Category: summer
It has been well over a month since my last post and that small, seemingly insignificant act speaks volumes about how life has been for the Mills family. It has been BUSY, unfortunately not with well planned family summer vacations. This summer will probably go down as one of the dullest summers our family has seen in a long while, but the sacrifice being made is for the long term. I am desperately trying to complete three Master’s courses this summer that I need to complete my Reading Endorsement before the new school year. These summer courses have been INTENSE! They are crammed full of content. It’s like squeezing a three month class into a three week period. This is the first time I have ever second guessed my ability to pull it all off. I will not be finished with the Master’s program as the research project will have to wait until next summer. I really think that simply getting back into the routine of “working mom” is more than enough. It is, however, nice to be more than halfway finished with the program.
I just need to say that I have loved going back to school! I have loved my classes and am so excited to put into practice all of the new things I have been learning. I know that I may have many regrets in my life, but I know that this will never be one of them. Westminster has been a great place. The professors are amazing! I have gained so much from every one of them and am so glad that I had the opportunity to work with them and absorb just a small fraction of their teaching expertise. I have one more class to go and will be wrapping it up in about two weeks and then focusing my efforts on getting prepared to teach my kindergarten students.
My own children have had the new experience of going to childcare this month. My last class is in the morning, so we needed a bit of help. We were fortunate that a woman in our neighborhood watches a few children in her home and she was willing to take our kids. The great thing about her is that she plans some fun things for the kids to do while they are there and the street she lives on is full of kids from school and church, so there is an endless supply of playmates. Austin, Julia, and Olivia will be going here on Fridays when I start my new job so I’m excited that it seems to be working out nicely. They actually look forward to going to Miss Coral’s house.
Even though we don’t have any exciting vacations planned this summer, our kids have been very active and we’ve tried to keep them as busy as possible. Austin had the opportunity to attend Scout camp this summer, which he really enjoyed. He got to go up Millcreek Canyon for two days and participate in all kinds of activities. Austin has really enjoyed Boy Scouts. This was his first year and he will definitely be involved with the program again next year. The ladies that keep the program running are simply amazing. Austin is taking gymnastics this summer along with his two sisters and will be starting football next month, which is another first. Austin enjoys hiking, biking, and has been doing a bit of running when we can get over to Skyline High School and hit the track.
Olivia is loving gymnastics this summer and her coach just loves her determination and willingness to work hard. Olivia, along with her siblings, put on a mini carnival in our backyard for all of the playgroup kids and it was a smashing success. The kids had so much fun playing games and winning prizes. Olivia is looking forward to her birthday party at the end of the month.
Julia is also my little gymnast. She works hard and follows directions and listens attentively to her coach. Julia has had great health this summer. She hasn’t gotten a bug in a long while (knocking on wood of course). I did forget to announce Julia’s culture results from her last clinic visit…she is pseudomonas positive, +1. There are different degrees of severity, rare being the lowest and going up to +4 (I believe). So, what does that mean? Well, basically we are on TOBI of course, an inhaled antibiotic that adds an hour to treatment time (28 days on and 28 days off). We are off right now, so we are loving the extra hour of free time! If the culture number gets too high, then it will most likely mean a clean-out…hospital stay…IV antibiotics, etc. I don’t foresee that happening for a while.
For now we just do breathing treatments, morning and night, and we don’t miss treatments. I can’t even remember the last time we missed a treatment. I think in her lifetime, we’ve missed only a handful of treatments. It isn’t easy, but we make it a priority. If we want to do something in the evening, like go to a party or BBQ, then we get her evening treatment in before hand. It’s better to get it done before, because no one wants to try getting a treatment done on a tired, cranky three-year-old and she usually falls asleep on the ride home from late night activities and when that happens…never wake a sleeping baby, or child in this case, so treatment time goes out the window. No matter what’s going on, we get ‘er done. I’d love to hear about how you all pull it off, so please do share.
Anyway, I’ll post a few pictures so you can see some of the “staycation” activities the kids have enjoyed. Most of the pictures are taken with my iphone…I’ve been so terrible about documenting our lives lately. Two things have taken a back seat this summer…the blog and my fitness. Oh well, where things are added, something’s gotta give, right? Gotta love summer!
Neff's Canyon Hike...Austin leading the pack
Swimming at Murray Pool
Julia enjoying a little dip
Kids visiting the State Capitol Building
Neff's Canyon Hike with Dad
Crossing a stream...
Pool party at Mrs. Jones' house...Austin is the one in the center with his arms crossed, resting on his knees. Only a truly dedicated teacher would dare to invite all of her students to her house for a pool party...
Olivia the beam...
We have finally returned from our Yellowstone trip. It was amazing! The kids had a blast! It is definitely a trip that we’ll do again. Even with driving around the park for four days, we still didn’t get to see everything. The park is huge and the sights seem endless. It is truly beautiful and spectacular in Yellowstone.
We took the RV, which was perfect for touring the park during the day and sleeping in at night. The campsites did not have any utility hookups, so in order to pull off the logistics of Julia’s care, the RV was perfect. Some nights I was cutting it pretty close with nebulizer sanitation. Generator use was between the hours of 8 AM and 8 PM, so there were some nights that I may have been running it at 8:05, just trying to get medical equipment steamed for the next day. We pulled it off with Julia not missing a single breathing treatment during the trip.
It was the perfect trip to end our summer break. Austin starts school on Monday and Olivia begins the Monday after that. Wow, Julia will start preschool in September…and I start my master’s program this month as well. Life continues to be busy for us as always.
We took over 400 pictures on our trip. Here are a few…enjoy!
Friday we had a fun summer dinner with people from our church and people in the neighborhood. It was filled with great activities for the kids. The girls enjoyed riding the horses that were brought in by a very generous neighbor. There was a huge water slide that my kids drooled over because I didn’t bring towels or bathing suits, but they did get to throw the ball at the dunking booth and get their friends wet.
Austin waited in line for an hour to do the zip-line, which gave me much anxiety. I was waiting for it to break at any moment and send some poor child plummeting to the ground. Luckily, it held up. It was very high up in the air and very long, extending at least a football field in length, maybe a bit more. Anyway, great fun for a Friday night. We have such a great neighborhood here. I can’t believe that it will be a year next month since we’ve been here. We love it!
Julia and Dad on "the white one." Julia always wanted "the white one."
Olivia and Dad going for a ride
My girls and baby Crew
Austin braves the zip-line
This weekend we took the RV up the mountain to Rockport for a little fishing and some r&r. We left Friday evening and I ran around, frantically trying to get everything packed up. I did have to run by the pharmacy that day to fill some prescriptions for Julia. I picked up the dreaded TOBI, along with three others, and when I walked out the door, tears welled up in my eyes and I quickly pushed them back. I’m sure as time goes by I won’t have this reaction to coming in contact with TOBI, but filling it means Julia and I devote another hour of our day to fighting cystic fibrosis. It makes for very long treatments and very long days. I wore my FUCF tank-top for the occasion, because darn it, sometimes that’s just how I feel. What I would give to come home after a long day and just put my kids right to bed. What a treat that would be…
My new favorite tank-top
Are we done yet? No we still have another 30 minutes of TOBI!
OK, I done complaining now…on to our fantastic weekend. We got up to the lake late Friday evening and the kids tried some fishing and then rode their bikes. They liked riding around on the paved campground roads. On Saturday, the kids fished, swam in the lake, dug in the sand, and rode their bikes. Sunday was a highlight because we rented a boat and took it out on the lake for a couple of hours. It was a blast!
My parents were with us and so was my brother Dustin. Now the tricky part was getting Dustin to board the boat. You see, for those of you who don’t know Dustin, he has Down’s Syndrome and, in his day has watched way too many Jaws movies. So, he is deathly afraid of large bodies of water because he believes that there are sharks swimming around, ready to attack. My parents can tell you a hilarious story of Dustin on a cruise ship during the “drill.” You know, the one when you all have to put on your life jackets and go out on deck to your muster station. Yeah, that’s the one. Well, lets just say that all the people at my parent’s muster station got a good show of my dad pulling Dustin out on to the deck. Dustin is not a kid anymore, well, not physically anyway. He’s almost my age, so good entertainment for all.
Well, Dustin wasn’t about to get on the boat with us at Rockport, but my Dad was trying anyway. This nice man came up and offered to help. Joey told him that Dustin thought there were sharks out in the lake and the man explained to him that there weren’t any sharks and offered to walk with Dustin and help him aboard. Surprisingly, Dustin trusted this man and held his hand and walked out onto the deck and climbed aboard! He held on tight to the side of the boat the entire time and had a death grip on the tie off rope, but he did enjoy himself, especially when Joey opened it up and went really fast. You could see a look of enjoyment come over his face. My dad did try to get him to fish, but he refused, holding tight onto his rope and the side of the boat, not even considering letting go of either to hold a fishing pole.
See, he is enjoying himself...uh oh, is that a shark I see! Notice Dustin's hand...holding tightly onto the side!
We came home Sunday evening, totally exhausted. We got the RV all cleaned up and ready for next time. We are making some good memories with our kids in this RV. So the tradition continues. Next stop…Yellowstone!
Austin attempting to catch a fish...sadly, no luck again this time.
The captin at the helm...
Julia, enjoying her boating experience.
Olivia, as happy as can be!
My kids and my mom
The kids loved playing in the water and digging in the sand.
Austin learning monkey skills
Olivia on the rope
Austin can now make it half way up the rope.
The foam block landing pits are a big hit with all the kids.
Hope you all have a fun 4th!
Sweet sisters and their BBQ attire
Ready for church on the 4th of July
4th of July hike
Such a great lookin' bunch!
Just had to put this one in because she's so sweet.
Me, wishing I was the one in the backpack asleep...
This weekend was a great weekend for our family. We couldn’t have asked for better weather as it was much cooler the past two days, even a bit chilly in the evenings. We started the weekend off right by cleaning the house and getting ready for a Saturday evening BBQ. The girls helped me make a flag cake for the occasion and they really enjoyed mixing cake mix after cake mix and putting the fruit touches on the top. The hardest part was making sure Julia didn’t fall into the cake smashing it in it’s entirety.
We had a very tasty meal. The menu included carne asada, fresh tortillas, corn on the cob, rice, beans, seven layer dip, watermelon, fresh cherries, cake, ice cream, and all the fix-in’s you could imagine for some tasty carne asada burritos. I guess having a Mexican-style meal may seem strange for the 4th of July, but I couldn’t resist. I had finally stumbled upon a grocery store that sold carne asada, and I had to have it! I’ve survived six years in Utah, not knowing where to purchase ready-to-grill carne asada and I found it and had to have it. The food was great and I was very pleased with the meal. I even introduced the whole mayo and Parmesan cheese combination for the corn on the cob and some thought it tasted fantastic. If you haven’t tried it, you’re missing out.
Saturday evening we lit fireworks at a near by high school parking lot. Why there? We found out that you can’t light fireworks east of Wasatch Boulevard. We are just one street east, so we are in a no fireworks zone…bummer! We put the fireworks and the kids into the motor home, parked, got out the lawn chairs and had our little family fireworks show.
We headed home around 10 so we could see what big fireworks shows could be viewed from our balcony. We soon found out that from our front porch, you could see multiple fireworks shows. Our best view was of the Sugar House fireworks show. It was quite a treat to get to see the show without fighting the crowds. We could even see Magna’s fireworks show going on way over on the west side. This was the first 4th in this house and we look forward to many more to come.
Since the celebration of the 4th happened on the 3rd, today was just another Sunday. We went to church and then did a short hike with the kids and dog. The kids spotted some butterflies and a lizard and enjoyed picking wild flowers. It was a great way to end the weekend.
I guess I feel the need to reflect a bit today. I feel very grateful to live is such a wonderful country with many opportunities and freedoms. As a woman, I take for granted the ability to wear a pretty little dress to church and show off my Body Pump calves. We don’t think that wearing a tank top is such a privilege, but we don’t live in a country where the only part of a woman that can be exposed is her eyes. The fact that my daughters can go to school and get an education, a higher education, and beyond is a true privilege, a blessing.
We have so much living here in America. I recently finished reading The Power of Two. It is a story about twins who were born with cystic fibrosis and both eventually survived double lung transplants. Joey and I got to hear them speak at the hospital a couple of months ago. These women are half Japanese and they have traveled to Japan many times. What I found simply astonishing is that in Japan, people with cystic fibrosis are lucky to make it past childhood. Japan does not approve many of the medicines that Julia has the privilege of using. My knowledge of the world is so very limited. I do know that we are all so blessed to live here, in this country. We have so much and take so many things for granted.
To switch gears for a minute…it has been quite the roller coaster in the CF community these past two weeks. One beautiful, 28-year-old cyster got her new lungs! So very exciting for Piper. How blessed she is and how excited I am for her to have this new chance at life. The hardest news for me was that of Conner Jones. He is spreading his angel wings and has flown home. The reason this was such difficult news for me is because Conner was Austin’s age and because Conner had cystic fibrosis like Julia. Too close to home for me. I so appreciate his mother Sarah for sharing her story with the CF community and with the world. She has put into words the very intimate details of Conner’s last days, right down to his last meal. I got to see into the world of a very courageous CF parent. Sarah has set such an example for me.
I guess since our family lives with CF everyday there are many unanswered questions that I’ve had. These past two weeks, through Sarah’s blog, I’ve had my questions answered. She painted a very vivid picture of what it was like to be a parent of a child with CF who doesn’t make it past childhood. I think I’m not the only CF parent who wonders if his or her child will ever make it past childhood…wonders what it would be like if the end came sooner than we’d like. The fact is that 50% of people living with CF should expect to live to age 37, but what about the other 50%. The fact is they won’t. I wonder every day what 50% my Julia will be in. I don’t think I’m alone with these thoughts as I’m guessing probably every CF parent wonders the same.
Live every day like it’s your last. Savor the time you have with your families and your children. Our time here is very short, CF or not. Live, love, breathe…