Friday, April 26, 2013

The "blessed" word

There's a lot of debate in the special needs world when it comes to the word 'blessed'.  Recently, it has been popping up more and more in conversations with family and friends.  Not one to shy away from a debate I'd thought I'd give my two dollars worth.

I know there are some special needs parents that get offended when people tell them how blessed they must be to have a special needs child.  And, there are some special needs parents that smile and nod and mostly agree. while wanting to explain their daily life so that those making the comment will understand what a burden it is on special needs parents' lives.  So, the debate is all over on this word, but, I personally would like to explain why our family is indeed beyond blessed.

Just so people think I'm not ignorantly optimistic (I like to think I'm just simply optimistic), let me put this on the table from the get go: yes, most days Nate & I are physically stretched to our limit.  And yes, our minds do feel like scrambled eggs trying to build our company, and run a business, and keep track of all 4 kids and their needs.  That is just the reality of the supreme team.  But...and this is a big BUT, us being tired doesn't detract - even in the slightest way - from the fact that Nate & I know that we are blessed, are always being blessed, and have too many blessings to even keep track of.  And, because of our knowledge of the "blessed" word, it keeps us optimistic, happy and grateful almost all hours of all days. And here's why...

We have so many amazing people in our lives that are encouraging, supportive, and just downright amazing.  Around every corner there's another set of parents, or a doctor, or a friend, or a therapist that pops up and reminds us that there are uplifting people all around.  We have parents that call at just the right moment and tell us how proud of us they are, and they always have the best words to get us through the day.  We have been blessed with an amazing medical community that will jump through hoops to make Evey's life more comfortable.  We have met other friends / parents with special needs kids that are amazing listeners, that understand our lives, that still smile while talking about really sad and difficult things and that are working just as hard as we are to make their marriage and family the best that it can possibly be.  We have nieces and nephews who we love and adore, who are constantly looking out for their cousins. I mean, what 14 year old boy would hop on his bike, on his day off school, and come down to spend the day with his toddler cousins and help his recovering aunt with laundry?  So, yes, we are surrounded by amazingness.

But, here's the kicker: we are mainly blessed because of our faith.  We know that this life is fleeting and temporary, and these so called "hard" moments now will seem so miniscule in the eternal perspective of things.  I know without a doubt that when mine and Evey's lives are done here on this Earth, I will stand next to my sister, who is so much older and wiser than I can ever imagine. It's a humbling and yet an amazing thing knowing that your daughter on this earth has a spirit that is grander and bigger than I can even comprehend.  Because of that, I will want Evey to be proud of the way I took care of her mortal body on this earth.  I will want that respect that only a little sister would want from her older sister.  It's a magical moment that I think about often: the hug that I'm going to get from Evey after this life and the conversation that we will have.  And, I will tell Evey: "yes, we were blessed and honored to be your temporary guardians on this earthly adventure, and we embraced it all, the good and the difficult."  That's the beautiful thing about faith: with it, we feel nothing but blessed.

Monday, April 22, 2013

Birthday Bear

With all the craziness in the house it was nice to take a day to celebrate our Eli Bear's Birthday.  We did birthday planning pre-op so we had nothing to worry about come birthday time.  Our Eli is officially 4 and we now have two 4 year olds in the house for 6 weeks.  It's Irish twin time and for the first time Owen & Eli kind of get it and are both walking around a little confused, wondering how can we both be 4? 

It was fun to see the bear really excited about this birthday and how he had this astonished grin on his face all day like is this really happening?  He was totally adorable and so cute and nice all day.  We love our Bear.  He's so sensitive, but oh so funny.  He's just like his Daddy and is already doing voices, accents, and funny sounds.  I love taking part in raising a little mini-nate.  It has given us both a lot of insight into who Nate is.  My favorite part about Lijey's personality is how unpredictable he is.  He will come up and give you the quickest kiss and hug when you least expect it and will be on his way before you even realize what happened. I like spontaneity and unpredictability and Eli is just that for our family.  He fits the supreme team perfectly and as a parents it's such a privilege to be a part of this little dude's life.  So happy birthday bear!  We love you to infinity and beyond!







Friday, April 19, 2013

April Showers

Our lives are always calm then crazy, calm then crazy.  We've really learned to enjoy the calm when we get it because we know everything tends to happen all at once in our household.  Looking at the calendar we did know that April was going to be wild, but we had a few curve balls thrown in just to keep us on our toes.  The first day of our Vegas Vacation, I woke up to pink eye and a tooth infection.  Thanks to my amazing old dentist from high school years, we got some antibiotics and healed right up, but then on our last day of Vegas I woke up to a bone sticking out of my shoulder.  Google informed me pretty quickly that I had separated my shoulder.  Thankfully, it didn't hurt until a few hours into our drive home and I knew there was no time to take care of it because Eve's surgery was first thing Monday morning.  After a week of Evey recuperating and my shoulder not healing, Nate finally convinced me to go see my favorite Orthopedic Surgeon who did my knees 7 years back.  He informed me I did indeed have a level 2 shoulder separation and that I also had a case of tendonitis, awesome.  One huge cortisone shot later in my shoulder, (that was an experience within itself), I was on my way preparing for my own surgery the next day. 

Before Nate & I married, I had some precancerous cells that were wrecking havoc on my ever so important female organs.  Because of that and many other issues we were never sure if we would even be able to have children.  Soon after we were married we decided to just go for it, not knowing the outcome.  Hence the children who are respectively 4,3,2, and almost 1.  With a couple of preemies and some fancy medical procedures we got the children here safe and sound.  After some tests and discussion with our OB, we decided now was the time to get the ticking time bomb pre-cancerous cells and all organs affiliated out of me. 

It was so surreal because we had the procedure done on the same floor where we had Evey and they wanted to put us in the exact same room post-op where I stayed after Evey's birth.  Nate kindly asked them if we could stay in another room because those are some memories we did not want to relive.  All pain aside, I've felt incredibly grateful these last days for the children we have been blessed with, whom we were never sure were going to be able to have in the first place. Being back in the hospital reliving the first few days of Evey's life was also incredibly humbling and such a welcome reminder of how much the Lord has given us and how far we've come from almost a year ago.

We are indeed grateful for the April Showers we've had and for family and friends that have stepped up yet once again and have watched kids and rescheduled their lives around to make ours a little easier.  As kindergarten taught us, the good news about April Showers is that we know right around the corner are May Flowers.  Thank you, thank you for your endless love, prayers, and service.  We are blessed.





Monday, April 15, 2013

Light

We are a week post-op and Evey is slowly but surely getting better.  We finally received our first nights sleep last night and I think we are on the up swing for our little lady, phew!  She has also developed a new case of stranger danger in the hospital.  It's probably her age and her surgery combined, but she is definitely a little more cautious of strangers getting in her face now.  I love that she's currently doing some age appropriate things.

This last weekend, we were so excited to listen to the prophet and apostles speak to us at LDS General Conference.  I love it and I wish we could have general conference every weekend.  I especially loved Elder Holland and Elder Uchtodorfs' talks. 

I loved how Elder Uchtdorf talked about living in the light. It's so easy to be a victim these days and everyone surely has numerous struggles and things that burden them. Being up at primary children's reminds us there's always someone out there that has a more difficult situation than us.   We definitely acknowledge that darkness exists, but Nate and I are constantly striving to always stay positive and to bask in the light.  

"There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things.1 It has the power to soften the sting of the deepest wound. It can be a healing balm for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn."  -Elder Dieter F. Uchtdorf

video

 And how could you not bask in the light when you have the Owen & Eli show continuously reminding you that God's light is indeed real and ever so healing.  We are blessed.

  video





Tuesday, April 9, 2013

Otolaryngology 101

Not going to lie. The first 12 hours postop were rough for Evey. She was in crazy amounts of pain that got out of control due to some lovely nurses. So we now know that Eves needs some serious pain meds in the OR before she even comes out into the recovery area. Learning new parenting lessons every day. Fortunately today she is back to her lovely, smiley, friendly self.

So they put a stitch and string through Evey's tongue just in case she had a breathing emergency post op so they could pull it out. We thought her tongue was normal size and that it just sticks out because she's so hypotonic. Apparently, not so. The first thing our Ent said to us was that her tongue was way way big. Then I kindly asked Nate to show his tongue to the ent to show that it was more hereditary than syndromic. So she got her first and hopefully only tongue piercing. Below you can see the pictures of her throat and vocal chords. The vocal chords have a hole and you can see all the swollen tissue around it that shouldn't be there. That tissue is what causes her old man breathing/snoring. Thankfully it has gone down a lot in the last few months as she has gotten bigger and stronger. The other picture shows how they basket weave the muscles to fix her submucous cleft palate, way cool. Another surgery off the list. Next step, learning to eat, fixing her torticolis and figuring out the plan with the scoliosis. I can't say enough what a star Evey is. She never ceases to amaze me. We know we are blessed because of all the prayers on our behalf. So thank you all.









Monday, April 8, 2013

Pre-op Vacay

Just sitting in the waiting room at PCMC waiting for Evey to be done. She's getting her submucous cleft palate repaired, ear tubes replaced, neck botoxed, and another broncoscopy/possible supraglottoplasty. It all should take about 2 hours and because it's mostly in the mouth it should heal pretty well. We only anticipate a few days stay.This is surgery #4, hospital stay #7 all in 10 months. She's a champion.

While spending some glorious time by the pool in Vegas I kept thinking to myself we should have done more pre-op vacays for all of Evey's surgeries. And then I remembered we have for the most part. Now that her surgeries are slowing down we need to come up with some more excuses to get out of town. I guess now we'll have to celebrate normal stuff like holidays and birthdays. How conventional of us. Here's a photo bomb of Vegas good times with cousins and warm sunshine.











Tuesday, April 2, 2013

Hoppy Easter

Several years ago my sisters and I ran around the house with our new stuffed bunnies and ducks yelling Hoppy Easter. Three Easters ago we had back to back traumatic life events smashed into 24 hours. I'll always reflect on that weekend during Easter time. But this year I've been blessed with the gift of perspective (aka Evey). That traumatic easter now seems like light years away in a previous life and it no longer feels like some miserable life altering events. I love that time and perspective heals all wounds. Thanks to our Savior and Redeemer we can all be healed and made whole no matter what life has dealt us. Exactly the right lesson to remember on Easter.
And here's yet another attempt at Easter pictures... Sigh.