Tuesday, November 19, 2013

Teen Supreme

    The more we talk with those around us, the general consensus continues to be that the world is getting more and more out of control.  Nothing is as it seems and there's craziness everywhere we turn.  As a Mom, trying to raise stand-up kids in this type of environment, can be intimidating, to say the least.  It can be down right scary and totally depressing and gloomy to think about tackling the daunting task of protecting your kids into today's society.  Nate and I know with the world becoming so polarized, with that bad, comes incredible good.
     A couple of years ago, Nate and I had the opportunity to teach 14-16 year olds in our church.  These teenagers were hands down, some of the most incredible kids we have ever met.  They were strong in their faith and clung tight to their values.  They weren't daunted or afraid at all of what the world was throwing at them.  Instead, they were brave and fearless and facing life without hesitation. It was a great year to bask in their light and example.  Now, they are all around the world, on missions, preaching the gospel and facing the world with that same bravery we saw years ago.  We knew after teaching them, that these next generations of youth would continue to prevail against society's standards and come out on top.
    Enter these 3 amazing girls.  There's an incredible program up at the University of Utah for siblings of special needs kids.  Every friday night, high school and college students volunteer their night to spend one-on-one time with these siblings.  Our kids got lined up with these 3 teenage girls from a local high school and it was love at first sight amongst all of them.  These girls give up every friday night to play with our kids, without pay or any recognition.  Our kids talk about them all week and can't wait to see them.  Every night as we drop the kids off, Nate and I always reminisce that we were the worst teenagers.  We would have never given up our friday nights to hang out with some kids, unpaid.  We love that those girls love our kids and we will be referencing them and their kindness for the rest of our lives.  I hope the rest of their lives are infinitely blessed for the simple service they have given our family every friday night.
   This my friends, is why we are all going to be okay.  The youth out there will make sure of it.  Sure the world can be pretty scary, but if we stop reading and listening to the news for a moment, take a breath, and look around, there's a lot of miracles and beautiful, kind deeds taking place all around us. We are blessed.

Wednesday, November 13, 2013

Put it on our tab

      On the last day of Disneyland, Evey had her first grand mal seizure.  In the neurology world they are now called tonic clonic seizures, but I'll call it grand mal in this post and kick it old school.   There are many different types of seizures and Nate and I have been pretty sure she's been having other types of seizures, but this was the first grand mal we've seen.  Epilepsy is super common with her syndrome and since she manages to have everything that comes with the syndrome, we figured epilepsy was inevitable.  Because Nate and I have already seen some pretty scary things with Evey, we weren't too phased by it.  She vomited and turned blue right after, but we had her suction machine and steroids and it helped pull her out of it pretty quick.  It's amazing how nothing really shocks us anymore with Evey.  We've become pretty desensitized to all things medical and as crazy as it sounds, it was nice to finally witness an undeniable seizure, because now we are 100% she does have epilepsy and we can treat her accordingly with our neurologist.  Knowledge is power for us.
     Yesterday we had a few procedures done and a sedated hearing test called an ABR.  We knew she had some hearing loss, but we haven't been too worried about it because we assumed it was conductive, meaning it was caused by recurrent ear infections or malfunctioning tubes and that she'd eventually grow out of it.  Ends up, we were wrong.  She has moderate hearing loss in both ears and it's not conductive.  Our poor girl has been deaf for 18 months and we had no idea.  Although, in this house, maybe being deaf isn't such a bad thing.  So, pink, sparkly hearing aids are coming our way.  Add that to the pink wheelchair I ordered, and the pink glasses she'll be getting next month...I've probably gone too far.  After we die and Evey talks to me for the first time, I'm sure she's going to have some words with me about the pink.  I apologize Evey, but I just cannot resist.
    In all seriousness, this girl has a fighter spirit.  All of our therapists say all the time that they've never seen a child with so many physical issues that is so determined to progress.  She continues to melts hearts, ours included.
    A while back I wrote about Evey's boyfriend, Paxton passing away.  Our dear friends gave us Paxton's stander to use with Evey so she can learn to bear weight.  It's been surreal to see her in it, she loves it, which is incredibly unusual, because most kids have to build up a tolerance to being in it.  Evey must know it's her boyfriend's and that's why she wants to hang out in it all day. I always think of Pax when I see her in it.
     I know without a doubt, that families are forever.  Paxton's family will be reunited with him one day and I know when it's Evey's turn to go, we will be with her again too.  That's the peace that carries us through every new diagnosis, every new twist and turn in our mortal lives.  We are blessed.

  Mosiah 2:41 And moreover, I would desire that ye should consider on the blessed and ahappy state of those that keep the commandments of God. For behold, they are bblessed in all things, both temporal and spiritual; and if they hold out cfaithful to the end they are received into dheaven, that thereby they may dwell with God in a state of never-ending happiness. O remember, remember that these things are true; for the Lord God hath spoken it.

Tuesday, November 12, 2013

Love or hate

Like seafood, chocolate, and snow, Disney happens to be one of those Love/Hate things.  Our family happens to fall on the love side.  We love all things Disney and so do our kids, conveniently.  We found a break between Evey's surgeries and thankfully she stayed healthy and we were able to spend a week down at Disneyland.  Our kids loved every part and so did Mom and Dad.  Most people think taking four young kids to Disneyland for 5 days is parental suicide.  What I try to explain to people is that our day to day lives are so crazy and so unpredictable that 5 days of Disney is utter perfection.  Nate and I were on cloud nine the whole time and the kids loved every minute.  We felt so blessed every day that we were there.  The only glitch in our near perfect week was that Evey had a seizure the very last day.  We'll address that the next post, but for now here's the Supreme Team's Disney review.

                                                              Our view from the hotel

The characters were all so sweet with Evey and she loved all of them so much.

The boys loved giving hugs to all of their favorite characters.

                          We had to take a beach day to break things up and it was perfect weather.

Zoey is obsessed with Cinderella.  We had to pry her off of her and she was loving every second of it.  Zoey will be the girl that's fighting all the boys on the playground, while wearing a princess dress.

                                              The kids mapping out their plan of attack.

                                                  Love these boys.  They look very related.

                   Each of the boys got to do the Jedi Training Academy.  Eli and Owen took it all very seriously.

                                                Yes, we were as happy as we looked.