Get used to the Stairs

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 docs can fix this.  I know surgeries stink,

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 front steps for twenty minutes befor

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 never get enough of you.

I love to read.  In much the way that a certain song or fragrance will elicit memories of a stage of life or a super cool moment at a high school dance, I have books seared into my memory from the moments in time when I was reading them.   When Kate was born, I was reading a book about cryptography.  Josie was born unexpectedly premature the week before Christmas.  Life was so scattered with her arrival and Christmas that I didn’t have time for reading.  I do recall that the scriptural story of Christ’s birth held special significance for me that year as I held my newborn baby.  With Davey, I was reading E. L. Konigsburg’s The View from Saturday .  The book uses a 6th grade academic competition as the backdrop for the coming together of four special students and their teacher.  The teacher is returning to the profession after a ten year absence due to a car accident that confined her to a wheelchair.   Now, I’ve seen enough X-Files to know that in rare cases, through the proc

Channel 2 is doing a one year follow-up story to our fetal surgery . Matt and I aren't a fan of the coverage, but we believe the news stories had a large influence in our insurance covering the surgery.  So we are grateful for them, and we hope the new story shows the joy we have as a family. I'm nervous about 4 things.  1st, coming across like our life is soooo hard because of two kids with spina bifida. We wouldn't have it any other way, and most days are fine and dandy. 2nd, sounding like fetal surgery is the best option for everyone. Obviously we don't believe this because we chose not to have the fetal surgery with Davey.   Sometimes things can come across different when hours of footage is condescend into a two minute story.  3rd, the perception that fetal surgery is a cure for spina bifida. It's not.  4th, I feel uncomfortable with all the comparisons between Maggie and Davey. They are who they are. Well, let's see how it goes.  All I know is that I h

Davey played in his first baseball game.  Out of all the dad's across the country attending their son's games, I think Matt's heart was bursting with the most joy.  A church group of teenage volunteers assisted the boys as they swung and "ran" to base.  His team, The Braves, is sponsored by Shriner's Hospital.   I wanted to spruce up the office, so we made book shelves that wrap around the room  and put up wrapping paper. We are doing some demo work in the master bathroom.  I look forward to sharing a bathroom with the  kids for the next six months :-\                                   Easter.   I returned home to Canyon, Texas for the weekend.  I couldn't miss the big event.  Over the years, m y  small  hometown church has become a much larger one, and I wanted to be there for the dedication of the expanded building.  I attended this church every Sunday, and during my teenage years, I joined other teens at  6:00 a

We love Alec.  He's a great cousin, nephew, and friend.  There are few people who love better than Alec.    He has autism.  A few weeks ago he gave a talk in Primary.  He held up the words in order to be understood.  Then he used sign language at the very end of it.  Jaisey, his mom, sent us this picture. So today our family wore blue and made blue M&M cookies to celebrate Autism Awareness Day.   Our Houston cousins showing their Alec Awesomeness Awareness all in blue. Davey and Alec Awesome Alec

One year ago we found out Maggie had spina bifida.  It's been a fantastic journey.  I love glancing over my shoulder and looking at my cute chunker in her swing.  I'm gushing with love! Matt's not a big journal writer, but I'm glad he wrote on occasion last year.  This is one of his entrys.  I am putting it on our blog today because I've really learned and been strengthened by other families who have shared their experience.  Also, if by some chance a mother clicks on our blog and is trying to make the decision whether or not to abort her child with spina bifida, I hope she'll choose to let the baby grow and become a child of destiny.  Oh ya, and if you read this, please don't write comments about our family being awesome or anything like that.  That sounds conceited!  But your niceties make my face all red and mom always said I didn't look good in red  So, no comments except on the weather. March 22, 2012 Millie and I went to the doctor today excit

Last year when I started to blog, I wrote a post , "Should Have. "   I feel the same way today.  I should be landing in Houston right now ready to begin our vacation.  For months, Kate, Maggie and I have looked forward to playing with family and visiting the doctors who performed Maggie's fetal surgery.  But just as I was zipping up the final piece of luggage last night, Kate started throwing up.  It continued every twenty minutes throughout the night.  Finally at 3 a.m., we accepted there was no way Kate could fly.  So I decided to go without her.  But the pit in my stomach told me I couldn't leave her.  This is our third time to cancel our Houston trip.  Before it was because of Maggie's hydocephalus. So the whole family is disappointed.  Davey and Josie were ecstatic to be babysat by neighbors, watch movies with Dad and have a sleepover with Nana and Pa.  When I got Davey off the bus, he said, "Oh man, I want you to go now." Why do these things h

A year ago today I announced our pregnancy to some of you with this facebook post, " Our 4th is expected to arrive in August. The ultrasound showed a perfect spine, brain and feet. Relief! And, it's a girl!" I vividly recall my 17 week ultrasound.  I was nervous, yet confident everything was fine.  The tech confirmed my feeling, the baby looked perfect...no spina bifida.  Once I got in the car, I cried tears of joy and thanked Heavenly Father for sending me a healthy baby and for the opportunity to heal and have a normal pregnancy.  On my drive home, I called Matt, my mom and sister to share the news.  I didn't realize how much anxiety and worry I'd been carrying.  The unsaid gloom had been lifted.  I felt healing and peace for three weeks. 

I've been working long hours lately which means I do less around the house and everyone else does more. Matt is awesome at household chores, homework and dinner.  When he gets home from work, he takes over and does it beautifully. Kate changed both Maggie and Davey's diaper while I was on the phone with a client.  Then she said, "Mom you need to teach me how to do the catheter, so I can do that too."  Wow! Josie's job around the house is to make it beautiful.  Her decorations have a paper theme and are hung with tape throughout the house.  It's a process that starts from the time she wakes up and continues late into the night.  All of the cutting and coloring gives her plenty of opportunities to clean up after herself.  She also loves to wash dishes. Davey's responsibilities are tough.  Even small tasks take incredible effort and energy for him to complete.   This morning as I was dressing him,  I wondered how he would do this by himself as he got

Maggie's a little perplexed with her new accessory.  She does not like them and has cried a lot today.  Luckily, her developmental delay means she doesn't grab at objects, so the glasses stay put...bonus!  After picking up the glasses, we ran some errands.  Davey with his wheel chair, Josie with her bright lipstick that she's not supposed to wear in public, and now Maggie with her goggles. Get used to the stares.

I just saw a Subaru commercial.  Reminds me, I should write about the Urabus (Subaru backwards).  It's pronounced, "Your-a-bus", and that's what Matt and I call Subarus.  Before I dive into this topic, I should just say that Matt and I drive boring, cheap, frumpy cars.  Nothing cool about our Caravan and Mitsubishi.  I've never had a sweet car.  Even in high school I drove my parents purple minivan.  So yes, I wonder what it would be like to drive a hip car.  But that's not going to happen.  Have you ever seen the vans made for wheelchairs...not hip. When Davey was born, Matt and I became frequent drivers of Foothill Drive, otherwise known as Subaru Drive.  This stretch of road is the path to the University of Utah, Red Butte Gardens, Hogle Zoo, Stein Mart, and Primary Children's Hospital.  We are always amused by the number of Subarus on this road.  It's rare to see a white Honda Odyssey (Utah's state car).  Instead, dozens of Subarus converge o