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, 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).