I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Tuesday, March 31, 2015

"Cover Them Up" He Said?

This has been a very surprising and intense month. We never expected that our little idea for a bake sale fundraiser would turn into what it has. One of the things that really shook things up was when Vistalight Productions volunteered to make a video about our family to raise awareness about the fundraiser and why we were doing it.
 
Frank and I were both nervous. Him because he would rather be able to be completely off the grid in all aspects of his life (you know live at a high altitude making furniture from the cast off branches of mother nature never seeing anyone or anyone seeing him type thing), and me because I am easily flustered and stutter and don't feel like I can express how I feel when I speak as well as when I can write it down.
 
We know the company though and trusted them and were extremely grateful for the opportunity it was and their generosity. I did exactly what I thought I would do, rambled on, told side stories, etc. Somehow, someway they worked their magic and made a fantastic video. It was never my plan to mention not having a place to plug in the new equipment that Ruby would need. I had thought about it, but figured we would cross that bridge later on. But my comment about it made the edit. It was another way that Heavenly Father would bless our children and our lives.
 
Each CPT vest needs its own designated plug or it voids the warranty for the $15,000 machine, they use a lot of power. Every morning even now we have cords stretched all over creation to make treatments work.  Also needing an outlet are 2 (soon to be 3) SVN machines to be used simultaneously with the vest.
 
A man who doesn't know our family donated the work of an electrician to come into our home and add all the necessary wires, conduit, outlets, breakers, and other electrical words I don't know so that we can all be together during treatments. This effects our family now in providing ease and accessibility to the machines that we use everyday. It will also effect the future of the kids. We have attended a CF Family Education day at PCH when a nationally renowned CF doctor gave an hour long talk on studies that have been done on CF patients and how when they have parents who will sit near them, be in visual sight, make their presence known during the patients treatments that in turn these CF patients will see the value of doing their treatments and have a much higher chance of doing them regularly on their own as they leave the home as an adult. No one will have to go into a separate room to do their treatment, we will continue to be together. These new electrical outlets are HUGE for us!
 
The very nice electrician who came over to do it was talking with me about where would be best for the new outlets. In the room we have the plugs are your standard low to the ground outlets which is tricky because furniture blocks most of those and needs to be moved when we do use them. I asked if we could put the new ones up a bit higher above couch level. He said we could, and then suggested that I could find a way to cover them up if I wanted so they wouldn't stick out.
 
We have them now! He came yesterday and worked hard to get them beautifully installed. We are totally ready for Ruby's vest and can easily access the outlets. Cover them up? Absolutely not! They are a totally wonderful unexpected blessing and we are incredibly pumped to have them!
 
Again, this is something we could never have done on our own and could never have imagined that Heavenly Father would prompt a complete stranger to help our family in this way. Thank you, thank you, thank you!
 


Sunday, March 29, 2015

“Peace Be Still” When I Needed It : The Male Nurse

 
One of our family’s favorite hymns is “Master The Tempest is Raging.” I am not a singer AT ALL, but this one is just fun to sing. It takes you from the terror and misery of being in a storm in the middle of the ocean to the instant calm and sweet “peace be still,” that the Savior brings.
Singing this hymn is a beautiful way to remember the end result of a common pattern in life, at least my own life. An unexpected (or even anticipated) trial comes and I totally freak out, then hopefully (sooner than later) I can remember to ask the Savior and Father in Heaven for help and somehow I get the “peace be still” that I need to shoulder the trial until again I break, freak out again, and the cycle starts over.  
It is impossible to tell how Heavenly Father will provide our “peace be still,” but I have seen in my life that when I sincerely ask for help from Father in Heaven I will get it, somehow, and usually in a way I could never have guessed.
My 7 month old baby was in the hospital and I was 100% certain that it was my fault. For a week I had desperately tried to get him to eat but he wasn’t interested. I even stopped nursing and started pumping so that I could measure exactly how much he was eating but to no avail. It quickly snowballed and in the time of 16 hours we had seen our PCP, our CF team, triaged at the ER, and now were being wheeled into our own room of the PICU at 9pm.
Frank had gone home to take care of the other kids and the unintentional hurtful question had just been asked to me by the girl running the babies IV, “how could you let this happen,” and there I was there sitting in a little row boat alone in the middle of the ocean with the “tempest raging” around me of guilt and despair.
I sat there thinking about how I couldn’t get my baby to eat and look at what I did, ended him up in this hospital bed, away from his soft crib and family to get stuck with needles and pumped with medicine. Orson was being still and the IV was in so I just sat there with the things I had thrown together in the hour before we left for the ER and stared into space. I was hungry, I hadn’t eaten dinner, I was worried about the next time I was going to pump because I knew that the nurse would be coming in and out frequently - and for the first time in my stay in any hospital it was a male nurse - and I am admittedly a prude.
Soon the male nurse, whose name I really wish I could remember, came into the room. He attended to the machines and the baby then looked over at me. He asked if I had eaten anything then offered to get me a sack lunch from the cafeteria because it was closed and I wouldn’t be able to get anything myself. Then the next thing he did was notice that I had brought my pump. He said, “I see that you brought your pump. I will bring in plenty of sanitized bottles and some labels for you and I can get them put in the freezer for you anytime you say. I will keep the curtain closed to my nurse station and leave you guys alone for the evening as much as possible.”
I didn’t even say a word about being hungry and stressing out about when I could pump next, but that incredibly kind male nurse somehow knew what I needed and didn’t hesitate to provide what he could. For the moment while I ate my sack lunch (most appreciated sack lunch I have ever eaten) and before the guilt and blame storm cycle would start again he had been how I was given my “peace be still.” My Savior knew how I was feeling and Heavenly Father heard our family prayer before we left for the hospital, and the plea for help we asked of Him on behalf of everyone in the family. It was very clear to me that I was being watched over and walked through my personal little storm that night.  


Mesa family expecting 3rd cystic fibrosis child - East Valley Tribune: East Valley Local News

Mesa family expecting 3rd cystic fibrosis child - East Valley Tribune: East Valley Local News

'Tony was such a nice reporter!'

Saturday, March 28, 2015

Charlie-Bots are Ready!

 
Charlie's "take-apart-box" came into full time use during the assembly of these robots. His favorite hobby is taking apart unwanted electronics (or really anything with visible screws to unscrew). He has gotten to take apart an automatic stapler, lots of flashlights, an old printer, cell phones, computers, and lots of other random items. His favorite thing to take apart was on old VCR.
 
When I see the old "mother board's" on some of the stuff he has spread out during his un-assembly sessions I flash back to when I was growing up watching my Dad take up apart his computers. He also loved to see how they worked and could mostly fix and put them back together himself. Dad would spend hours on the phone with his friends who knew he had computer knowledge trying to fix their computers over the phone and then end up over at their house doing it in person. So G-pa JLB passed on his tinkering to Charles I suppose.
 
Charlie-Bot's will be available at the April 11, 2015 CF Is Not Forever fundraiser.
5pm Cardon Park 2540 E. Fairview, Mesa, Az 85204
 
 

Thursday, March 26, 2015

The Canine Mother We Never Knew We Always Wanted

Chloe is our dog. We bought her the year before we had our first baby. Frank and I had been looking for a puppy and saw an add in the paper for a new litter of cocker spaniels. We went to see the pups one Friday after work together. Frank picked her out. He knew she was the best one because she kept climbing to the top of the pile of puppy brothers and sisters and then rolling down. I thought I wanted the little black one but Frank was sure that the climber was our girl. He was right. She quickly became a big part of our family. It was fun to take care of her together. I would come home on my lunch break and check on her. Frank would get home before me from work and school and spend an hour tossing Chloe's favorite toy, a rubber chicken, down the hall for her. My favorite pair of boots (my Emery Cemetery boots) have little Chloe chew marks on the toe. 
 
Then I got pregnant. Before I was even showing Chloe started guarding my stomach. She would sit on my lap and lay across me. Then when I was showing ANYTIME I SAT DOWN she would sit with her dog hind on my baby bump and her paws in front. While pregnant I would wake up at night to find her curled up around my belly. When the baby came she would sleep and lay as close to the baby as she could get. Never bothering the baby, or even nosing or pawing it, just being close. Protecting, watching, making her canine presence known. 
 
During our second visit with our CF team the pulmonologist at the time spent a lot of the appointment answering questions we had about how to live the best CF lifestyle in regards to our home. He was covering many topics, one he touched on was pets. He recommended none, due to potential allergies and other concerns. "What about a dog?" we asked him, "because we already have one of those." 
 
"Well," he said, "how has your baby done with it so far?"
 
"Do you feel like she has had any allergic reactions to it? If so, I would recommend getting rid of it. If not then I would say to keep your eye on it as she gets older and see how she does with the dog being around her."
 
8 years and 3 kids later Chloe the dog is still a member of our family. There have been days that I have been furious at her for waking the kids up from naps or stealing a snack from one of their hands, but all in all she is an amazing support. She has taken naps with all the babies. Eaten any extra carrots, watermelon, or corn we have laying around. Guards our front door with a furious vengeance, ESPECIALLY when someone is outside mowing the lawn. She is always there to give and receive love from anyone in the house and has been there since the start of our family with kids. We are very lucky to have picked the puppy climber cocker spaniel and she has been the canine mother we never knew we always wanted in our home.  
     
 






 




 


Wednesday, March 25, 2015

Twinkle Twinkle Little Vest



One of the first things we learned when Maelee was diagnosed was the importance of CPT (chest percussion therapy). Our PCH team taught us how to do manual "clapping" in 8 different places on Maelee's lungs that were target zones for getting the thick CF mucus unstuck. They also taught us that you need to be careful when you do it an to get your hands placed in just the right position so as to prevent hurting the baby's other vital organs - since essentially you are hitting your kid in 8 different places in an attempt to loosen the mucus.

It is another layer of the baby routine that you need to add in at infancy and get it in hopefully twice for a day for 10-20 minutes - along with the regular feedings, changings, naps, etc that come with a every baby. 

So babies love to be turned in all kinds of strange positions and have their parents "clap" them with their hand over and over again right? No of course it wasn't fun for either of us. But we also learned that when she got big enough we could get a CPT vest for her that would do the percussion. Then when she gets even older there are other devices that she can use when she is able to be coordinated enough since they require a special way of breath intake.

She was 3 when we were able to get her vest. At that time in 2010 we were told that the price of the vest was approximately $15,800. Our portion after insurance (thank heavens for insurance) was about $5,000. We were able to get the vest from an excellent company based out of Minnesota. We had been anticipating getting one for a long time so it was a huge deal.   

As I started talking with the representatives at the company I was thrilled to hear the sound of their Minnesota accent. My little brother was serving a mission in Minnesota at the time for our church and we hadn't seen him in a long time. Every time I talked to the vest people, as things got arranged for payment and delivery, on the phone I thought of him and the people he was serving and living around in Minnesota that sounded like the people working at the vest company.

A representative from the vest company came to our house when the long anticipated package arrived so that she could show us how to set it up and use it. We tried to really fire Maelee up about it because we wanted it to be a successful process for her.

The woman from the company came over and won Maelee over with an adorable teddy bear that could sit with her while she did her vest. She was such a lovely woman and happened to have a young boy of her own with CF who used the same vest.

Maelee's first order of business was to see how awesome her voice sounded while the vest was on. It has the same effect of talking into a portable floor fan, that seems to chop the sound of your voice into pieces. The vest lady adjusted Maelee's straps, got the vest all set up, and then turned it on. Frank and I were on the edge of our parenting seats to see how she would react. We hoped she didn't cry or say that it hurt. We knew this would be a huge essential part of taking care of her body and had prayed for it to be a success.

The motor started and Maelee started to shake and then she started to belt out "Twinkle twinkle little star," to see how she sounded. It was awesome. She still has the teddy bear that the woman gave her and its a treasure to her still. There have been many days when getting the vest done was a fight, but mostly it has been something that is accepted as part of the routine and necessary. She has started to notice a difference in how she feels if there is a weekend day skipped from the vest and knows she needs it.

Orson was able to get his when he was 8 months old. The most amazing blessing for him in his vest, and in all he does with his CF is that he has Maelee to blaze the trail for him. He doesn't remember a time when the vest wasn't a part of his life and he has a buddy to sit and do it with. Sometimes it bothers him still and asks for Frank or I to sit by him closer or hold his hand when he does it. It is actually a pretty special part of the day because its a mandatory "holding still" 30 minutes when all the kids are together. We are very thankful for the blessing of our CPT vests and know that using them everyday is so important to the maintenance of the disease.



















 

Tuesday, March 24, 2015

What is Cystic Fibrosis - an explanation by the Adams kids

Our friend came over and made this video of the kids talking about the recent events of our family. Their personalities are easily seen:)
 

An Amazing Turn Out for Waffle Love!

The Waffle Love truck coming last night was so exciting. The kids ran and ran in the grass out back and woke up exhausted and happy this morning, so they all bundled up with blankets to continue resting during treatments. Before Orson even got out of his bed he was asking if the waffle truck was still there so they could make him breakfast.
 
Frank and I never imagined how insane the turn out for the truck would end up. The line was continuously strong for 5 hours. I wish I would have thought to take more pictures of the event! They ran the truck an extra hour longer than planned because the line was so long! We even had a neighbor who knows the Waffle Love family jump in the back of the truck, wash up, and helped cook waffles for over 4 hours!
 
The kindness was breathtaking from people that know us first hand, and from friends of friends and strangers. We are so grateful for the work and time from so many families. There were details though of that I never could have. There were women and men who took their whole evening to be there to help. We are blown away.
 
It was unbelievable to see all that was given to us to help us get through the next couple of months of surgery, needed medical machines, and medicine costs. I wish I could bake cookies and deliver them to everyone who came and supported us, but since I can't do that I made everyone a thank you card.  We do have so much love and thanks in our hearts, and we really do think you are awesome. Thanks for helping, caring, and coming!
 

Monday, March 23, 2015

A Quieter Hobby : The 2015 t-shirt design CF Is Not Forever

My first job was my dream job. I worked in a small family owned fabric store as soon as I turned 16. It was a slow store, but really a wonderland of specialty fabrics and amazing prints. Having shopped for fabric with my Mom since I was an infant, and her letting me pick out my own fabric for dresses I learned to love the hunt for my favorites and had them all over the store. Even after this job ended I still can spend hours walking around in front of the cotton prints at any fabric store, for inspiration - and the inevitable joy that comes from the color and creativity of the prints.

But it turns out that my kids didn't appreciate my hobby of sewing because it was really loud. I would sew during their afternoon movie and wouldn't let them turn it up as loud as they wanted.

I have painted the main walls of my front room enough times over the past 8 years that one of Frank's friends who has been over enough to see all of the different paint said, "Hey I think you guys will be safe if there is a nuclear bomb dropped near your place, with all the of layers of paint you have surrounding you." So to sum up, I ran out of wall space to paint.

I needed a quieter hobby and started drawing and hand lettering more. It was really fun and Frank said I am always in a good mood when I have taken the time to work on my hand lettering projects throughout the day.

The design for the CF Is Not Forever t-shirt will be the same as the one below in the grid, only a purple outline of the design on a white shirt, available at the April 11th event. It will be a very cute shirt and I will post pictures when the order comes in the mail. 

I finished this week a Young Women Value's poster and have re-done a My Gospel Standards poster that I had another version of last year. This one is way better. We will be selling these for the fundraiser as well.

Sunday, March 22, 2015

How My Before and After Addiction Makes Me Feel Close to God : the Dolls are Finished!


I am addicted to the before and after. I wasn’t able to explain it on my own, why I liked “projects” so much and why the process of doing and finishing them gave me comfort, but Dieter Uchtdorf was able to explain it.

“Our birthright—and the purpose of our great voyage on this earth—is to seek and experience eternal happiness. One of the ways we find this is by creating things.” (Dieter F. Uchtdorf, Oct. 2008)

Some of my favorite mediums to create with are fabric, paint, and pen & pencil but Elder Uchtdorf says that creating happens in innumerable ways. Creating a smile that wasn’t on someone’s face before you came and talked to them, creating a meal, creating a clean space, the list goes on and one and does not in anyway require our creativity to be with a hot glue gun, paint brush, or sewing machine.
 
This next part of Uchtdorf’s talk is why creating makes me feel comforted. “The more you trust and rely upon the Spirit, the greater your capacity to create. That is your opportunity in this life and your destiny in the life to come. Sisters, trust and rely on the Spirit. As you take the normal opportunities of your daily life and create something of beauty and helpfulness, you improve not only the world around you but also the world within you.”

When I feel stressed out or sad or frustrated my Father in Heaven cares enough about me as His daughter to help me think of a way to create, and then I feel better. The whole process of it makes me feel better. So after the phone call in the Target about Ruby having CF came I went into a little stress coma for a while. I felt heavily very tired and ached with discouragement. Naps helped a little, but what I needed was to create something.

The idea of the fundraiser was brought to my mind and also specific things I could help the kids to make. Then I walked through my bedroom and saw a pile of fabric I had cleaned out of my closet a few weeks before sitting in a nice little pile outside of my closet (my bedroom is unfortunately always the last on my list to be beautified). BONANZA! My mind saw the pile of prints transformed into dolls I could make to represent Ruby in the fundraiser. I HAD SOMETHING TO CREATE! I was going to feel better soon! Hope returned and my heart was singing!

Uchtdorf said,“I believe that as you immerse yourselves in the work of our Father—as you create beauty and as you are compassionate to others—God will encircle you in the arms of His love. Discouragement, inadequacy, and weariness will give way to a life of meaning, grace, and fulfillment.”

I know that Heavenly Father loves me and loves all people on this planet, we are His children, He made us! He wants to lift us up when we are discouraged and help us to have a life of fulfillment. I feel very close to God when I create.

Here is a link to the complete talk by President Uchtdorf:
 
 

Friday, March 20, 2015

Library Breakthrough

You know how you can cut yourself and be bleeding but it doesn’t hurt until someone points the blood out to you and then all of a sudden it hurts really badly? Well that is how I felt when Maelee was a baby and we were learning about how to live with Cystic Fibrosis.

Someone we would meet that knew a little about CF, mainly keeping away from germ knowledge, would say something to me about what I was doing as a mother - or how I cleaned my house - or point out something about a place we had taken her and then suddenly something I wasn’t even worried about before was sounding off red alert sirens in my head.

Because of her time in the NICU the hospital we were in offered a service free of charge for NICU families. It entailed a nurse coming into your home to do well checks and developmental assessments on your NICU baby to make sure things were going well. This was offered not because we had CF, she wasn’t diagnosed until 6 weeks old, but because she had been in the NICU. It was a really incredible program and very assuring knowing that with all the new worries of having a new baby and the insecurities that come to all parents about their baby’s development, we had someone coming over every few weeks to let us know how she was doing.

When the nurse that was coming found out that Maelee had been diagnosed with CF she started to mention things she hadn’t before. Maelee was getting to be about 8 months old and super interested in board books. The nurse was over and started to talk about how the public library does parent & baby lap sit reads once a week. She was super excited telling me about it and then you saw her face change as she remembered that Maelee had CF. She stopped her cheerful story short about how much fun the library read alouds were and said, “I guess you wouldn’t want to take her there though with all those people and germs.”

So then goes my train of thought, “Crap, I didn’t realize that the library was a place we couldn’t go. My mom always took us to the library. I LOVED the library when I was a kid. But this nice lady with the amazing informative awesome check list on my baby’s development just said I wouldn’t want to take her there because of germs so she must be right.”

I mentally added the library to my mental list of dangerous germ places and scratched it out of any future ambitions.

But then when Maelee was 10 months old her throat swab came back with her first showing of pseudomonas and we started doing TOBI for the first time. I had to figure out how to make her hold still for 22-ish minutes with the SVN machine on her face in the morning and in the night for the 28 day antibiotic. I tried Sesame Street, toys, and then found Maelee’s magical hold still spell. Books.

I had a little collection of books that I had gotten before I had kids. I collected Bill Peet & Dr. Suess books for a while because I remember my mom reading those to me, and my major in college was elementary education so I was into children’s literature already. We read those A LOT. Frank and I both got to where we had our favorites to read and when we took turns giving her the TOBI treatments before bed we would line up the ones we wanted and knew how long it would take to get through them and the treatment. The books literally put her into this amazing happy trance and she would hold still and keep her mask on and breath in the medicine and the fight it was before we realized how much she liked to be read to was over.

One day later on when I was super pregnant with #2 Maelee and I started to get real stir crazy. We would go on lots of walks outside in our neighborhood but I was really afraid to go anyplace else. When we had both reached out breaking point of cabin fever I knew what I had to do. I searched through my purse for my old library card, googled where the closest one was, grabbed a big bag and we went.
We had such a good time picking out books and I was remembering how much fun I had with my family at the library when I was little and it was a magical 45 minutes of picking out books that we were both excited to read when we got home. We became expert at maxing out our library card. We made book nests. We read during breakfast, we read during lunch. It was her most requested activity.

Plus I realized that the potential of germs at the library and from the books was manageable – it was a huge breakthrough for me. I remained obnoxious about washing hands and still am today BUT my confidence in her and I as a team going places together during the day and surviving to tell the tale soared! Such a little thing we did, go to the library and check out books, but it really was a huge deal for me.

Maelee still lives for books. It remains to be the only time she holds still. She devours books. It’s her thing. She begs for library trips after school and then she reads them all up and begs to go back. She has some favorites she reads OVER and OVER (Freak the Mighty,etc) and gives Frank and I book recommendations all the time. She left one of her fairy books on Frank’s night stand recently and adamantly promised him he would NOT regret reading it.

Lesson learned, sirens do not go off when I think about taking the kids to the library anymore. Now its just a matter of not loosing the books instead of worrying about Cystic Fibrosis stopping me from being the Mom I want to be.



 

Thursday, March 19, 2015

Waffle Love - Monday March 23, 2015 - Adams Family CF Fundraiser

 
The kind family of Waffle Love is going to park on the corner of 24th Street & Pueblo in Mesa, Arizona 85204 on Monday March 23, 2015 from 4pm to 8pm. Portion of the sales will be sweetly donated to the Adams Family Cystic Fibrosis Fundraiser! How awesome!
 

Wednesday, March 18, 2015

Slicing and Drilling


Sometimes you think you are talking to just your husband but your kids are listening much closer than you realized. I was getting the last few things set on the table so we could eat dinner and having a conversation with Frank that I didn’t think was being paid any mind to by the kids. At some point I referenced “Orson’s surgery.” This is the conversation that followed with the kids. Also note that the only exposure they have had to anyone having surgery is their insanely brave super hero cousin who recently had major brain surgery to remove a benign tumor. The conversation will make much more sense if you have that last piece of information.

Maelee: WHAT DID YOU SAY?!? ORSONS’s HAVING SURGERY!

Charles: (drawing his finger across his throat) Oh that's where they slice you open and fix you up.

Orson: (huge eyes, screams) Someone’s going to cut my head off?

Charles : Yeah you’ve got a tumor.

Mom: No buddy no one is going to cut your head off, its for your tummy….

Charles: (interrupting me) Yeah buddy they will get a drill and go through your stomach.

Orsons: I HAVE A TUMOR IN MY STOMACH?

Charles: Yep I think I have a tumor too.

Dad: NO ONE HAS A TUMOR!

Mom: Orson is having surgery to get a special button put in next to his belly button so that he can get milkshakes at night while he sleeps and grow better. We will hook up a long tube like a straw up to Orson’s button so the milkshake can go into his stomach through the button.

Charles: Mom I think I should probably learn how to help Orson with his machine. Like is someone going to have to squeeze the bag because I could definitely do that.

Mom: Thanks for the offer Chuck, but Dad and I will learn how to help Orson. You aren’t going to have to do anything with it.

Charles: Ok but I should probably learn how in case it’s a Saturday and you are feeling tired and need my help.

Mom: Ok, maybe, we will see. You will definitely be able to see how it works because it will be cool.

Orson: YES!!! I won’t have to use a plate and fork anymore and don’t have to sit at the table!!!

     The GI doctor cleared a few thing up for Orson today about still needing to use a plate and fork during the day. Orson left with a new teddy bear that has its own button. A really awesome organization called “Tubbie Friends,” and the Goodman family, donated them to PCH to help kids not be scared about getting their own button. Totally cool.
 

Tuesday, March 17, 2015

Embrace the Sentiment

 
My husband quietly beats to his own drum. When we were dating he showed up at my house to pick me up for a date and had on a pair of jeans that he had worn so much that the thick hem of the jean had come undone and was hanging off the end of his pant about 5 inches. I instinctively did what my Mom would have done for me or one of my brothers if she saw us come downstairs with something hanging off of our clothes. I grabbed a pair of scissors and said, “Here let me get this for you.”

That was a bad idea. I then learned that these were his favorite pair of pants and that he had worked a long time to get them broken in to such a level. So we left for our date with the 5 inches of jean hem hanging from his pants and a learned the first valuable lesson about our relationship. He wears what he wants and I wear what I want. What I didn’t know then but would learn to find extremely endearing was the strong sentimentality in my husband’s heart.

For example, he began sneaking a radio into his bedroom to listen to Florida State Games when he was 12 years old. His Grandma found out that he like the team and began saving the sports pages in her paper for him to read at her house. Sentiment established.

 He continued to be a Florida State University fan all throughout his growing up years. His friends knew this, his family knew this, and he just held on to the idea of the team being his team to root for. Winning, loosing, changes in coaching staff, players came and went but the idea of his team being Florida State remained AND only became more important to him.

As his birthday came around every year he would always find a small something to buy to represent his love for Florida State. Over the years he has obtained an FSU bill fold, a lucky pair of FSU gym shorts to be worn during all FSU football games, FSU hats, and several shirts. He applied to the FSU masters degree program, got accepted and graduated in 2010 so that he could be alumni.

When it was time to go to the hospital to deliver our first baby he changed into his favorite FSU shirt to wear to the hospital. He has made sure that he wears that same shirt every time we go to the hospital to have a baby. We began to notice that in every Christmas card family picture we took he had an FSU shirt on. In years recent he has settled on the same shirt for every picture.

What I appreciate about this is that the importance of sentiments do not apply to only him. He has supported me in my sentiments as well. Drastic hairstyle changes & styles, crazy eye shadow, deciding I wanted to learn to make hummus and naan and making it every week for a couple of months, having a dream of only wearing shirts I made myself (many of which were not very flattering), painting murals on the walls of our home, hanging random homemade chandeliers from our ceiling, he bought me a couple of pairs of cowboy boots after my Dad died in 2005 to help me entertain my idea of wearing them everyday to be like my Dad, painting our kitchen cabinets taxi cab yellow and then a few years later powder blue, getting an arm chair at a garage sale and going through the many steps of completing reupholstering it all in our front living room for a few weeks, etc. And I knew that because it was important to me and it made me happy he would support me in it.

That is what I hope that our kids see and realize about their Dad’s sentiments about Florida State that it is important to him and it makes him happy and it for a very long time. It doesn’t bother him when people razz him about it for the randomness of his choice being from a small town in Arizona, it changes nothing about how he feels about it. Just like he is not shocked or upset when I go from brunette, to blonde, and back again or plaster our walls with seemingly chaotic color because he loves me no matter what my sentiments are.