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.

Sunday, May 1, 2016

That Time I Tried to Cut His Pants

We had not been dating very long but it was the first time my boyfriend was going to meet my parents. It was not a situation I had really been in ever, having an official boyfriend and being out of highschool that is (a grown up relationship, as much as it is when your 18 anyway)and I wanted it to go well. My parents had already left for my younger brothers football game and we were going to meet them there.
He knocked on the doorbell and I took my mental notes of his appearance scanning for anything my parents may notice. He didn’t dress like my brothers so I figured that would be a red flag right away. Of course I was very taken with him and wanted them to feel the same way. My mom is an exceptional laundress and always made sure our shirts were ironed and we looked put together. I remember several times being ready to leave for the night and stopping in to say goodbye to her and having her ask me to let her iron my shirt before I left. So when my boyfriend walked in with the hems of his jeans hanging off his pant legs 3 inches on both sides I assumed he did not know he was in such disarray or he would not of left home like that.
My natural instinct was to grab a pair of scissors and cut off the dangling hems, once again assuming he just hadn’t gotten to it himself yet. So I did. He had no clue why I was searching for scissors in the kitchen since he thought we were leaving right away but when I bent down to cut off the hanging off part of his jeans he was surprised and to my surprise very upset. He wanted to know why in the world I would go off and try to cut his pants, while I of course wanted to know why in the world he would walk around tripping over and having his pants being stepped on. But in the end of course they were his pants.
Now of course it seems very rude of me to – without even asking – presume cutting his clothes would be something he wanted. His reasoning was endearing. He said he had finally broken in this particular pair of jeans. He had worn them on his mission for our church in Australia, and also worn them many days working at his current job. He had worked hard to get the hem worn down enough to unravel and my cutting it off would be to ruin all of his hard work and take away the significance of a nicely broken in pair of jeans.
I learned a lot from that interaction between us. One thing of course was to communicate better myself and stand still longer mentally before jumping to fashion and appearance conclusions. Another thing I learned was how sentimental my boyfriend and future husband was.
All of these things I thought about last month when I was going through a long collected stack of old jeans and cutting them up for a project. The style of his dress has evolved with his age and he doesn’t wear his jeans quite so baggy anymore but his sentimentality remains a great part of his charm to me.

The "broken in" jeans

Of course he would want this cut off right?

Thursday, April 7, 2016

How Church Can Help You Love Like A Sunbeam and Shine Like A Catholic Mother


I was raised to attend church every week. As I did that with my family growing up we made friends and were able to give and receive help. I know I am blessed to live in a country where I can do it now with my own husband and children. In both instances my family became a part of a congregation of people with shared values and shared experiences that united us with our fellow church goers. These experiences shared together, life experiences - some, where you help someone or they help you to come through a hard time, and also spiritual experiences where you feel the power and love of God together can be found no where else.


Lately two experiences have crossed my mind about why I am thankful for church and being a part of a congregation of others who worship God in a similar was as me. One of the experiences is mine, and the other is one I just observed. My experience is not linked to an outstanding life event like death or even really tragedy, just a rough spot in my life.

I was in the middle of an emotional place. Changes had come my way that I did not expect. Both physically and emotionally I felt rotten and was finding it hard to keep my mood up. It was easiest to think negatively about myself and what was happening in my life.  

During this same time I was given the opportunity to change my job, or “calling,” at church. I had been working with the teenage girls for a few years in my neighborhood church, but at this time the change came for me to work with the 3 year olds. In the church I belong to the class with the children who are the age of 3 are very correctly called “Sunbeams.”

I walked past the other children and adults in the room and sat down on the front row with the Sunbeams. I felt the same negative thoughts about myself begin to play in my head that had been so frequent as of late. As I sat there completely absorbed and wallowing in my self-inflicted pity party one of the little girl Sunbeams came and stood next to me. Soon she was on my lap. Next she gave me a hug. Then she raised up eye level with me and stared at me for a while. She smiled and raised her Sunbeam hands to my eyes and started touching my pink eyeshadow very softly. She spent the next two hours being my friend, me her new teacher who she completely accepted and was ready to love just for being there.

The only guest I had at my pity party left right then and because of her kindness and acceptance I was able to focus on being a friend and serving someone else. I was so grateful for her Christ like example to me and use it as inspiration for how to accept and love people around me.

The next experience I keep thinking about in regards to being a part of a religious congregation happened while I was at work in a Catholic church. I was working as part of a wedding film crew. The bride’s family that we were filming that day was very special. The father of the family was a very loved and admired patriarch who was suffering from ALS. At this point in his disease he was not able to speak or move on his own and was restrained to a motorized wheelchair. The whole day as we were with this family from early morning to late night I was very captivated to watch the meticulous care and concern his daughters and wife gave him on this busy and grand day for the family. He was never forgotten about or not included (including his daughter pushing him around the room for their wedding dance together). But throughout all this display of love for this father on this day what I think about most often is what happened during the Catholic communion line.
As the congregation participated in communion the line exited past this father and mother of the bride. The mother stood proudly next to her husband in his wheelchair. Each member of that congregation walked past this couple. I stood behind my camera and watched as each one made eye contact, touched hands with, and expressed love to not only the wife who could respond back to them but also to her husband who could not. These people clearly had a familiarity with this family and this man and wife. They had seen him as he was before his disease took over his body. They had watched the change happen to him and surely had walked a few steps with this shining Catholic mother who gracefully was walking up the mountain put before her.

I was so impressed! The love and Christ like example shown in that Catholic congregation has stuck with me ever since.

It is very comforting to see that as I participate in my religious congregation and as I have seen others participate in theirs, God works through his children to uplift and give light to the dark places in our lives.  

Saturday, March 26, 2016

Raising The Queen



There is of course a natural prestige attached to the baby of the family. The great part about that is that every kid gets a chance at having it, but of course the last duckling gets the longest run. So now we have Ruby getting her shot at all the glory of being the baby. It’s easy for me and her daddy to shine the spotlight of babydom on her but it is really entertaining to watch her brothers and sister do the same.


It starts first thing in the morning. The other kids wake up and are ready to start the day and I shoo them away to the farthest part of the house away from the baby in hopes that she will sleep a bit longer. As soon as they hear her make any noise on the baby monitor they all come racing back to her room to see her and to play with her. If they are doing their vests and medicine when she wakes up they all insist on me bringing her to each of them to say good morning before they will continue with their tasks at hand.

They all dote on her and fight over her attention. All three siblings will go out of their way to make sure she is comfortable, happy, and not in any way fussing. If Ruby gives a smile or a laugh to one brother the other sister and brother clamor in to get one for themselves.

Now we just have to keep goaling for all the kids to treat each other the way they treat Queen Ruby. Henry Eyring quotes President Ezra Taft Benson in his talk from 2012.

“Above all else, children need to know and feel they are loved, wanted, and appreciated. They need to be assured of that often. Obviously, this is a role parents should fill, and most often the mother can do it best.” (Ezra Taft Benson)

Then Eyring goes on to say, “But another crucial source for that feeling of being loved is love from other children in the family. Consistent care of brothers and sisters for each other will come only with persistent effort by parents and the help of God. You know that is true from experience in your own families.” (Henry B. Eyring)

I am grateful for families and for kindness and love, and especially for the privilege to raise all my little queens and kings.

PS - We recently had the chance to be photographed by Phoenix Children's Hospital in all our messy glory (notice the kid junk wiped on my jeans in this photo) so we got some new family  pictures.

Sunday, March 13, 2016

A Mother's Struggle, Mary Poppins VS. Military Police


Mornings are often overwhelming for me and I struggle. I feel anxious about missing a piece of the medical routines for each of my three CF kids, and then making sure to give proper attention and love to the one kid who does not have a long list of medical to do's to start his day. I find myself attempting to morph into two different versions of my motherhood that have the same initial (MP). Mary Poppins and Military Police.
Mary Poppins said, “In every job that must be done there is an element of fun. You find the fun and snap”…….wait rolling out of bed EVERY morning and having your Mom bugging you to get your 35 step medical routine done before you then leave for school all day does not sound like it could be turned into a game at all.

                My inner Mary Poppins that really likes making appearances as often as possible has a hard time showing up in the morning during treatments. Instead the old Military Police Mama shows up. She does not turn anything into a fun game, but has a short temper and only wears sassy pants. She scares Mary Poppins back into the painting. As I realize this on my military police mama morning’s I try to figure out how I can stay on the ball as a mother, person, and woman in the midst of the pressure of remembering all the medical and emotional details for all my babies – how do I let Mary win over the military police mama?

                Well for one thing I have to get myself in order. What I have found works for me is as simple as making time for prayer, eye liner, study of spiritual text (scriptures, conference talks, or the Ensign magazine), and doing my hair.

Prayer – Talking with my Heavenly Father about my blessings, family members, and plans for the day helps me to clear my thoughts and focus on what matters and where my joy and peace comes from. It helps the day start off feeling even better than getting all three pieces of the mushroom in Mario Bothers on the first try.

Eye Liner – I don’t just put on eye liner, but I have a simple make up routine that makes me feel polished and ready for the day. Call it vanity, call it a mask, but definitely for me call it a little hope in colorful liquid, powdered, and cream form. So when the parts of the day come when I am washing up and wiping off another humans bodily fluids, being screamed at, argued with, ignored, and fulfilling endless requests for assistance I can know that I am doing it all looking as beautiful as I know how to look, and also of course it gives me physical hope that I am not an animal despite often feeling like one.

Study – I feel so happy after I listen to, watch, or read a conference talk. I always find a piece of advice, encouragement, or receive inspiration for an idea to try that will benefit my current personal situation. It is like changing the light bulb in a room that you have gotten used to dim lighting in – WHOA what a difference to my mind and heart. I have started to really enjoy reading the Ensign magazine on a tablet through the Gospel Library app because I can read an article and click on the scripture references as I am reading and get pieces of the scriptures pertinent to me instantly.

Doing My Hair – I guess this could go in with the Eye Liner paragraph and I know it’s another chalk mark up on the vanity board, but I am a happy girl when I have cute hair. It makes a difference in my day when I have taken the time to fix it, even if it’s just a smooth ponytail.          

                Getting all of these things done does not happen every day. Sometimes pieces of these things get done, or sometimes I wake up and automatically surrender to the stress of the checklist and let it lead me down a grumpy and pitiful path. But I tell you what, I like being Mary best and here's to a spoonful of sugar.


Sunday, February 21, 2016

She Gave The Perfect Answer

A memory from childhood is me riding on the back of my Dad’s bike in an attached seat. Our house in Phoenix was not far from a canal that we could get to from the alley off our backyard. I remember going for family bike rides and screaming my guts out or crying the whole way because I was sure that I would fall into the canal. In my minds eye we were teetering on the edge of the canal and I was sure I had dozens of near entry’s into the murky brown water. In reality it was no where close to that and a very neat and fun act of parental awesomeness on my parents part, but at the time I didn’t see it that way.


Now, as parents with some kids who are old enough to be proficient on their own bikes, Frank and I have visions of similar adventures on our neighborhood canal path. I asked Maelee what she thought about riding with me on the canal on her bike. She had absolutely no reservations and answered that she would love to do that with me. Then, because of my own terror as a kid, I asked her “aren’t you afraid you might fall in.” Without missing a beat in her response she said, “Mom I can swim.”

She gave the perfect answer. I thought it was anyway. No fear, no worrying about saying what she thought I wanted to hear, just a moment of perfect wit and clarity of idea right on the spot.


I wish I could have carried that same clarity and wit with me yesterday. Yesterday we had the chance to attend a CF Family Education day at Phoenix Children’s Hospital. I was asked to participate in the last part of the day when there would be a panel. I was nervited (nervous and excited) and also scared. I knew that the people who I would be sitting in front of for the panel would mostly have more knowledge and experience than me with Cystic Fibrosis.

I have written before about the “cringe of comparison” in the sphere of a world like Cystic Fibrosis. At diagnosis you ask yourself and then others constantly ask you “how bad is your CF.” So as you try to find out the answer to that question you realize that there is no scale or number to give, but a very wide pendulum of complications that the disease can cause for a person and that while similarities in symptoms and treatments from patient to patient of course exist each CF person lives out a very different experience.

Of course when you get a group of parents together with this glaring similarity in their children (aka same disease name) of course you want to hear each other’s stories so you can maybe unlock some of the mystery to that original question “how bad is our CF.”

So here I am sitting in the panel and I have already given my introduction and I have tried to speak confidently and from the heart and then I get a question that makes me cringe. Really it’s the one I began asking 8 years ago when we ever thought of having another baby. The question was in essence, “how do you keep your kids safe from each other in regards to the CF to CF contamination concerns.”

My answer was fine. But in my haste and fear of looking another CF parent in the eye who wants to know really what kind of person would continue to have children knowing that those kids could someday play catch with with lung damaging bacteria I may have mistakenly came off as apologetic. So in an attempt to boost confidence and bravery for myself and to prepare myself to give a better answer with confidence and clarity in the future here is my future answer to that question:

      “Yes, we are definitely concerned with and aware of CF to CF person contamination issues. However besides using the hum drum methods of diligent hand washing, doing our best to keep a clean home, and giving a sick person more space like any family would we have no other tricks or methods. Our belief is that while clinically our kids should never be in the same room, this is our family. We believe It is more important for us to be the best family that we can be and spend the most quality time together that we can learning how to love and forgive and work rather than to obsess over who might be contaminating who. We do not believe that the God we worship and love will protect us from all sickness and suffering, but we 100% believe that the God we worship and love is guiding each member of our family through this earthly existence and helping us through all things.”    

That is kind of a long answer, and I may have had to take a breath our two between sentences but if I could go back and say that I would love to do it. Or a much shorter answer would have been, Mathew 19:26 – “But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.”

Sunday, February 14, 2016

The Valentine's Day I Almost Became A 19 Year Old Widow



Our first married Valentine’s day was about a month before our first wedding anniversary. My husband Frank is way better at being thoughtful in regards to gifting than I am and can be sneaky while doing it. So when I got a call directly to my desk at the bank I was working at from a man claiming to be a police officer and asking for the wife of Frank Adams I thought it was a joke.

The officer assured me it was not a joke and let me know that my husband had just been in a car wreck. The officer said that he did not know anything in regards to the extent of my husbands injuries except that it was bad enough that they had taken my husband away in a helicopter to the hospital. Completely shocked my mind began inventing all sorts of reasons why a helicopter would have taken him away.

I ran into my new boss’ office and emotionally told her about the call. Totally reeling, I remember telling her that I had no clue how to get to the hospital he was taken to. Also she knew that I was very afraid of driving on the freeway (so much so that I was choosing to go 17 miles on the surface streets to and from work instead of driving on the freeway). She knew right where to tell me to go on the freeway and gave me a pep talk before I left her office doorway muttering the repeated freeway directions over and over again and I shakily walking to the car.

My parents both were unreachable at work, and my husband’s parents were both 150 miles away so I called my husband’s sister. She said she would absolutely meet me at the hospital. Then my phone started ringing.

The first call was from Frank’s boss. Frank was a plumber at the time and worked in new housing developments. His boss had not been too far away from the location of Frank’s accident and was there before the helicopter came. His boss told me that he didn’t know more about Frank’s injuries or really what happened except that Frank kept saying that his back hurt before they put him on the chopper, and that he also would meet me at the hospital.

My minds eye saw Frank like the opening scene of a tv hospital drama being wheeled into the hospital surrounded by EMT’s and hospital staff and him covered in blood and barely alive. Would I even recognize him? How badly was he hurt? What would I do without him? Would he die before I got there?

Driving now (and as I am continuing to mutter the freeway directions that my boss gave me while white knuckling the steering wheel) my phone rings again. This time it is a man who says he is the Chaplain at the hospital Frank is at. Of course from my years watching MASH I knew that this religious representative calling me before I even stepped into the hospital was not good. I don’t even remember what he said or asked me except that my mind kept screaming, “HE IS GOING TO BE DEAD BEFORE I GET THERE!” “WE HAVEN’T EVEN BEEN MARRIED A YEAR YET AND HE IS DEAD.”

I get there and they usher me into a little waiting room. Two seconds later Frank’s sister and her family walk in. The chaplain comes and talks to me again and then they say that I can see Frank. I am terrified to walk into his room, but so thankful to be there.

His pelvis had been shattered and he was scraped up pretty good but coherent and alright! I remember being so completely relieved my husband was alive and feeling very thankful for him.

Frank’s boss was a member of the same church that we are and came right in with his boss as well who also was (yeah surprise all the boss’ came and Frank got a lot of undesired attention from “upper management” that day). Both men along with my brother in law gave Frank a priesthood blessing right there in his hospital room. I was so thankful that they were able to do that and it provided a great comfort and calm that I needed.

The rest of the story about Frank’s accident gave me even more reason to thank my Heavenly Father. As the small plumbing truck that Frank was driving got t-boned by another truck about the size of a tow truck, Frank’s truck flipped onto the driver’s side and was pushed quite a ways before it stopped. Frank’s window, the window the truck flipped onto and one can assume Frank was slammed into despite his seat belt being buckled did not break. Had it broken, or had Frank not been wearing his seat belt like the guy in the passenger seat clearly the outcome would have been much grimmer.

The accident and how Frank was protected was a major reality check to my 19 year old mind. Now more than a decade later it still drops a bomb on my heart. If he had died that day I wouldn’t have any of the sunshine I have because of him. He helped me survive my twenties and graduate from college, which took a lot of doing. He put/puts up with my nonsense and helped/helps straighten me out when I am going nuts. And best of all he has walked through 4 kids with me, and carried me when I felt like quitting and then nudged me along with his foot when his arms were full of kids. Charles and Orson wouldn’t be here let alone have their sparkly blue eyes. I could go on and one and on. So every Valentine’s Day we think of the anniversary of “Frank’s accident,” and the miracle of the day and the ripple effect through all of the years after.





  




Sunday, February 7, 2016

45 Hours & 2,000 Pieces Of Marriage


We got it to start with as a project to do together as a family during winter break. That foolish dream ended when we opened the box and saw the magnitude of the 2,000 piece Star Wars cast puzzle. But determined to finish we began to work on the puzzle at night together while the kids were sleeping. With our favorite watch together tv show as background noise we would work on the puzzle, usually from 8pm to 11:30pm. Then we would say we were going to bed and shut down the tv and then stand at the puzzle together again for another hour or so helping each other find certain pieces that we had been stuck on.

All in all we took about 45 hours to complete the puzzle over a period of one months’ time. These stats are probably pretty laughable compared to other puzzlers out there, but I give them for reference only. We found out some interesting things about each other as we worked on this complicated but very centrally focused project. It was similar to our personality and patterns established in our relationship over the past 13 years being played out in 2,000 cardboard pieces.

I wish I would have taken more pictures along the way to better show what happened.

We started with the edge pieces of course, separating them out from the non-edge pieces. Completing the frame of edge together was easy we did it in one night. Then it got interesting. We picked our own corner to work in. Really it seemed not working together at all. Frank went for the lines and pattern of the stairs at the bottom of the puzzle and I was drawn to the crazy color of the explosions against the sky at the top of the puzzle.

Soon I began to get bored with the section I was working on and would jump to another little section that would catch my eye as I was sifting through the 6 trays we had the pieces separated into. Frank however did not stop on the stairs until he had four even rows of the puzzle put together from the bottom up horizontally.

And so it went. I jumped around and flited all over the puzzle and Frank found a section and would not move on or deviate from that until it was complete. Eventually our sections would merge. Then we would be made to work together. Frank would look for his pieces by shape alone (because he is color blind) and have huge success. I would find my pieces based color alone and do well that way.

We got to the end and had one tray of pieces left. We both started sweating because the math of exactly 2,000 pieces of anything around 4 kids over a months period of time it seemed sure we were bound to lose a couple of pieces. We held our breath as we placed the last piece on the puzzle that we thought would be much easier than it turned out to be for us.

It has been revelatory to compare how we worked on the puzzle together to how we work together in non-cardboard ways. Professionally, cleaning, food preparation, home improvement projects, organization, child care methods, personal goals, etc. I feel like I am a shot gun that keeps shooting at my target over and over again until there are eventually enough holes that the target disintegrates, while my husband is more of a look through the sight type of guy waiting for the wind direction to be just right (no matter how long it takes) and getting it done in one clean accurate first shot.

But as far as targets and puzzle go working together we can get the job done (although I must admit I have never actually shot a shot gun).