Thursday, April 30, 2015

What the Bear Ate : The True Story of a Hungry Boy

Orson’s new “button” (gastrostomy tube) that would help him supplement his nutrition at night through a continuous 10 hour feed as he slept, was something we have talked about with out CF team and tried to avoid for 2 years. Finally as acceptance of its need came and we made preparations with medical professionals to get the surgery done we did what we could to be prepared.

Two big things that we were not prepared for though was, one – how difficult it would be to watch our three year old come out of anesthesia after surgery and the second was we did not realize how long he would not be able to eat by mouth after this procedure. We knew that he would need to fast from the night before the procedure until sometime after his surgery, we assumed directly after, which would be 2pm the next day. He ate dinner as normal Monday night and then woke up hungry for breakfast Tuesday, the day of the surgery. We made a big production about him “getting the day off from eating breakfast” – enough of a big deal that his brother was pretty jealous that he had to eat. But by 11am that morning Orson was feeling hungry and was going into pre-op and getting very worried about not be able to eat. We mistakenly assumed and told him that he would be able to eat, or at least have popsicles or something after his surgery was over. He accepted that and bravely went into surgery.

He woke up quicker than they let us back to see him after the surgery so we came around the corner to find him sobbing hysterically screaming “ouchy, ouchy, ouchy” and extremely distraught. I held him as comfortably as I could but his stomach has a new hole and a brand new piece of plastic sticking out of it so it was very tender and sore for him. The surgical team did not mean to, but had put his IV in on the hand that he sucks his thumb with so his natural mode of comfort was not easily available and also hurt. It took several doses of pain medicine and nausea meds to get him to calm down and stop dry heaving. He wanted me to sing to him, but I couldn’t finish most of the songs because I was crying too. So I just rubbed his back and cried with him until he fell asleep.

All the meds let him sleep for a couple of hours but his little scratchy voice would ask so sweetly if he could please have a drink or something to eat every so often. We were told 8pm Tuesday night was when he could started to eat again by the surgeon. What ended up being written down though on the orders, whether by miscommunication between the surgeon and with the doctor on call on the floor we were assigned, or whatever else may have happened was that he was not going to be able to eat until at least that next morning, Wednesday. It ended up being a 39 hour fast for him.

At about the 26 hour mark of his fast, on Tuesday night, he started to get really frustrated and anxious, but strangely accepting that he could not eat until breakfast. His little face was just expressions of exasperation, confusion, and sadness that he could not eat. He started repeating his order for breakfast over and over again, having Frank and I repeat it so we would not forget either (bologna sandwich, hot dog, strawberry donut, vanilla donut, and Gatorade).
Suddenly he said, “Mom, MOM, let me feed my bear!” I wasn’t sure what he meant but he directed me to the backpack he had packed for himself the day before with treasures in it and said I would find the bear’s food in there. I knew he had packed his bear but was totally confused about the bear food he was talking about. Sure enough, in his back pack was a tiny red tool box – his “treasure box” that used to be my Dad’s and my brother had given it to my kids a few years back to keep things in. Orson is the most recent kid to keep things in it. I opened the box to find lots of loose coins on the bottom and on top of them was a nice selection of the plastic toy kitchen food from the play kitchen in Orson’s bedroom, including a donut and a hot dog.

With joyful satisfaction he fed his bear the food he had brought for him. It really seemed to calm Orson down to do for his bear what no one would seem do for him. In a few hours his Dad was able to convince him to fall asleep, all of us praying that he would be able to sleep through his hunger. Orson woke up at sunrise. Every person that entered the room he would ask us, “Is that the doctor who says if I can eat breakfast or not?” Through several appreciated distractions and a very diligent and persistent nurse Orson made it to 9:30 that morning when finally the doctor that said he could eat breakfast visited our room and seemed surprised that he hadn’t eaten yet. He pleadingly asked her if he could eat breakfast and she said he could have whatever he wanted. Bitter side note, we did not think the shock in her voice that he hadn’t gotten to eat yet was funny.

We are so proud of him for making it through this 39 hours and are amazed at how he is handling his new button. He is undeniably being helped by his Father in Heaven who loves Orson very much. It is still very new and struggles with it will inevitably come, but all parts of the process of using the button, managing the pain that comes with recovery and getting used to this new part of his life will always be helped by a Heavenly Father who cares, who listens, who is there to help and send comfort. Our family is blessed by this sweet boy, his strength, and his unstoppable happiness.          

Monday, April 27, 2015

Change of Plans : A Camp In

A rare agreement without fuss, Orson agreed to skip the morning minutes on the Kindergarten playground with his brother Friday morning so we could get a jump on our shopping trip and make a morning appointment. So on Friday morning we went grocery shopping. But the most exciting kind of grocery shopping. Camping grocery shopping. Orson helped pick out all the fun stuff. We talked the whole time about cooking hot dogs over the fire, roasting marshmallows and Starbursts and of course sleeping in a sleeping bag. The mental list of all the things the boys would need was being gone over in my head. He was so totally excited. Of course big brother Charles and himself had gushed about the trip all morning together and could hardly wait until after school for Charles and for Dad to get home to take them.

Then something happened that RARELY happens where we live. It started to rain. It rained quite a bit, relative again to where we live, and we knew that if it was raining here it would be raining just as much if not more on their campsite. We began to feel like the camping trip should be put off for a few weeks.

We had planned for this father son camping trip to happen before Orson’s surgery to insure that they got to go on one because the Father and Son’s campout for church happens to be just 3 days after the surgery. We have no idea how the healing process will go and how Orson will feel so we wanted to make sure that they got to go and no one was left out.

Now, the afternoon was upon us and the rain continued. We pictured getting the car entirely packed up to camp and them getting there and not even being able to set up a tent because of the rain. Then we thought about the potential for Orson getting sick a few days before his planned surgery. Together Frank and I made the unpopular decision to put off this camping trip now until Orson is healed enough to go after the surgery happens. Frank and I knew that we had to think of something really awesome to take the place of the camping trip. We knew it would take some strenuous convincing and assuring that they would get to go on the trip eventually. I brought up staying home instead of camping to Orson on the way to pick up the kids from school when I would have to explain it to Charles, Orson laughed and told me “yeah mom, no, we ARE going camping. Dad is taking us when he gets home.”

When Charles got into the car and the first thing he mentions is the trip and the first thing I mention is needing to put it off there was granted, plenty of weeping and wailing. The good news is we had a kitchen counter full of already packed and stacked camping fun food. The boys sat down to soda and cookies as soon as we got in the door from school. They all got to sleep downstairs in sleeping bags after watching a movie. The next night was their favorite part.

Frank set up a little fire pit in the backyard and Orson and Charles went nuts. They not only roasted their cheese dogs, but gobbled them up. Then proceeded to roast handfuls of marshmallows and Starbursts while it sprinkled on them from the clouds above. Orson kept saying, “I guess this is a good camping weekend after all.” Charles was a good sport about it too. Frank even let them throw a little trash in the fire, Starburst wrappers, which of course they got a big kick out of.

They were hoping that some long sticks would magically appear in our backyard to poke the fire with like they do when they camp with Papa, but no luck with any big sticks appearing. Either way, a memory was made, and the kids learned to make the best of what we had to work with for the weekend. Here is to another shopping trip for camping food in the near future, and a successful surgery.  


Wednesday, April 22, 2015

The Day I Ruined Disneyland in the Parking Lot : A Call for Parental Resiliency

We love our children. One of the most exhilarating things as a parent to experience is the random, sometimes embarrassing, behaviors that our kids exhibit at the most inopportune times and ALWAYS in front of other people. During those times it’s good to be reminded mentally that we as parents and previous children ourselves had some pretty bad exhibits of behavior in our day.
In the early 1990’s my parents were able to buy a van for our family to drive together in. They planned a road trip in the new van to Disneyland. We were all very anxious for the trip. The coolest part about our new van was the amazing sliding door.
As a bossy-obnoxious-7-year-old-4th-born-of-six-kids-baby-sister trying desperately to prove how incredible I was (sound familiar anyone who knows my family now) I thought it was my right to close this new amazing sliding van door. My little brother 5th-born-of-six-kids trying desperately to be just as big as his bossy older sister disagreed with me. He thought it was his right to close the amazing sliding van door.  
We had finally arrived at Disneyland and were filling out of the van. Here it was. Time to close the amazing sliding van door. My little brother and I began to fight. He began to swing his arm in and out of the car through the hole the open amazing sliding door made. I being sick of the argument went ahead and closed the door anyway. His arm was inside the door when the amazing sliding van door clicked into place and got jammed.
I had closed the amazing sliding van door on my brother’s arm. It was broken. Both the arm and the door. But the broken arm was stuck, literally, in the broken amazing sliding door in the Disneyland parking lot. My brother was very upset. My parents were very upset. I was embarrassed and probably should have been more upset.
My Dad tried with all of his fatherly adrenaline to un-jam the amazing sliding van door and open it from the outside with the handle, but to no avail. He had to climb into the back seat from the driver’s seat and use the heal of his cowboy boot to kick open the amazing sliding van door.
While this was happening other Disneyland guests were arriving in the parking lot around us. My brother was screaming, rightly so, and there were tears and words associated with an amazing sliding van door being kicked off from the inside out being used, rightly so. Disneyland staff approached my mother and asked if we could please leave because we were causing a scene and disturbing other guests, rightly so.
Eventually the amazing sliding van door was kicked off and my brother rescued and consoled as much as possible by my mother. As my Dad was trying to figure out how we was going to drive the van out of the Disneyland parking lot with his family inside and no door, I have a distinct memory of rummaging through the bags in the back of the car to find some fruit snacks. From this one clear memory alone I am pretty sure I was a rotten kid.
My older brother held the amazing previously sliding door in place as my Dad first drove to the nearest hospital to get my little brothers arm set and then drove to the mechanics shop to get the door somehow fixed. My parents did get us to Disneyland at some point in that stay in California. We have a family picture taken after the arm healed with the Disney shirts to prove it. However I can imagine, even though unfortunately my only clear memory is the fruit snacks, that there were not many me-fans on that trip.
Thank heavens time passed, my brothers arm healed, I grew older than 7, and my family forgave me for my embarrassing behavior in front of all of Disneyland. If my parents can be that resilient with me, I owe it to them to be just as determined in my resilience with their grandchildren.
P.S. - Ed, sorry again about your arm. You do mean more to me than fruit snacks, I promise.

Sunday, April 19, 2015

How I Got Permission To Be Imperfect

I loved my elementary school in North Phoenix. We had a nature center, complete with a peacock and ducks. Often the ducks would have a nest and a large “quiet, ducks are nesting” sign would be posted on the outside of the nature center. It was ingenious because the nature center was in the middle of the school grounds so as all the classes crossed back and forth to PE, Art, lunch, and music they would have extra incentive to keep the noise down. It is easy to convince children of the importance of keeping noise levels down when a duck family is involved. I really remember it as an excellent school. All the teachers I had there were very influential on my life, including the art teacher and librarian.  

I have a very clear memory of one day in particular in the library. We were about to start a clay pinch pot project. The librarian was showing us art from several Native American tribes throughout Arizona. She told us that in their intricate and beautiful weaves and basketry that the Navajo Native American artists would put a mistake in their work. They would do it on purpose! I was shocked! Then she explained that they made the mistake because they knew that only the Creator is perfect so their work had a symbolic mistake in it to represent their beliefs in their Creator.

This was such an interesting and liberating idea to me. Not that we should not try for our best, or that those Navajo artists couldn’t have easily made a perfect weave, but to accept that imperfection is what we are at this point. This 15 minute lesson from the librarian at my elementary school has come to my mind more times than I can count throughout my life.
It brings me comfort when an important project doesn’t turn out as planned. It gives me courage to start something that I don’t know all the steps to or haven’t done before. It helps me now when the “ideal medicine and treatment schedule” isn’t possible to be achieved some days (you know when regular kid nights happen with painful scream inducing ear aches from midnight to five in the morning, I will absolutely turn on Curious George episodes and lay on the couch with the kid who finally took the medicine they needed to stop the pain rather than attempt to start the morning grind after a night like that). This mini lesson from a librarian in the 3rd grade had somehow permanently worked its way into my way of thinking and I had received permission to be imperfect, librarians are superhero’s!

A beautiful article from the July 2014 Ensign Magazine, by Gerrit W. Gong says it better than me.
Understanding the Savior’s freely given atoning love can free us from self-imposed, incorrect, and unrealistic expectations of what perfection is. Such understanding allows us to let go of fears that we are imperfect—fears that we make mistakes, fears that we are not good enough, fears that we are a failure compared to others, fears that we are not doing enough to merit His love.

The Savior’s freely given atoning love helps us become more forgiving and less judgmental of others and of ourselves. This love heals our relationships and gives us opportunities to love, understand, and serve as our Savior would.”

        I am grateful for a librarian who somehow gave me the acceptance of imperfection in the 3rd grade, and especially for the Savior Jesus Christ’s atoning love.
Kamarah, 3rd Grade

Wednesday, April 15, 2015

The "MacGyver of Mother's" Trained Me

A favorite slogan is “Use it up, wear it out, make it do, or do without.” My Grandma Nellie was the epitome of this expression. She taught me the beauty of it. She lived on her family’s farm in Geronimo, Arizona during the Great Depression. She saw her parents do just that, and then when her own time for adulthood came the world she lived in was entering WWII so she was ready to make it even more a part of her life’s mantra, “use it up, wear it out, make it do, or do without.”

She had stashes of lots of things saved throughout the rooms of her house. Anytime we visited her, she was working on some ingenious contraption to fix a problem she had within her home. From the supplies she saved she was able to make anything ranging from a fishing net, to something to fix the broken vacuum with, to a dress for my naked doll. Her mind was limitless in its ability to think of solutions and make them happen. She very well may have been the “MacGyver of Mothers,” able to accomplish any task with a gum wrapper, two buttons, a bobby pin, and some cardboard. It was plain to me as I watched her live that she was not afraid to solve any problem or try something far-fetched to get a job done. I wanted to be like her. She did get teased for her jars full of screws, and her drawers full of container lids – but if a problem needed solved she was the first the family came too to find a solution. This clarity of thinking in regards to problem solving was a gift she was very clearly blessed with by her Heavenly Father.

So as I evaluate my life now I see hope for my future as a MacGyver Mother. I save all my cardboard cereal boxes, metal lids from glass jars, and of course buttons. When a problem arises that I need to solve I try to let the part of my brain that I inherited from my problem solving Grandma kick in. In regards to how I have worked out some details of the Cystic Fibrosis equipment we have around the house I think Grandma would be proud. At first we started with one neb cup for meds, now depending on the med schedule with intermittent antibiotics we can have up to 5 that need washed, sanitized and stored every day for proper drying and use for the next day. Each neb cub has 5 parts to it, so that is 25 little tiny plastic pieces that need to be carefully placed and not lost in the shuffle of other dishes and chores happening around the kitchen sink. Where was I going to store this stuff that needed to dry before it was put away and really it was pointless to “put away” in a cupboard or drawer because it was used frequently enough it was a pointless battle.

Pretty sure that G-Ma would give me a pat on the back for this one. One day as our med schedule was continuing to increase and the problem of storing these neb cub parts while they dried and waited to be reassemble and used I was at the Dollar Store. I noticed a shower rack. Cleanable, easily hung, small drip accommodating shelves. Jackpot. Had it been thought of before by another person for neb cub storage, probably. But to me it was a new idea, given to me as a gift by a Father in Heaven who cares about my worries – even the small ones. This little idea has totally saved me headaches and serves its purpose well. The neb cub parts are stored away from other splashes of the kitchen sink and nowhere close to little hands that can grab them and loose the parts (it’s pretty devastating when the little blue rubber thing on the lid to the neb cup gets lost). To end I found the perfect MacGyver quote, "Ah, yes, that's the handyman side of MacGyver; he likes to make clever little things out of odd bits." Quayle (Deathlock) Thanks Grandma for being a MacGyver Mother and passing on the desire to solve problems out of “odd bits.” Also, P.S. G-ma, I have plans of making a CPT vest skateboard with castor wheels to more easily maneuver them around the house without having to lift them, its going to be awesome.  

Monday, April 13, 2015

Our Miracle - the Results

My friends that came and asked if they could expand my vision of the fundraiser were Shelle, and MJ. MJ was the food master, committee former, meeting planner, ultimate cheerleader & encourager, t-shirt and wrist band order woman, and so much more than I realize or know I am sure. MJ today described what Shelle and her family did best in a letter to the committee of people that worked so hard on this fundraiser:

" Dear amazing Adams Fundraiser committee,

 I can't believe that it is over.  We have been planning for the past 6 weeks and all the effort, thought, planning, hardwork, worry and stress paid off.  I would call it a HUGE success.

 Shelle was the instigator and the brains.  She's the one that said, "Let's make it happen!"  and she did.  I am in awe at the countless hours she and her family spent in planning and prepping.  She brought the life to the party!  (Just the number of pennant banners she sewed makes me tired thinking about it.)  Shelle gave all that she had, her time, her energy, her creativity and it produced that best party I've ever seen.

 Shelle and I were talking and she commented that it has been so nice to have such an amazing committee.  So many of you volunteered for assignments and then ran with it above and beyond.  Lots of people commented to me that our neighborhood is so good at pulling off big things.  I can't even begin to mention the flyers ditributors, the phone calls, the business contacts, the techonology learned (google docs/signup genius), the entertainment (genius at bringing in outsiders), the emails to friends and family, the bake sale bakers, the donators, the booth workers, the cleanup clew, the facebookers, and on and on and on...

 When you have Shelle's vision (and family) and a talented hard working committee then miracles happen."
I could not agree more with her description of Shelle and the work that she and her family were able to do. Mind blowing!
This event was like something you would see in a movie, the folks that put on the bazaar in the movie "Pollyanna" would be proud. People were setting up from 7am on the morning of the event and taking down until midnight that night, and 2 days prior. The "kiddie land" was a huge undertaking as well with my friend Mandi and so many others thinking of all these details to make it supremely fun. My kids had such a blast going through all the booths, over and over and over again. Orson went to sleep the night of the fundraiser mumbling over and over in a tired stupor "I had so much fun, I got so many prizes." Over an over. Then he woke up saying he dreamed about the party and prizes, and thought he should get to have one gumball before breakfast. The bake sale was filled with gorgeous items that sold quickly. Lots of talented bakers spent their Saturday and Friday night's working their rolling pin and measuring magic. People sat at the will call table and collected all the prepay dinner guests. My mom, sisters, brothers, mother in law, father in law, brother and sister in law, and my baby sister in law all came and worked the event. We had a photographer who donated her time and talents and put up with the challenge of me pulling my kids away from the kiddle land for a family picture. The delicious meat was smoked in smokers split between two different houses, hauled to the event, and then the same workers and more stood and served food for hours. 600 meals were served. It is dangerous to try to think of all the areas that people helped in because it was so vast and varied and all the little details that made it all come together were needed and completed with style.
So much thanks, gratitude and appreciation for everything. Let me tell you how all of these efforts has changed our life.
Between the Crowdrise donations, the Waffle Love night, personal donations, and the BIG AWESOME PARTY on April 11 we have the help to get through our current medical expenses. This does not include the electrical work to support the machines that was donated to our family, which we never would have done on our own, such a huge blessing. There was also a recent anonymous donation of 3 new medical compressors, the identical kind we were motivated to raise money for in the first place. The blessings we have received are so much bigger than we ever feel we could have asked for. 
I won't cry after I make calls to our mail order pharmacy to order what is needed. Because I know now that there is money there to pay for it. 
Frank will be able to sleep at night.      
With Orson's new g-tube we will be able to go into the surgery this month only worried about him and his care, instead of adding onto that worry how in tarnation we will ever be able to pay the bill. I know we have what we need to pay for the new equipment this will bring into the house and the supplements he will need every night as he sleeps.
I know that as soon as baby Ruby is ready she will get her CPT vest.
Frank and I were able to work together in a very cool way to do our part of the fundraiser and build our relationship as husband and wife.
Every day and night when I turn on our new compressors to run meds I won't think, "Does this sound funny? Is this even working right anymore? Man we need a new machine!" The peace of mind the new compressors brings, is hard to describe, a great comfort.
We met 5 new CF families, some online, and some that came to the fundraiser. I looked into the eyes of the parents in these families, and saw that they knew exactly the worries in our hearts, and also the hope that the love that exists within a family unit brings. Some of the parents we met had children that have died. One had a son that even came to the fundraiser. He has had a liver transplant and doesn't right now, but did have a g-tube for 14 years.
Our kids will remember this event and the efforts of all the people who helped for all their lives. We won't let them forget:) The cheering of all these loving people around them has given the kids and us the courage to live with enthusiasm and joy despite physical trials. The example that has been set for them, and the love that has been shown and given to our family has changed us all.  A friend described it yesterday as an example of people being "one body in Christ."
"So we, being many, are one body in Christ, and every one members one of another." (Romans 12:5)
Because what happened for our family from the support of those around us was truly an example of Christ like love. We sincerely thank all who have donated and who were involved in these miraculous events in anyway.  

Sunday, April 12, 2015

LIfted with Love : The symphony of April 11, 2015

At girls camp last year the theme song was "Glorious"
written by Stephanie Mabey, and performed by Russ Dixon.

The words to the song kept coming to my mind throughout the past month or so of this planning and preparing for the Adams Family CF Is Not Forever Fundraiser that happened last night.

When I began the idea I started drawing up the words to what I thought would be the shirt design we would use, and the "slogan" if you will. I wanted to express in the slogan that we know that our CF is something the kids will have only while we are here on earth, not after we are resurrected and begin our eternal post-mortal life. So my mind came up with "DF508 Only Now Not Later." DF508 is our specific CF genetic mutation. It made sense to me, but it soon became obvious that it was not easy to figure out for anyone else. Even Frank was like, so what do you mean by that?  

Then one night after we had met with our friends that wanted to help us with the event, to make it bigger than we could have ever dreamed of, lighting struck my brain. I know that the "lighting" was really the Spirit, or Holy Ghost, that helped me to know a simpler phrase to express the idea. "CF Is Not Forever" is what was brought to my mind. I know that Cystic Fibrosis is not forever, but our family can be and will be forever, as we work towards our Savior's example and keep our covenants.

This was the beginning of my symphony, or whisperings of the Holy Ghost, that helped me to write my blog posts, prepare for our small part of this fundraiser, and help the others who were preparing for the grandeur of the night that has changed our families life.

There were hours spent by many that I know, and many I do not. It started with one video to raise awareness about our story and the event, and then turned into several more that our family treasures. The gathering of donations was done by an army of friends and neighbors who took of their own time, with no personal benefit, to help the event be a success. The money for the meat and other food was donated by very generous friends. The t-shirts, and wrist bands were ordered, planning to feed 600 people was underway, details of trash and port-a-jons happened, the space we used for the event with stadium lighting and power was donated for use, people came three days in advance to lift, carry, move, and set up massive canopies. Large sound equipment was set up, a stage was assembled, bands and other unique and beautiful musical and dance groups came and gave of their talents and time. The details and donations for the raffle and silent auction were mind blowing in themselves. Other peoples husbands, wives, sisters, brothers, daughters, sons, cousins, neighbors, and friends all had a part in this crazy awesome "symphony."

We are still working out the details of the end monetary result and will know final numbers on that in a few days. But what happened for Frank and I as parents was this - a burden has been lifted, lifted with love by our community. It feels impossible to express the appreciation we feel for what has been done for our peace of mind about the earthly burdens of CF. We know get the privilege of thanking, or trying to thank all those who helped us in a way we could not help ourselves.
=======Here are the words to the "Glorious" song===============
There are times when you might feel aimless
And can’t see the places where you belong

But you will find that there is a purpose
It’s been there within you all along

And when you’re near it
You can almost hear it

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious
You will know how to let it ring out
As you discover who you are

Others around you will start to wake up
To the sounds that are in their hearts

It’s so amazing
What we’re all creating

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious
And as you feel, the notes build, you will see

It’s like a symphony just keep listening
And pretty soon you’ll start to figure out your part
Everyone plays a piece and there are melodies
In each one of us, oh, it’s glorious.



Friday, April 10, 2015

Adams Family: National Sibling Day

The Blessings of an Anchor

My favorite scripture is Ether 12:4. I had a neat experience with it  a couple of years ago. I heard Frank read it aloud during family scripture study one night and it struck me that it was exactly my testimony. It reads:
“Wherefore, whoso believeth in God might with surety hope for a better world, yea, even a place at the right hand of God, which hope cometh of faith, maketh an anchor to the souls of men, which would make them sure and steadfast, always abounding in good works, being led to glorify God.” - Ether 12:4
It explains faith in God in such a simple and perfect way. If you know there is a God because your heart and spirit remember and know Him, your Heavenly Father, then that sweet feeling and knowledge gives you HOPE! Your hope that naturally comes from your faith creates an anchor from your soul to God. That anchor holds you in place, guides your life, and keeps you working towards loving God back by doing good things.  
I think that many people that know us did not know about the Cystic Fibrosis in our family, or if they did really what it meant. That was perfectly fine with us, and really how we thought we wanted it. We never wanted anyone to stand out, or be felt sorry for, we still don’t want that. Everyone has challenges and trials in their life, we knew we were no exception.
But when I found out about Ruby I felt like I needed to write it down, how I was feeling, and our story. It was so cleansing for me. The process of putting things into words from our CF experiences over the past 8 years was a very sacred experience for me. I wasn’t sure how my husband would feel about it because the original “long story” I posted on our Crowdrise page was very open. I felt like I needed to be open to relay the true measure of the desire of my heart. I had Frank read the story expecting him to change it or change his mind about my idea of doing the Crowdrise page and our original fundraiser idea. He didn’t though. He told me that it sounded great and that I should go ahead and do it. That’s when I knew that Heavenly Father was softening both of our hearts to prepare us for the highly emotional months ahead.
Our testimony of Heavenly Father’s plan for all His children was already in place, but because we took the opportunity to share it and the struggles that come with remembering it when faced with Earthly trials - and HOW we remember it, our testimony is stronger. Our anchor, which is our faith and hope in God, is such a blessing. It has been a tremendous experience through all of this sharing so see all the other anchors of others. We are beside ourselves with gratitude for the blessings we are receiving, and coming into the last 24 hours of preparing for this event!  

Tuesday, April 7, 2015

The Women Behind the Dolls

So this may have not been the "best" of the good, better, best ways to spend an hour of my evening - but I was so excited I had to play with Photogrid. A man in a Florida State shirt, who will remain nameless, helped me to finish 20 more dolls for this Saturday's event, bringing the total to 40! He traced 44 dolly arms, and 22 dolly heads, then stuffed them all for me so I could work on the other stages of the process. True love.
Without further delay here are the women behind the dolls. Or the dolls behind the women I guess...


Monday, April 6, 2015

My Child's Faith : She Knew the Plan

      As a parent watching their child grown, learn, and start to ask a million questions there are certain conversations that you start to prepare for, and some you never can. When you live with a chronic disease in your family “the talk” about what that can mean is definitely one you try to be ready for.

Because we wanted to make sure that our daughter knew that no one really has a perfect body and everyone has physical challenges that they overcome and live with we try to talk about those things as often as we get a chance, even when she was very little. The chances came up to talk about physical hardships others face with an elderly neighbor who has had several strokes and the effects of that on her body, a close family member who we love who has lost a lot of their hearing, etc. We would talk about these things in hopes of showing a pattern that she would recognize in her own physical challenges, that these challenges are given to us not because Father in Heaven loves the person who has them less than another, but because it is part of how He helps them to be spiritually stronger and others to be stronger. Then the best part, the most exciting thing we hoped she would remember from these conversations was that these imperfect bodies are our earthly bodies. That through Christ’s resurrection and atonement for the world we would all one day be resurrected like our Savior and have a perfect body without these physical troubles.

      With Maelee it happened much earlier than we thought it would. She was 4 years old and I was very pregnant with her 2nd brother. She was having a hard week and very fed up with me asking my favorite questions. “Did you take your enzymes?” “Will you please do your spacer?” “Can you please put your vest on?” One day at lunch she threw her enzymes across the kitchen table and this is our conversation that I loved so much I wrote it in my journal.


Maelee : “I wish I didn’t have Cystic Fibrosis and didn’t have to take enzymes and do my spacer and my vest.”

(me thinking this is my big chance)

Mom : “Maelee who gave you your body?”

Maelee : Heavenly Father

Mom : “Does Heavenly Father love you?”

Maelee : Yes

Mom : Do you think He still loves you even though He gave you a body with Cystic Fibrosis?

Maelee : Yes

Mom : Why do you think he gave you a body with Cystic Fibrosis?

Maelee : To test me.

Mom : That’s right so you could learn from it, and I learn from it and so does Dad and Charlie. I know that things you have to do for your CF aren’t fun and bother you sometimes but do you think you can keep trying hard to make the best of what you’ve got?

Maelee : Yes

Mom : Why?

Maelee : Because I am strong.

Mom : And because you’re a daughter of……?

Maelee : GOD!

Mom : That’s right you are strong and you’re a daughter of God

(now I am getting emotional)

Maelee : Mom I have another question.

Mom : OK what is it?

Maelee : Are wolves bad?

Maelee : And what do fish eat?


       Her faith was in place and growing, but thank heavens she was still just a regular four year old with lots of questions about her life, wolves, and fish. There has been already and will be more conversations like this to come, but we know the best part so we are ready.

Sunday, April 5, 2015

Meet the Adams Family : The Short Story


Cystic Fibrosis.

13 years ago, those words meant nothing to me. Now they influence almost every decision I make.

Before We Knew

In 2002, I fell in love with Frank and we got married. Five years later we were preparing to bring our first baby – a beautiful girl – home from the hospital. Our doctor noticed an issue with her stomach and she stayed in the NICU for a week to clear it up. A blood test was taken to rule out a long list of potential causes for the stomach issue. Bottom of the list and least likely (according to our doctor) was Cystic Fibrosis. Neither Frank nor I had any relatives with Cystic Fibrosis, so we didn’t think much of it. However, when the results came back her diagnosis was indeed CF.

Unknowingly, both Frank and I were carriers of a genetic mutation called DF508. 1 in 30 Caucasians are carriers of this defect and if two carriers have children, there’s a 25% chance that their children will have two copies of this genetic defect and be diagnosed with Cystic Fibrosis.

Initially, we were told our daughter had a terrible disease and she would die young. However, after working with the angels at Phoenix Children’s Hospital Cystic Fibrosis Clinic, we learned what CF means and how to help our daughter not just survive, but grow, learn and thrive.

Learning About Cystic Fibrosis

In its simplest terms, the salt and water in a body with CF don’t work together like they should. The incompatibility of salt and water in the cells causes thick mucus to form and coat the organs of the body – typically the lungs and digestive system. Although a person with Cystic Fibrosis has a normal immune system, the bacteria that gets stuck in their lungs when they get sick has a very hard time leaving.

Additionally, people with Cystic Fibrosis are not able to utilize the natural release of their own enzymes from their pancreas because the pancreas is blocked by mucus. This requires that they take prescription enzymes with all food to try to mimic the natural enzymes needed for digestion and nutrient absorption. If these enzymes are not taken with all food the result is no digestion, no growth and no weight gain.


Continuing to Live

Despite the difficulties, our daughter’s medical treatments soon become routine and we were blessed to give her a baby brother two years later. He had only one copy of DF508 – so he is only a carrier like ourselves. Two years after his birth, we were expecting our third child, another boy. Prior to his birth he was diagnosed with CF. Now four years later, we are expecting our fourth child. A little girl due in June. Baby Ruby has also been diagnosed with CF.

Many people ask how we could continue having children when we knew there was a 25% chance they could have CF. Why would we not seek adoption or fostering a child in need. Didn’t we feel guilty?

Yes, feelings of guilt and confusion the past seven years have at times been overpowering. We have wrestled with what was the right decision. In the end, adoption was not the right avenue for our family at this time.

Through our darkest times, the overwhelming anxiety about the trials and struggles our children would face and the crushing guilt as we expanded our family, Frank and I have tried to focus on three things –  hope, our faith and the love we can share with our children to give them the courage to face every challenge that will come. We know that Cystic Fibrosis is not forever, but our family is!