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.

Nursery Dropout

At the beginning of the year, 3-year-old Miles joined the Sunbeams class in primary, thus making him an official nursery dropout. Nursery is the "class" (more like childcare) that children in our church attend when they are 18 months old until the January after they turn 3. Nursery can be a hard transition for kids as it is often the first time they are being left by mom and dad with virtual strangers. Each of our kids had an adjustment period after starting nursery where they would resist letting us go and even cry for a bit, but after a month or two they understood the routine and that we would be back at the end of church to get them. Miles' adjustment period lasted the entire year and a half he was in nursery. We were never able to successfully leave him in nursery without him ending up in hysterics. In his defense, nursery entered his life at kind of a difficult time. Miles turned 18 months old a little more than a month after Ellie was born. We had just moved in with my parents for the summer, Scott had disappeared to Omaha for his internship, Ellie was born and I suddenly became MIA as I was caring for her, so life was a little bit topsy turvy for this little one and half year old and I think it's pretty understandable that he was experiencing some separation anxiety. After several months of trying to get Miles to stay in nursery he started having a lot of fear about going. As soon as the closing song would start in sacrament meeting he would start shaking and repeating over and over "no nursery, no nursery". It wasn't worth the trauma it was causing so we started just bringing him home after sacrament meeting to hang out with Ellie and mom. We were hopeful after moving to Omaha that we could get him to start going, but then life really got crazy and Scott just ended up going with him each week. Because of his late December birthday Miles graduated from Nursery just a couple weeks after turning three making him a very young Sunbeam. Surprisingly, he hasn't really had a problem going to his new class. It helps that his best buddy, Benjamin Cook, is by his side. Honestly I think he just more comfortable because Brynn and Mason are in sharing time with him, too. Adios Nursery!!

Ellie's Headstone

Ellie's headstone has been placed and her spot is finally complete! It took a little longer than we had originally hoped, but it turned out absolutely perfect and was well worth the wait. Designing the stone that will forever represent Ellie and her life proved to be an overwhelming task for us. After spending some time walking around the cemetery looking at headstones, I knew that I wanted a stone that when people walk past it they think, this must have been a happy, sweet, and playful little girl. I wanted something that was youthful and had a personal representation of Ellie. With the help of our talented neighbor and friend, Shauna, we were able to design the perfect stone for Ellie. I got goosebumps the first time I saw the image Shauna created for us. The hair, the nose, and the little hand reaching for bubbles...then Miles came up behind me and exclaimed, "Look! It's Ellie!" and that sealed the deal. I knew we had the perfect stone. I will never be able to express my gratitude to Shauna for this precious gift she has given us.

I am anxious to get back to Utah so I can see Ellie's new and improved spot in person, but I will probably wait until Spring when the grass is green and has nicely filled in. In the mean time, thank you to all of our family and friends who visit Ellie regularly and send me pictures and messages to tell me about their visit. It means so much to me and makes it a little bit easier being so far away from Ellie.

Update: February 24

Today our dear friends, the Rodgers, took a detour down to Orem after their doctors appointments in Salt Lake City to visit Ellie's grave. They had never even been to the cemetery before and didn't know where her spot was so they drove around for a while until Sarah felt sure it was in a certain area and got out to walk around and saw some bright bubble containers and knew that must be Ellie. They blew some bubbles and put up some pinwheels for Ellie. Thank you Sarah, Blake, Stetson, Brooklyn, and Jett! We love this family with all our hearts!!

Utah - Take Two

As soon as we heard about Grandma Thompson's passing we starting making plans to travel back to Utah for the funeral. Thankfully our 14 hour drive to and from Utah at Christmas had gone so smoothly that we didn't even hesitate when it came time to make the drive again just a week and a half later. This time we had two extra passengers, Scott's brother, Vance, and his son, Lincoln. Vance and Lincoln drove down from Minnesota and then jumped in with us for the drive to Utah. That made for a 20 hour drive (not including stops) for them. It was a lot of fun having them along for the drive and getting to know Lincoln a lot better.

When we got to Utah, Scott and the "Original Six" were all together for the first time in 4 years! We wish it were under different circumstances, and not for Grandma Thompson's funeral, but it was really great to get to spend some good quality time with everyone.

It would be impossible to have all of the Murrays together without every night being a game night.

The funeral services were Thursday and Friday and everyone was staying until Sunday so that left Saturday for us to get out and do something together. Scott and I really wanted to go skiing since it hadn't worked out for us to go together over Christmas (other than the failed family ski trip). Somehow we ended up talking all of his siblings, none of which had skied more than a time or two in their youth, to come night skiing with us. It turned out to be so much fun!! A huge thank you to my parents who lent us all their ski gear and then watched our kids plus a few others so that we could sneak away as adults.

I've said it before and I'll say it again...skiing (or snowboarding in my case) with my hubby is quite possibly my all time favorite thing to do. It was a wonderful and very therapeutic night for me.

While we were off gallivanting with Scott's siblings (most of which were spouse and child free for the weekend) my parents decided to take the kiddos on an excursion. They took the front runner train out to the Thanksgiving Point's Museum of Natural Curiosity then to lunch and then back home on the train. The kids absolutely loved it and still talk about it. 

It was a very quick trip and before we knew it we were back in the car heading home. 

A final random picture and story from the trip. On the drive out we stopped at one of those big truck stop gas stations. Miles was going crazy running around touching everything he could get his hands on. In what was probably not my finest parenting moment I told Miles to stop touching things because if he did the blue guy (a blue manikin) was going to come and get him. It worked like a charm...until right as we were leaving Miles reached out and touched something and then yelled, "Hurry quick the blue guy is going to get me." For the rest of the weekend Miles and Lincoln would constantly talk about the blue guy chasing us. So on the way home, when we unintentionally stopped at the same gas station, the kids were thrilled/terrified to see the blue guy. We had to take a picture by him since he had become such a memorable part of the trip.

That's it for our second trip to Utah. Hopefully we can wait at least a couple months before we have to make the drive again.

Remembering Grandma Thompson

Less than a week after we returned home from Utah we received news that Grandma Thompson's health had taken a turn for the worst and she was being put on hospice. Knowing that Grandma Thompson was in her final hours I spent a lot of time wondering if Ellie was part of the welcoming committee that was waiting to greet Grandma and I wondered if her spirit was close by during those final moments when the veil becomes so thin. I would have given anything to be there and experience feeling close to Ellie again. After years of struggling with chronic pain and 4 years of being without Grandpa Thompson, on January 10th Grandma Thompson peacefully passed away surrounded by her children.

We are so grateful for the fresh memories our kids have of spending time with Grandma on Christmas day. I'm grateful for the understanding and testimony my kids have developed of the Plan of Salvation and that death is not the end, but just a brief separation before we will see each other again. They were so happy to think of Grandma Thompson in heaven with Grandpa Thompson and especially with Ellie. 

I was so grateful we were all able to go out for the funeral. Scott's mom and aunts did a wonderful job with the displays at the viewing. I learned so many things about Grandma Thompson that I never knew before. 

At her funeral Scott's aunt shared everyone's favorite memories of Grandma. There was definitely a common theme of Grandma's Treetop apple juice, playing games around the kitchen table, and her making everyone feel special and loved. 

All of the services were a wonderful tribute to an incredible woman who was very loved.

Second only to saying goodbye to Grandma Thompson, the most tender part of the weekend was visiting and saying goodbye to Grandma and Grandpa's house. I have only been in the family for 10 years and it still makes me sad to think we will no longer be sitting in the front room visiting with them or cramming everyone into the basement for the Christmas white elephant exchange anymore. This house is such a big part of all of my memories of Grandma and Grandpa Thompson. After the funeral we met at the house with much of the extended family as we all shared our good memories and each of the grandkids chose a few sentimental pieces they would like to have to remember Grandma and Grandpa Thompson by. Scott and I choose some of Grandpa's old medical and pharmacology books to add to the nearly century old nursing books that had belonged to Grandpa Thompson's mom that were given to me as part of our wedding gift. We were also lucky enough to receive the children's encyclopedias from the 1950s that our kids were so excited about. Below are some pictures of our favorite and most memorable places in Grandma's house. The piles and boxes everywhere were due to the process of sorting through things. Grandma's house was always immaculate.

The low ceilings, especially going down the stairs.

The many many movies Grandma had recorded off TV onto VHS and a classic treetop apple juice container.

The glass kitchen table.

The front room.

Saying goodbye to Grandma Thompson is bittersweet. We will miss her beautiful smile and infectious laugh, but we know that she is happily reunited with her mother and husband and free from all her pain.

Afraid of the Dark

Some of the earliest memories I have as a little girl are of lying in my bed, terrified, as my imagination was being fueled by all of the sounds and shadows of the darkness. My heart would race as I tried to build up the courage to leave the protection of my covers and sprint across the hall to the safety of my parents bed.
As of lately, it appears that Miles has inherited my childhood fear of the dark. He gets nervous being in any kind of darkness whether it is walking outside as the sun goes down, driving in a dark car, or sleeping in his room at night. We tried the obvious solution of putting a nightlight in his room and/or leaving his closet and hall lights on, but then he developed a fear of his shadow (it doesn't have a face afterall). So his only defense is to hide under his blanket and run to our room every night. Because of my experiences as a child I am a complete push over when it comes to my kids crawling in bed with me, and Miles has been taking full advantage of my weakness, but I don't mind at all. Honestly, having his warm little body snuggled up close to me during the sometimes difficult nights can be quite comforting for me as well, so I'll just enjoy the snuggles while they last.