A Decade

 On December 18th Scott and I celebrated our 10th Anniversary! That means I have officially spent a third of my life married to this man.

I wouldn't want to be going through life with anyone else by my side.

My 3-year-old Sidekick

Last week Miles turned 3. In my mind he has been 3 for awhile so his birthday was really just a formality to make it official. As I have been contemplating how to describe 3-year-old Miles I find myself smiling and laughing a lot as I think about all of the adventures I've had with my little sidekick. 

Some days we do silly things like dressing up as pirates so we can get free donuts

Some days we go on safari at the zoo with our friends...

 where Miles' favorite thing to see is the excavators and dump trucks building a new house for the elephants.

Then there was the time we were playing at Skate Daze and I lost Miles in the arcade only to find him INSIDE the basketball game throwing all of the balls out to his friends. I have no idea how he managed to shimmy up the ball return hole without getting his huge nogin stuck, but where there's a will there's a way. When asked what he was doing he replied, "the balls were stuck in here."

When we're not out having an adventure Miles is a big helper around the house. He loves to make beds, do the dishes, pull in the garbages, and get the mail to name a few things. He really is a great helper.

He also loooooooves running errands. Costco and Hy-Vee are his favorite places to go. We can't pass a Hy-Vee without Miles exclaiming, "It's Hiiii-Veeeee!"

Miles is one of the happiest and most enthusiastic kids you'll ever meet (unless it's between 11:30-12:30 which is a notoriously grumpy time for Miles before he naps). I wish I could bottle up his excitement and enthusiasm for life and take a dose of it every day. Although, just being around him does a pretty good job of putting me in a good mood. He is the king of hilarious one liners like, "my thumb doesn't work with that blanket" when we tried getting him to sleep with a blanket other than his uh-oh. His favorite color is Orange which matches his personality perfectly. A few of his favorite things include: basketball, baseball, excavators, dump trucks, his Lego Duplo farm animals, suckers, and basketball jerseys. Miles is a really smart boy although in more of a street smart than an academic smart kind of way. He's still working on identifying all of his letters, but you can tell who has been teaching him when the first letters he could identify are B, R, Y, and N. Miles is by far my most social child and loves playing with friends. His best friend is his buddy Ben who moved in just down the street from us (you can see him in almost all of the pictures above), but he also thinks that all of Mason and Brynn's friends are his best friends, too.

Miles and his happy attitude have pulled us through a lot of tough times and I know that he was placed in our family as a special blessing to help us through the trials we've faced. 

We love our crazy Bubba and wouldn't change a thing about him.

A Swimming Pool Birthday

For months now Miles has been telling anyone who will listen about the swimming pool birthday he was going to have. I have no idea what inspired this choice since it is the dead of winter and all thoughts of swimming disappeared months ago when summer came to an end, but Miles never had a moment's doubt that a swimming pool birthday was the only way he wanted to celebrate turning 3. So we decided to take all of our family and some friends to check out the newly redone Orem Rec Center pool and gave Miles the swimming pool birthday he's been dreaming of. Everything about the pool from its size and depth to its temperature and play things was absolutely perfect! Cousins and friends could be seen playing and laughing in every direction and Miles was grinning from ear to ear the entire time, so I would say it was a complete success. A huge thanks to my friend, Lissy, who made it all possible and to my Aunt Marilyn and her daughter-in-law Naomi for making Miles' cake which he loved.

Happy Swimming Pool Birthday Miles!

Pit Stop

Someone once told me that Omaha is America's best kept secret. After our first 6 months of living here I think there may be some truth to that. It may not be as glamorous or enticing as other places, but it really has so much to offer and is a wonderful place to live and raise a family. We've always known that our new location wasn't going to be a hot vacation destination for our friends and family, and sure enough we haven't had very many people rushing to plan their next exotic getaway to Omaha. As it turns out, though, Omaha makes for a convenient pit stop when traveling across the country, so we have been able to attract a few visitors that way.
One such visit happened back in October when Scott's little sister, Becky, and her family were moving from Virginia Beach to California and stopped to spend a couple days with us during their cross-country drive. We hadn't seen them in a year and a half, so it was fun to spend some time with them. We mostly just hung around the house and yard playing, but did make a quick visit to the zoo.

An added bonus of having them come stay with us was that they brought their dogs, Rocko and Rhona, with them. The kids were in heaven!! Mason spent every second he could running around playing with Rhona in the backyard. Seeing him so happy weakened my resolve to remain a dog free house and we just might end up getting a dog in the future.

We are so glad that Becky and Jeff made a stop in Omaha on their way to start new adventures in California. To anyone else who may find themselves in our neck of the woods, remember that we have lots of extra space, a zoo pass ready to be used, and we love having visitors!

Million Dollar Baby

I still cringe when I think back on the conversation Scott and I had while driving to the hospital before Ellie was born. We talked and laughed about the impact this little girl of ours was having on our savings account already. The less-than-ideal insurance we had while Scott was in graduate school didn't have maternity coverage so we were paying out of pocket for my pregnancy and delivery. We joked that when the time came for her to go to college and get married we would tell her sorry, but we used your college fund to pay the hospital bills when you were born. The thought never even crossed our mind that she would be anything less than perfect or that there might not be a possibility of college or a wedding in her future. Little did we know that in just a few short hours the perfect life we had envisioned for our daughter would be shattered and that we would give anything in this world to have college and marriage be a part of her life. Also, the joke was on us, because the cost of my delivery that we were making such a big deal about would soon look like pocket change next to all of the medical bills that quite literally made Ellie our million dollar baby.  

I have hesitated writing this post for several months now because I feel a little uncomfortable discussing our personal finances on my blog. But, after experiencing such an unbelievable outpouring of help to cover Ellie's medical and funeral expenses, I want to share what that money was used for and to try and convey what a huge blessing everyone's generosity has been for us as we try to move forward. 

I've talked a lot about how demanding Ellie's day to day care could be, but if all we had to worry about was just taking care of Ellie it would have been completely manageable. The more challenging and overwhelming part of having a medically complex child was the financial worry. Just to paint a quick picture of how fast things can add up when caring for a trach and feeding tube dependent child, here are a few examples of what Ellie's care cost:

Trach/g-tube supplies and equipment= $4,000/month
Specialized formula (Peptamin Junior) = $30/day
Hospitalization = $100,000/week (that does not include doctor or surgical bills)
Lifeflight = $12,000
Genetic Testing = $10,000
Monthly Synagis Shots (RSV vaccine) = $3,200/month
Chest PT vest = $15,000
Electric Bill while running medical equipment = doubled

The month we brought Ellie home with her trach our Electric bill more than doubled. This is how our electric usage changed the month after Ellie died.

That's what insurance is for, right? Unfortunately, the reality is that even after high deductibles and out of pocket maximums are met (in a matter of days), insurance companies will still do everything in their power to get out of paying these bills. In our case, Ellie was frequently denied necessary equipment and treatments because she didn't fall under one of their approved diagnoses. Guess what, when your child has a rare genetic disorder that no doctor has even heard of, it's not going to be on any of the insurance company's lists. You as a parent then get to spend hours on the phone frustrated and trying to get anyone to listen to you. You fill out stacks of paperwork and write letters of appeal pleading your case. Sometimes it pays off and other times it doesn't. Then you are put in the impossible position of either figuring out how to pay for it on your own or going without a potentially life saving treatment for your child. Every penny spent was completely worth it to watch our daughter be happy and thrive.

Because of the extreme costs associated with caring for these wonderful kids, each state has a waiver program for technologically dependent (trached) children that provides families with the highest level of state resources that include nursing hours, respite care, full medicaid coverage, and other resources to help relieve the strain of their care. When Ellie got her trach we were placed on what we were told would be a two year waiting list for Utah's waiver. In the mean time, we were left to fend for ourselves.

Scott and I have always tried to be financially responsible. We believe in living within our means, paying our tithing (a religious belief of ours), saving before spending, and avoiding debt. We have practiced each of these things for our entire marriage and felt like we were financially prepared. All of these things ended up playing against us after Ellie was born. It felt like we were stuck in a broken system when even when our medical bills exceeded our income, we were unable to qualify for any type of assistance. We were advised by some to quit working, spend down our savings accounts, and finance our cars so that we could qualify for the help we needed, but this went against our core values so we continued to work our hardest to make ends meet. It was discouraging to watch everything we worked so hard for melt away, but we were blessed in countless ways and we are so grateful that through these blessings our family's needs were always met.

When we were considering which job to take after graduation Union Pacific's offer had several financial benefits that would significantly help us get back on our feet, but at the top of that list was the fact that Nebraska's waiver program did not have a waiting list. It took us a couple of months after our move to get all of the paperwork done and approved, but starting in August Ellie was officially on the Katie Beckett Program. We had struggled for a year to make it on our own and miraculously had survived. We finally had access to all of the resources we needed to give Ellie the best care possible and a huge burden was lifted off our shoulders. I felt more optimistic about our future than I had in over a year. It proved to be a short lived victory, though. Ellie died just a few weeks later and then we had all of her funeral expenses to add to the medical bills we were still paying off.

I've learned a lot while being Ellie's mom, but one of the things I've had the opportunity to practice over and over again is humility. I have learned that the Lord most often answers our prayers through other people and he can only help me as much as I am willing to allow others to serve. It's been a tough lesson at times for someone like me who prefers to take care of myself and my own problems. As much as I would have loved for Scott to suddenly get a 50% raise or for a large lump sum to magically appear in our bank account, that's not the way it works. In the days following Ellie's death, my best friend, Stacie, asked if I would be okay with her organizing a fundraiser and donation account to help with expenses. Without thinking much about it I gave her the go ahead. The next few days were a complete blur for me with word of Ellie's Auction swirling around in the mix with everything else.

I didn't fully understand what was going on, but I felt so much love and support that helped carry me through those difficult days. It wasn't until after Ellie's funeral that I even began to comprehend the extent of Ellie's Auction. Honestly, I still don't even have a complete understanding of everyone who contributed and what took place to make it all possible. What I do know is what started out as a single night of selling $2 raffle tickets at a local store turned into a nationwide online raffle with some pretty unbelievable donated prizes. In addition to Ellie's Auction there were others who did their own fund raisers on their etsy shop or selling baked goods to neighbors and sending all of the proceeds to us. Not to mention the many friends, family, and complete strangers who generously donated to Ellie's memorial fund.
This is where I run out of words. What can I possibly say to adequately express my gratitude to all of you out there who gave so selflessly and made it possible for us to pay off Ellie's medical bills and funeral expenses that would otherwise have taken us years to pay off on our own. While there is nothing that anyone can say or do to lessen the constant ache in our hearts for Ellie, by making it so we no longer have a line in our budget and monthly payment to remind us of our loss, you have cleared away the hopeless dark clouds that were left hanging over our heads and allowed us to feel instead the warm rays of sunlight that Ellie filled our life with.
So anyone out there reading this who played a part, big or small, in any of this, please know what a difference you have made in our life. I wish I could thank every single one of you personally, and believe me I'm trying, but there are so many contributors I will never know by name. You know who you are, though, so Thank You!!!

Ball Player

Passion is defined as a strong feeling of enthusiasm or excitement for something or about doing something. Based on this definition it is safe to say that while Miles loves playing with all balls, he is passionate about basketball and baseball.

What pushes his affinity for basketball beyond just liking it?

Well, first of all, he plays the part by wearing a jersey or some other item of clothing he has deemed basketball clothes (i.e. warm-up pants or a shirt with a picture of a basketball on it) nearly every single day for the last six months. As soon as he is dressed he proudly exclaims, "I are a basketball player!"

Summer Version on left. 

Winter version on right (notice basketball shorts are over pants)

Second, I can't think of a time when Miles willingly stopped shooting hoops without us having to drag him away from it. This applies to shooting hoops standing in the back of grandpa's truck, sitting on our shoulders shooting, or shooting on his hoop downstairs.

Third, he can't even imagine why anyone and everyone wouldn't want to play basketball.

But, really, the most obvious sign that he is a die hard basketball player is the fact that he is amazingly good at dribbling, passing, and shooting a basketball, especially considering he isn't even 3 yet.

The only thing that even comes close to matching his passion for basketball is baseball. For several months this fall we literally spent hours outside each day playing baseball. He would wake up asking to go outside and wouldn't drop it until we had played a nice long round of catch. If I wasn't available to play with him he would drag the tee and bucket of balls out in the backyard and hit balls off the tee by himself.

When Scott pulled in from work Miles would be there to greet him with bat and ball in hand ready for some batting practice. I know that I'm a mom and am amazed by anything that my kids do, but seriously this kid has some skills. One day Scott was out in the yard pitching to Miles and he was cranking them down the street when Scott overheard the neighbor a few houses down yell into his house "Mom, he's playing again!" Their whole family proceeded to gather on the porch to watch Miles hit the ball. They couldn't believe he is only 2. Let's just say it may have been Scott's proudest moment as a father. It is much too cold to play baseball outside now, so much to Miles' dismay our baseball gear is taking a break until Spring.
After well over 2 years of Miles being obsessed with balls I've been waiting for a new object of desire to come along, but I'm starting to realize that that day may not come. He just might be a ball player for life.