Education

We took all the kids to the hospital while Evey was getting her blood drawn for the umpteenth time. There's usually some awesome teenage volunteers that play with the kids while waiting for their appointments. These poor girls had no idea what they were in for that day when the fearsome threesome strolled in and sat at their table waiting to be entertained. First, they were blown away by Zoey who decided to quiz the teenagers on their knowledge of all colors and their stamping technique. They kept asking Nate how old she was, a frequent thing, and we have to convince everyone that yes she just turned 2. And then, Eli decided to educate the girls on the many differences between male and female anatomy. These poor girls were bright red and probably received a more thorough sex education than they do in high school. We can't say our kids don't pay attention when we are teaching them. Schooled by a 3 year old. So yes we are officially preparing ourselves for 10 years down the road when the bear becomes a
teenager...oh boy!

Angelshands

One of my favorite things in life is when things happen that are in no way a coincidence. The stars all align and magic happens. We are definitely more hyper aware of these meant to be moments since Evey. A while back I was on a phone call with one of the super nice people from our insurances pharmacy department. We got to talking about Eves and she told me she had a sick sister and that their family belonged to this Utah foundation called angels hands. Essentially this group (angelshands.org) is for families with children with rare diseases and they put on private parties and activities monthly for the kids and parents and also help with any medical equipment or medical bills. They're phenomenal. They do zoo trips, parents nights, Christmas parties, and also pool parties!

On Saturday we went to the monthly event up at the Park City Aquatic Center. They rented out the whole facility, filled the kids pool to the brim with water guns and balls and let all of us run a muck. O, E, and Z loved it and we actually let Evey in on her first pool swim because the keep their pool heated perfectly. She loved it and is officially a water baby just like everyone else in the fam. I love these monthly events they are so superb, but my favorite part is being with these other families and special kids. There's no where else where you can casually have a conversation over pizza and swimming about children passing away, surgeries, and just living life to the fullest. A set of parents came up to us after they saw Evey and told us how much she reminded them of their daughter who passed away in May. They smiled and played with her the whole time. There's no awkwardness in this group and no one hesitates to ask what the kids rare diseases are and who has passed away or talk about one another's challenges. It's a special thing to be with these amazing parents and their kids. There's not an ounce of judgement amongst this group, a beautiful and rare thing to find in this day and age. We are all just doing our best and are sincerely happy to be on this journey together with our special kids.

I'm blessed that the insurance woman on the other end of the phone thought to mention this foundation to us and I'm so grateful that those brave parents that lost their son at the age of 16 to a rare disease turned their tragedy into a triumph for our family and hundreds of others. Good is all around us, we just have to remember to look for it.

Lean with it

Our fabulous occupational therapist calls Evey her miracle child. Despite all the things wrong with her anatomically, she's determined to progress. She's trying so hard to keep her head up and hold her little body straight even though her scoliosis and torticolis are out of control. She has a huge hump on the side of her back that make her look like a little old lady. She's a giant, eternal, old, wise spirit stuck in this malformed 10 month old body. She's a fighter through and through and will continue to let us know that limitations are overrated. Here's how she does for a few minutes at a time in the bumbo. And just for fun here's a picture of Evey's monthly shipment of formula and medical supplies. (Someone add medical supply organizer to my mom resume).

Ladies Night

The best way to end a day. 

Push

A while back we were eating dinner with some fabulous friends who have a son with a similar chromosomal deletion just like Eveys. His deletion just happens to be on the 7th chromosome instead of the 17th.  As the Dad was offering a blessing on the food he asked Heavenly Father that he might bless Nate & I to make the right decisions for Evey. I was touched by his prayer and his specific wording regarding making decisions.  It was also incredibly nice to hear someone else praying for us because it's not something we get to hear often, eventhough we know there are countless prayers being offered on our family's behalf.  We pray for Evey every night, but never have we used the words "to make the right decisions."  It really impacted me and it's something I've thought about often since that dinner.

Decision making is an interesting concept in the parenting world.  As the kids are getting older  and Evey's getting bigger we are venturing out more into the crazy outside world.  Nate & I talk often about making decisions, specifically when it's right to push your kids and when it's okay to ease up.  Even with the other half of our "typical" kids, we know it's equally applicable. 

When I was just a young fearless three year old I decided to climb to the top of the high dive at our local swimming pool because I was determined to jump off just like my big brothers and sisters(sounds like Zoey, right?).  I got up to the top and was so paralyzed with fear I just stood there crying and didn't want to climb back down the tall ladder.  So what did my Dad do?  He climbed right up, walked me to the end of the high dive and dropped me off of it.  I came out of that water loving it and walked right back to the high dive and did it over and over again. From that day on I learned even though I'm scared of heights,  I can do scary and hard things.

The last few months with Owen have been a similar story.  Sure, he has autism and his meltdowns are a lot more autistic than "typical" kids, but it's a meltdown none the less.  We wanted to take him on a ferris wheel at our local sporting good store, but when Nate took him he absolutely lost it and would not go on it.  Subsequently, Eli loses it because he can't go on it by himself.  Nate dragged them out of the store and brought them home for dinner and a calm down session,  while we slowly talked some courage into Owen.  After a half hour of enouragement, Nate willingly put the boys back in the car and drove them to that darned ferris wheel.  He carried a reluctant Owen on that ferris wheel, and wouldn't you know, it is now Owen's favorite thing to do, next to disneyland.  I told you I have the wisest men in my life.

I'm facing similar decision making with Evey.  How hard to push her with her limitations and when to ease up.  It is a daily/hourly battle in this wondeful life called parenting.  I'm so grateful for a perfectly worded prayer that quietly assured me that we are not alone in making decisions for our Heavenly Father's children.  What a beautiful, reassuring blessing it is to know that if we do our best with the Lord's guidance, he will take over the rest.

I like us!

Nate and I were alone for the first time in 9 months. If you would have told me one year ago that Nate & I would go that long without being alone, I would have laughed in your face. Don't get me wrong, we love our kids(aka the locos), but we are really obsessed with one another and would rather be alone with each other than doing anything else. We finally got brave and the stars all aligned so that we could spend the entire day skiing and snowboarding. And by stars aligning, I mean my saintly sister-in-law Kara decided she'd add 4 more kids onto her 4 kids for the day, including one that's connected to a feeding tube 24-7, she really is a super star. 

To say it was a magical day would be an understatement. I never realized how my mind is always constantly thinking about Evey and the rest of the kids.  As we were riding the ski lift up, my mind was clear and I was able to snuggle with Nate and enjoy the beautiful spring weather and just be present next to him without thinking about anything else.  Snowboarding was my first love before I met Nate so to be able to combine my past love and my now forever love was heaven, even if he does ski.  Ends up Nate's a phenomenal skiier and he can keep up with me just fine on the board, which also made it even more enjoyable.

I like the Nate & Cally show.  When we first got married, we went on a double date with our favorite friends who are both introverts and as we were driving home, we laughed how we both just blab constantly and talk over one another all the time.  Two extroverts getting married, hence we gave ourselves the name The Nate & Cally show. He is my perfect, perfect match.  He was made for me and I was made for him.  I love how even with our new life, he is even more committed to me and our family.  He is ever so patient with the new tired me and yet will call me out when he knows I'm about to go down a road that does not benefit anyone. During our late nights we often talk about relationships and how Love is the easy part.   Like is the part that takes work.  Do you like someone enough to want to be with them rather than friends, family, kids, work, hobbies? Do you like their stories, their interests, and respect their whole being?  So, yes Nate, I love you wholely and completely - to eternity and beyond.  But more importantly...

I like you Natronius and I choose you and only you.