Waiting

While Evey's in the hospital I thought I'd post new pictures my sis-in-law took of the kids (thanks Kim). Evey is doing amazingly well and is alert and happy even with all the drugs in her system. Prayers are being answered. 

 

                               

This one of the kids is so telling of all their personalities. I love candid shoots because you really see who everyone is. Eli is hamming it up for the camera. Evey is letting the siblings know play time is over.  Owen's trying to console Evey to make her feel better. And Zoey is giving the camera stink eye...just because she can. This pic is the perfect explanation of the fearsome foursome. These little people are so cool and always keep us on our toes. We are so grateful for these kiddos, they have giant spirits(and personalities) and I'm blessed to be able to hang out with them all day. 

Insta-Family

It was no less than 2 years ago, that Nate and I were openly mocking facebook, blogging, and most other forms of social media.  Yes, Nate and I eat our words quite frequently in life.  That's what we get for always having an opinion on everything. 

We finally started the social media game when Nate started his own business last year and shortly after, Evey was born and social media has turned into one of the greatest blessings in our lives.  We found a facebook group for 17q21.31 microdeletion syndrome (aka Kooelen-de Vries Syndrome) right after we received Evey's diagnosis at 2 months old.  Since then, it has been a huge blessing to have friends all over the world that can help us understand what to expect in the future and what we can do now to help improve Eves Knees life.

Long story longer, the group has started "informal" gatherings once a year, with whatever brave parent that decides to volunteer their time and home city for the yearly meeting.  This year Evey and I had the opportunity to attend a gathering in Indianapolis, Indiana with 31 other "kool" kids and their families. To say it was a life-changing experience, would be an understatement.  It was incredible to see Evey's buddies that all have similar features, some could have been her twins, and they all just molded together.  My favorite part of it all was the instant bond with the parents of these kiddos. It was so fun to meet parents that we've been talking with online for a year and to finally be able to hug and meet their kids.  They felt like they have been family all along.

Last but not least, Dr. Koolen, "the man, the myth, the legend", flew in from the Netherlands just to be at the gathering.  He let all the parents ask any questions and gave us all a genetics 101 class.  I have met a couple geneticists in this last year and never have I met a more warm, personable, truly humble, man.  He took the time with each parent and played with the kids like they were his own.  As silly as it sounds, out of all the syndromes, I'm sure glad Evey was blessed to be a "kool" kid.  These parents and families are so chosen and it's an honor to belong to this amazing group of people.  Can't wait for all the gatherings each year and to watch the group grow for years to come. 
I love our new insta-family.

Amateur summer

This summer has been my first legit summer with kids out of school.  Needless to say, I did zero planning and thought that things would be there normal organized chaos. Yeah...not so much. Hence the word amateur in the blog title. I have entered into a total fog this summer, that started with Evey's hospital stay at the beginning of July and it hasn't left me. The following is a list of things that prove I've lost my mind...

-I lose my phone in our house at least 2x a day and have to call the phone from my iPad to find it. 

-I left my target credit card at target and didn't realize it until a week later when I was checking out at target. On a side note - target cuts up cards that are not claimed within 24 hours....awesome. 

- I dropped my phone at the zoo and thankfully some worker found it at closing. 

-I've successfully left my wallet at both red robin and California pizza kitchen and not realized it for days.

However, there is a silver lining in me losing my mind. It's the beautiful thing that our kids are excelling and doing amazing in spite of the chaos.

   I take them hiking and everyone's blown away at their friendliness and endurance climbing big mountains. 

We take them on spontaneous hotel trips and they behave like champions and have no issues within sharing a bed. 

Owen and Eli have taught themselves to swim. Owen did because he was ready and Eli did it because he accidentally jumped in the big pool without his life jacket. Ends up Eli can swim if his life depended on it. 

My favorite part about our kids is that they look out for one another. Yes, they can fight full on MMA style at any given moment; but if anyone messes with one or the other, they will gang up and take that person out. It's so fabulous to watch. 

I know these 4 amazing little people are so loved by The Lord and that he will always look out for them regardless of the chaos that life throws at them. 

Now, if anyone has seen my mind, will you please contact me and return it as soon as possible.  Thanks!

Taking care of business

   A year ago, we were introduced to an awesome couple by a friend of my parents. It was no coincidence that they happened to have a son with a similar deletion syndrome to Evey, only his is on the 7th chromosome, while Evey's is on the 17th.

      After a few months of hanging out, we realized this was an eternal friendship; then, we started talking about how Evey and Paxton were destined to be together. Then came the mother-in-law jokes, and it has been a blessed year having this family by our side, who understands our life without us having to explain a thing. We love them, and have found a perfect friendship in them.  

    A week ago Saturday, Nate and I were out on a date, with Evey (of course), when we found out Pax was being admitted into the hospital for what our friends thought was a "routine" pneumonia.  We immediately decided to go up there and visit with them in the ER; PCMC really is our second home.  A date night in the ER is a normal thing for us, and for them, so we didn't think much of it. Evey and Paxton also had their own date that night. 

     After a few hours of visiting, Nate and I decided to head home. As we were leaving, Nate mentioned to me that Shannon and Dave looked so bright and full of the light, they were just radiating light - they were glowing. We both wondered if that was a standard look for Dave and Shannon in the hospital. 

     The next day, when we found out Pax was gravely ill, we knew they were being surrounded by angels to prepare them for what was to come. 

    Four days later, Paxton passed away from a strep infection that got into his blood stream.  

     It's been an extremely somber week as we've reminisced about Paxton, and thought about Evey's future. More than anything, I've been extremely grateful this week. Grateful that our dear friends know, without a doubt, that Paxton is happy, and free from his mortal body. 

     I'm also thankful that I know he has retuned home to a loving Heavenly Father, and I know when it's Evey's turn, Paxton will be waiting for her to show her around. 

    Since the day Paxton passed away, Evey has been unusually healthy and active. She's slept through the night consistently, has not vomited or choked, and is the happiest that we've ever seen her. We know Pax got up there and rearranged the angels watching over Evey, and he's looking out for his lady. Thanks for taking care of business, Paxton - we love you.  Make sure to save some seats up there for us...until we meet again. 

Numbers

6 years
4 Kids
5 Houses
4 Cities
Millions of Laughs

Thanks for joining me on life's adventure.  There's no one else I'd rather do eternity with.  I still choose you! Happy Anniversary Baby Bubba!

New perspectives

Yesterday, we had a quick Botox procedure done up at Pcmc. They had to put Evey under general anesthesia because they ran an ultrasound over her cheeks to find her salivary glands and then inject them with Botox to prevent her from drooling and choking on her saliva at night. We hope it helps.

It was a quick, no biggie procedure and its amazing how you learn to not even flinch at the minor ones now, especially after the big ones we've had and also knowing what's coming in August with her spinal rods being put in. That one is going to be a doozy. 

I know I say this over and over, but I love the magic moments and miracles I witness every time I'm up at PCMC. Especially while waiting in the Pre-op room. Here's a few of the magic moments I saw in the short few hours I was up there.

• A young mom adjusting the huge pink bow on her 6 year old daughter's bald, cancer-stricken head.
• Another Mom and Dad reading a dragon book to their 10 year old boy for an hour straight while waiting, all so he wouldn't get nervous while waiting for his surgery.
• A grey-haired anesthesiologist making monkey noises to a little Hispanic boy who couldn't speak English while carrying him back to the OR.  The little boy was laughing hysterically.
• A couple waiting patiently with their daughter with cerebral palsy, all while brushing her hair and stroking her head.
• A grandma of a fussy baby, holding and rocking the boy, while the exhausted couple ran down to the cafeteria to get breakfast.
• Walking in post-op to see Evey being held by the nicest nurse, who said she wanted to snuggle with her all day 

It's always about perspective.  These little moments do not even account for all of Eveys' doctors we ran into, and who checked on her and the anesthesiologists who shared information with one another regarding Evey's previous surgeries.  We have an amazing team and there are parents out there doing hard every day.  Life can seem pretty unfair sometimes, nobody has it easy in today's world.  I'm always reminded of that up at PCMC. Good thing the Lord allows us to see those small miracles and magic moments that remind us that we are never alone in this.  Blessed.  

Dad

Fathers day came and went in a blur.  We have narrowed down Eveys' issues and sleepless nights to the fact that she's choking on her drool from her new tooth at night. We've learned she does terrible with thin liquids and just can't swallow them.  The solution - head back up to PCMC in a few days for them to botox her salivary glands in her mouth that will hopefully prevent her from drooling. It's a super quick procedure, but they do have to put her under with general anesthesia which is a bummer. All of this while we're scrambling to prepare for Nate & I's first vacation by ourself in 6 years! Phew...

I was asked to talk in church on Sunday about fathers.  It really got me thinking about my own Dad (aka Papa) and that amazing husband of mine we like to call the Natronius.  They both are my favorite men in my life.  These days women are pretty hard on men.  I read a news article last weekend all about how media has portrayed men as big, dumb dopes that are only good for bringing home a paycheck. It's unfortunate because there are amazing men out there, that are incredible dads and husbands. It's no small task to be a provider these days in this world we live in where there's so many expectations on what they are to provide.  Every time I want to get a little whiney about dealing with the crazies, I remember that.  So thank you men where ever you are.  Thank you for putting up with the ever increasing demands that society places on you and thanks for tolerating the women in your lives.  We know estrogen is a complicated matter; don't worry, it even confuses us most days.  And thank you Papa and Natronius.  You are and always will be the best men the world has ever known.

Mountains

Psalms 18:36  Thou hast enlarged my steps under me, that my feet did not slip.

We've had several long nights in a row with Eves lately, more so than normal.  Between fevers, new teeth, and trying to figure out her GI issues we are only averaging a couple hours of sleep a night.  As Nate and I pray at night, we always ask the Lord to help Evey sleep through the night.  And most nights, even after our fervent prayers, she doesn't.  I've been reading Elder Holland's book this week, For Times of Trouble, on the book of Psalms. A particular passage of his, answered my own personal prayers of why our specific prayers are not always answered in the way we ask.  He says this.

"Much of the miraculous help we find in the gospel is just that - a miracle from heaven, the power of divine priesthood, the attendance of angels administering to us through a very thin veil.  Those are gifts from God, manifestations of His grace.  They are provided for us without much control or power - or even much worthiness, it seems - on our part.
But other elements of God's miraculous help consist of things He does to, in effect, let us help ourselves.  Some paths we feel we just can't walk.  Some mountains seem just too high to climb.  Some steps are just too difficult to take.  When that is so, heaven does intervene, but often it is not too smooth out the path or remove the mountain or shorten the steps.  More often than not, God sends help in a different way.  He makes us stronger and more sure-footed.  In effect, He gives us bigger feet, stronger legs, a firmer back, more stiffened shoulders.  He deals with us rather than with the problem we face.  We then proceed with new strength, less slipping, and are all stronger for it."

So my prayers have been answered.  I have renewed strength to get through the day.  I have the energy I need to take care of the kids, and Nate has the energy he needs to manage his business.  We feel so humbled and grateful for all the unexpected lessons we are learning on our adventure with Evey.  How marvelous that the Lord knows us better than we know ourselves and knows exactly what we need, when we need it.  We are blessed.

The end of birthday row

It was happy all around for Owen's fifth birthday yesterday. Happy because he was so excited and also because he was the last of what we have named "birthday row", our 4 birthdays in 6 weeks. Next year I vow to plan better and maybe even let the kids have a legit party...maybe.  We had a small pool party with our amazing friends who have 3 girls that match the ages of our kids. And yes we are already arranging marriages for the boys.  They love them and they play amazingly well together. Fixed marriages are so not overrated. 

I can't believe our "Owie" is 5. He reminds us all the time his name is Owen and then spells it for us in case we forgot how to pronounce it. He is the perfect firstborn and the most pure and gentle boy I've ever had the pleasure of knowing. He taught us right from birth how to be parents and how to fight for what is right. He's given us so much confidence in our parenting skills and we are all the better for knowing him. He's turned in to such a logical genius. We have to remind him to call us Mom and Dad because now that he knows we have real names, his logical brain obviously thinks we should go by Nate and Cally.  He loves soccer like Daddy and happens to be phenomenal at it. Nothing can get in his way between he and the goal.  He is always wanting to read and loves us to spell every word. He is the most polite little dude with all his pleases and excuse me. The great news is we haven't taught him any of this. He learned it at school and has made it a part of his life, mostly it was in his nature from the get go. He loves good manners.  I can't believe just 2 and a half years ago we had a non verbal, head banging, rocking, tantrum throwing little boy.  He's a true testament to ABA therapy and early intervention.  All little quirks aside, at the end of the day he's just our Owen. The best big brother, an amazing friend and a little dude that melts hearts everywhere he goes. Nate and I constantly scratch our heads at how we were lucky enough to be chosen to watch over this perfect boy here on earth. I'm thinking he and Evey were a package deal and what an amazing one at that! 

 We love you Owen!  Thank you for blessing our lives every day and for being the first born of the supreme team. You have an amazing life ahead of you and we can't wait to see how it unfolds. 

Love, Mom and Dad aka Nate and Cally

Evey Year One

We celebrated Evey's birthday in typical supreme team fashion; Utter chaos. We started off at Primary Children's Hospital for a pulmonology appointment. We learned we need to treat Evey for asthma and allergies and give her steroids daily. We took the whole fam along because the kids love it up at the hospital.  Who wouldn't, it has Spiderman and a bridge you can walk across overlooking the city.

Next was the zoo because it happens to be right by the hospital. More chaos. 

And we finally made it home to sing happy birthday and open presents. She loves her music kit with drums and shakers. We officially have the sixth member of the band. I'll keep this post about Evey and wax sentimental on everything I've learned over the last year in the next. Developmentally, she still doesn't hold her head up, sit up or crawl. But man does this little lady roll. She's started to figure out she can move her body on the ground to get where she wants and she loves it. Only this little girl with her drive and determination would figure out a way to work around her malformed body and spine. I know I say it over and over, but she truly is a living miracle and it is blessing to get to hang out with her all day. Happy Birthday Evey Lady. You are our favorite one year old!

Normal

What is normal? I can tell you this much, not a single one in our family is normal. Sometimes it's hard to decipher who has special needs in our family, as it varies from minute to minute, even amongst the adults.  Nate & I do our very best to get our kids out of the house to remind them that life isn't about being dropped off at relatives and going to the doctor and hospitals.  Lately, they've been looking for minor ailments to have an excuse to go to the doctor or the hospital.  They've grown to love the doctors and hospitals and I'll be shocked if they don't all end up in the medical field in one form or another when they're older.  So this is what our family does when we're pretending to be "normal".  Riding bikes, soccer time, and hiking around the mountains.  We can still do everything we love with just a little more prep time.  There's no other 5 people I'd rather pretend to be normal with than them.  They make every day so worth it.