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.

Thumb Sucking

Miles has been sucking his thumb pretty much since the day he was born.

Pretty soon his Uh-Oh* became part of the equation and he would only suck is thumb if he was holding his special blankie. 

We considered this a good thing because we were able to limit his thumb sucking by keeping his uh-oh in his crib for naps and bedtime only. Eventually, though, he caught on to the system and we started finding him with a corner of his blanket pulled through the slats of his crib so he could suck his thumb throughout the day.

Then life took a few sharp and crazy turns and Miles' Uh-oh became pretty much the only stable thing in his life. We were just glad there was something that could give him comfort during this challenging time and never questioned how much he used it.

Now, here we are, a few years later, and we might as well start calling him Linus.

With his 3rd birthday right around the corner I probably should be more concerned with stopping this bad habit, but truthfully I'm not. They're only little once.

* It has been brought to my attention that I have never explained how the name Uh-Oh came to be. One of the first things Miles learned to say was Uh-oh. He would say it whenever he dropped something. He had always been an amazing sleeper and all we had to do was lay him in his crib with his special blanket and he would put himself to sleep...without exception. When he reached the dreaded milestone of pulling himself up in the crib he would often times drop his blanket out of the crib. He couldn't fall asleep without it so he would stand and yell out Uh-Oh, Uh-Oh until one of us came and got his blanket for him. It didn't take him (or us) long to figure out that when he yelled Uh-Oh from his crib we got his blanket and so during the day he would stand outside of his crib saying uh-oh, uh-oh and pointing in his crib for his blanket. Eventually the whole family developed the habit of calling it his Uh-oh and the name has stuck.

Speaking of thumb suckers.....

Ellie was a die hard binky baby, but just a week or two before she got sick she had developed a habit of sticking her thumb in her trach. All. The. Time. We already had a hard enough time keeping her HMEs (a humidification and filter attachment on the end of her trach) on without her pulling them off, but now the second she pulled it off she would purposefully stick her thumb right in the opening. Good thing she had a decent air leak around her trach and tolerated being capped for short amounts of time so she wouldn't suffocate herself by doing this. We immediately knew when she was "sucking her thumb", as we started referring to it, because all of the sudden her voice would become audible. It was a silly (and slightly worrisome) habit, but it was one of the ways her personality was really starting to shine through.

So I guess we technically had two thumb suckers.

Goofy Grins

With a five and seven year old running around our house, we seem to be in a perpetual state of goofy grins these days.

Mason was sporting a nice Jack O' Lantern grin all summer after knocking out one of his front teeth and waiting for several other permanent teeth to grow in.

By the end of the summer his remaining front tooth was starting to wiggle and there was still no sign of the missing front tooth or his lateral incisor he lost when he was one growing in. 

In what felt like an untimely decision, Mason pulled out his front tooth the night before school started, leaving a mighty three tooth gap on top. Poor kid couldn't take a bite out of anything hard for weeks, but he adapted, as kids always do. 

Now he is looking good with all of his big permanent teeth growing in.

I guess with all of the excitement surrounding Mason's teeth the last few months, Brynn decided she was ready to get in on the action. Her two bottom teeth have been wiggly for well over a month now. She liked to show people her wiggly teeth, but was not interested in pulling them out at all. It got to the point that one of them was practically hanging out, but it was still a wrestling match for Scott to get his fingers in her mouth to pull it. She seemed pretty pleased with the result, though, so hopefully she'll be a little more cooperative with the next tooth which could be ready to come out any day.

Goofy grins or not, I sure love seeing them smile.

The Kiddos

There is absolutely nothing that brings me greater joy than observing the deep love and friendship my children share with one another. Moments like when the squeak of the school bus brakes sends Miles sprinting outside to welcome the kids home with a hug or when Mason and Brynn sneak into one another's room and fall asleep together. These are the moments that make every day worth it. 

I'll always remember the awful moment when I realized Ellie wasn't going to make it. I was slammed with so many indescribable thoughts and emotions, but all I can remember saying over and over was, "What are we going to tell the kids?" I don't think it's fair for me to say that my kids loved Ellie more than other children love their baby brother or sister, because that's probably not true. I do, however, believe that when we sacrifice for something, our love for it deepens. My kids sacrificed so much for Ellie that the relationship they had with her felt like more than just your typical brother and sisterly love. A lot of people have asked me how the kids have been doing since Ellie's death. My answer: they are doing surprisingly well. Just as each of them had their own unique relationship with Ellie, they have each had their own way of working through their loss.

Mason is a thinker and finds comfort in understanding things. He was the one who wanted to be there whenever we changed Ellie's trach so he could see the hole in her neck and how the trach went in and out. He looked up pictures and videos about ear tubes placement to understand what it meant when we said Ellie had tubes put in her ears. He always has a lot of questions and is not satisfied with superficial and fluffy answers. He wants to understand what is really going on. One night shortly after Ellie died Mason was irrationally upset over something random but eventually the truth of what was really upsetting him came out when his yelling turned into "...and the doctors and nurses didn't do anything. They didn't even try to save Ellie..." and he wouldn't believe otherwise until we described every single thing they did from doing chest compressions to starting an IO (interosseous access = IV in the shin bone) to give her medications. Those were not the pictures of Ellie's final moments I wanted to paint for my 7-year-old, but that is the information he needed to accept that there was nothing else we could have done. Another night he mentioned to Scott that since he was the one who got Ellie sick (he got sick right before Ellie did) it was his fault she died. Again, we had to explain the whole process of what happened inside Ellie's body (to the best of our understanding, which is limited) and that she didn't die just because of the sickness, which was not his fault in the first place. Thankfully, as time has passed he doesn't seem to focus on her death as much as his memories of her.
Mason's favorite thing was to make Ellie smile and laugh so it's no surprise that he loves to look at pictures of Ellie making funny faces and smiling. My aunt an amazing photo book of Ellie's life for us and gave each of the kids their own. Not a day goes by that I don't find Mason up in his room smiling and laughing at his favorite pictures of Ellie. He likes to talk about Ellie, especially the funny things she would probably be doing if she was with us in any given situation.

Brynn is a nurturer. She loved to take care of and protect Ellie. She was always by my side doing Ellie's cares and therapies or just playing with her baby sister. I could hardly even walk when I was carrying Ellie because Brynn would be bouncing and hopping in front of me talking to Ellie and tickling her feet as we walked. After Ellie's death Brynn turned all of her motherly instincts toward me. Before we left Utah she told my mom that she was going to take care of me when we went back to Omaha, and she did. She was always the first to notice a silent tear or a sad look in my eye and was immediately at my side hugging me and telling me, "It's okay to be sad, mom." She has always been very matter of fact when talking about Ellie dying, but her overall emotional state was extremely heightened for the first month or so. She would start to cry at the littlest and most random things and by cry I mean heart wrenching sobs. Twice her teacher had to call me to come and get her from school because she was uncontrollably sobbing and no one could calm her down. Her emotions seem to have settled down and she is pretty much back to herself. I can always tell when she's thinking of Ellie because she will go get her Ellie blankie and her forever bear to snuggle up with. She is ever an optimist and looking at the glass as half full. Unfortunately for me and my aching heart that often involves her using the phrase, "It's a good thing Ellie died because..." which feels like a dagger being plunged into my heart, but I know that it is just her five-year-old way of expressing her thoughts. She spends a lot of time drawing pictures of Ellie with our family and writing Ellie's name all over things. Every stuffed animal and doll she owns now has the name of Ellie.

Miles is...well...two. He doesn't really understand what has happened, which makes it hard. For the first few weeks after Ellie died Miles became a permanent attachment to my hip. He wouldn't let me so much as leave a room without carrying him with me. My once independent toddler refused to do anything, and I mean anything for himself. It was like my arms were finally available to him and he wasn't willing to let it go for even an instant because he thought Ellie would be back to take it away soon. As time has gone on and he has realized this is the way things are now, he has rebounded into wanting complete independence with a strong willed "I do myself" mentality. Even though Miles has appreciated getting more attention, he really does miss Ellie. He and Ellie had a very sweet relationship. As Ellie's personality started showing through more and more this summer, Miles always wanted to be near her and loved to interact with her. He was always trying to "make Ellie happy" by sharing his uh-oh with her (most often by covering her head with it), holding onto her saucer and running around in circles saying, "try and get me", and getting inches from her face and saying "hi, hi, hi" to make her smile and laugh. Now he is left wondering where his playmate has gone.  It is impossible to explain anything to him because he is right in the thick of the dreaded 'why' phase where he will insatiably ask 'why' to anything and everything we say. The hardest days are the days he becomes fixated on where Ellie is and why we can't go get her. There may not be a more heart wrenching and frustrating experience then trying to calm down your toddler who is throwing a huge tantrum because he wants to play with his little sister and you won't go get her. Then, after what feels like the hundredth time of trying to explain that Ellie isn't coming back home because she lives with Jesus now, he starts singing Daniel Tiger's "Grown-ups come back" to defend his point that she is going to come back. Thankfully these days are becoming fewer and farther between. He still considers her very much a part of our family and any time we are talking about people in our family he will pipe in, "and Ellie!" like he doesn't want her to be forgotten and left out. I love when he walks past the picture we have of Ellie sitting on Jesus' lap and he exclaims with the most genuine excitement, "Look! Ellie is with Jesus!!"

We talk about Ellie a lot and she is still very much a part of us.
Last week we got our first snow of the year and the kids couldn't wait to go outside and play in it. Pretty soon I heard Mason yelling,
"Look Mom! We're making snow Ellies!"

It made my day.