Ellie Day

One of Brynn's first questions as she was processing the news that Ellie had died was, "So May 16th isn't Ellie's birthday anymore?" I explained that although Ellie won't be here turning a year older anymore, May 16th will always be a day we remember and celebrate her life. Mason quickly piped in, "We'll call it Ellie Day!" From that moment on, May 16th has been declared Ellie Day at our house. Over the next nine months the kids loved to come up with big, elaborate party ideas for Ellie Day. Initially, I considered going along with their plans and throwing a big party in remembrance of our sweet Ellie, but as the day grew closer I found myself in a very private phase of my grieving (hence the year long blogging hiatus). My feelings and memories of Ellie are so precious and tender to me that I feel very protective of them and I don't want to force them on others for fear that people will grow tired of hearing about her and I can't bare the thought of negative feelings being directed toward the memory of her. I wasn't in a place emotionally where I wanted to play host to a bunch of people who were only there because they felt obligated and I didn't care to get hundreds of solicited likes or comments on a social media post. All I wanted was to be surrounded by and hear from the people who genuinely loved Ellie most. The people who would wake up on May 16th and feel her absence just as much as I would. So that is exactly what we did. We took a very quick trip back to Utah (made the 14 hour drive, were there for Ellie's birthday then turned around and drove 14 hours back home) and had what can only be described as an absolutely perfect day celebrating and remembering our sweet Ellie. The way that everything fell into place was undoubtedly a tender mercy from our loving Heavenly Father and I felt very aware of His love for us all day. Now, 9 months later, I am finally ready to share about our amazing Ellie Day!

I am so grateful for the happy and sweet memories we have of celebrating Ellie's first birthday with her. I remember the weeks leading up to Ellie's birthday I felt a heaviness in my heart as I started planning for her party and was constantly faced with the reality of her delays and just how far off from a typical 1-year-old she was. With our older kids I had planned a first birthday party revolved around a theme that was special to them. Scott and I joked about possible themes for Ellie's party since her favorite things consisted of stuff like crinkling wrappers and chasing the sat monitor probe light on her foot - both of which have pretty limited searches on pinterest for party ideas. With the other kids I had to worry about getting them to sit by their cake for a picture without crawling over and destroying it first. With Ellie I worried if we would be able to get a picture of her sitting on her own by her cake because she was still so tipsy with her sitting - let alone the fact that there was actually no point in having a smash cake since she couldn't eat anything orally.

I still remember the day I took Ellie for a swallow eval and they brought out the bubbles to get her to cooperate and a light bulb went off in my head - a bubble party! It was the only typical 1-year-old thing Ellie liked and what a perfect first birthday party theme! I called Scott on my way home and excitedly told him I had finally figured out what Ellie's party theme would be. He laughed at me for being so excited about something so trivial, but was glad I had found a party idea I was happy about. Little did either of us know that not only would this be the theme for her first and only birthday party, but it would essentially become Ellie's brand.  

In the end, the party came together wonderfully and it turned out to hold some of our fondest memories of Ellie's life. 

I have decided that I want to incorporate some of the details from Ellie's one and only birthday into our yearly Ellie Day celebrations. I think it can go without saying that there will always be a variety of bubbles incorporated in whatever we do. I have also decided that each year I intend to make a different version of Ellie's giant cupcake. It will always be Ellie's special cake. I was surprised and so happy when I found the birthday banner I had made for her bubble bash that had unintentionally been kept and tucked away in a random box. (I have since had it laminated to preserve it for use year after year.)
 The night before Ellie Day I decorated the house with her birthday banners, cake, and balloons. Going through the typical birthday routine of decorating a cake and putting up decorations proved to be very therapeutic. It just felt right to be doing exactly what I should be doing the night before my daughter's birthday.

Ellie's 2nd Birthday Cake

We knew we wanted to be in Utah with family to celebrate Ellie's birthday, but the timing was difficult with it falling right during all the kids' end of school activities that they didn't want to miss. It was starting to look like a trip just wouldn't be plausible. Until one day an advertisement for the Running with Angels 5k came across my Facebook feed and grabbed my attention. 

This is a 5k run that is inspired by Pam Hansen and her book Running with Angels. It is targeted toward families who have lost a child and proceeds from the race go to Intermountain Healthcare's Angel Watch program - a program that assists families who have a baby with a life-threatening condition. You can imagine my excitement when I saw that this took place in one of my favorite places - Thanksgiving Point Gardens - on May 16th!!!

It was just too perfect and there was no way we could NOT be there, even if it meant an extremely quick and impractical trip. Upon hearing about the race my family all expressed interest in joining us on team Bubbles for Ellie. My mom even ordered matching Bubbles for Ellie shirts for everyone on our team. And just like that my wish of being surrounded by those who loved Ellie the most was granted.

Brandon and Whitney couldn't make it up from Arizona, but they wore their Ellie shirts and did their own family fun run at the park that morning.

The race was the perfect environment to start off Ellie's birthday. These are the kinds of days when it can be so hard to watch the world going on around me as if nothing has happened and just feel so alone in my grief and loss. Being surrounded by other people who were outwardly remembering a little loved one they lost by sharing their stories and wearing shirts in their honor made me feel much less alone and able to talk freely about Ellie without it being uncomfortable.

Before the race started they had a dove release in honor of all the angels we were running for. 

 This was about the time Mason decided that he was going to try and win the race, so when the gun blew he took off ahead of us all at a speedy pace. After awhile I was surprised he hadn't slowed down enough for us to catch up so I sent Scott ahead to find him. Scott caught up with him just in time to finish together in 32 minutes. Not bad for an 8-year-old's first 5k with no training (the next day he was walking like he'd run a marathon). He didn't quite win (11th in the boys under 12 division), but it did start a fire in him that he wants to be a runner and compete in more races. The rest of us enjoyed a much more leisurely pace as we walked/ran through the beautiful gardens, talking and laughing along the way.

Coming down the home stretch.

While we ran we reminisced about the time we took Ellie to the tulip festival on her first family outing after the sick season ended. I had envisioned spending a beautiful evening as a family, enjoying the fresh spring air as we strolled through the gardens. I hoped to get some great 1-year pictures of Ellie with the tulips. Ellie did not share my vision. She absolutely hated it and cried the entire time. I was so disappointed. As it turns out we got one of my all-time favorite pictures of Ellie with her classic, scrunched up, crying face and a whole bunch of priceless, real-life memories with her.

Notice the crinkly wrapper we tried to bribe her with.

My dad knew a lot of the race organizers and when we picked up our packets before the race and they learned it was Ellie's birthday they were all very sweet and gave our group a lot of positive attention during the race including announcing it was Ellie's birthday over the loudspeaker after we finished the race. Like I said before, I couldn't have asked for a more perfect atmosphere to be remembering Ellie on her birthday. I really hope we can make participating in the Running with Angels 5k a yearly tradition to celebrate Ellie's birthday.

After the race we headed over to the cemetery for a little birthday party.

We were grateful the rain held off while we blew some bubbles, sang happy birthday, and sent some balloons to heaven for Ellie. When the rain started up we returned to my mom's house for a lunch together. 

I have to mention that we managed to confuse Miles thoroughly with all the talk of Ellie's birthday. He was so excited to go to Utah for Ellie's birthday but it wasn't until we got there that he verbalized his thoughts by saying, "I am sooo excited to see Ellie!" The whole time he had been under the impression that Ellie was going to be at her birthday party, because when have we ever been to a birthday party when the guest of honor wasn't actually there? We felt so bad we hadn't explained better and had gotten his hopes up. As we tried to explain that Ellie wouldn't be there he told us repeatedly, "I think Jesus is going to drive Ellie to Utah in the Mazda." It is still so hard for Miles to understand Ellie being gone. He thinks that she is just somewhere else with Jesus and is still waiting for the day Elllie will come back home. 

 

After lunch my dear friend Stacie stopped by to deliver the sweetest birthday present ever. Her and her amazing friend (and I like to think my friend, too) Sarah spent countless hours turning some of Ellie's old clothes into this beautiful quilt. There are no words to describe what a precious gift this is to me. Pictures just don't do justice to all the incredible details.

Another of Stacie's friends made this darling stuffed bear from one of Ellie's sleepers.

Thank you so much to Stacie and her friends for sharing their incredible talents with our family. 

Another fortunately timed event that made our trip out to Utah worth it was the open house for the new Payson, Utah Temple. In the Church of Jesus Christ of Latter-day Saints the temple is a sacred and holy place where families can be sealed together for all eternity. When a temple is completed they hold an open house for anyone who is interested to tour the temple to see the beauty as well as learn more about the house of the Lord. After the open house the temple is dedicated and from then on only members who worthily hold a Temple Recommend can go inside where they participate in sacred ordinances. So the open house is a very unique and special time for our children to be able to go inside the temple and learn more about the ordinances they can one day choose to participate in there.

I couldn't have dreamed of a better way to close out Ellie's birthday than to be in a temple of the Lord with my family. It helped remind us that although we miss Ellie terribly, thanks to the blessings of the temple our family will be together forever and we will be with her again someday. There is nothing that can bring peace to a grieving mother's heart more than that beautiful promise.

The next morning as we drove through Provo Canyon on our way home there was the most beautiful rainbow. I couldn't help but feel like Ellie was smiling down on us and letting us know she had enjoyed her birthday celebration as much as we had.

Radio Silence

This blog has sat abnormally silent for quite a while now and more and more people have been reaching out asking me why. I guess that's because I'm not what most people would consider a private person. I've always been a pretty open book. Never was that more true than during Ellie's life. I felt very strongly about sharing Ellie's story - mostly because I wanted people to know and understand Ellie so they weren't uncomfortable being around her. After Ellie died the need to share her story and document her life was more important than ever. As I look back now, I think this was my form of denial in the grieving process. I felt like as long as I kept talking about Ellie and sharing her story she wouldn't really be gone. After a year of sharing I began to feel like the statute of limitations on openly grieving was up. I felt that people were growing tired of hearing about Ellie and I didn't want to be "that person" who forces their feelings on everyone around them. I couldn't bare the thought of people having negative feelings toward the memory of Ellie and felt a need to protect her. With those emotions as a driving factor, I progressed into a withdrawn phase of grieving and no longer had the desire to share with other people and as a result this blog fell silent. I still occasionally wrote down some of my feelings or documented some things about the kiddos, but I never hit the publish button at the end. I guess I just felt too vulnerable.
Now, almost a year later, as I am trying to reclaim pieces of who I used to be and things that brought me joy, I have decided I would like to start writing again and documenting this eventful time in my kids' lives. But I'm not ready to do it with an audience. I have gone back and forth and back and forth on whether to keep this blog public. There is a part of me that feels the desire to keep Ellie's story public and accessible for others facing similar challenges, but then I realize that our story isn't exactly comforting or inspiring. A parent receiving a new trisomy 4p diagnosis doesn't want to read about the child that ended up dying from complications. A new trach or g-tube parent isn't going to want advice or encouragement from a parent who failed to keep their child healthy and alive. That's like going to a morbidly obese person and asking for weight loss advice. I don't even have any inspiring perspective for families that have lost a child. All I have to share is the shattered pieces that are left of me and it seems to me like the only reason anyone would want to follow that is to oogle at the train wreck that I have become. For this reason I have decided it is time for this blog to be private. Not only will it be private from the world, but I will not be inviting any readers to this blog for the time being. Maybe that will eventually change. But for now I just need a little radio silence.

Visitors

As I mentioned before, my parents came in town the first weekend in May for Mason's baptism and brought along with them Cannon, Kennedy, and Rachel Faye. Because of work and school schedules they were only able to stay for one whirlwind of a weekend, but we did our best to fill up every minute with fun. Mason, Brynn, and Miles were so excited to show their cousins Omaha.
We picked everyone up from the airport Friday evening and  decided to pass some time downtown playing at our favorite big slides rather than getting stuck in rush hour traffic. I'm glad we did because it turned out to be one of the highlights of the trip. Mason and Cannon had contests to see who could go the fastest (with the help of wax paper and cardboard) and get the most air off the jumps. The girls preferred to all go down together and would giggle the whole way. Miles was just so happy to be with Grandma and Grandpa.

When the kids were all slided out we stopped for dinner at Red Robin and then headed home. After giving their cousins the tour of our house and introducing them to Spotty it was time to try and get some sleep. We pulled out Brynn's trundle and put it together with her bed for all the girls to sleep on. Let's just say there were a lot more giggles than sleep happening in that room, but that's what cousin sleepovers are all about, right? Cannon didn't want to sleep in Mason's room since he's "not really a lizard guy" and didn't like the idea of sleeping in the same room as Spotty. So Mason and Cannon crashed downstairs on the couch and love sac.
 The next morning was Mason's baptism and it meant so much to him to have his cousins and grandparents there supporting him.
Later that afternoon we went to the Zoo. This Zoo trip was probably our best zoo trip yet. It was a whole different experience going with just the older kids and was really fun.

We covered almost the entire zoo which amounted to about 5 miles of walking according to my mom's phone. After less than ideal sleep and a day full of walking everyone was pooped and we went home for pizza and a movie night.

On Sunday, our final day, we all went to church and then headed out to the Winter Quarters temple and Mormon Trial Center. Winter Quarters is a very important place not only in the Mormon church's history, but in our own family history.

The Winter Quarter's temple is one of the church's historic temples. Because of limited space in the specific historic site chosen for it, it is the smallest LDS temple, but we are so grateful to have a temple so close to us.

 After our time at the visitor center it was time to say goodbye and drop them off at the airport. It was a quick, but fun visit.

Baptism

Turning eight years old is a very big deal in The Church of Jesus Christ of Latter-day Saints. It is the age when children are given the opportunity to be baptized and confirmed a member of the church. We believe this to be the first necessary step that one must take to return to our Father in Heaven - hence the big deal. Mason has been working over the last year, and really his whole life prior to that, to prepare himself for baptism by reading the Book of Mormon, learning gospel principles, understanding the sacred covenants he would be making, and trying to live righteously. Mason was interviewed by our bishop and was found ready to be baptized.

 On May 2, Mason was baptized and confirmed by his dad.

 It was a rainy spring day with the sun poking out from behind the clouds between little rain showers. Perfect rainbow conditions. I couldn't stop thinking of the first verse of the Primary song "When I am Baptized" that says: 

I like to look for rainbows whenever there is rain

 And ponder on the beauty of an earth made clean again. 

I want my life to be as clean as earth right after rain. 

I want to be the best I can, and live with God again. 

We are so proud of Mason for the decision he made to be baptized and are grateful for the wonderful example he is to his younger brother and sister who look up to him so much.

 

As always, my amazingly supportive parents flew out to support Mason on this very very important day. Not only that, but they brought along Cannon, Kennedy, and Rachel Faye with them. I am so appreciative of my parents who do so much to help bridge the gap created by all of our families living apart and allowing these cousins to maintain the close friendships they have always had.

8 is Great!

As always, Mason has been looking forward to his birthday with great anticipation for months. This year, more than ever, I felt the need to make it a day that left no doubt in his mind how special and loved he is. At the end of the day Mason told me, "This is going in the record books as the best birthday ever!" - mission accomplished!
The day started off with a surprise delivery of birthday donuts on the front porch from "someone who thinks you (Mason) are really cool!" I was so grateful to whoever went out of their way to make Mason feel so special on his birthday.
Next up was Mason's birthday party. Mason had some very specific requests for his party this year. He wanted a football party where all we did was play flag football with his friends, he wanted it on his actual birthday, and he wanted it earlier in the day so he didn't have to wait for it. None of those were completely unreasonable requests so we planned to have his party at a park nearby where he and his friends could play football. Easy enough, until the forecast refused to cooperate and the threat of rainstorms all weekend led us to schedule our church gym as plan B. Sure enough the rain persisted and we met in the church gym. After 30 minutes of the boys playing some intense football complete with running, sliding, diving, and colliding with one another and nothing but hard floors and walls to break their falls we decided to switch gears before someone broke a bone or got a concussion and started playing steal the flag and dodge ball instead. Mason was disappointed by this decision, but everyone else seemed to really enjoy playing the different games.

Mason helped make his cake this year. The candles were supposed to be in a play configuration.

Even though Mason didn't get his fill of football at his party, as soon as the party was over it was time for him to go to his actual flag football game where he got the ultimate birthday gift of getting to start on offense for the entire game (up until this point he had only played on defense). His birthday could have ended right then and it still would have been the best birthday ever, but there was still more fun and excitement planned.
We have a tradition that the kids get to choose where they want to go out to eat for their birthday dinner. Up until now, they have always chosen McDonalds, but this year Mason upped the ante quite a bit when he requested Red Lobster. Mason has always loved seafood with salmon and shrimp being some of his favorite foods. When he found out that you can eat crab legs and lobster he was dying to try them. So Scott and I took him out, just the three of us, for an extra special birthday dinner at Red Lobster where he enjoyed a grown man's portion of crab legs, coconut shrimp, and salmon. A couple of priceless comments were after we were seated at our table he said, "This is a lot different than I thought it would be....I thought it would look like the inside of Dairy Queen." and then at the end of the meal when he declared, "I think this just beat Taco Bell as my new favorite restaurant!"

The last event of the day was a trip to Petco for Mason to pick out his new leopard gecko. Mason has wanted a pet gecko for months and has been diligently saving his money so he could buy all the necessary equipment for it. We surprised him at this birthday party by giving him a terrarium kit complete with everything he needs and a coupon for his very own leopard gecko. When we got to the pet store he immediately knew which gecko was his (the biggest and grossest one). We came home and got everything set up for Spotty, his Gecko's chosen name, and watched him devour his first feast of live crickets in his new home. I have to admit that right about this time Scott and I were both experiencing some serious regret over agreeing to this, but seeing the excitement and joy in Mason made it worth it - almost.

As I mentioned before, I really wanted Mason to feel how loved he is, and thanks to all our family and friends who called, facetimed, sent cards, or reached out in any other way on his birthday there was no denying how special Mason felt.

As per tradition, here are a few things to document 8-year-old Mason.

- He is the 8-year-old version of tall dark and handsome. I constantly get comments from other moms about what a good looking kid Mason is or how their daughter has a crush on him.
- His good looks are balanced out by his social awkwardness.
- He is a reading machine and can rarely be found without his nose in a book.
- He has a very big heart and cares a lot about other people and their feelings.
- He loves being silly silly silly.
- Latest obsessions include camper vans, Harry Potter, geckos and football.
- He is a night owl who hates going to sleep at night. We often find him hinding under the covers with a flashlight and book long after his bedtime.
- Mason is incredibly smart. We've always called him our walking encycopedia because of the vast amount of knowledge he has about so many random subjects (see bullet three about reading anything and everything). He enjoys and excels in every subject in school. I am so curious to see what kind of career he ends up pursuing, since I can think of about 20 that he would be great at.
- His little brother and sister look up to him very much.

Cartwheel Mania

4/20/2015
A few months ago Brynn came home from gymnastics feeling discouraged because she was struggling with her cartwheels. She went straight to her room and shut the door. I went to check on her a little bit later, half expecting to find her pouting about it, but instead I found her doing cartwheel after cartwheel trying to get it just right. The next few days were filled with practice and countless repetitions. By the time gymnastics class rolled around the following week, all Brynn's hard work had paid off and she had mastered her cartwheels. She was beaming with pride as she took her turn doing near perfect cartwheels across the floor.
But it didn't stop there. Once she started, she hasn't been able to stop cartwheeling. Cartwheels have become a part of Brynn's natural stride. Whether she's walking through the house, down the sidewalk, or through a store she will casually flip around in a cartwheel every step or two along the way.
We are so proud of her for showing such determination and hard work to accomplish something she wanted.