother's concerns as her child goes to school - really goes to school.  This morning's send off to kindergarten was an event she found quite difficult. Had she done all she could do for Davey?  How would he manage? Would he feel different?  What would the stairs/stares be like?  Would he feel lonely?  Lots of mixed feelings.  ` Davey waited outside on the fr...

I get blue this time of year.  The end of another memory-making summer. So long, Musical: Kate, Josie and Davey were all in a musical (if you can call it that) put on by Lehi City, "101 Dalmations".  The rehearsals kept the kids entertained and singing during long summer days.  Davey met new friends and improved his wheelchair dance moves.  The directors were so good to accommodate him.  Kate was a "boxer" dog.  She was embarrassed by her boxers and boxing gloves.  I thought they were adorable.  Josie didn't have a speaking part.  Instead of being bummed, she kept saying, "Thank heavens I don't have to worry about my lines!"  Davey had a speaking part, he just never said the line.  Here are the highlights: Pa Rindy did their make-up. Grandma Peterson with five of her great grandkid superstars. So long, Family: There is nothing better than seeing our siblings, parents and cousins who live afar.  We can neve...