July. Whew. This was a doozy of epic proportions…
We had been watching Asher’s lung function pretty closely for the last year, and unfortunately it was continually dropping. His doctor thought it was time for him to have what’s called a “cf tune-up” and have some scans and a bronchoscopy done to see if there was a bigger problem that we couldn’t see on cultures. He was admitted for 6 days. He had a picc line put in so he could receive continuous iv antibiotics, and had four treatments a day, on top of the testing. Then we were released to go home for another week of iv antibiotics. Asher endured much both physically and emotionally. He was so very brave, and strong…more than any parent would want to ask their child to be. And, more than any child would choose to be. Listening to scary things and big words that his parents and doctors were talking about over him, and having no control over what procedure or test you were going to need to endure…it took a toll on him, and we painfully watched as our son was truly broken.
Saying good-bye to brother and Daddy!
Such a sweet surprise to show up to his room and see a bag full of goodies from Tanner’s Totes. We played with everything in this bag, as Asher was on lock down in his room for 6 days. That’s a lot for a little 9 year old active boy!
Chess was the game of choice during this stay. Every doctor and RT who came in were petitioned to play a game :).
Traveling back from his CT Scan, he negotiated with his nurse to push me down a hall. He’s hard to say no to :). Love him.
Asher and I logged a lot of hours in his bed together watching movies, putting lego sets together, playing chess and other games…these were the moments that kept us both going. There were glimpses of joy.
And speaking of a glimpse of joy. Asher was thrilled to be able to participate in the hospital trivia they had for an hour one day. He called in several times, and later the winners cart came by our room with prizes for him to claim for being such a smart cookie :).
Major thanks to Grandma and Grandpa Olimb, and Grandma Joy Joy for entertaining and taking care of Beck so that Daddy could share his time with work and being with us at the hospital! You all are a constant blessing to us!!!
Really cool story. Our church had a team of people at a Bible camp in Alaska, and they all took the time to encourage Asher with this video. It was such a sweet moment to show Asher that he even has friends around the world thinking about him and praying for him.
Going home! Asher was blessed by so many sweet friends who sent and brought new toys for him to play with while we watched the days slowly tick on. He arrived home with more packages from friends too. He felt so loved and cared for.
Oh how we missed you Punkie Bear.
Being home was so wonderful. Mostly because we were reunited with Daddy and Beck! But the hard things still continued for Asher with the picc line and continuous iv antibiotics. He was so very thankful when Dr. Mia gave the thumbs up to remove the picc line! Literal JOY!!!!
We will never stop fighting for a cure for our boys.
We were so thrilled to have Grandma Necas come and visit us! She wanted to come and see Asher after his hospital stay, and be here for Beck’s first day of Kindergarten! We were so happy to have time with her! We did a lot of fun things around town together, and mom and I knocked out all the school shopping! It was perfect!
The night before the first day of school we usually have a family dinner and interview the boys. I love capturing their age and how their little minds process questions based on their thoughts and interests. I love that we’ll have these memories all through their school years. It’s so sweet to start including Beck in the interviews now :).
First day of 4th Grade! We were so excited for you to start a new year, Asher! You had a bit of a challenging/unconventional 3rd grade year, so we were so happy for you to have a new beginning! So happy for you to have conquered the hospital and have that behind you, and a fresh season of school and friends and fun memories ahead! Boom. And, the greatest blessing…you scored the best 4th grade teacher!! Excited for your year!!
I just have to make mention that this was the first year you didn’t choose a character backpack. You went straight up Nike. Sniff, sniff…you’re getting so big! We love you so much, Buddy!
Beck. Sigh…oh how I didn’t want to send you to school…I just want you to forever know that. Your dad made me, lol! You’re so cuddly and squishy and we tell each other how much we love each other all day long. Who wants to have less of this?! Not me. You were less than thrilled when it was time to say good-bye. You squeezed me and whispered in my ear, “don’t leave me.” I’ll. Never. Forget. This. You’re totally scrumptious, Beck.
This is how much you didn’t want to go. You held up the line. Grandma and I walked away with tears in our eyes…
You were really excited about the idea of school…before we actually got to school. So thankful to have these cute pics before the sad sad faces hit :).
BUT! Holy cow, Beck! You LOVE school SO much! You scored an amazing teacher, and you came home simply thrilled about school. You love it so much that you’re a little disappointed now when the weekends come around, ha!
Your first homework assignment was to bring in three things that tell the class about yourself. You brought in a picture of you and brother, a packet of chocolate milk, and minecraft toys, ha! This pretty much perfectly describes you :). We love you so much, Buddy!
Daddy makes everything more fun! And, that’s a perfect note to end the month on :).
And then Daddy came, and all was right with our world :).
Jeremy and I got to take a day trip back to the little town we grew up in, and where our story began. [insert a lot of hearts]
This was the first time Daddy got to go to the Turtle Races with us!
The look of determination paid off this year! Asher won the first round! We were so thankful he won a race this year! It did mean, however, that we needed to stick around until the over 200 turtle racers raced for the championship, but it was still worth it. He was so thrilled :).
While we were there, my parents and their sweet friends coordinated a walk in honor of the boys, their fight, and our desperation for a cure for them. We all gathered together and walked 1-3 miles, then Joe and Lisa opened up their restaurant and fed everyone pizza. We were so blessed by the outpouring of love from the community. So many people we hadn’t met before, and yet they took the time to come and be with us and support us through this journey. Jeremy and I couldn’t stop talking about how incredible it really was. We were so thankful!
Looking back through all our pictures, I’m realizing what a big year it was for Beck at the lake. A lot of firsts happened for him. He also learned how to ride his bike with no training wheels!
Of course, it was not without a few tears…but that just made things even cuter :).
Can you hear the trepidation in my voice here?! So fast.
Above water fun!
Except for this. This was definitely under water :).
And now a world class photo dump :).
So grateful for a wonderful Summer at the Lake! Already looking forward to next year :).
Being able to take the boys back to the lake for a month is a blessing that we do not take for granted. We are so thankful the boys get to have all of these memories, and they look forward to livin’ the lake life every Summer!
This year the boys and I flew by ourselves, and then Daddy joined us a few weeks later.
Of course our first stop is Taco Johns! It’s really a blessing to not live by this restaurant. It’s too yummy :).
The lake greeted us with this sight.
Fishing is by far one of the greatest activities the boys love doing while we’re there. For Asher, the love for the sport has only grown. He nerds out about fish. He watches fishing shows, he reads about fish studying the different types and where they live and what kinds of bait they like to eat…we knew this was how he was going to spend most of his days. It was neat to see Beck really getting into the sport this year as well. Last year he threw his fishing pole into the lake because he caught a fish and was scared. This year he caught several fish on his new BB8 pole, and was so excited to be in the game :).
Asher caught some really great fish right off the dock! He didn’t catch a northern though. We tried to explain to him why they’re not that great, but he really wants to see all their teeth up close, ha! Maybe next year, Buddy.
Ohhhhhh THANK YOU Mr. Bob!!!! Asher was able to really get a taste of the fruits of his labor this year! Mr. Bob taught Asher how to filet his catches, and he even allowed Asher to keep fishing while he took care of the filleting for him. It was so sweet! What’s even sweeter is that Mr. Bob was our neighbor when I was growing up, so we have a long history together. I love that the boys have gotten to know him as well, because him and his wife are treasures.
Asher fished with the reel that my mom’s dad gave to her as a gift :).
Beck took the paddle boat out to do some evening fishing.
This before and after is hilarious! One sharp buck from this fish, and he plopped right back into the lake!
“He didn’t bite the guy away!” Hahaha!
Mom and I love to garage sale, so she would give the boys money for our shopping times together, and they could pick out whatever they wanted. For some reason, Beck’s heart was set on this tiny Georgia spoon, ha!
This was crazy! This little, beautiful Finch bird let the boys pet him! He sat still for a few minutes, walked around the deck, and then just flew off like it was no big deal that he just stopped in for a visit. In all the years, we’ve never experienced this before. It was a sweet moment!
The go kart. Gosh the boys love buzzing around in this thing. Beck kept proclaiming before we got to the lake, “I think this is my year to drive the go kart by myself.” This was in fact his year. He nailed it :).
He clearly did not have the time for an interview, ha!
The golf cart. More things that go fast, ha!
And the fastest of them all. The Vette :).
We missed being with Daddy on Father’s Day, but the boys made this adorable video for him that I wanted to include so we forever have this sweetness.
Swimming. The clothes line was always stocked with wet clothes, because the boys would jump in and out whenever their little hearts desired. Being in the water is definitely their most favorite thing to do while we’re there. Playing on the paddle boat, skipping rocks, riding waves with life jackets, looking for clams, trying to net fish, just soaking it all in with each other.
The boys also decided to make their own youtube channel that teaches kids how to play some of their favorite games. This was a whole day of filming and editing, but it turned out so cute. What a keepsake.
Grandma Joy Joy gave the boys some spending money before they left to buy some fun new toys to have on their break. They were pretty excited about their new finds :).
This grassy field that we walk by everyday looked so pretty with the wind.
Poppin’ and lockin’.
We took the boys to the Parade at the nearby town. It was pouring rain right before everything started, and then completely let up as the parade began.
I think my favorite memory from this whole night was when this band stopped right in front of us and gave us a personal show for a minute. As they turned and marched away, Asher said under his breath, “that’s a lot of white socks.” Hahaha! I had to take a picture. He’s right, ha! They also played really well, but I guess the sea of white socks overshadowed the performance for him :).
Well, I’m quite behind on this memory keeper…but after spending an hour with the boys looking through old pictures and videos and laughing and crying, I’ve realized how worth it this is. They love it, and Jeremy and I love looking back through and reminiscing about our lives together <3.
Case in point. This sweetness is too much to handle.
We love May around here. Mornings and evenings have coolness to them, and the day times have some warmth.
You know you’re a special needs mom, when your kids receive their new vest machines on Mother’s Day, and it’s the best gift ever. After 6 months of phone calls, and forms, and praying for God to pave a way for your kids to get the latest machines, and He brings that all together on a Sunday…Mother’s Day…He’s so good to us.
We wrapped up a season of flag football. It was really fun to cheer for Asher. He did great for his first year of playing!
Asher wrapped up 3rd grade! For his last cottage fair he created his own island and Declaration of Independence, and they put on an Ukulele concert for us. It was adorable, and one of our favorite Cottage Fairs!
Asher was one of the students selected to stand up front for their year end celebration song :).
We loved having no school schedule, and enjoyed some fun times exploring our city having fun with friends and family, making our own schedules, and just hanging out at home without the concern of needing to be somewhere! We could operate on this speed all. the. time :).
Oh the wrestling. 70% chance it will end in someone getting hurt. But it’s always 100% worth it to them, ha!
Beck. Your Momma shed a lot of tears about the idea of you starting Kindergarten. It was really hard saying “yes” to spending less time with you. It has been such a joy having these last five years with you all day. Here you are, in all your cuteness. I asked you if you could take another bite of your pizza before you started in on your ice cream. He said, “let me check” and lifted up your shirt to see if your belly could fit anymore pizza in there :). We all love you so much!
Yes. This is permanent marker, ha!
One of your favorite things to do is go to Barnes&Noble and ride the escalators over…and over…and over…and over…
You’re also such a great, little swimmer! We’re so thankful for Grandma and Grandpa Necas paying for lessons for you so that you can keep enjoying this sport that you love! This was your last class with Mr. John before our Summer break started. I’m certain he will always be your favorite teacher :).
Here you are practicing for Kindergarten. I reluctantly prepared you :).
I have a lot of videos spying like this. He cranks up the music, and makes chores fun :).
This is the beginning of the season of reading while fidgeting :).
The boys are truly so blessed to have a Daddy who loves to wisk them away to the mountains so they can explore and get dirty…all things that makes our boys hearts warm :).
We celebrated 17 years of marriage this month :).
We love them. So. So. So. Much!
We were so blessed to get to take a trip to Rocky Point with Grandma and Grandpa and Auntie Dana! We made so many fun memories together! We love how different of a beach experience it is compared to our trips to California. The tide moves about a hundred yards in and out each day, which makes for a vast beach area to run around on and investigate little shells and sea creatures. We spent the mornings and evenings walking along the huge beach adventuring around and enjoying the landscape. It was pretty spectacular!
The boys enjoyed this pool for awhile, but then they discovered the really warm indoor pool, and it was all over. It was all about the “Pikachu Pool” and that’s pretty much where they wanted to be 24-7 :).
Asher saw they were having “futbol” lessons on the beach, and a ping pong tournament at the resort. He was stoked! The ping pong was sort of a bust though. It’s nearly impossible to play when you have an ocean breeze tossing the lightweight ball around, ha!
I have to make mention of this beautiful experience that was very much enjoyed by Jeremy, Dana and me. This golf course was the best of the best, right alongside the ocean! I don’t think any of us will forget the time we had together :).
Enjoying dinner on a cliff with a beautiful view!
Grandpa and Daddy went for a kayaking cruise along the beach!
The boys still love playing “Gold Fish”
Our last sunset on the beach! Asher and Beck were really enjoying being part of the photography team :).
So thankful for these memories together!
Jeremy and Asher got to go with Brett and Jonas to a suite to watch the Dbacks play! Such a fun memory!
Pure joy getting his cast off!
Bike ride to pizza and a redbox!
Cultures and blood work for Asher to make sure Orkambi isn’t causing harm to his liver. Thankful they have each other!
Reviewing Pokemon while we wait for swim lessons :).
Easter 2017! Such a wonderful time with our church family, Grandma Joy Joy and Grandma and Grandpa Olimb, and our Hoverson cousins for our annual Easter Egg Hunt! Daddy also created a scavenger hunt for the boys to find their Easter baskets at home. I gave them my phone and told them they have to take pictures of themselves with the Easter Bunny Decoder Glasses when they found each clue. It was hilarious to look through their pictures :).
Jeremy and I took Asher on his first backpacking trip to Jeremy’s favorite location. It was pretty beautiful camping alongside this creek, and seeing the mountains covered in little yellow flowers! We had some sweet times with Asher that we’ll always cherish. Doing a Bible study around the fire, cuddling up in our little tent watching a movie at night, taking an adventure hike down the creek, making a boat out of sticks and seeing how far it could float down the stream, watching Asher plunge into the creeks from the little cliffs, enjoying lunch while sitting in the creek…it was such a memorable time together!
Trying to spear a fish :).
These two went running to each other for an “I missed you” embrace :).
We made it back in time for Asher’s football game, and Beck was the photographer for the day :). He did a great job!
Beck’s last Soccer game! We think he had a really good time…some weeks more so than others. We weren’t sure how he was feeling about it, because he really did enjoy playing…it was just in small bursts, ha! He loved having a cheering squad, and having something that was all his own…and it was really obvious that he mostly loved half-time and the snacks, ha! He keeps asking to play again though, so who knows, ha! Regardless, it was so fun watching him run around trying his best :).
Our CFF Walk! Thanks to our super generous team, we raised $10,675 this year for teamASHER+BECK!! We are just so thrilled and thankful to be able to send all that research and help to the Cystic Fibrosis Foundation! It’s beyond humbling to have people sacrificially donate to The Foundation when it directly impacts the future of our boys. We are so thankful!!
We went to a pretty park before school one morning, so I could get a few pictures of the boys. They’ll never be this little again…sigh…
The boys’ doctor gave them these cool hats from the Mauli Ola Foundation. They’re so cute!
Most of our days are not spent doing anything super extraordinary. Hanging out at home. Going to the library. Riding bikes to our pizza place. Going to our park. Going to church. School. Sports. But, there’s something so beautiful about ordinary. We are blessed to be the boys parents. They are extraordinary.
March continued on with more cheering for our Soccer and Football stars!
Beck! You turned 5 this month! Wow. Last night as a four year old!
We really tried hard to celebrate your big day…but we failed miserably this year, sweet boy. We’re going to have to step up our game next year, because you deserve double the celebration! You kicked off your birthday week by fracturing your elbow. We brought you to urgent care because we thought you had just dislocated it, and that the pain and swelling would go down in a few days. So, we decided to continue on with our plan to go camping, with you in a sling, because your heart was set on it…
Except that when we got to our camping spot, there was still snow and mud…lots of mud!
So we pulled an audible and decided to drive to a campground an hour away that Daddy had just heard about from his friend. Except that we ended up on a gravel road in the middle of nowhere…and our tire blew out…and the little donut blew out…and we were stranded. So we prayed. God brought this sweet lady who took me to their little town, and found a sweet man who just so happened to have an extra tire that fit our van. Thank you, God. After all the drama we decided to drive back down the mountain to our home. An entire day of traveling and no camping. Then, the next day you were screaming in pain and we had to go back to the doctor because you had a raging ear infection. Seriously. If ever there was an award given out for worst birthday, you would win. So sorry, Buddy! We’re already thinking about next year :). I got all nostalgic about you turning 5, and ended up looking through old pictures. I can’t take it! We are so lucky to have you!!!
You did get to have some fun time with friends. And, this is a gold moment right here. We told all of you to make silly faces. When you only have one arm, you have to improvise. I’d say you made things happen :).
Dinner with Grandma and Grandpa, and Beauty and the Beast! We really tried :).
Probably the sweetest story that came from you wearing a cast, was that our neighbor Mel was the first to sign it. Some day we’ll tell you about Mel, and why we feel so grateful to get to be his neighbors. He’s a gift.
Hope Kids allows so many fun family memories. Tonight they opened up the Microsoft store and let you two play whatever blew your hair back :).
Asher. Gosh we love you. We love how you joyfully accept a challenge…like, try to lip sync to this song…go :).
And, in going through old pictures I stumbled across this gem! Nigh nigh bear still brings you comfort. Complete sweetness. I wish I could jump through this picture and cuddle you!
Arizona and us.
Well, Soccer finally started for Beck! Oh the talk that had been going around for months about when soccer starts…it was adorable. The first time we put Beck’s soccer gear on, he lit up! He’s been cheering Asher on for years now, and this was his time :).
His first game! He’s #2! He made a goal! He was so proud to be out on that field! This video is not of his first goal…but it’s equally awesome. The other little boy kicked it into the wrong goal, and Beck took it upon himself to straighten him out, ha! It was great fun watching him running around on the field :).
The goodbyes’ are usually a little long. Beck literally doesn’t want to let Asher go to school.
We are blessed with Hope Kids! They allow our family to have special experiences we would not be able to afford. We got to go to Odd Squad Live in Phoenix. The boys love the tv show, Odd Squad, so they were over the moon when we said we were going to see them…except that I guess we were not going to see them. We didn’t even seen something close to the tv show. It was hands down the worst show we’ve ever seen, ha! But, that wasn’t the fault of Hope Kids, they’re still awesome :). The best part was Beck kept talking about how excited he was that we were in “downtown city!”
Asher did such a great job on his science experiment and presentation! I couldn’t be there for the real deal, so he gave me my own personal thesis recap :).
President’s day = no school. Yea! I love these times with the boys with no school schedule. I wish I could homeschool…without the school part, ha! I love enjoying new experiences with the boys!
Sometimes the heaviness of how different our family is, and the fight we have that is so different than most families really hits hard. In February, Jeremy spoke at the Cystic Fibrosis Foundation’s Festivale, sharing his heart and pleading with people to buy science for our boys. We also traveled to D.C. to March on the Hill with the Cystic Fibrosis Foundation. Really scary proposals were being made by President Trump that would have greatly impacted our current medical care and coverage for the boys, and most certainly would have changed what their futures would have looked like. We had to go and be a voice for our boys and our community. Thankfully, it seems as though we should be in the clear of these conversations boiling up again…please Lord.
Oh you have our hearts, Flagstaff!!! This is one of our favorites trips we take every year! What a blessing that for the second year in a row God gave us fresh snow to play in! We had three storms roll through town on our stay. It was magical and so so beautiful! Our snowy-time cups were filled up, and we were ready to come home to no shoveling and a lot less gear to wear :). It was perfect!!!
There was essentially no snow on the ground when we arrived. That quickly changed. It was a sweet treat for the boys to see the land transform.
This year was extra fun, because they boys are old enough that we can let them adventure by themselves a little bit. It was sweet watching Asher from the window taking care of his little brother, and the two of them having a ball playing in the snow together! You know they had fun when there was zero complaining about walking up huge hills in the deep snow!
Nothing better than ending some serious playtime with some relaxation by the fire :).
Lots of games, movies, puzzles, ping pong, Asher reading “The Tale of Despereaux” to us and getting us all hooked on the story, being together as a family, and just all around relaxing times. Can’t wait for next year!
Then God ended our time together with a beautiful sunset to enjoy on the ride home. Love all the adventure and fun we get to experience in AZ!
Kicked off the New Year with some fireworks!
I love this memory of you Asher. You were inspired to find a way to make some money, and you threw together a plan in a matter of 15 minutes. You made a sign that said, “Car Wash $3 Top to Bottom 20 Min” and you enlisted your brother to promote your business. You had a sweet customer in no time, and she generously gave you $15. You were so cute about working hard and wanting to honor the 20 minute claim on your sign. We were so proud of your creativity and hard working mentality! And, might I add that you have the best little brother!!!
That moment when you’re folding clothes and watching your kids play…and your heart bursts with thanksgiving.
Asher. January was a big month for you. You continue to work hard in school. We rarely have to help you stay on task and finish your homework. This month, your teacher shared a story with me about how much she loves you and how great of an example you are to the other kids in the classroom. She said she can, “always count on you to help.” We could not be more proud.
You also started texting us this month with the Kindle you got from Christmas. This might be my favorite stage, getting sweet little notes from you. Case in point. You sent this text to dad with this picture, “Friends Forever”.
And, this text from you cracked me up! I love your sense of humor!
January was also a huge month for you and our family in regards to cystic fibrosis. Daddy and I, and your whole crew of family and friends had prayed for an opportunity like this since we first found out you had cystic fibrosis. You started the new drug developed by Vertex, thanks to the funding by the Cystic Fibrosis Foundation and everyone who donates to the Foundation. We’ll need to keep close eye on you to make sure Orkambi is benefiting your body and not harming it. We are so thankful for the progress that has been made with drugs that are targeting your cells. We had to celebrate this day with the family, because this was a monumental moment in your life! We are hopeful, and filled with thanksgiving!
We also chopped off your locks in January. You’re super cute with whatever style you want to rock!
Beck. You are a total treat. You are getting so big, and yet there is still so much snuggly little Punkers in you that tugs at our hearts constantly. You are still teaching us all about the things you like and dislike every day, and I’m pretty sure you’re still trying to figure these out as much as we are :). We’re blessed to take care of you!! Here you are. You got ready for church all by yourself!
I know you’re not going to sit like this forever, so I had to capture the sweetness :).
Grandma Olimb and I took you to the Pro-Am Golf Tournament, and we enjoyed a beautiful day doing something fun together :).
Paxon. You are always a part of our family and our everyday lives. There is not a day that goes by that I don’t think of you. Our home and our hearts are covered with memories of your life with us here. On our way to visit your gravesite this year, God placed a rainbow in the sky for us to admire. He was so kind to give us a visual reminder that He is always with us. It was perfect timing.
Just enjoying our backyard…