More News Stories

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 had a big zit that I saw after the interview.  If you want to watch, it will air on Channel 2 at 5 & 6.

Channel 4 is planning on doing a story this Friday or the next.

Baseball Projects Easter Canyon

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, my 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.m. every weekday to get our gospel fix before heading to the high school hallways.  Behind the sacred chapel doors, my spiritual foundation was strengthened.  When my parents moved to the Texas Plains forty years ago, the small congregation met in a recreational dance hall which was transformed each Sunday morning to a place of learning and testimony after parents swept out cigarette butts and removed beer cans.  Now the congregation numbers over 350, and the church building stands immovable atop Hunsley Hill. My heart swells to see its growth. 

Not only was the building rededicated, but so was I.  

We reread many of the cards you sent last year at this time.  They were so beautiful, 

I  hung them up for the weekend!  Although the events of last year are fading, 

we will never forget your incredible acts of kindness.

Alec Awesomeness Awareness Day

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

Journal Entry...One Year Ago

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 excited for our second ultrasound.  Millie went alone to the last ultrasound and they ruled out spina bifida and told us we were having a girl.  During our ultrasound today, we felt happy and free from care as the ultrasound tech went through the necessary measurements and visual landmarks.  We told her about our experience with Davey’s ultrasound and how difficult it was to find out there were concerns with the images (lemon sign in the head, the chiari malformation, and club feet).  Anyway, as we talked (and perhaps I’m only remembering this in retrospect) the ultrasound gal became more and more quiet.  She no longer pointed out various parts on the ultrasound but quickly got the necessary images and then stopped to face us.  I’m sure she must have felt awful and was trying to find the words to tell us.  Millie saved her the trouble by saying something like “there’s something wrong isn’t there” or “you found something didn’t you.”  She just nodded and Millie began to cry.  The tech got up and put her arms around Millie saying, “I just want to give you a hug.”  They both cried.  I’m grateful to her for her kindness and honesty.

We waited for what seemed like an eternity for the doctor to come talk to us.  During that time, Millie called her sister.  In Millie's family, such a phone call spreads like wild fire and the united forces of prayer were with us in minutes.  Our regular doctor was gone, so his partner, Dr. David Young finally came in the room.  He confirmed that our little girl had spina bifida characteristics. The images were not perfectly clear, but she had the distinct lemon sign in her head and they could see the lesion on her spine as well.  She did not appear to have club feet, however, which we were grateful to hear.  Dr. Young was kind as he attempted to console us as Millie continued to cry.  We had driven separate cars to the appointment because I came from work.  I was sorry that Millie had to drive home alone.  She called mom (Rindy) who was in Arizona caring for Grannie Annie.  Mom just cried and sought comfort from Uncle Todd.  We didn’t find out till later that Uncle Todd hurriedly booked mom a flight and she was in Utah by 10 p.m.  It's a blessing to have her here tonight.

When we got home we composed ourselves and gathered the kids around.  Davey and Josie had been collected from the bus by our dear neighbor, Hilary.  I had called her from the doctor’s office and explained what was happening.  She (along with so many other neighbors and friends) was an angel in our lives today.  We told the kids that their new baby sister had spina bifida just like Davey.  We were upbeat and talked about how exciting that was in so many ways.  Josie just started to scream with joy.  “Did you hear that Davey????”  “You’re going to have a friend!!!!”  She then gestured to her and Kate and then to Davey and Millie's tummy saying “Two and two, two and two.”  It was a sweet expression of love and joy that lifted my spirits.  When I tearfully recounted the experience to my mom and dad later that day, mom said, “Josie’s right.  There were two spirits and now Davey is getting his sister.”  Whatever happened in the pre-existence, I’m so excited to have this sweet girl come into our lives.  I'm thankful for faith and strength of my mom and dad and Mill's parents.  I remember the feelings we had waiting for Davey's birth and just wanting to have him here.  I feel that already with this sweet girl.  Now we have a big decision to make first.  We need to decide if we’ll pursue the fetal surgery that was still in trial stages when Davey was born. 

Cursed

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 happen?  There's certainly much worse in life.  But being bummed is being bummed.  Whether it's because you were outbid on a real estate offer, you got a bad haircut, your vacation gets cancelled, or your child needs brain surgery.  It's all a bunch of blaah mixed with really?!

Confucius Kate said it best this morning.  "Dad, sometimes Heavenly Father has a plan we just don't understand."  Then she concluded, "This is the worst day of my life."  Honestly, I think this is the most disappointed Kate has felt.  It outshines her 6th birthday when she got a brand new tea set.  Hours later Josie shattered it on the back patio.

No playing in the spring weather for us, just lots of movie watching.

My Post 1 Year Ago

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. 

Work

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 older.  Everyday I struggle to find ways for him to be responsible and productive.  One chore he is great at is sharpening pencils.  He'll happily sit on the floor with the electric sharpener and pile of pencils and make the tips perfectly sharp.  Holidays are great because the kids always come home with new pencils from their classroom parties.  It keeps Davey busy the next day. If you have a pile of pencils that need sharpening, Davey would be honored to do service for you...seriously!  A few weeks ago we were at my sister's house for Sunday dinner.  She secretly poured rice and potato chip crumbs on the kitchen floor and then handed Davey the central vacuum.  This is "his chore" at Aunt Lesa's house, and she always finds a way to make her floors messy when Davey is around.

Matt's parents asked if they could come over and do some chores with the kids.  They had a lesson at church that talked about grandparents teaching their grandchildren to work.  What a good Nana and Pa!

Here's a quote I like by Bishop Burton, "

One of parents’ most important responsibilities is to teach their children to work. Even young children can begin to experience the benefits of working when they are involved in household chores and in service to others. Wise parents will work alongside their children, will provide frequent praise, and will make sure no task is overwhelming."

Time for me to get back to work.

I love how Matt says, "good work" at the end of this video.  Crawling through snow is tough!