Success!

From my last post, many people have expressed interest in helping my friend get a laptop for the hospital. An anonymous donor delivered a brand new beautiful laptop to my house today and its been delivered again to my friend! This offer of help was given before 7:30am this morning! What an exciting day and a great surprise and tender mercy! Lots of love in the world, lots of goodness! Thankful I get to be around such generosity and kindness!

Stuck In the Medical Clink, Only the Beggining They Say

It’s pouring rain and the time of day when everyone should have their headlights on but it isn’t all the way dark yet. As I turn onto the 202 to start the 23 mile drive to the hospital I think surely this rain is going to stop. But the whole way to the hospital its pouring rain, hard big drops too, very very uncommon for where we live.

My nine year old is in the back seat wound tighter than a spring awaiting her first admittance to the hospital that she can remember. She has had low lung function for the past few months and has sounded “coarse” and “wheezy” so the pulmonologist at our CF clinic has prescribed hospital IV’s and observation. I’m trying to stay calm but the rain and the freeway and car that I am not used to driving in combo with the fast approaching darkness has me noticeable tense. Maelee the nine year old suggests we say a prayer and I agree and that she should say it. We just said one with Dad and the boys and baby Ruby before we left but why not it can only help to say another. She finishes the prayer and is quiet for just a minute then she says, “Mom I think we will be doing a lot of praying these next few days.”

She’s right! A few hours earlier we had just got the cast for our one year old’s broken arm and literally while I was in the casting appointment the “beds” department of the hospital called to say that Maelee’s bed was ready. So we hurry and pack our bags and wait for Dad to come home to give her a Priesthood blessing with a friend and neighbors help and we fly off in the most gas friendly car we have to the hospital.

Everything is new to Maelee. The bed is super cool and moves. Her hospital room is big enough for two people therefore has two televisions and she is super pumped because she thinks she may be able to find a way to watch both of them at once.

Then the nurses come to take her to the “procedure room.” They have a separate room for the “procedures” so the kids have nothing bad happen in the rooms they are staying in. Maelee is incredibly worried for the IV placement. Desperately hoping to avoid 8 nurses laying on top of Maelee while she screams and thrashes I pull out all my Mom ideas. “Hey Maelee want to shop for ankle boots on my phone?” It works. She is so distracted shopping for the boots she has already asked to get for Christmas that the two nurses get the IV in and she’s ready to roll. They warn her though that in the morning the IV team will put a longer lasting IV in called a PICC line. They explain it to her as best they can, something about a long tube being inside of her arm that they put medicine in. Unbeknownst to myself and the nurses Maelee’s interpretation of getting a PICC line means they are going to have to slice open her arm to put the tube in.

After finally settling down after a ham and cheese lunchable and oreo and milk dinner from the vending machine since the cafeteria was closed she finally falls asleep 4 hours past her bedtime.

Maelee dreamt of another girl in a hospital bed beside her. The other girl raised up in her hospital bed to show that she had a giant hole in her stomach. Maelee looked around her room in the dream after seeing this shocking hole in the girl next to her and started getting attacked by doctors and nurses with needles.

Right about that time a PCT came in to poke Maelee’s finger for a blood sugar check. It was 2am. Maelee understandably lost it. I did what I could to help the nurses get the blood and eventually after lots of sadness Maelee was able to again fall asleep mumbling even as she was sleeping about ripping out her IV and going home between sobs about a PICC line. She still thinks her arm is getting sliced open the next day.

After a late in the afternoon PICC line placement (under full anesthesia due to the fight she gave the nurses the night before) things began to fall into line better. Then it just became a waiting and talking game. The mornings especially brought lots of talking to a pulmonologist, a team of 5 pediatricians, and right behind them a team of 5 residents, respiratory therapist, her CPT, her nurse several times, cleaning people, food deliveries. A typical grand central station with no privacy and with large amounts of interruption. Throughout her 6 night stay a sputum culture had been taken that first night and was busy growing in a lab deep in the depths of the hospital basement (we’ve heard its pretty spooky down there for reals). This culture and more testing, another lung function test, and finally a sinus and chest scan would determine if Maelee could go home to finish her IV treatment and for how long.

So she learned a ton about what it means to have CF and that she was been extremely blessed to not to have had to go in for something like this sooner. She goes from feeling super upbeat to feeling like she did something wrong and its her “fault” for being in the hospital. Frank and I and my Mom all worked together to take care of the kids at home and Maelee in the hospital. Someone always slept overnight with her and someone was always there with her during the day. The only breaks she had in one of us not being in there with her was some afternoons I or Frank would drive home to switch the car out for the other person since one of our cars gets considerably better gas mileage than the other. It was exhausting but not a scary trip (besides Maelee’s horrible dream that first night) to the hospital. It was refreshing to have a “big kid” in the hospital and not a little baby, just because it was easier to communicate and understand each other and to endure the experience as a nine year old versus a tiny baby you can’t bear to turn away from for a second.

She had a couple of mom friends bring their kids to come visit her. One night she had two girlfriends and one of their mom’s eat dinner with her. She LOVED that. Another night she had some girlfriends come and do crafts and play games with her. She even had her carpool friends come and before long they were all playing hide and seek. Its surprising how many places you can find to hide in a hospital room.

It was only six nights which is a very short CF hospital stay so she/we received lots of blessings on this visit. She came home with the PICC line and we will have several check ups and check ins as we navigate the next couple of weeks of four vests a day (2 hours a day) and extra meds and doing the IV’s at home in tandem with Orson’s g-tube feeds at night it may get a little hairy but the first night went well.

1:00am – Orson’s G-tube feed finishes and he gets unhooked and taken to the bathroom

4:00am – Maelee has another IV

6:30am – 1^st vest and breathing treatments

12:00pm – IV and 2^nd vest treatment

3:00pm – 3^rd vest treatment and breathing treatments

7:00pm – 4^th vest and Orson gest set up and hooked up for his g-tube feed

8:00pm to 9:30pm - Night IV

I had some misinformation in my head about IV’s and once that was cleared up we were taught from a very skilled home IV nurse on how to do them for Maelee and it’s manageable. Maelee will be missing school while she has the PICC and while she needs to be doing these extra vest treatments, to both protect the PICC from harm and from germs, and to provide ease of treatments.

The message of all the care providers across the board during this experience was, get used to this, its only the beginning. I feel less angry now when I hear that. I still want to tell everyone who says it, “maybe you don’t know us, but that isn’t something we are going to accept as normal.” I don’t tell them that but I think it and feel it. My heart still is shocked when my babies are in the medical clink.

What kills me though after leaving the hospital and having the separation of family that we had only a tiny taste of, is the other kids who didn’t get to leave and families who are still in a state of constant pulling as they manage the home front and the hospital front. I wish I could help them. I wish I could say, hey I’m not a nurse but I am a mom so let me sit with your baby for a few minutes while you go get some ice downstairs. Or walk with them down the halls during the many transports to the different places your kid needs wheeled to. Or give them a pep talk as they walk from the car into the hospital.

One friend we know personally has been at PCH for three months. Our 6 six night stay dealing with what we have been assured will become a multiple time a year event for us indefinitely, is nothing compared to sitting there with your nerves on complete edge and your heart shredded as you wait and watch your child receive and respond to medication and procedures for over 90 days. She has been there with her son who is fighting through Leukemia during the day and then her husband comes to be with him at night. I wish I knew exactly what she needed to help her feel a small bit or normalcy or comfort while she is in the hospital room with her son. One tiny idea that I got was that she would benefit greatly from her own laptop. Her husband uses their only laptop for work purposes so he needs to have it with him. If she had one to use while she was at the hospital with her son it would provide a greater source or freedom for her mentally to wade through her personal sea of worry and waiting. She could more easily journal, make photo books for her family and son to document this life journey they are on. So my new goal is to try to as quickly as possible find a way to get this friend a new laptop. I’m formulating a plan and unlike Mike Wasowski on Monsters Inc, I will not be “using mainly spoons” but plan on making some phone calls and doing some research to see if I can find a company or organization who can donate a laptop to this mother.

This is ham and cheese lunchable vending machine night, before the nightmare

Right before she went under for the PICC placement

The Wall of Love

First scan experience, I was told but never realized that this machine uses 100 times the amount of radiation as an x-ray machine so that is why Maelee won't be getting these done very often per our doc

The Dead Rabbit and the Dead Water Heater

I was driving home from school late one night. I hated the drive home from school. It was long with lots of freeway switching and stretched my nerves to capacity each time I drove it multiple times a week. The drive also gave me time alone and to think which lately was all sad grief filled thoughts. My Dad had died a few weeks before and the last time I ever talked to him was a phone call on the drive home from school so I relived the phone call every night which was both happy (since it was a great conversation) and also sad (because it was the last time I would hear his voice on earth). Then the rabbit my husband had gotten me to cheer my up after Dad died had died earlier in the same week of my drive home. It was a very dramatic rabbit death filled with a panic filled trip to the pet store for potential life saving rabbit supplies but in the end the rabbit died too. I was definitely way down deep in a low point.

So when I stepped into the apartment to hear the announcement from my husband that I had a special delivery I was curious. It was a very glamorous box of flowers. I hadn’t ever seen flowers be delivered in boxes except for in old black and white movies. They were extremely beautiful and simply elegant white lilies. I was shocked and unsure why I would get something like this delivered. The card was brief, “Our deepest sympothies,” and then it read three women’s names. I knew woman with the names it read but none of them had any connection to each other. I began to think of who in the world would spend clearly a wad of cash of these expensive boxed lilies. I thought of all the women I went to church with, worked with, and attended school with. I thought of old high school friends. I thought of potentially distant cousins on my Dad’s side of the family but couldn’t have guessed how they would have gotten my address and why they would have picked me out of the six kids in my family to send the flowers to. I thought of maybe the three female names being some sort of code. Maybe they spelled sympathy incorrectly with o “sympothy” on purpose to provide some sort of clue. I was all over the place with my theories, even of course the guilt theory of “I should know who these three women are!”

I still have no idea who sent the flowers but it turned me around. The flowers made me smile and feel happy and special and loved and especially got me thinking happy thoughts and steered me away from the grief puddle I kept walking through every night on the way home from school. I still think of my flower delivery and wonder who it could have been and hope they know it was appreciated.

Last week the three woman on the card came to mind again. I had another anonymous flower delivery. This time they were left by my front door. It had been a crazy day. Our water heater had broken. So as an extension of that was first thing in the morning emptying out the storage closet that the water heater is housed in. Since this is our only storage space it’s like Pandora’s box and not in the good cool music way. Oh and the plumber who was sincerely super man awesome to come so quick got to watch me rushing to empty the closet out which at the time felt similar to being on one of those “what not to wear” episodes when the hosts completely insult every piece of clothing you have. I wanted to explain everything in the closet, “Yeah we really had an ant problem one year that’s why we have a couple of half used bug sprays….Hey let me tell you the story behind this PVC pipe and random wood pieces it’s a good story you’re going to laugh……Yeah I keep my tamale pot outside! Where do you keep yours?”

After being exposed as the messy and random outside storage closet human being that I am, there was a poop problem that day too. An unexpected amount of kid poop needed cleaned up right after the storage closet incident. THEN I had forgotten that it was happening that day but I had already planned on and agreed to help some friends with something. So when the water heater forced me to expose my closet to a stranger and landed simultaneously on the poop storm witnessed by unsuspecting friends….well it was touch and go for a while.

Then the plumber knocked on the back door. He said that my water heater was 17 years old. He said that similar water heaters to mine are lucky to make it to 7 years. Really?

I was so proud! What a hard working water heater! We have put an increasing load of usage pressure on that big guy over the past 10 years and ALL of those years were miraculous. He never gave up for 10 years! Other water heaters just like him gave up, but not him. He washed our clothes and shined up the baby bottles, nebulizers, and dishes night after night for 10 years past his prime without complaint. How many glorious hot showers had we enjoyed on that wonderful amazing miraculous water heater! The poop storm didn’t matter anymore. The huge mess of my emptied out storage closet in the backyard didn’t matter anymore. That water heater was my new hero! I had been sitting on a miracle for 10 years and didn’t even know it. I began to wonder about all of the other blessings I hadn’t realized were mine but continued to enjoy unawares. What other appliances and pipes should have broken ages ago but are still dutifully performing for our family without us taking notice? My eyes were opened and my attitude was changed. There are so many blessings from God that we don't even see. 

Then a few hours later my husband walked in from work and said, “why is there a bouquet of flowers outside the door?” Could the day have gotten any better after the water heater miracle being unearthed? Sure thing! Some nice person must have known. They must have known the worries in our heart over broken water heaters, lung function tests, lack of weight gain, and poop storms. So they came and left something beautiful by the door. Now again my mind races from person to person in my life on who it could have been. Theories are being conspiracied about this nice person and the flowers they left. But don’t worry sneaky sneaker between your kindness and our newfound hero the 1999 water heater we are unstoppable.

Here is a picture of my hero the water heater and me with the mystery bouquet. I think I will have to write some sort of clever rhyming poem about the “water heater that could” and add him to the wall of family pictures. I really am so proud of him.

Look at this guy! Isn't he beautiful! What a hard worker!

Instead of the messy kitchen in the background you could think, whoa a 50 pound bag of flour almost used up and recipe books balanced on her oven hood, that girl is a baker even in her 4x4 kitchen!

Breakfast? Yes! But First......

The alarm goes off. I wake up instantly refreshed from a great night full of peaceful sleep. I stretch while I get on my t-shirt and stretchy pants for my bike ride. I eat a banana and drink a 16 ounce glass of room temperature water so it absorbs into my freshly awaked body faster. I ride my bike outside for 30 minutes enjoying the wind in my hair and the fresh morning air that not many others have breathed yet. While I ride I listen to inspirational and fortitude building words from great spiritual leaders through my head phones. I roll back to the front door of my house to find my husband dressed sharply for a day at the office with a lovingly packed lunch that I prepared the night before under his arm. He is waiting to say our morning prayer before he leaves for work. With a prayer and a kiss he is on his way. I wash my face and great dressed in one of my favorite blouses and jeans. I sort through my favorite earrings for the extra punch of awesome to my ensemble. I apply eye liner, mascara, and lip stick and finish it all off with a face flattering up-do, the kind I like that once I do it in the morning doesn’t move for the rest of the day. My “wake up the kids” alarm goes off. I lovingly go into each of their rooms and wrap my arms around them to wake them up. Each kid hops up, immediately makes their bed, gets dressed and goes to the family room to start our morning routine.

False.

The alarm goes off. I’m exhausted because there was a really good book I was finishing last night and I stayed up way too late reading it. I hurry and grab my phone to see what time it is and how much longer I can stall before one of the kids wakes up. My husband has already left for the day. I think it was my turn to pray. I think I said the prayer after he politely nudged my leg to say goodbye. He left on time, very skilled in his habits despite my inability to become so. I have talked myself out of getting up earlier than the kids for the past 9 years because any time I have done so it seems any noise I make (I have witnessed or maybe imagined even the lifting of my blanket off my body being the noise that woke them up) will wake them up causing my day to start even earlier than normal which would sure be a bummer. Soon I hear my name being moaned resembling I think the sound of a hungry baby calf in pasture, “MOOOOOOOOAAAAM.” They have all mastered this morning time moan. Maybe they get together and practice when I’m not paying attention. I go get the first kid out of bed and tell them to please quietly get dressed because the others are sleeping still. They get dressed and them come lay on my bed while I am trying to pretend that I am right back into really great sleep already while I listen to them ask me repeatedly why I’m not up yet and if they can do this or that thing this very second. Minutes later the other kids are all up, except thankfully the baby. So I whisper warn which escalates into a whisper yell at the other kids to be quiet because what we are about to do downstairs in the living room will be a lot easier if the baby stays asleep through the start of it at least.

Make up, yes I will squeeze it in at some point later. I’m a nicer mom with eyeliner on! Exercise? I’m pretty sure that folding clothes and chasing kids will once again be my exercise. Hey maybe I will even vacuum today because that really can get vigorous. I admire gym moms, cheer for them even, but it’s just not me. My husband’s lunch is usually packed by himself. I’m grateful he loves me anyway even though it’s really a treat if I pack his lunch once or twice a week.

Is my own personal reality juvenile, yes! Should I be a big girl and get out of bed with my husband in the morning and start my day properly, yes! But hey nobody’s perfect and if I wasn’t so good at picking books I like to read then maybe I would sleep more. But lately I’m on this roll of fantastic books and if its not staying up late reading books it would be staying up writing, or drawing, or painting, or sewing or whatever it is I want to do at night after all is quiet on my family front and I can throw caution to the wind and spend my time on something besides dishes, diapers, medicine administrator and crumb patrol. I do see the bad habits I need to break, but I haven't done it yet!

It’s funny though because even though I could do WAY WAY WAY better with my personal morning habits we have mastered the art of cramming all of our treatments into the typical hour and a half from when we wake up to when we send the school kids off to school. We literally hit the ground running and when all is said and done I’m proud of what we get done in regards to our morning accomplishments. I recently made a list of just our morning meds to help me feel more collected when I do get around to convincing myself to start the day. I have a lot to improve on, but feel grateful for the chance to try harder to be better tomorrow.

A Tribute to Butter Cookies

I got a phone call from my kids pulmonologist a couple of weeks ago. When I see it’s a phone number from the hospital after we’ve had a clinic visit and I’m waiting for test results my senses sharpen and I get tense swiping to answer the call. Then when it’s actually one of our doctors on the other end of the line and not a nurse or other office staff delivering the news I know I need to find a chair and sit down. It’s always worse when the doctor calls in person. I appreciate them calling in person so much and actually feel honored (a little star struck really because I have loved and respected all of our pulmonologists to date) that they would take that time to make the call themselves, but I’ve learned to brace myself.

Anyway it turns out that Orson and Ruby both turned up with pseudomonas. It’s not the first time for Orson, but it is for Ruby and its not good news for either. Pseudomonas is a bacteria that tends to colonize in CF lungs and become resistant to treatments causing big damage issues long and short term. What it means for now is two courses of antibiotics for both kids. One is a semi-typical oral antibiotic and the other is a beastly thing that takes 30 – 35 minutes a day and lasts for 28 days. I am head to toe grateful for the beastly 28 day antibiotic but I allowed the news of it to clothesline me emotionally, then I let the reality of it smash my confidence.

It’s like I was a successful manager of a business one day, knowing when and how to successfully administer all treatments and meds throughout the day completing my 78 (exaggerating on the number or guessing at least) step dance routine with a graceful bow at the end of the day. Then with the news and the new blend of meds and treatment additions its like I was back to my first day on the job my manager title ripped from my name badge and I was still expected to do the 78 steps but add in 15 more intermittently and my trainer was out sick so I was on my own. Good luck figuring out that analogy, but the point of it was I felt like a failure.

So what did I do? Take it day by day. Pray. Make time for self contemplation and encouraging. I soon saw again the truth in my conversation I had with a veteran CF mom 9 years ago that “the treatments seem like a lot but soon they become normal and you don’t even think about it.” Really right now the tricky part is getting all of Ruby’s stuff done. The older two are extremely compliant and capable to doing their treatments with little assistance from me. I change meds out in their nebulizer cups but they can sit through treatments on their own.

Ruby however since she is at the adorable age of one does not sit for anything, especially for 30 minutes of inhaled medication and vests twice a day. It’s just one of those things where at this point in her life we go to battle during treatments. Its similar to a three stooges episode. I am Larry and she is Curly. I go to grab her and get her 4 inhaled puffs in from her chamber and she somehow wrestles away from me between each one. Making a 4 minute process into a 10. Then while I am setting up her vest and gathering the medications for that she is dismantling the vest and hiding the fish mask to her nebulizer cup. When I finally time the treatments right (on a good day) with a sleepy time for her and gather up all the meds she decides that she can pull the top piece out of her nebulizer cup making it non-functioning 20 times during her treatments. She watches me (although surely she is less diabolical than it seems to me during our twice a day battle) for any chance to flip the hoses off her vest so that I have to readjust my fragile balanced hold on her body, the neb cup filled with expensive lifesaving liquid easily spilled mandatory medicine to now bend over and retrieve the popped vest hose and again attach it.

The bright side of all of it is that it will pass. Soon she will be doing treatments like a boss with her other siblings all lined up in a row on the couch. But for now until it does pass and we are still acting out a Three Stooges episode twice a day I have (along with prayer and spiritual motivation) Danish butter cookies. I am aware that my love for them is unhealthy. I like to think that the calories burned during my core and stress work out balancing the baby and the medicine and the vest shaking us through the whole thing makes up for the calories consumed in the cookies. I’m no nutritionist, but I will tell you that these Costco Kelsen Danish Butter Cookies have some sort of special ingredient on my ability to face the day and make it happen. I think the ingredient is butter, or maybe its sugar. Either way thank you Danish Butter Cookies, each and every one of you!

My tribute to Danish Butter Cookies.

So CUTE! So not into medicine marathons! My neither sister, me neither!

Please Help Me To Smell the Bacon and Not to Eat It

What do you get when you put a one year old, a 4 year old, and a 7 year old in a 10x10 room for three hours with a toxic medical waste trashcan, an adjustable medical exam table equipped with stirrups, and a spiny doctors stool?

Easy it’s a CF Clinic visit with the Adams family!

Man I wish the punch line to that joke was funnier. I will have to keep thinking on a better closer for that one. I should probably work something into the punch line about the stirrups and the spiny doctors stool because the kids each feel the need to play with these at some point during the three hours in the room and each at the most awkward time possible.

I’ll be honest the appointments are mayhem, but also miraculous in many ways and we have an amazing support team of medical professionals who are sincere and capable.

Ruby was sounding good and growing well. She has a nice “curve” to her growth chart. She got lots of compliments on being Maelee’s twin.

We walked away with some weight loss for Orson since last visit. Not unexpected from the three week long battle with the stomach flu we had along with the rest of the state of Arizona in September. Stomach flu isn’t fun for anyone of course, but especially for someone who does enteral feeding. Poor guy, but he is on the upswing so away we go back to “two cans a night” and as much half and half as we can convince him to drink with his teeny tiny portioned meals and snacks (and yes we tried heavy whipping cream but that didn’t work).

Maelee was confirmed at this appointment with having asthma along with CF which isn’t uncommon and just requires some increase of diligence and awareness and medication changes. The thumbs down news is that she is on hospital watch again because she had poor scores on her lung function test along with having lungs that are “wheezy and coarse” sounding. The double thumbs down news is that her weight is also slightly down. It’s all interrelated with the lung function because if it takes more energy to breath more calories are burned just by breathing so your weight goes down and losing weight is bad news for lung function. It’s a relentless cycle of weight loss and lung function.  

She was prescribed a new calorie goal of 2,700 calories a day which seems like a fun thing to do, but it can get tedious and stressful with everyone is bothering you to eat and creates a unique kind of pressure opposite to what the world around you is pressuring you to do. Then there is the pressure in her mind of the potential of a IV antibiotic hospital stay. Which hasn’t happened to her yet but seems inevitable since this isn’t the first time she has had low lung function and been on hospital watch in the past year.

So our goal is to beef her up and clean her lungs out over the next month and then get re-tested to see how she does and if she will be admitted for the “CF clean out” along with IV antibiotics.

What am I doing to help her? We go on more walks and bike rides to get her lungs pumping since ironically while it burns calories its also the best way to have healthy lungs, exercise I mean. I am also taking breakfast to a whole new level and trying to be even more involved (what I really mean is I’m super bossy) with after school snacks and dinners packed with a caloric punch. While my favorite job as a mother is the Chief Encouraging Officer I do get a little tired of smelling all the bacon every morning and resisting the urge to also meet the 2,700 calorie goal right along with her (blast it all to the early holiday shipment of Danish Butter Cookies at Costco). And boy if I think I am at the grocery store and Costco a lot now I just think back to the last handful of Mom’s of teens with CF I met who have kids that are prescribed 10,000 calories a day to maintain weight. Oh yes that’s right the bacon party has only just begun.

Just a little snap shot of a brain storming grocery trip the day after our clinic visit. Getting ingredients for high calorie desserts and also some other stuff to hopefully healthily get calories as much as possible. Thank heavens that everyone in our house can have dairy. We would literally be up against a brick wall without the calories the kids get from dairy!!!!!!

The Closest We Get to Politics

If any of my kids become political science majors it will not be from any influence I may have bestowed upon them. But once and a while we have conversations like this.

My "Konvert" Journey

I am typically a fiction reader and not a self help book reader but this book, "The Life Changing Magic of Tidying Up," came on respected friend recommendation so I gave it a shot. I ended up being so happy that I read Marie Kondo’s book! I feel it is safe to say I am a “Konvert” to her methods. Some of her ideas worked amazingly well for me, and some didn’t work with my lifestyle. But the overall message of simply treating every object in my home with gratitude and surrounding myself with things I love and think are beautiful has been a useful compass for me.

I started as instructed with my own clothes to get honed in with my ability to know what “sparked joy” and what did not. Once I got going it was amazing what I got rid of. I ended up completely emptying out my closet (don’t be too impressed it is a pretty tiny closet) and have nothing I wear hanging on a hanger anymore. It is all in my dresser drawers (except 3 jackets/coats that are laying folded in a bin) folded as precisely as can be (I kind of get a kick out of doing it the Marie Kondo way now). Every week when I do laundry I know exactly where to put everything that’s mine and have nothing hanging out or without a designated place which in the past wasn’t the case. I feel like my own possessions are nicely in order. I also feel like I know better my sense of style which in all honesty was often guided by what I found for super cheap when I happened to have some money to buy clothes. Now I feel like I know better what I feel good in and what I love to wear.

When it came to the other steps in the Kon Marie process I would often hit stumbling blocks because I share my home with five other people. But as I focused on my own possessions and my own space I found that I could really create orderly and enjoyable spaces that I didn’t have for myself before.

Marie Kondo emphasizes doing one massive clean out correctly once and not having to ever do it again – which I think is a fantastic concept – but with a family that is ebbing and flowing like mine is at this time it isn’t realistic to think that I will be able to do that with success. I can and did however throw away and organize and donate sacks and sacks of items. My kids closets for example which used to be filled with randomness are now completely empty, literally except a few hanging clothes. The kids love it because it is another space for them to use to read and play in and I love it because it looks a million times better than it did.

This book appealed to me because I have been trying to solve the puzzle of organization and storage in my home for the past 10 years with increasing speed and urgency as each of my four kids have been born into the home we thought would only hold one or two kids at most. I have consistently attempted to make our space work for our family and really feel like I have made a big difference through my own efforts, but having this book as encouragement and inspiration helped me think through the process differently than I had before creating a new level of success.  

I wasn't sure if I would be able to find a picture of a room to model mine after but when I saw this one I knew it was it! I found the picture of the room I wanted to draw inspiration from in the book, “Style Me Vintage Home,” by Keeley Harris.

I loved the colors and the comfort in the picture and although its just a snapshot of a corner of a room I am inspired by the details. The rag rug, the corner of the brick fireplace, the amazing wallpaper. The whole thing is amazing, I love it!

One thing that came from my implementation of the ideas in the book that I did not anticipate was what is happening to my front room. I have never been afraid to paint crazy colors and murals on my walls, which I was always very proud of before, but as I was going through the Kon Marie method in my home (and also figuring out what I really loved in my heart and mind) I suddenly wanted to cover up my dizzying colors and schemes and round things out. My husband and kids I think were slightly alarmed when I painted over everything. My kids all told me that they missed my tree mural, which I think I will re-do now since they all have remarked how disappointed they are that its gone (who knew they were so attached to it? Not me!). It is taking me a while to bring to pass the makeover in the front room, but I am really liking it so far. It’s funny though because since I have painted I don’t feel like we ever go into that room anymore, which is really weird because it’s a large chunk of our living space. I think it is because it’s not finished yet and I don’t think it feels right anymore to anyone.

Honestly I loved the idea of throwing myself into this process to benefit not only my home but also my own mind and heart. I felt a little like the character Julia Roberts played in the movie “Runaway Bride” when she try’s all the different eggs to see which kind she really likes and not just because they were the eggs her boyfriend at the time liked. It was a clarifying process for me that helped me see in regards to my own possessions what I derived joy from and what I had impulsively obtained or had grown apart from. I do feel like I have gained a better focus in my life. I am still not done. I am not sure how long it will take me. Marie Kondo says the average amount of time it takes is 6 months and I started in June so I still have three months left to hit the average. In the meantime I will press forward and enjoy the benefits of what has already happened from my efforts and patiently try to complete the rest. The following quotes from the books are some of my favorites.

“Attachment to the past and fears concerning the future not only govern the way you select the things you own but also represent the criteria by which you make choices in every aspect of your life, including your relationships with people and your job.” – Marie Kondo

“The process of facing and selecting our possessions can be quite painful. It forces us to confront our imperfections and inadequacies and the foolish choices we made in the past.” - Marie Kondo

“To truly cherish the things that are important to you, you must first discard those that have outlived their purpose. And if you no longer need them, then that is neither wasteful nor shameful. Can you truthfully say that you treasure something buried so deeply in a cupboard or drawer that you have forgotten its existence?” – Marie Kondo

“The inside of a house or apartment after decluttering has much in common with a Shinto shrine... a place where there are no unnecessary things, and our thoughts become clear.” –Marie Kondo

My Gospel Standards Coloring Book PDF for FREE

I finally took the time to figure out how to link to a PDF from my blog. Here is a link to "My Gospel Standards Coloring Book." This is something that I enjoyed doing so much I went through and re-did it a second time to improve it. I am excited to share it and hope that kids will enjoy it or that it can be used for teaching opportunities.

I love to hand letter and illustrate so much and have so many project ideas! So hopefully I won't take so long to complete the next one to share that I forget how to upload a PDF link in the mean time. I know that this is such a miniscule step but I am seriously flexing my "tech" muscles right now.

Bring on the Puke Cough

I had to jinx it and brag to a friend today that I didn’t clean up any puke today, so of course it didn't last. But at least the all to repeated experience this time of year inspired a lyric to a parody song to “Stand By You.”

Far better than a parody song is a husband who brings you towels to help mop up the puke mess and then folds the laundry while you do the dishes. Nice, very nice.

P.S. - Maybe someday I will think of the rest of the lyrics to this parody song. But in the mean time doesn't Frank look strong in this comic? I may have gotten the arm angle wrong on him a bit, but he definitely looks like a strong cartoon Frank, with no lipstick.

Culturally Unaccepted Winner : Sanity Choices {Avoid the Beans}

Because this happened at our house and it made me laugh.

Hoping for Fearlessly Extraordinary

So since one of my duties as the mom of this household is to decide what is a "Sunday movie" and what is not we all watched the original stage-to-home-movie production of Saturday's Warrior this weekend. No sooner had we started it had we all learned the lyrics to and were singing "Humble Way."

Although written for its humor I loved the confidence and power that the song brought out in the kids and thought it was the perfect mantra for the first day of school tomorrow. So here is a Mother's hope that her children will smile their faces off and remember to be "fearlessly extraordinary." Just like those two missionaries in Saturday's Warrior.

P.S. - I have seen the trailer for the new Saturday's Warrior but haven't seen it yet. I am sure it will be fabulous, but can anyone ever top the incredible hair of the original stage-to-home-movie experience?

Why Swim When You Can...Do Anything Else?

There are many things in our family that are not options. Most of those things are medically related items. Even Charles, who does not have the necessity for a medically induced regimen is effected by these things that are mandatory items of our day. The day comes to a halt for everyone to get medicine done frequently, really it happens all day and it can be very frustrating, especially for the kids.

 Orson and Charles are best friends (just ask them) but if Orson needs to get his medicine inhaled/swallowed/injected then playtime grinds to a halt (and is often annoyingly interrupted) until the task is completed. So when it comes to other optional choices in life we (“we” as in me and my husband, I don’t have a mouse in my pocket) try to see them as such instead of forcing things that really won’t affect the moral character and happiness of our child.

One thing we have decided to not force on our kids (the parental crowd is going to go wild on this with disagreement I know and I have heard it before believe me) is swimming. Maelee picked it up quickly and eagerly very young. Charles did not (until this summer, hold on and keep reading). Orson has not yet.

The boys love to play in the water but the action of swimming without being able to touch the bottom of the pool is not of any interest to them. Frank and I never having been Olympic quality swimmers ourselves and feeling like it hasn’t stopped us from anything we wanted to do in life, focus on safety and fun in the pool with the kids. Charles was ecstatic when he grew tall enough to walk the majority of our community pool with his head above water. At the beginning of the summer I tried to teach him to swim and lost that battle very quickly. The battle being him insanely angry and upset and me stopping trying came and ended fast with Charles the victor. Then he got a coast guard approved life vest and was worried still about it not functioning properly in the deep (six feet folks) water. So one morning I dragged him into the deep end with him screaming enough to bring out neighbors living around the pool to check on us and he saw that indeed his snuggly fitting life vest worked great. He got the feel of things and the motion of his movement in the water and before we knew it he was taking off the vest and swimming all around the pool all on his own self instruction. Still in the shallow end yes, but hey that’s where I do all my swimming too. So we figure it’s a 2 thumbs up experience (both my thumb and Charles thumbs are the two thumbs in case you were wondering).

So yes there is Charles’ very exciting success story from our pool time this summer, but then there is the reality also that in my eyes especially towards the end of the summer, swimming is more trouble than its worth. With the piles of wet swimsuits, puddles all over the house, any space being used to change clothes is completely trashed, working around the baby’s naps, etc., etc., etc.

Of course I love my 13 month old with all my stinking heart but holding her in the pool is only fun for about 20 minutes. Make that 15 and set the timer please. She proved the need for me to wear a swim shirt this summer when she roughly and insistently pulled down my swim top (and although that’s a great way to make strangers feel awkward and leave you alone at the public pool it is very terrible when it happens around all your neighbors many of whom your attend church with). So with that in mind my desire and tolerance for taking my kids swimming this summer has fizzled out to taking them out of guilt for the sake of their summer enjoyment or doing anything else I can think of to avoid it. So if there are any other moms out there who feel the same way I do in regards to swimming loosing its charm when you have a whole flock of ducklings this comic is for you. For you other moms who remain beautiful mermaids all summer and swim your tails off, my hands are clapping a big round of applause for you right now.

 

Redacted, My First Letter to the Editor

I received my first letter to the editor today. I say letter to the editor knowing full well that I am talking about myself who is also the author of this peculiarly shifting and sometimes neglected blog. So the letter came in the form of a text from the most important guy in my life. So all things considered I thought I would officially redact the illustration of Frank from yesterdays comic post and replace it tonight with a hopefully improved in his eyes illustration.

That is all.

Kamarah

PS - I may or may not be using the term "redacted" correctly this evening.

The End is Near, Summer's End Anyway

At the end of the summer I always balance between hating my name being said every 3.5 seconds with a request attached and then being sad that leisurely time together as a family is being literally sucked away into the vacuum oblivion of the school year schedule. It was a well spent summer here. We all have mixed feelings about the new school year and what it will bring, surely an adventure though so that is always good. So without further ado here is the second submission of “Sanity Choices.”

Heaven is Cheering You On!

When I finished reading this talk, my spirit soared. After reading it I knew that besides of course my family I would want Elder Holland to be transported in a golf cart every 3 miles along my hypothetical future marathon route. Hypothetical in that it would be a physical miracle if I ever did run a marathon. But if I did I would want someone to get this guy out there to cheer me on. Because I think with his powerful words of encouragement I could get through anything.

I was so excited after reading this INFACT that I skipped rough drafts and tracing boards and pencils and went straight for my brightest most powerful oil pastels to really get my feelings across. These are (in my home anyway, you can make your own choices of course) wall worthy words. So I say to myself, “pin this to the wall baby and let the power of the words and images that surround me in my home solidify the testimony I have and want my kids to have. Thank you Elder Holland!”

Sanity Choices : The Pee Drops

Although I have not been writing much on the CF Is Not Forever blog, I still know that indeed CF Is Not Forever. Ideas for posts sometimes float through my brain but I have not been catching them quick enough. I have been enjoying the summer with my family. Also I have been working on a personal life changing goal. Silly to some perhaps, but one I have thoroughly enjoyed working on and am still working on. I hope I get it done in the allotted average time (about 6 months) but each step I take on my project helps me to feel more focused on what I really enjoy doing and what needs to be done. The best part about this project is that for once it is a project that is clearing my life instead of filling it. I hope to finish the project and write about it when its complete.

In the mean time as a sort-of-byproduct to my current big project I illustrated a little comic that may or may not ring true to other mothers of multiple children. My oldest daughter happened to see it after I was done (She likes to snoop on my desk. One of her favorite and best talents is snooping so I let her do it to me now in realization that I am also doing it to her in her room and will continue to do it at an increasing pace as she gets older) and told me it was funny and she liked it. So it gave me the courage to post it on the blog in lieu of my lack of posting. Maybe I will make more, maybe I won't, but it was a fun way to spend my time last night anyhow.

4 Pounds of Awesome : The Smile Says It All

We went to the CF clinic today. Orson had a jaw dropping moment in the vitals room. He stood on the scale to see 40 pounds! This is huge! This is big! What a day! He has worked very hard and with a new combination of many changes since the April 19th visit of this year he has gained approximately 4 and 1/2 pounds in 62 days. For a boy who had had trouble keeping weight on for 2 years this is a massive hip hip hooray!

35 pounds 8 ounces to 40 pounds! He was very proud. If I could have been doing backflips through the halls of the hospital I would have! The nutritionist said she hasn't ever seen that big of a gain in that short of time for a kid with the same pattern Orson has had.

He went from the 6th percentile on the CF growth chart to the 61st percentile. So so so huge. What a blessing to his body and what an encouragement to keep up all the work that goes into gaining weight for this boy!

After we were done with our first round of congratulating and cheering for him he told me and my Mom that we should get on the scale and see if anyone would cheer for us. We assured him they wouldn't, but thanked him anyway for the idea. What a day! What a boy! What a needed tender mercy from Heavenly Father!