Sunday, May 21, 2017

Throwing Up In Front of 800 Children

It was the kind of week where you throw up in front of 800 people.

Monday: Primary care physician says Ruby’s lungs sound junky enough that he wants me to get into the CF clinic right away.

Tuesday: Frank takes the day off work to get Ruby to the CF clinic first thing in the morning while I serve the day enjoying the jury selection process in downtown Phoenix from 7am to 4pm.

Thursday: I am sitting in the back of the packed school auditorium proudly watching my second grader (The Real Prince Charles) perform his 2nd grade fish play, "Sounds Fishy To Me." The Baby Ruby Forever on my knee starts the much dreaded puke cough. She had done it earlier in the day, enough for even the King of Brave Orson to ask “is Ruby going to puke Mom,” but she never did puke. She hadn’t been eating much for the past couple of days and I was so worried about her that I cooked up some of the only thing she had willingly eaten that day so far. Bacon.  

Yes I had packed her a sandwich bag full of bacon and a sippy cup full of calorie doctored up orange juice (since she was also on strike from drinking her straight up half and half) to eat on the way out the door for the Real Prince Charles’ school play.

The wet harsh cough begins about 10 minutes into the performance. The back quarter of the assembled school children all turn to see who is making that terrible noise. I turn her towards me and try to be nonchalant while she makes a few more terrible sounds and the back half of the kids turn around to spot the sound. Then bam. Up comes a terrible mixture of bacon, snot, and OJ. Once. Twice. Three times a lady I’m darting out of the auditorium through to the outside doors trying to be responsible and not spill any or get anything one anyone else. You know basically smashing barf all over myself and Ruby.

I left my poor mother sitting on the bench to see at that point surely all 800 children of the school turn to witness the great puke display.

But as we have found with our kids this unfortunate experience was a necessary evil at this young age when they have terrible allergies combined with the nasty thick CF snot they can’t clear the beast on their own. They must throw it up to get it out. Yuck. Sorry to all who had to witness the upchuck. BUT I promise I had been working so hard to help her with extra vest time, inhaled mucus thinners, broncodialators, hospital grade suction machines, etc. But puke happens and this time it happened in front of the entire assembled elementary school. 

The amazing fantastic glorious news (besides of course Ruby didn’t end up hospitalized) this week was…….SHE STARTED SWALLOWING PILLS!!!!! We saw an awesome video posted by the CF Foundation on Instagram of a little 15 month old girl using her applesauce pouch to take enzymes and decided to try it with Baby Ruby Forever and it worked! She found her own way to do it (no water, no sauce, just dry swallowing and sometimes chewing) but it was really easy for her and a huge awesome milestone in the life of a Cystic Fibrosis inflicted human! I tried to catch a really good pill swallowing session (she takes 5 pills every time she eats) and ended up with some pretty hilarious footage.

We are surviving this swirling world of existence with three CF children and one non CF child and I feel like every day this week really great things happened in our family. There were several moments this week (feeling nostalgic with my baby boy finishing preschool and dodging for now the hospitalization bullet) when I wanted to put the happenings into a snow globe so I could pick them up and watch them over and over again. Oh and good news, Frank ran such a flawless day with his clinic visit and perfect treatments with all three kids morning and afternoon he said he would consider switching places with me if I could find a job that made a million dollars a year so if anyone out there is hiring I’m worth it baby!  

Sunday, May 14, 2017

The Hell Raiser and the Butt Kisser A Memoir of a Medical Mother

The IV team had unknowingly IV'ed and taped his thumb sucking hand.

We were enraged and helpless caught up in the moments after the surgery of a g-tube placement of our son. What we were told by the surgeon in regards to when he could eat after the surgery (even popsicles or drinking ice water) had not been what she had then relayed to the nurses taking care of our son post op.

See don't I look like a nice sweet butt kissing
mother? But don't forget I have a pair of hell
raising pants and I'm not afraid to put them on.
He became desperate for something to drink. He was hungry and already sore and hurting from his new “site.” He was already experiencing so much trauma with the tubes, beeping machines, an IV in the hand he sucked his thumb with so it was all boarded up and taped to the nines. We just wanted to provide the relief that we could but we were trapped in uncharted post op instructions. The fact that the surgeon had told us one thing and then either that thing was a lie, or she had just neglected to relay the message was infuriating. We begged every nurse and doctor that came into the room to ask the surgeon, double check, please we know what she told us! But to no avail. Everyone was too afraid to bother the high and mighty surgeon for such a question. They each assured us that he wasn’t dehydrated because he was hooked to an IV. This gave little relief to his dry mouth, cracked lips, and cravings that come with not eating or drinking for 30 hours. All we could do was cry with him and not eat ourselves as the tiny little boy wrapped up in tubes and hospital blankets begged to eat and we had to say no. Until nurse H came on shift.
The whole family after the surgery (baby Ruby in my stomach
yet to be born and hiding behind her older sister in this picture).

Nurse H came in bright and early the next morning and we immediately informed her of our sons plight. She immediately informed us “don’t worry I’m the kind of nurse who isn’t afraid to ask questions, I get myself into trouble quite a bit for this very thing.” She tracked down the surgeon called her, paged her, finally getting a response. Yes of course he can eat, I told you he could last night at 8, the surgeon said.

To quote Mrs. White from Clue, “flames, flames on the side of my face.” The anger! The infuriating nonsense that had happened should never had happened. My son hurting already from his new stomach hole and crying himself to sleep from hunger and thirst pains on top of it should never had happened, there was no reason for it besides a negligent surgeon who had created such a fear inducing reputation for herself to stop nurses from asking follow up questions.

Then. Then was the moment that I knew I would need to be a bit of a hell raiser like my favorite Nurse H to prevent this sort of bologna from happening to my kids again. Side note this happened at a different hospital than the one we currently attend and we will as long as we can prevent it, never go back to the other one again.

The spell that was on me of being afraid to question charts and follow protocol was broken. I would no longer bend to the will of the chart. I would get my son a cup of ice water and soup and bread dang it! Get out of my way I’m going to the cafeteria, my son is hungry and I’m feeding him. I’m not waiting for room service. Watch out. Clear the elevator you’re not going to want to ride with the crazy mumbling mother, it will be uncomfortable.  

On the other hand I continue to try with all of my heart to be as grateful and kind to the medical staff that work with my children in the hospital. Or in other words I try my darndest to be a talented butt kisser. I think it is BEYOND important to start out doing everything I can as civilly and kind as possible with extra sugar, thank you, and a cherry on top for all your efforts sir and mam’ that work with my kids and their CF, but please don’t mess around we take their comfort and care very seriously.
I'll tell you what I'm a natural rule follower. Being obedient is OK with me, but situations like this and other enlightening experiences along our medical road have helped me to see that its important to be a butt kisser that raises a little hell when the occasion calls for it.

Tuesday, May 2, 2017

I Caught The Ball of Poop, And She Helped Me Clean It Up!

I really have to give a round of applause to our CF clinic team at Phoenix Children’s Hospital. Today when we came in the nurses were waiting for us in our room to do vitals. We always get two nurses (sometimes three) since they are doing vitals for three patients at once. Its pretty nuts in there as soon as we all step in so they have to be efficient and awesome and they always are.

Today’s visit I let Charles, our non CF kid, decide if he wanted to attend the appointment or not. Usually I make him go to school but he decided he would like to go today so we were all together.

Everyone was keeping their sanity pretty well. The clinic is really good at timing all the people we have to see so that we don’t have any long lags of time when we aren’t seeing and talking to someone (social worker, pulmonologist, nutritionist, respiratory therapist, nurse) which I appreciate. The appointments have always been long because each CF person requires being seen by 5 medical professionals so multiply that by three and we’ve got 15 different appointments so it’s no wonder if takes almost 4 hours.  

Ruby had the roughest time today pawing the door and prowling around the room desperate to leave like a hungry tiger waiting for the zoo keeper with the steak. She is ready to be toilet trained but I’m putting it off until school gets out so we don’t have as many car rides. She is obsessed already with taking her diaper off and sitting on the toilet. Demanding it! So it was no surprise today when the boys kept leaving (5 times for the bathroom, because that’s normal right? NO they wanted to play in there the little turkeys) to “use the bathroom” that she began screaming “POTTY ME, MY TURN,” and tugging on her diaper.

Well I fought her off while I was talking to our charming pulmonologist who is very skilled at what she does and is the most people-iest people person doctor I have ever met. She makes me feel totally normal to have the circus happening all around me with three CF kids and today was no exception.

Ruby had pooped and it smelled awful and we were all trapped in a 10x10 room. Maelee kept saying, “MOM RUBBY POOPED” (just you know in case I hadn’t smelled it yet NEWS flash sister my nose works great I smell the RANK!). So while I am attempting not to scream at Maelee and also to casually change a poopy diaper a few feet away from another adult I respect and admire and also keep eye contact and focus on important health discussions I all of a sudden am holding a large ball of poop in my hand.

When I had wrestled Ruby to lay down on the exam table to change her diaper and began to take off her skirt I did not know she had half way taken the diaper off already, sneaky like a ninja. When I pulled her skirt down the magic moment of the solid (thank heavens) ball of poop rolled perfectly into my hand and also the mess of the rest of “it” was smeared inside of her skirt, up her legs, and on the exam table. Really a magic moment for me catching Ruby’s poop ball, with another adult whom I admire and respect watching me two feet away.

What was our charming pulmonologists reaction? She gloved up (genius!) and came over with sanitizing wipes to help me clean up the mess. She also provided some handy biohazard bags (I love this lady! She just made it into my best friend dream team) and didn’t flinch with disgust for a second during the whole messy process.

I’m impressed, pleased, and grateful for her kindness and grace in such a crappy situation (wink).

To top it off she announced with grandeur that “this is a momentous occasion! All three of your kids are in the GREEN ZONE!” Which translates into all three kids are above the 50th percentile for BMI on the CF growth chart. This news is just what we were hoping for. Orson has NEVER EVER EVER been in the green zone since birth. Momentous occasion indeed! What was my reaction to her announcement? I started chanting, “GREEN ZONE, GREEN ZONE!” and our pulmonologist joined me (I've always loved starting a good chant). It has been an ounce by ounce miracle to see Orson go from the 13th percentile to the 67th percentile over the past two years.

What will I do with this memory of holding a poop ball in my hand in front of our incredible fantastic pulmonologist? Treasure it. Definitely move it to the top of my best awkward moments and then move it to the top again of the coolest most appreciated acts of kindness I’ve seen.

Yep I’d say our CF clinic team at PCH deserves a round of applause to deal with us knuckleheads for 3 hours and 40 minutes every three months. Did I mention our respiratory therapist left the room saying he needed to go “decompress?” Ha! I love the people who have decided to continue working for the CF community even though my personal CF community is a coo coo’s nest.  
Here is the hard working pulmonologist who helps our
kids survive, while also surviving our kids, and watching
me catch balls of poop. Sounds like a country song.

We obtained some new CF specific literature for kids today! Cute stuff!
Informative too!

This is what it looks like to have a 3 hour and 40 minute long
doctors appointment for 4 kids.

My favorite APP is Jiggity because I feel like puzzles
makes it less like screen time. See how I fooled myself there?

Here is our buddy Oreo who has taken his
g-tube and rocked it like a champion. Oh and he was
thrilled to STILL be the screen saver on all the
hospital computers! He is very happy about that, you know being famous and all!

Did I mention that I neglected to bring my baby shoes to the
hospital. Yep. Gross huh? Crazy morning and we got all the
"treatments" done so I can feel good about that. Luckily although
they do not sell children's shoes at the hospital gift shop they do sell
expensive puppy dog socks so at least her feet weren't bare
on the hospital floors.

Friday, April 28, 2017

When The Fairy Godmother Came To The Gas Station

Two years ago today we were feeling very loaded down and heavy as we pulled into the gas station. We were getting ready to drive to the hospital for Orson's g-tube surgery. He had been fasting since the night before and while it was fun at first to "get the day off from eating breakfast," he was realizing it only meant he was hungry. Trying to convince a three year old that being hungry is necessary was proving difficult.

I was 7 months pregnant with my 4th child and I was trying to hold it together as much as Orson was. Daddy the gas pumper was doing his best to be cheery too. We were each existing moment to moment assuring each other things were GREAT when really all of us were on the edge of breaking down. Lot of emotions, guilt at feeling like failures at feeding our kid properly, guilt that he would have a piece of plastic installed to fix our failure and it would scar him for earth, etc. Then what may as well have been a golden carriage pulled up on the other side of our gas pump.

Out stepped Orson’s fairy godmother disguised as one of our neighbors and friend. She gathered up her sparkling flowing gown and before she could even start singing she knew just what Orson would need that day. With a wave of her wand she assured us she would make this day better.

A couple of hours later after the surgery was over and the breakdowns had all happened there it was. A stuffed to the brim brown paper sack that had been delivered to our house from Orson’s Fairy Godmother and then brought to the hospital by Orson’s Fairy Grandmother (BeBe). Inside was a note explaining that the next couple of days was going to be rough but when things got tough for Orson he could pull something out of the bag to help distract him and cheer him up. Of course there was plenty to share with the older brother and sister who would be watching and hoping for a piece of that prize in the sack as well. Heavenly Father knew that we needed Orson’s Fairy Godmother at the gas station that morning! He sent her to help us just when we needed her magic.

This memory whopped me in the head (perhaps reverberations of the magic wand waived there for us years before) this morning as I put my car in park in front of the same gas pump two years later. We’ve learned so much about Orson’s g-tube in these past two years! His litter sister even thinks she has one and tries to squirt syringes into her stomach every night when we hook Orson up. He was about 32 pounds when he started and if all goes as planned next week when we go in to weigh in on the scales that count at the hospital he should be about 44 pounds. I’m pretty sure that fireworks and a marching band will begin to play if that’s the case. He has gone from the 13th percentile on the CF growth chart to (since we last checked on February 13th clinic visit) the 47th percentile (almost out of the DANGER zone, AKA below 50th percentile). I am definitely grateful he has his g-tube and that he has the long term benefits of growing properly now to benefit the health of his lungs long term.  

Sunday, April 23, 2017

A Great Trip That Ended With a Gunman, a Dripping Baby, and a Dozen Donuts

We had just gotten back from a trip. I helped my husband carry all of our luggage into the house for it to then explode along with the kids two feet from the front door. I got the baby straight upstairs for a bath.

While I’m running the water for the bath and can hear nothing else but water filling a bathtub there are gunshots outside. Frank hears the shots fired and his natural reaction is to walk outside. Picturing our roles reversed I would have double locked the doors and have been moving furniture in front of the door for good measure, but chalk it up to male vs. female emergency response triggers I guess. ANYWAY, so Frank is a walking back into the house and all of a sudden a barefoot man comes running at him yelling. Frank moves back quickly and inside the metal security screen door while the man is yelling at Frank to help him.

Gunman: “Help me, help me, they shot my friend and they are after me! Let me in so I can hide!”

Frank: “What? I can’t help you! You might have a gun!?!”

Gunman: “I do have a gun!” (Gunman then holds up his pistol to show Frank). “I’ll leave the gun outside!” (Gunman then tosses gun into the flowerpot by our front door). “Please, please, let me in. I think they shot my friend! I think my friend is dead!”

Frank: “OK but we are calling the police.”

Gunman: “Yes, yes, please call the police!”

So back upstairs I have not finished running the water yet but my oldest kid comes in and screams at me that “Dad just let a guy with a gun in our house Mom!” Which of course causes me to triple take my listening comprehension skills. My quick breath panic mode takes over as I carry the dripping baby to the top of the stairs to find my two sons huddled together noticeably shaking.

My ears are straining to hear what Frank and the definite voice of a stranger are saying to each other. Are they angry? Are they struggling? Should I lock the kids in my bedroom and use the landline to call the cops? Is my portable house phone charged? WHO AM I KIDDING ITS NEVER CHARGED! WHAT AM I GOING TO DO? WHERE DID I PUT MY CELL PHONE? IS IT DOWNSTAIRS WITH THE GUY WITH A GUN?  Then I have two seconds of super slow motion thinking and all my questions are answered, not by Frank but by a quiet calm to my heart and clear understanding.

No, Frank is not arguing with the stranger. No, we are not in danger. Frank is helping someone who needed help. We are safe. I knew. I was given a reassurance by the Comforter just as Frank was when he let that man in our house (we would soon discuss together later that night) that we were in no danger.

My next step was to make sure there wasn’t anything I needed to do to help Frank and then to get my exhausted children to bed. I went downstairs to get the babies bottle ready for her. I walked passed the pacing frantic man who said, “I’m really sorry about this mam.” I wasn’t sure what to say back so I asked him if he wanted water or a donut (of course we had donuts we just got back from a trip of course we picked up a dozen donuts on the way home from the airport – what kind of parents do you think we are? The kind who don’t feed their kids donuts – WRONG).

The stranger assured me he didn’t want either of those things right before Frank passed him the phone to begin talking to the police.

I went back upstairs to find all three of my big kids (the baby was in my arms still) huddled on the stairs with huge eyes and tears streaming. I guaranteed them that everything was going to be fine and that they needed to proceed getting ready for bed like normal. They then assured me that there was no way that they would take a shower without me standing in the bathroom with them while there was some nut downstairs with a gun by the front door. This seemed a fair enough request so I sat in the doorway of the bathroom feeding the baby her bottle while each of my three kids progressively took showers.

By the time they were done so was the phone call with the police. Also the stranger with a gun by the front door had finished his phone call on Frank’s phone and made several calls on his own phone then stood up and announced that he guessed “the coast is clear.” He began to walk away from our house and then turned back and said, “woops almost forgot this” and reached down into the flower pot to get his gun.

Frank then utilized all the locking apparatuses on our doors and joined us upstairs to get the kids all bedded and calmed down from the crazy turn of end-of-travel events.

As Frank and I went over and over the nights details with each other that night and since, we both keep coming back to the fact that we are so grateful for the Holy Ghost that helped both of us know what to do in such chaotic moments. “As we strive to stay on the path that leads to eternal life, the Holy Ghost can guide us in our decisions and protect us from physical and spiritual danger” – (link to quote and more explanation of the Holy Ghost here). I’m grateful for the Gift of the Holy Ghost.

We haven’t yet taken the advice of some friends which is for me to make a decorative sign to hang above the flower pot which reads, “drop firearms here,” but maybe we will eventually.  

Monday, April 17, 2017

I'd Recognize That Mustache Anywhere

Our first Great Strides Team MAMA Lou
walk 2008, the whole team!
Before our chapter of the Cystic Fibrosis Foundation changed the Cystic Fibrosis Great Strides walk to Sunday we were able to participate and did so in 2008 and 2009. It was our first experience besides visiting the CF clinic in the hospital in regards to guaranteed being around others with Cystic Fibrosis.

Baby Maelee with Frank Daddy before the
Great Strides walk in 2009
When your first diagnosed one of the bullet points in the “so your kid has CF” speech is a pretty serious run down on why your CF kid can’t EVER EVER EVER be around any other person with CF. It leaves you feeling sad and kind of like other CF people are similar to the boogie man. RUN AWAY and DON’T TURN BACK! Of course the precaution is 100% health related, but it feels really strange to be warned not be around people who are your people.

So for the two years we were able to walk in the Great Strides walk they let all the participants with CF know that to allow the precaution to stay in place, avoiding others with CF, that the CF Foundation would provide camouflage visors for people with CF to wear. This would allow the CF human beings to avoid each other with discretion. 

Me in 2009 pregnant with Charles around walk time
notice huge pregnant belly below in group shot is partially hidden
from view.
In 2008 and 2009 our CF child was a tiny kid so there was no way she would keep her visor on. The first year I think I tried to somehow attach the camo visor to her stroller but it was a fail. So I spent the whole time at both walks darting my eyes around for other camouflage visor wearers ready at any second to scoop up my daughter and go running far away so we wouldn’t get their boogie man germs (I definitely know other people with CF aren’t the boogie man so hopefully none of my CF friends who read this take offense, I’m just writing how it felt to me in early diagnosis - not the medical science behind bacterial colonization in the airways).

This is our 2009 Team MAMA Lou Great Strides crew.
Notice my baby Chuck still in my belly. Almost done

Anyway fast forward about 9 years to last weeks baseball game for my son Chuck, our only non CF kid. I’m watching his game with my baby Ruby in the grass behind the dugout. I look over and see a face of a woman I recognize as another CF mom that I know from social media only. We share similar friends and follow each other. Anyway I pull up her account really quick to make sure its her then I come up with my plan on how to introduce myself without her feeling like I did at the Great Strides walk about the other camo visor wearers.

I totally play it cool the whole first inning and then when my son is up to bat I casually stand up and cheer for him then I’m like, “Oh hi social media CF mom friend its me, Kamarah.” We exchange pleasantries and I sit there for the rest of the game thinking how small of a world it is, "after all" (so they say).

Then as I take a backward glance at the sweet couple sitting behind us in the grass behind the dugout I notice a familiar mustache. My cosmetologist heart never forgets a mustache. I remember that I met that mustache and his wife two years ago at our fundraising event. The couple had approached me and we had visited about how they had two children with CF but they had passed away. It was a special moment from two years ago that I hadn’t forgotten.

Being my father’s daughter I could NOT pass up an opportunity to tell someone I remembered who they were, so as we were packing up I spoke to the woman. As unweirdly as I could I asked her if she had two children with CF. She said she did and I told her I recognized her husbands mustache from an event two years agoI'd when we had met. She says “people always recognize his mustache.” In my humble opinion, it’s a spectacular mustache and I think it’s pretty cool that people know him by it. Again we exchanged pleasantries and left for home.

I have smiled about it all week. How three CF families end up on the same 10x10 square of grass watching a coach pitch baseball game on a random Thursday night when statistics say there are only 30,000 CF people in all of the USA’s 318 million is beyond me. But even though we aren’t supposed to be together it was nice to land there anyway even if it was just for the unspoken enjoyment of myself at the time. Cheers to chance encounters with the boogie man.

PS – For anyone who is concerned my CF baby and the other CF bigger girl did not get too close, although Ruby was abnormally friendly that night. She must have sensed their sisterhood, I’d like to think so anyway.

This is Ruby last week at the baseball game.

Monday, April 10, 2017

Heavenly Arranged Friendships (Even With Orange-ish Hair)

I wasn’t even born when my mom developed her close friendship to Kathy. But they grew up together as Mom’s with children of similar ages attending church in the same building. Working alongside each other while at the same time realizing they made each other laugh the hardest. It was a magical friendship made strong with enduring trials together and happy memories together too. But what made her really legendary in my eyes was their farewell story of sharing a neighborhood and a church building.

They were both expecting babies at the same time. My mom already had two girls and a boy so she assumed she would be carrying a boy (in the 80’s before common gender ultra sounds). Kathy also was pregnant and assumed she was carrying a boy. They decided that since Kathy was moving out of state that they would cement their friendship in naming their coming baby’s the same name. Cameron.

It turns out I was a girl so my Dad switched some spelling around and added several A’s and a K and WA-LA I had in their eyes the more feminine “Kamarah” and Kathy did name her son “Cameron.” So they still got their bond just a bit different than planned.

I remember Kathy’s visits to our house over the years with great anticipation. She may not have seen my Mom in a year or two but when they got together a natural and easy friendship was theirs waiting every time. We got to skip school to go to the zoo with “Aunt Kathy” and her kids. We went to movies on holidays together. I have a very clear memory of seeing the Home Alone movies 1 and 2 with Kathy and her family during Christmas time in theatres.

To see my Mom so happy with her made me happy and made me want to find my own Kathy someday.

Unbeknownst to me my Kathy knocked on my door one day while I was “big with child” about 10 years ago to the day. She invited me to a girl’s night and the rest is history filled with kid hang outs, double dates, pool days, cheap kid movies in the summer, grilled cheese sandwiches, bean crisps, and our most anticipated event over the years Black Friday shopping. Of course we have also shared the emotional and physical trials as life as well.

Heavenly Father knows just who we need in our lives and I’m so happy I found me a Kathy. Last week I was trying to decide whether or not to attend an out of state funeral for my Dad’s biological mother. I had only met her one time so I felt silly wanting to go, but I also knew that if my Dad were still alive I would be going with him to the funeral. The pull was strong. I knew it would be a challenge to leave in the middle of the week and a LOT crazy to fly in and out in one day. When I let my friend know what I was mulling over she told me that she had no plans for the day of the funeral in question and that she would love to go with me! My jaw dropped! I could not believe it! So we are off this week for a crazy same day in same day out flight to attend a funeral together.
The first pumpkin rolling challenge. Back when I had blondish hair with a lovely orange tint. I've always liked to keep it classy. Don't want anyone to mistake me for perfect you know.  
The second pumpkin rolling challenge with "my Kathy" my hair was not orange anymore so hooray!

These two women got me through so much! We aren't neighbors anymore but what we had when we had it was heavenly.

I have a strong group of fantastic friends who inspire, motivate, and cheer me up! I thank heaven for being given female friends who understand and accept me. I’m grateful for all the Kathy’s in my life.

Sunday, April 2, 2017

Awkward Laxative Dialouge With A Sad Pharmacy Cashier

A couple of weeks ago I was at Walgreens buying 4 of the largest bottles of MiraLAX they sell. Well I guess it was the Walgreens brand of MiraLAX. Because forget about shoe sales I go nutty for a good price on Polyethylene Glycol 3350. Can I get a “what what” for osmotic laxatives people?

Back to my story, I’ve got a wheelbarrow full “Smooth LAX”, and a side order of stimulant laxatives and I’m checking out at the register. Since my Walgreens doesn’t have self check out I face one of two outcomes.

First and most desirable outcome, my cashier makes a mental decision not to say anything about my large quantity of laxative products since they see people buying all kinds of freaky things at Walgreens. Or the second outcome is, I have a cashier whose feeling chatty and we have an awkward conversation.

Lucky me door number two opens when the cashier says, “Is all of this for you? Or are you taking care of someone?”

He’s a sweet looking grandpa guy and not creepy (first impressions I could be way off on this) so I say as simple of an answer as possible. “It’s for my daughter.” Clearly I know it isn’t any of his business but he seemed sad already and worried about me a little so I didn’t want to be rude and tell him to “talk to the hand.”

“Is she sick?” He says. Well, hmmm. “Born that way,” would potentially have been a fine answer. I suppose I could have gone into the details of the Cystic Fibrosis and the complexities it plays on the digestive system but I went with. “Her pancreas doesn’t work.” Just to keep it simple and move on to my seatbelt buckling and driving home.

He remained looking very sad (maybe there were other sad customer purchases that day too poor guy) and said, “how old is your daughter.” “Nine,” I said.

Now if I was wearing this outfit while also
buying an excessive amount of laxative products.
That would have been an even better story! But
this outfit is none of your business! If I
talk about laxatives on my blog I've got
to have some mystery.
Then he stopped to hand me my receipt and said, “I know I shouldn’t say this but that just doesn’t seem fair. That she would have to do this. She’s only nine. But that’s just me. Forget it. It just doesn’t seem fair.”

All I could think at the time to tell him was, “well she’s strong,” as I walked away with my laxative stock pile.

So now since I can prepare myself for future conversations with people who are worried about the fairness of a chronic illness and even saddened by it I can be ready.

I decided it would be best to keep it 140 characters or less. Twitter style, since I don’t want to have long conversations about my children’s health challenges with strangers, but I also don’t want them to think I dwell on it not being fair, because I don’t and I don’t want my kids to do that either.

My response will now be.

Their physical trials make my kids stronger. They are lifted up by God in all they have to do. They are not alone. The love of God is real.

If my count is right I even have one character to spare! So that is it sweet grandpa Walgreen’s cashier man. There you have it in 139 characters. Everybody has problems to solve, trials to overcome, poop happens (get it with the laxatives earlier in the story, ha ha ha) but our Maker didn’t leave us to fight through alone. He helps us through.
Me and my girls on a windy T-Ball night last week
. Girls I promise I will be willing
to buy you any seemingly embarrassing thing you'll
ever need!
Now if I could petition my Walgreens for a self check out that would be cool too.

Sunday, March 26, 2017

While I Wait to Fulfill My Destiny As A Kindergarten Teacher

This was taken on a beach walk in March. I had to choose
it for this post header because I lost these amazing pants since this
picture was taken and even though I'm sad I lost these
amazing pants I'm happy this cute picture was taken
while wearing them.

My destiny career wise is in the classroom. I was given the opportunity and encouragement from my mother to do some substitute teaching while I was pregnant with Ruby and I loved it. I graduated with my BS in Elementary Education but delivered my first baby right after graduation. So the year of subbing was really my first exposure to my chosen profession besides my student teaching in 2007. So here I was 7 years later in the classroom for the first time and was pleased to find I indeed enjoyed everyday spent subbing. I loved how quickly my name spread to the teachers in the school to request for a sub. I loved being in my child’s classroom and getting to know their classmates. It was awesome. When Ruby is a teensy bit older, or perhaps not until she is in Kindergarten I will go back and sub as much as I can. Subbing is perfect because if one of the kids ever gets into the hospital (and also for the many doctors’ appointments we attend) it is a job I can easily adjust my schedule for. Best of all I really did love being in the elementary school classrooms.
I had to throw this picture of Orson in
because this hat he was obsessed with
for a week was hilarious to me.
In the meantime I feel very blessed and KNOW I'm very blessed to be able to stay home with my kids who aren’t old enough for school. It’s two for now at home. Don’t get me thinking about the five months I have left with my buddy Orson home with me. He stayed home a year longer than the older two since he has a fall birthday and missed the kinder cut off date so I’ve had that much longer to have him as a helpful, hilarious, adventurous friend to enjoy. I will be very sad for that part of our life together to be over this fall.

This is my Orson and I getting some free
birthday food this year on my birthday. He is so fun
I love being with him.
My satisfaction and enjoyment those days I subbed during my Ruby pregnancy I realized how much I missed working at something I loved, and earning money (clearly I’m never going to swim in my accrued gold in a private secure bank vault like Scrooge McDuck from subbing - but paychecks are fantastic things). So since I have never built up the courage and talent to start that Dixie Chicks cover band I always wanted to start (we’d be named Fancy Pants and we’d be amazing) I have dabbled in other things to attempt to work at something I loved while simultaneously being a stay at home Mom.
This is my favorite corner of my home. I like that
when everyone is asleep I can come here
turn on my lamp and be surrounded by colors
and pictures that I love.

With sewing and refinishing furniture a close second and third I most enjoy drawing and dream of being a children’s book author illustrator. I don’t want to write books about the sounds a car makes, but really great meaningful story books like The Cats In Krasinski Square, by Karen Hesse, or Pete and Pickles by Berkeley Breathed. I have several I have already written that I am proud of. One currently I’ve been working on for 4 years, slowly of course between feeding children and doing dishes and sidetracking with other projects. My goal is always to finish it before the end of the year and here I am year 4.

It’s a grand and lovely life to be able to stay home with my young and growing children but it can be mind numbing, monotonous, and lonely as well so it has always been important to me to have a project to work on, typically several, to help me feel like my mind and heart are used for a visible creative purpose.

A friend of mine who I had done a couple of boutique events with in the past had asked me and another friend of hers to work with her on hosting a boutique this spring. I agreed and we are getting set for the event on April 15th. I’m excited for the boutique and our group of three are hard at work trying to publicize and make it a memorable beautiful family event.

As for the kids and the CF lately I’ve had some frustrating days. Spending hours on the phone, trying to sort out the deductible nonsense. Paying in advance the hospital for Maelee’s surgery in January we thought would be a good idea, but it turns out it was a frustrating mistake as it completely screwed up many things in regards to the obnoxious and infuriating process of medical billing and meeting deductibles. Maelee attempted a GI cleanout last weekend that was supposed to provide her great relief but it turns out her excruciating day of suffering didn’t seem to make a difference at all for her chronic stomach pain. Her GI doctor is next to impossible to get into with availability in September only. Medications that have been covered in past years are coming on the uncovered list for 2017. New medications required for daily use turns out are all over the counter which is great for ease of use but terrible in regards to insurance pays nothing but we have to have them. Blah blah blah everybody has problems I know. I’m not the only one.

The point of this story is I was given perspective in the struggles I am both struggling with and also watching my family struggle through. In this month’s Ensign message for Visiting Teaching I was reminded of David Bednar’s talk from a devotional in 2001. He told the story of Nephi in the scriptures who had once again been abused by his older brothers. They had him tied up. Nephi was suffering. He prayed, “O Lord, according to my faith which is in thee, wilt thou deliver me from the hands of my brethren; yea, even give me strength that I may burst these bands with which I am bound” (1 Nephi 7:17; emphasis added).

Bednar relates, “I do not think the bands with which Nephi was bound just magically fell from his hands and wrists. Rather, I suspect he was blessed with both persistence and personal strength beyond his natural capacity, that he then “in the strength of the Lord” (Mosiah 9:17) worked and twisted and tugged on the cords, and ultimately and literally was enabled to break the bands.”

So I saw in my life that it was the same. The Cystic Fibrosis isn’t going anywhere, but our strength to work and twist the ropes of the CF is sustained each day as we ask in faith for help in prayer and act in faith that the atonement of Jesus Christ will enable and sustain us.

Sunday, March 19, 2017

When I Found Out About Her Nightmare Normal

I am continually pleased to realize periodically that I forget how strange our family is. I get wrapped up in the medicine and the treatments and the appointments and it’s just our normal. Our schedule, our routine is just what we do. If we peeked into another families day to day we’d think they were as freakish as they would think we are from seeing ours. So what I am trying to say is, it’s nice to know that we are all shockingly different from each other’s normal.

I have mentioned it before but I love the show, “Call the Midwife.” I’m a bit behind on the episodes but season 5 episode one has a quote that I loved. “first glances are for strangers and shock is just for passersby…….but if you love {your normal – my words in parenthesis not Call the Midwife}she’ll become..familiar and beautiful.”

Recently I was talking to another CF mom friend on Facebook messenger. She and I were shooting the breeze on test results and CFRD (Cystic Fibrosis Related Diabetes), and then we got on the topic of g-tubes and PARI neb cups. We were discussing our commonalities. Me thinking the whole time, “boy it sure is nice to visit with someone who knows the details already of my normal, we two are so much alike” when all of a sudden she references her cancer.

Baaaaaaaaaaack it up sister? How did I not know she had cancer? I guess it makes sense that I didn’t know its not like we see each other ever and I guess I missed tiny clues on her Facebook feed but sheesh, cancer? Terrible friend alert. I couldn’t believe it. She had been diagnosed at the beginning of 2016 with her cancer and had been dealing with the unimaginable issues that came with that all year long. Through several surgeries and painful and messy treatments she came through the cancer holding down her job and taking care of her CF child along with her other non-CF children. During this time she also had to have her CF child get a g-tube placed. She lay in the hospital bed with her child after g-tube surgery while literally still recovering from her own cancer related surgery not long before.

My thoughts were spinning. It was clear to me that she was a super human to be able to do what she had done for the past year. I couldn’t imagine the black days she must have had filled with worry, despair, and pain. But here she was a woman of faith working hard to live to take care of her family. Moments before in our conversation she said something to the effect of “I don’t know how you do it with 3 CF kids,” and I thought back to that statement shocked and feeling the same way about what she has done and is doing.

She floored me with her normal. I could not believe or imagine doing what she has had to do over the past year. I was so proud of her and grateful that she had a faith filled heart and family to get her through such a nightmare.

While we can compare notes on CF lab results, CFRD, g-tubes, and our PARI cup suppliers I will never understand what she has been through with her cancer diagnosis and treatment. What we can understand about each other though is our faith and trust in God knowing how it’s all going to work out in the end. I continue to remain grateful to have learned a tiny bit about her horrific trial and use her for inspiration to get through things that are difficult for me.

She is a saint in my book and example of someone who has taken a shocking normal and turned it into something familiar and continued to love and thrive in her life despite pain and personal anguish. Heavenly help gets her through, that’s a normal we definitely share.

Sunday, March 12, 2017

When EVERYONE Thinks You Should Feel Lucky, But All You Feel Is Sad

As a seven year old you see your sibling come home from the hospital with three new stuffed animals, a giant bag full of crafts both done and yet to do, a pile of presents and cards from hospital visitors, and all kinds of tales of hours of movie watching and laying in bed – its hard not to be super jealous. Even if you missed them and know there were other difficult, painful, or traumatic experiences at the hospital it all doesn’t matter anymore when your a kid staring at a huge pile of new “stuff” that your sister got at the hospital.

Then you start to say things like, “Oh no it’s alright I don’t need that _________ (whatever is it x, y, or z) I didn’t do anything to earn it. I don’t deserve it.” You see that since it wasn’t her birthday or any holiday that she must have “earned” all those cool presents from being sick. It make sense to you so you go on thinking that it sure must be awesome to be sick enough to go to the hospital.

On top of that you wake up each morning and your day (breakfast, going to school) can’t move forward until all the medical treatments are done for your siblings. Your Mom is fussing over treatments and setting up machines and putting together piles of pills but none of it is for you. You’re different. It seems like a rip off. It seems like you’re not as important. It seems like you’re left out. It seems like for whatever reason you are holding the short end of the stick all the time.

Your emotions erupt from all the confusion. You’re in a family where it seems like you don’t belong at all. You’re the only kid of four who doesn’t have Cystic Fibrosis and your sad and angry about that.
So as the parents of the 7 year old who starts to say things like “No I don’t need that ________(whatever it is x, y, or z) I didn’t do anything to earn it. I don’t deserve it.” Your heart hurts for him and you try extra hard to show him love, encouragement, and to include him in as many ways as possible.
One of the ways we found to show some special love to our non-CF son is take him to Build A Bear. This was an obvious choice after Maelee got out of her November 2016 hospital stay. She had received a very special PICC line Build A Bear from Child Life at Phoenix Children’s Hospital that our son admired greatly. Also his brother had received a very special G-Tube Build A Bear from The Goodman Family Foundation right before he got his G-tube in April of 2015. Since our kids are still in the age and mind set where stuffed animals are golden gifts, taking Charles to Build A Bear was a perfect way to help him feel included.
As I heard myself saying, “Charles we are going to take you to make your own Build A Bear,” as he was admiring Maelee’s PICC line bear I choked a bit on the words because I knew that Build A Bear is expensive! But in the end it was so worth it and fun to watch Charles pick out and make his bear.
Another way that we were able to find help for Charles is through a professional therapist. It continues to be special for him to get to go and talk to her all by himself. I am grateful that there was a grant available to help CF patients and their families through professional therapy. The therapist has helped me as well to know how to accentuate the similarities between Charles and his siblings and the importance of one on one time for him.
Our son is in a tough place. He carries a lot on his shoulders naturally so then to add the weight of being the only one who doesn’t have Cystic Fibrosis and be swimming in a world of its constant demands on your family tends to result in a heavy and serious personality. However, the seriousness suits him and benefits him greatly. Plus it makes the times when he lets loose and is uninhibited even more special for everyone to enjoy. We are so proud of his kind and loving heart and his steadfastness.
As he grows up and more adults and peers talk to him and get to know his situation surely he’ll begin to hear things like, “your so lucky you don’t have Cystic Fibrsosis.” What they won’t understand is that he has never felt “lucky” about not having CF. Confused, angry, sad, jealous, and lonely would be more accurate.
What is most important though isn’t our sons Build A Bear or even professional therapy, it is his faith in God’s plan for him. Dieter Uchtdorf said, “There may be some among you who feel darkness encroaching upon you. You may feel burdened by worry, fear, or doubt. To you and to all of us, I repeat a wonderful and certain truth: God’s light is real. It is available to all! It gives life to all things (see D&C 88:11–13). It has the power to soften the sting of the deepest wound. It can be a healing balm for the loneliness and sickness of our souls. In the furrows of despair, it can plant the seeds of a brighter hope. It can enlighten the deepest valleys of sorrow. It can illuminate the path before us and lead us through the darkest night into the promise of a new dawn.”
I am so grateful to be a woman who knows Christ is my Savior. This knowledge and the knowledge that I am a child of God is what helps me each day in my motherhood and the details of living.

Charles starting his bear building adventure.

The Magical Making of "Spike" the bear.

Outside our friendly neighborhood Build A Bear
(ka ching ka ching)

Here they are posing at PCH's Ronald McDonald house entrance
on the way back to the car after a therapy appointment. Sometimes
he gets to go with me alone and sometimes (on the extra fun days)
we get to take EVERYONE with us.