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 With those emotions as a driving factor, I progressed into a withdrawn phase of grieving and no longer had the desire to share with other people and as a result this blog fell silent.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.

Friends of 4p+

Scott and I have talked and dreamed about starting a foundation for Trisomy 4p pretty much since they day we received Ellie's diagnosis and we were left with nowhere to go for answers or help. At the time, our lives were completely consumed by caring for Ellie and our other children so there wasn't much time or energy left for lofty goals, such as this, but we kept saying it would happen some day.

Much sooner than we expected and under different circumstances than we desired, some day has arrived and we are taking the first steps toward make our dream a reality.

I am excited to introduce....

A huge thank you to Ali Carlile for creating this logo for us.

On February 28th we launched our new website friendsof4p.org. Right now it is just a blog where we are spotlighting a different child with trisomy 4p each day during March in honor of trisomy awareness month, but we have plans to gather more content and build it into a full website where family, friends, educators, therapists, and medical teams can go to learn more about Trisomy 4p and better understand these unique kiddos. Basically we are taking some of the valuable information we have access to within our private 4p group and making a public place for it so that others involved in the care of those with trisomy 4p will be able to learn more while still keeping our group a private place for families to share more personal and sensitive things. 

This is only step one of many we will have to take to reach what we have envisioned, but we are excited to be starting this new endeavor that is very dear to our hearts.

In addition to the spotlights, our 4p group is spreading awareness this month by changing our profile pictures to these awesome custom banners Sarah Rodgers made for everyone.

Girls' Weekend

Back at the beginning of February my mom, Whitney, Kacie, and I took off together on a fun girls weekend, in part to celebrate my 30th birthday. It was a very fun and relaxing weekend and just what I needed to break up the long Omaha winter. 

I flew out bright and early Friday morning. I have to admit that the 2 hour flight from Omaha to Salt Lake City with just me and my book was one of the best parts of the entire weekend. Being in a quiet airplane with 2 hours of guilt free, uninterrupted time was heavenly. Once in SLC, I met up with my mom and Kacie and we flew the rest of the way to San Diego. The timing worked out perfectly and Whitney pulled into San Diego just in time to pick us up from the airport.

Our main event of the weekend was running in a mermaid series half marathon (a girls only race). I tried really hard in the months prior to get motivated and train for the race, Scott and I even purchased a treadmill for Christmas, but it just didn't happen for me. I was SUPER unprepared for the race and probably should have switched to the 10K with my mom and Kacie, but I decided to give it a go with my only goal being to finish without causing an injury.

The course was beautiful running along the harbor and out around an island. Being in a fun race environment reminded me just how much I love running. Although my end time of 2:14 (20 minutes slower than the last half marathon I ran) was nothing to brag about, I was pleasantly surprised at how well the race went for only having run over 3 miles once during my "training". I was able to run the whole thing, even if at only a 10 minute pace, and overall felt pretty good until mile 11 when my knees felt like they were going to explode and my pace slowed WAY down.

Whitney on the other hand had been diligent with her training and had an amazing race and set a PR finishing in 2:00.35. (Just a few weeks later she ran the Phoenix half marathon in under 2 hours.) My mom and Kacie both did great in the 10K. Kacie had a great run despite a strained calf muscle that she's been battling for several months. I was especially proud of my mom. She is a great athlete who will bike and swim for miles and miles without batting an eye, but does not enjoy running at all. Despite that she decided to challenge herself and join us for the race. She trained well for it and did great. At the end of the race she declared that she still dislikes running, but we were all proud of her for doing it.

 

We filled the rest of the weekend with shopping, eating yummy food, plenty of rest and relaxation, and lots and lots of talking. A huge thanks to all of our husbands for making the necessary sacrifices that allowed us to make this happen. It was a quick trip with us all returning home Sunday evening, but it was just what I needed.

I may have grown up without a sister, but I sure hit the sister-in-law jackpot when my brothers married these girls and we all know I have the best mom in the world. These three ladies are the best sisters a girl could ask for and I'm lucky to have them.

A super yummy and fancy restaurant my mom treated us to.

Kacie on tip toes and Whitney and me slouching.