A Cf Is Not Forever Christmas Story In February

In our designated corner of the procedure room, masked and ready to cheer for the PICC'ed

I was surprised that Maelee ended up in the hospital this past December. I can never guess right when it comes down to it if she needs IV antibiotics or not. The previous year, December of 2017 we had Orson’s surgery and the timing of it had him and us as a fully functioning Christmas machine down and out until literally Christmas Eve, so I thought for sure (not that this makes any rational sense) it was looking like we wouldn’t have any issues for Christmas 2018. But I was wrong. Fortunately even in my October minds blissful ignorance of December’s hospital stay Heavenly Father knew I would need to prepare early. It was brought to my mind, “get ready now for Christmas,” all the way back in October. My mom happened to come over on the day after I had bought the Christmas presents (on a smoking hot sale of course) and she helped me wrap them. She kept saying, “whoa Kamarah I am so proud of you for being ready for Christmas this early.” It was not my idea though I was just listening to the whispers of my Father who loves me and who knew I would not have the chance to procrastinate for December of 2018.

With this being her second hospital stay for the year it felt to her like she was just there. They keep putting her in the same approximate floor and room area and it’s a repetitious routine of being trapped and waiting and waiting and waiting until we are allowed to go and finish at home. It was difficult for her to miss all of the school and friend Christmas activities. She felt left out of things and lonely. But she also had some very supportive friends, school, and church teachers who came and did everything they could to help her feel remembered and included.

As I watch her mind and body take these steps up in an unceasing uphill battle with the repercussions of her disease I’m continuously amazed by her strength. Although she has no option of going through the challenges of her body she does have the choice on how to face them. Which attitude pants is she going to put on? Well bless her heart when it comes right down to the tension filled hospital decisions and then even more emotionally filled long stretched out days and nights of her hospital stay she chooses to put on some really beautiful attitude pants. My favorite for instance of this particular December 2018 hospital stay was her courage with her PICC placement. November of 2016 she got her first PICC and it was placed under anesthesia. Then July of 2018 they gave her a dose of Versed to get her through placing it in a procedure room and not put her under. Finally the big drum roll of December of 2018 she was able to muster up the courage (and this is them threading a line from her arm to her heart while she is awake and alert) to get her line placed with no Versed at all. She was of a fully sound mind and body for this PICC placement which just to me shows her absolute fight and courage for success. I continue to be so proud of her.

It was rough to have her be trapped and struggling in the hospital during the busy and exciting Christmas season and then came the familiar strain of helping the home kids feel happy and well in tandem with the hospital kid feeling happy and well. But again we continue to be blessed with family angels and friend angels who help us get through it all.

When she was able to go home to finish her IV antibiotics I was feeling pretty sorry for myself. I was upset that I wasn’t able to get out Christmas cards as early as I wanted and frustrated I wasn’t able to do the seasonal making and baking that I usually did. I was focused a great deal on things that didn’t matter most. It seemed important to me though and I was sad. Then I got a text from an unknown number in my phone. Someone was asking me how Maelee was.

I was grateful for the kindness of the check-in and didn’t want to be rude so I gave them an answer then asked how my mysterious texting friend’s family was as well, figuring this would clue me in on who they were without me being a jerk and not knowing who the number was. The answer took my breath away as I realized who had taken then time out of their day to text me.

It was a beloved friend and example in my life who I usually talk with face to face or through Facebook messenger. This friend has a tremendous load to carry in her life and does it with such grace, confidence, acceptance of God’s will, and kindness and concern for others that I couldn’t believe that with what all she does everyday for her family that she would take the time to check on me and Maelee. It was a very powerful moment for me of feeing the love of God in my life during the Christmas season. I also quickly added this sweet friend to the contact list in my phone and expressed my gratitude for the love she allowed me to feel on that December evening. What a tremendous lifting hope it is to be surrounded by people trying so hard to follow the example of Jesus Christ.

That is the end of my Christmas story in February. It was a rough month and different than the other two CF exacerbation stays she’s had. This time she sounded really terrible and everyone told her that constantly. It was like taking a beating mentally considering the work shed been doing for her lungs already. It seemed so insulting and defeating to hear that they weren’t reacting positively to her work and effort. The bronch shows her lungs were/potentially still are recovering from having very thick (cheese curd consistency) mucus plugs throughout the bronchable areas. Maelee will have her second sinus procedure (procedure, surgery, whatever you want to call it but her ENT will be scraping all of the compacted bacterial tar out of her) in March to hopefully alleviate the constant head pain, nausea, ear aches, and overall head throbbing she deals with always. The current idea is that the bacteria that is continuing to give her lungs such a work out is also in her sinuses and they in turn are re-infecting each other. She continues to work hard and we continue to encourage her to work hard to stay on top of her treatments. Beautiful discoveries are happening in both her life and ours as parents  as we work through the regular and universal growing PAINS of life and the strange world of CF mixed in.  

Days are easy in the hospital, nights feel sad and

all emotions are coming out.

Mornings in the hospital are wiped of the negative

night emotions because your just so happy the night is over.

Getting to take a walk out of the room after 72 hours inside is

really very exciting.

Maelee's dear friend and child life specialist who is allowed to

be by her during PICC placement. She is an angel on earth. 

The procedure room and Maelee being filled with courage

getting her PICC like a champion of life.

Double Bunk Us I Dare You

They did it together. Being hospitalized as brother and sister who share the same disease. Orson and Maelee. Maelee the big sister who had done this type of hospitalization before began from the start to be protective and ever the teacher to her younger brother. He needed her support and she gave it. As a mother who sees their relationship I was grateful for this turn in the tide as the two usually have the hardest time getting along together. But her mother heart wrapped around him and she did everything she could to comfort and help him while at the same time getting through the hospital stay herself. Maybe it was a good distraction for her.

When Orson was told that he would need to fast to be prepared for his PICC placement and bronchoscopy Maelee quietly told me that she would fast as well. She didn’t want Orson to be sad seeing her eat. So we all fasted and waited. I was there alone with the kids so my husband could get at least a half day of work in. My younger brother came for a visit that morning. He was also a welcome and lovely distraction from the waiting, because that is what the hospital is, waiting. That day we were waiting for Orson to have his PICC placed and bronchoscopy under anesthesia scheduled for noon, and also waiting for Maelee to be called in by the PICC team to place her line in the procedure room on the same floor we were staying in.

The kids received lots of instruction and explanation on what a PICC was and how they would have them put in. This was done by a cheerful and kind Child Life Specialist named Kylee who was absolutely incredible at her job. I was worried that the procedures for both kids would collide and I would not be able to be with one of them. They pulled Maelee back into the procedure room, just a few doors down from where they were staying. Orson was so scared for his anesthesia, he hates everything about anesthesia and he knew it was getting close to when he would have to do it so he was hesitant to watch me walk down the hall with Maelee but he told me to go with her.

She was really being taken such good care of by a room full of capable and kind women. They were all so upbeat and caring. Kylee was right at Maelee’s head all masked and gowned so she could be so close to her. She told me she would stay with her throughout the whole procedure so that I could go with Orson if need be. Maelee was extremely brave and was doing so well but I could hear the fear still right on the edge of her voice. Orson’s nurse came in at that time to let me know it was getting close to Orson’s time for preparation downstairs. I told Maelee I was leaving for a minute and ran as fast as I could down the hallway because I knew he’d be upset waiting for me.

He was balled up in the corner of the room crying. He had just tried to escape the room running down the hall looking for me as soon as the nurse told him it was time to change into a gown for the procedure. He got scolded for leaving the room and was sitting holding his procedure gown crying as far away from the nurse as he could get. I calmed him down and helped him prepare and then ran back down the hall to let Maelee know I was leaving with Orson and thanked Kylee for being so generous with her time and staying right by Maelee.

Orson was absolutely inconsolable. Any time that he could remember anesthesia had either lead to him waking up with a plastic straw sticking out of his stomach that still hadn’t been removed three years later or vomiting blood for hours after waking up. On top of that the idea of being forced to sleep makes him angry and feeling powerless to stop it. So when transport arrived to wheel his bed to the OR he wailed the whole way there. I don’t blame him. He sobbed and cried out in frustration literally every second until the mysterious vile chemicals of anesthesia commanded his body to stop. It was torture for him and torture for me. The child life specialist on the floor there convinced the anesthesiologist to let me go back into the OR with him while they put him under so he wouldn’t have to be alone. It was the first time I had been allowed to go beyond the usual “goodbye doors.” I tried to comfort him throughout this process. He asked to pray together so we did that a couple of times. I tried to absorb all of his emotional pain but there was so much I wasn’t enough of a sponge. I watched them plunge (the nurse didn’t go slow he was trying to get this kid to stop screaming) the milky concoction through Orson’s IV while Orson screamed that it was burning and I wanted to punch all of the men in the room (there wasn’t any women in there which for some reason also made me furious that it was all men). As I watched him instantly go limp after screaming the previous hour all I could do was give his hand a kiss and be lead away to wait. It wasn’t supposed to take as long as it did but between waiting on the pulmonologist to arrive, finish, and complete the bronchoscopy and then trying to find a vein large enough to PICC Orson it took twice as long as they said it would. One of Orson’s issues with anesthesia is the moments he’s alone in recovery and waking up without me. Because of this I was pacing getting more worked up and more worked up with each minute. Oh and we had a fun surprise right before we got hospitalized, our insurance deductible that had been met days after January 1st of this year got mistakenly reset unbeknownst to us July 1st (still trying to clean that mess up) so I was fielding calls about medicine during this anesthesia prep time.

In the mean time Frank came to the hospital from work and was with Maelee so at least she wasn’t alone anymore. Finally when the nurse came back to get me I just lost it. I wasn’t crying yet but I was so upset I couldn’t complete a sentence just spewing angry half sentences like the wind was knocked out of me. Then when I got to him he was already awake which then made me start to cry with him because his fear came true and he had woken up alone. I couldn’t describe to the nurse how deeply upset I was. I was so disappointed that I had let him down and felt so helpless as I watched him again get so sad and disoriented watching him live his dread. It was a small procedure. I understand that. But every time he goes under it feels like reliving all the trauma. The devastation and pain he felt as he sobbed in my arms so confused and hurting after g-tube placement surgery, and the feeling of catching a bowling ball in his nose and throat and then repeatedly vomiting blood after his surgery in December of 2017 all those memories just hang in the air around us and its awful. Its difficult not to feel like its your fault as a parent when your child is in pain. Surely there was something you could have done to stop this or fix it but you failed and now your child is in their pit of despair and you have to slowly and carefully do anything you can to coax them out of it.

Then PICC day was over and we had rainbows of visitors everyday to go with the waiting. Waiting for each doctor to come in and give us a two to five hundred dollar handshake everyday, and IV’s to run, four vest treatments a day, and trying to convince the kids to eat.

Maelee has never struggled eating well, but Orson has struggled with eating enough food to sustain life since birth. This bothered many of his nurses who would pepper him and then Frank or I whoever was in the room with questions of why he didn’t eat more. This would make him cry. He did find a way to successfully get his blood glucose measured. When the nurse would come to check his sugar he would call for the parent in the room to come and hold his ears to block the sound of the little machine. He didn’t mind the poke so much or seeing the blood even but the sound of the machine was very grating to him. Good news though his numbers looked swell so they stopped checking after a few days.  

The picture we took before I drove Maelee and Orson to be admitted to the hospital.

The picture we took when I came to switch places with Frank the night of the day my friend had brought Charles to spend the day visiting his siblings.

We switched parent schedules on the weekend when Frank wasn’t having to go into work. He slept at the hospital with the kids on Friday and Saturday night. Which gave me the chance to be the one at home waiting. What was special about it was that because of how the visit played out Frank and I both had alone time with each of the kids at one point or another to express our love, spend time with, and listen to them. Charles and I stayed up later than usual working on a puzzle and with Charles legos are always involved so that was fun too. Ruby and I randomly got cauliflower soup from Zupa’s on her request. I have to admit I was dreading church on Sunday. I felt so fragile and tired and I didn’t want to get into in depth conversations about the hospital because I was worried it would make me cry. But we went to church anyhow. Myself, Charles, and Ruby and once I got through sacrament meeting and into my primary class and sat with my CTR 7 class the most comforting feeling of love stayed with me the whole time. I forget how it came up but each of the 7 year olds in the room started asking me questions about the kids in the hospital. But it was so sweet, kind, and innocent that it was easy to talk about with them. Then without being asked during the opening and closing prayer my primary kids prayed by name for each of my children. I felt so loved.

After church waiting for news from Frank was killing me. The kids had a lung function test to do scheduled for noon, then they would hear from our pulmonologist and she would let us know if we could come home that day or Monday or Tuesday. Then I started getting calls from the home health care company who would be supplying us with our home IV supplies and nurse visits. I started to panic thinking about being responsible for running two IV schedules. So I did what seemed the most natural and beautiful thing a mother could do on a Sunday afternoon. I baked cookies. These are spectacular cookies by the way (Neiman Marcus cookies from that ancient e-mail forward years ago – a family favorite!) that I knew I would have to resist eating two dozen of in thirty seconds because that’s what Kamarah last year would have done, but Kamarah this year has lost 55 pounds and is going for 15 more. But I baked anyway because the process itself was what I needed that day not the eating. It worked. Baking made me feel better and more like a regular mother and not a mother waiting for IV meds to be delivered.   

The IV and vest schedule I wrote out to keep things straight.

The most exciting grocery store trip ever.

 When they came home we ran their IV’s through their PICC’s and it was fine. It was hectic and touch and go for sleep but we got through each day hunkered down happy to be home and not stuck in the hospital room anymore with insanely expensive handshakes from doctors and nurses breathing down our necks. Maelee was so concerned with us having to get to her arm in the middle of the night for IV changes that she would sleep in a very specific thoughtful way with her PICC arm laid nicely on her pillow. The day after we came home we needed to go to the grocery store to replenish the necessities. Both Maelee and Orson practically raced us to the car when we asked if they wanted to go and walked around in Fry’s like it was the bright lights of Paris so happy to be somewhere besides room 320. It was comical and fun to watch them be appreciative of home life.

Now our goal is to ring out the towel of summer for the next few days. It’s that special nostalgic time of year for me when I get sad thinking about having the summer be over and the kids gone but I also want to do a cartwheel because school starting means the expectations of Mom performing entertaining magical experiences stops as well. Cheers to a long and lovely break before our next hospitalization.

Neiman Marcus Cookies

1 cup butter

1 cup butter flavored shortening

2 teaspoons soda

2 cups white sugar

5 cups oatmeal

24 ounces chocolate chips

2 cups brown sugar

1 teaspoon salt

1 - 8 ounce Hershey bar cut into pieces

4 eggs

2 teaspoons baking powder

2 teaspoons vanilla

(9 minutes in 360 degree oven or when slightly browned on top)

PS - Having your insurance deductible reset and then trying to convince people it was a mistake and your deductible has indeed been met is what I can imagine would be similar to sitting in a maximum security prison and trying to convince everyone your innocent. No no no I realize the prison scenario is much worse but its pretty ridiculous none the less. 

Loosing More Than A Ruby

 I am blowing off the dust of the blog tonight. I just have this post rattling around in my head and I have to get it out. It’s bothering me the rattling.

First. I received this text from a cherished friend on January 24^th.

“Hey I’m tired of wearing my fat clothes. Do you want to work together to loose weight? I don’t want to put up money or prizes or anything. I just want to work together and encourage each other along the way. Once a week weigh in’s. Are you in?”

It took me a minute to decide what to tell her. I knew I had gained a significant amount of weight not only with adding on a dozen pounds or so after each of my four babies but even AFTER my last baby was born gaining an unhealthy amount of weight. But with it all, the weight I mean. I still felt like I had confidence and accepted my body for what it was. I still felt beautiful. Until recently. Enjoy a digression…

Starting Weight

Part of my confidence and joy (despite my weight gain) in life comes from my hobbies. I love to create. Typically through fabric, sometimes paper and pen. Sewing my own clothes just how I want them fills me with happiness. Since my first job at Sally’s Fabrics I’ve been coo coo for sewing my own clothes. Thrilling. This past year I particularly enjoyed a high waisted maxi skirt. I even made two of them (which for me is restraint because when I love something I make I usually obsess until I have one in 12 different colors, like a fabric gluten). The first one turned out (in my mind which is all the counts when it comes to wearing what I sew) so fantastic that I made another to wear to my husband’s Christmas work party. I loved the femininity of the floor length skirt and how flowy it was. I felt like a queen whenever I wore it. I could get down on the floor with the kids and sit cris cross. It had pockets. It had color. I loved it and wore it often. One time earlier this fall I even wore it as I “saved” a kindergartener on my sons playground who had gotten their knee stuck between the bars of the playground equipment. The principal was running to get some WD40 and I jumped to the top of the playground structure with another playground aide and helped get his leg out before any grease could arrive. When the bell rang and all the kindergarteners ran for their teacher lines I stood at the top and couldn’t help looking back at my shadow to see my skirt billowing like a super hero cape. Power skirt. But then this very power skirt that I loved was what I was wearing when within the same month two of my long term hair clients asked me while I was cutting their hair if I was pregnant. I was shocked both times. Especially when one lady even had the guts to add, “are you sure?” These were mature women too. How could they say that? My heart was so hurt. And then all that confidence I had in my appearance and my awesome power skirt crumbled to the ground. I felt like I knew then what I must look like to others and it was devastating to think that I had gained enough weight to lead people to believe I was pregnant.

So yeah I was interested in giving weight loss a go with my friend. I’d never really ever tried dieting. I just watched myself gradually rise up in weight passively over the past 10 child bearing years. Just watching and buying bigger jeans and looser blouses. So I agreed to start with her that next Monday January 29^th, 2018. She is a faithful friend. Diligently coming over every week to my house so it would be more convenient for me to make our weigh in appointments.

At 18 Pounds Lost 

I was shocked and invigorated when weight began coming off. So grateful that she’d asked me to do this with her. My one and only strategy for the first month was calories. I know protein keeps me feeling better than when I just eat carbs but I didn’t go crazy with a strict food plan. I simply ate portion sizes of the things I enjoyed, logged them in the FREE version of the UnderArmor My Fitness Pal app and went about my way. Keeping my calories around 1,200 a day in the first month I lost 18 pounds. No exercise, just counting calories for real. Never having dieted before I thought this would be my normal monthly average. YEAH NO it slowed down. The next month (March) I was able to loss 9.6 pounds and began attempting to reach my step goal (10,000) more diligently. Then for April I focused on closer to 1,000 calories a day and was able to loose another 9.6 pounds then add to my delight that I can run two miles (taking a few walking breaks) which I’ve never ever done in my whole life. Total I’ve lost 38 pounds so far. That is 6 more pounds than my baby girl weighs right now. So I can pick her up and hold her and literally feel how much weight I’ve lost. I’m thrilled and happy for the things I’ve learned about myself. I’ve learned what my triggers are. Having to say no to people, or experiencing conflict with family members was a big trigger. When my kids are sick is another. It’s made me into a crier when I’ve never been a crier. But that’s been way better than eating a sleeve or two of EL Fudge cookies. I feel better after I cry as opposed to feeling sick and still sad and upset. Its been empowering and really fun to see my clothes get too big for me. I fit into a jean size 6 times smaller than I was when I started. I’m not done yet. Really to get to the middle of my “healthy weight range” and not just teeter at the top I have still about as much to go as I’ve lost. But I’m excited about it. I’m so excited that I tried and that I’ve learned so much and am enjoying making healthy changes and healthy choices.

At 38 pounds lost. 

All that being said I still eat things I love and that are especially delicious and appealing but just less or only one item that is especially indulgent every once and a while. I bank calories for these foods to enjoy periodically. So here is my short list (my circle is small folks and I’m OK with it)

East Valley Arizona Food List Totally Worth Every Bite To Save Calories For List.

1.       A junior sized white pizza at Floridema’s Italian restaurant on Gilbert and Gaudalupe. This especially terrific pizza not only is a garlic and cheese lovers dream but the crust is boss. Not a hog that fills your bite up with nonsense bread but a gentleman’s crust who says, “yeah sure go ahead we work together here on this pizza I’ll be here to help you enjoy these bites. Each and every one.”

2.       Blueberry streusel donut from Hurt’s donuts in Tempe. I’ve said it before and I’ll say it again. This is something you need to taste in your earthly life. Do it. This streusel is unbeatable. The blueberry donut inside will also create a hashtag in your mind and it will be #bombdiggitybro and second runner up at Hurt’s is a pink lemonade cake donut. Trust me on this I know cake donuts.

3.       Anything on the menu at Carolina’s Mexican Food Restaurant (we convene at the Mesa Country Club location, but my brothers have been driving to Phoenix for the original local for years.) So I started as a huge fan of their mini chimi’s but am really super into the bean tostada (lame you say, well how about you take a bite and then we can talk. But really if you say anything bad I don’t want you to say it please). My husband goes for the mixed red and green burrito no beans. But what makes my mouth water just thinking about it are the chips and hot sauce. I just love it. Love is not an exaggeration.

4.       Sugar cookies from The Sweet Tooth Fairy. I know that they are well known for their cake bites but guys listen up those sugar cookies can’t be beat. Other bakeries get it on the décor and yeah their pretty I’ve even been tricked by their beauty into buying them (Kneaders sugar cookies) but am totally disappointed on taste. These pack the double fisted punch of both glamorous beauty and spectacular taste to match.

5.        The black cherry oreo dipped cone from Chocolates and Crème’s on Val Vista and Baseline. Cover your eyes and ears kids but one bite of this and I just wanted to make out with my husband. IT IS that tasty. But I didn’t do that because hey show some respect it’s a public place were not animals. It’s that good though it’s no joke.

6.       My most recent discovery is a new twist on an old favorite. I always thought people were weirdos for ordering their hamburger wrapped in lettuce at In N Out but now I’m one of them. Absolutely a lettuce wrapping weirder. I read up on the secret menu and found something that I knew I would love. I asked them to give me a “mustard grilled cheeseburger with chili’s protein style.” I’m so excited about this burger. Wrapping it in lettuce as opposed to the bread only enhanced the awesomeness of a mustard grilled cheeseburger with chili’s. I’m so happy that the secret menu is not really a secret and that I will always order this now when I In N Out.

I’m exhausted from writing about all my favorite foods. This post had nothing to do with my kids or how CF Is Not Forever. So to sum up on that side of things. Recent blood work came back with some typical flags and some dreaded flags. We’ll have some diabetes screening in May. Just a screening at this point and most likely a fasting glucose test but it’s time to get some knowledge on CFRD (Cystic Fibrosis Related Diabetes) and how we can work together as a family unit to be ready for this new challenge and reality of the repercussions of life with broken pancreases. Were also hoping to get on board with the newest CF med for our mutation since our oldest kid is old enough. We have high hopes of starting over the summer as to test out inevitable side effects NOT during school time.  I’ll try to write more. I like it. Not as much as sewing my own clothes but its fun. I need to write more often again.

I Think We Can All Agree

               

Summer gratitude. Summer props. Round of applause for summer. Oldest son getting baptized. Oldest son becoming a Cub Scout. The lazy river. Tubeless hour. Making lots of silly hats. Tucson temple trip. Hearing that tiger growl and prowl 2 feet away from us. Choosing Oregano’s instead of something unique and local. Listening to Stone Fox. Listening to Dad get furious about the grandfather in Stone Fox. Hearing the fascinating and inspiring details of a missionary in Latvia. Charles finally getting glasses. 10 movies at the movie theater for $7 total. Talking through ten movies for only $7 with my mom on one side and my girlfriend on the other. Watching Moana every day with Ruby. Dad’s floral tie. Teaching Ruby to say “surfs up dude.” Burying my boys in the sand. Holding onto the head of a practically life size blow up giraffe while 5 kids rode waves. River offering Orson a free burrito. Watching my daughter be so brave and boogie board in the ocean. Meeting a man under the pier who handed our boys a one clawed crab. Watching the crabs run from one pier leg to the other between waves. Climbing the rock pier. Feeling so proud to make it to the end. Getting splashed by a huge surprise wave. Listening to “A Single Shard” and hoping that Tree Ear comes out OK in the end. Doing hours and hours or origami thanks to a thoughtful gift from a friend to our son. Reading Sadako And the Thousand Paper Cranes out loud to the boys on the same day that a real life inspirational bright and hopeful girl passed away from her own cancer battle. Bawling while I tried to read out loud. Explaining to the kids that crying is a really wonderful thing. Explaining that crying tears is such a great blessing and can help cleanse and heal our grief. Spending more time at the public pool than I ever thought I could. Being really grateful for %40 family pass sale in April. Picking up 2,347 legos 74 times. Looking for Ruby’s pacifier for at least one hour every day.

Laying on my back talking on the phone to my Mom while Ruby climbs on top of me and jumps on my stomach at the same time my boys both simultaneously urgently need help with one particular fold of origami and also for me to pour them orange juice because its too full, then my niece whispers in my ear “Don’t worry Aunt Kamarah I will clean up those rice krispies.” Phone call ends.

Collecting poop for 72 hours for a CF related test. Laughing while I pack ice around the large jar of poop in a styrofoam ice chest that the lid wouldn’t close on. Driving the frozen poop to the lab. Walking into the every-seat-in-the-house-is-full lab with a large jar of poop. Explaining why the sample was a 72 hour collection to the lab tech. The lab initially refusing to take the sample we had very tediously collected by doctors orders for one of our CF kiddos. Calmly but urgently explaining some more. Sighing a massive sigh of relief when I walked out of that lab without a huge frozen jar of poop.

Beating the robotic numerical phone system and getting appointments for 4 x-rays when the human receptionist told me the week before my only option was walking in and waiting for three hours.

Watching Charles win the “stand on Uncle Selby’s back and balance before you fall into the pool contest” with the final count of 42 seconds.

Feeling pretty useless as a mother when my boys prance off to spend four days with their grandparents and don’t even miss me for a second. Then feeling pretty proud that they are fine without me.

Being grateful that my husband cares enough to find me real Rocky Road ice cream with actual mini marshmallows and not the insulting kind with marshmallow cream.

Having a daughter grown up enough to plan play dates through emails and texts. Watching her plan and carry out her own successful book club.

BUT my favorite part of the entire summer and what sums up this stage of our life as a family is our 4^th of July. We decided to start toilet training our youngest on July 3^rd because Frank Daddy would be home to help me. It went as well as can be expected. We were all waiting on baited breath for her to poop in the toilet. Finally the next day, 4^th of July, she did the glorious deed successfully. Watching her brothers and sister cheer for her was a tear jerking standing ovation moment. They may fight and squabble and hit and say hurtful things to each other at times, but darn it they know when to cheer – even nay especially when its for Ruby’s first poop in the toilet.

As myself and the older kids were driving home from the downtown fireworks I asked them what their favorite part of the day was. My oldest son said, “Mom I think we can all agree that when Ruby pooped in the toilet was our favorite part of the day.” Yeah that was pretty incredible. We all agreed.

So minus a few other million things that happened during the last 10 weeks that’s how we did summer 2017. We did no book reports as planned. The grade level worksheet books I bought remain 17% done. I am not sure anymore if I have all the kids school supplies from their lists because they tore into what I bought one day when I was distracted with company and exploded it all over the house and between their three backpacks. Good luck guys! I write it to remember it. I write it to show gratitude that I got to live it. Thanks summer, we love you. Come back again next year. If I win the lottery we will see you in Alaska, for a few days anyway.

They Shatter My Doubts

                It has been to date a summer filled with changes. Every day when I give Baby Ruby Forever her enzymes without having to get out applesauce to put them in I’m still surprised at her. I kept the applesauce available to use in case we needed it but after her first time of literally swallowing them without water, just swallowing them when I asked her to she hasn’t looked back. It is incredible to watch my kids do things easily that in my mind were going to be so so so difficult. My kids shatter my doubts. I am so excited to see them make progress towards independence with their care. Our situation is unique in that we have three levels of progression with Cystic Fibrosis.

They shatter my doubts, these guys right here.

                The first level, most advanced level, sits with our oldest brave newly double digit turned daughter. She is a courageous leader for her younger CF siblings, (whether she realizes it or not at this point). Six months ago she had her first complete sinus cleanout surgery plus adenoid removal surgery and since then her healing has brought with it huge benefits to her personal gauge of health. She knows now and can feel when her breathing and upper airways are clear and how to try to fix it when she is not. I’m so proud of her in gaining this skill, it was a challenging one to acquire (upper airway clearance) but she’s getting leaps and bounds better at it than ever before. To see her feel the physical difference in a blocked airway and then cringe to know how hard it is going to be to clear that and then to do the work to do it is really sensational. For instance she was laughing so hard today due to a hilarious friend at church (sorry primary teachers she may have been out of hand today) that she gave herself and amazing upper airway workout which left her feeling blocked. She came home from church and spent an hour fixing it, doing all the tricks of her trade (that she has learned for the past 10 years) to finally get it taken care of and with relief declare “I feel so much better now Mom, I really do.” We work with her to know what each pill does that she takes, and what each vial does that she inhales, and why its important to do all the stacks of extras that she does each day to feel healthy. She sets up her own pill box every week and follows a chart to make sure shes got them all. She is very close to being independent with her care and treatments with us praying, learning, watching, reminding, and encouraging from the sidelines. As she gets older well talk about insurance, where to get the cheapest over the counter supplies, etc – but thankfully we aren’t quite to that level yet (because I’m still figuring it out as well).

                Then we have our middle level of CF independence in our only g-tuber plus CF child, our own King of Brave, Orson. He is busy learning all about his g-tube. How to set up his feeds at night, how to hook and unhook himself from his machine, and how to keep his button site protected and safe. Along with having his one night every two weeks or so where he is very angry about having his protruding piece of plastic, he also has a sense of pride about his button. This comes of course from being the only one with one so he enjoys teaching his siblings about it (they love to help him hook and unhook and set it all up as well). He is also aware of what each swallowed and nebbed med does. All of this knowledge is being absorbed without him even being at the milestone of reading on his own yet which I always forget about him not being able to do that because he seems so mature and does so much for himself already in regards to care. He is very careful with his inhalers and I am grateful that he takes the instructions of the respiratory therapists so seriously and is so good at holding his breath and counting between puffs. He has always jumped at the opportunity of doing this on his own and progressing to the next level of self care. He is definitely a younger sibling who is racing to keep up with his older siblings and in this case, CF independence, it’s a really amazing blessing as his parent to see him trying so hard to be responsible in this very crucial part of his life.

                Whats been so wild about our now last level of CF independence in this our 2017 summer of change is watching our Baby Ruby Forever come out of the infantile CF stage where we are doing everything for her to watching her take those first steps to independence. She knows where her medicines are and can walk to carry them. She can hold her own neb cup. She enjoys counting to six in Spanish as we count breaths using her chamber. As I said before she is swallowing pills now. She has begun the always memorable journey of using the toilet and that is always a party for a CF human due to that darn pancreatic insufficiency and other CF nuances. My favorite part about the stage she has finally come into with CF care is that we have had more mornings that not this summer where all three kids are treatmenting at the same time! This is a motherhood miracle for me because its such a relief to have Pulmozyme and other important meds done first thing in the morning and not have to find time to work it in during the always changing day time schedule.

This is a blog post I wish I could go back in time and have myself read two years ago as I was holding my third little CF baby in my arms thinking, “how in the world will this ever work?” Two life changing years overflowing with blessings have happened to get us to these three separate levels of CF care.

My faith in my children's ability to handle the disease they were born with increases every day and it gives me a constant reassurance of God’s planning and presence in each of our lives. They are doing it baby! Wahoo!

When Her Pancreas Was Broken From The Start

Me and Baby Maelee 10 years ago.

Can I just say my hair has never been

this long since this picture? #goals

 As I sat in the CF clinic exam room 10 years ago and our dietician was explaining to me the details of my baby not having a functioning pancreas I learned that she could, would, and does experience frequent and often constant stomach pain and cramping. I remember feeling relieved that I had justification for holding her even more. I hated to think that my tiny innocent baby could be hurting and not be able to tell me. As she has gotten older it is even more difficult to hear her say her stomach hurts and watch her suffer and know all the meds she is already taking and that it isn’t enough to end the pain. Watching my kids struggle with severe pancreatic insufficiency and their CF in general, has helped me to remember that what you see on the outside of a person is not at all reflective of the struggle and pain they are experiencing on the inside.  

Watching through mother eyes as my oldest has experienced rough and constant stream of dealing with her stomach issues since birth I was recently touched when I thought of her in relation to “a certain woman” referenced in the New Testament who had the issue of blood for over 12 years (Mark 5, etc). The woman “had suffered many things of many physicians, and had spent all that she had, and was nothing bettered, but rather grew worse” – Mark 5:26). “And, behold, a woman, which was diseased with an issue of blood twelve years, came behind him, and touched the hem of his garment: For she said within herself, If I may but touch his garment, I shall be whole” (Matthew 9: 20-21). I want her to have faith as this woman did to know that through Jesus she can and will be healed. I want her to fight through the throng of people to get her arm stretched out enough to touch the hem of Jesus’ garment. I know she can be that woman and is becoming that woman now.

I also know that not all healing comes on earth. So I need to help her to wait. That is one of my jobs as a mother. Help her to wait with faith and hope. That one day lung function and pancreatic insufficiency won’t be a problem for her and to be happy and enjoy life while she waits for that day.

Her glamorous ring.

Being the annoying song lady.

I'm not always perfect at compassion and motivating because there are days when I've run out of gas myself it seems. However, it is the little things that the Holy Ghost helps me to know will help. Things that are tiny in thought but powerful in purpose. Things like, finding a flower ring on clearance in the hospital gift shop and walking it up to her to find her awake from her post op nap vomiting blood. I wasn’t planning on getting anything but found the ring and was so happy to be able to give it to her during that difficult recovery. She was thrilled to wear the ring on her IV hand so it would still feel like a beautiful hand. Or when earlier this month when we were going to a follow up appointment that she was extremely nervous for I made her a hat the night before so she would have a little something new and special to wear to the appointment. She is my daughter after all so I knew a little “accessory courage”, one of my favorite kinds of courage to lighten the morning would go a long way (don’t worry I know courage comes from your heart but a fun hat or a pair of earrings can go a long way too in my warped opinion). You never know when you make someone something if they will really like it or not but it was just the thing to help her be positive through the appointment. Or a month before her hospitalization she was getting sick and we had months ahead signed up for a family 5K. She was really dragging and struggling throughout the race. A goofy song I had heard on the radio came to mind and we sang it together to get through the race. Something always comes to mind when the anxiousness of the moment presses on my own mind as I watch her.

Accessory courage at its best on CF clinic day.

When I was searching for some words I needed to hear this week I found something even better. It was this talk by Boyd K. Packer. He explains that we all (especially family members of people struggling mentally and physically) need to “become like angels who “move the water,” healing a spirit by erasing loneliness, embarrassment, or rejection…..If our view is limited to mortal life, some things become unbearable because they seem so unfair and so permanent. There are doctrines which, if understood, will bring a perspective toward and a composure regarding problems which otherwise have no satisfactory explanation…….That day of healing will come. Bodies which are deformed and minds that are warped will be made perfect. In the meantime, we must look after those who wait.”

I feel and see the love of Heavenly Father in my life as I live my life as a mother to all my children.

Comforting My Babies (Wrapped In Love)

I’m so grateful that I come from a family of sewers. Sewing has brought to me immeasurable amounts of joy, therapy, and much needed self-expression since I was a tiny kid threading needles back through my mom’s quilts stretched on quilt frames. Because I love sewing “sew” {so} much I try all sorts of projects but the most satisfying by far is making quilts for my kids. I say “quilts” in the lightest of terms. Don’t picture some elaborate pieced out masterpiece, instead picture something sturdy with color done in large blocks. I love that every bed in my house is covered in a quilt that I made myself. I love that to prepare for big occasions such as a baby being born, or milestone ages reached that I have made a quilt for my kids for that. It’s a journal of sorts. Something that is so special to me that I hope translates into that fabric and batting and binding and when they lay down to sleep or be comforted or warmed that they know their mama’s hands have been there to help make that happen.

Most recently I finished Charles turning 8 quilt because my accidental but then firmly abided by tradition has been to make a baby blanket, then a blanket when my kid turns 3 years old, then a blanket when they turn 8. I suppose I’ll carry it through to ages 12, 16, and then when they live on their own perhaps - - - we’ll see but for now we have those first three quilt ages established.

When I look at the quilts I remember what I thought about when I made them. I remember what was going on in our family and I love that seeing the fabric is what makes the memories come to me.

So far the two eight year old quilts that I have made have been special because turning 8 in our family means that you’re making the decision to follow Jesus Christ and get baptized and receive the gift of the Holy Ghost. The 8 year old quilts are made from clothes that my kids wore throughout the years leading up to their 8^th birthday. I want them to remember what they wore as they first learned about making choices and fixing mistakes and learned of their Savior Jesus Christ.

As I was just last month making Charles 8 year old quilt I thought about 5 years ago when I was making him his three year old quilt. I remember being so worried that I would not finish the quilt on time for Charles 3^rd birthday because Orson was so sick and I was not able to work on it as much as I wanted. The quilt meant a lot to Charles and he reminded me often of how excited he was to get it from me on his birthday.

When I realized that I definitely would not make my deadline because Orson had ended up being admitted to the hospital I remember being a wreck and tearfully asking my Mom if she would finish it for me because I knew how disappointed Charles would be if he didn’t get it as he was hoping. So that particular quilt is especially special because it has the hands of Charles grandmother and his mother in it. It was given to Charles on the morning of his 3^rd birthday in a house decorated by Dad and without his baby brother or Mom there to sing a birthday song. But thanks to my Mom, he DID get it and the legacy of fabric and thread continues over another generation of woman in my family.

I love the analogy of a quilt being like the Holy Ghost (AKA the Comforter, especially applicable in this case). “He is the Comforter (John 14:26). As the soothing voice of a loving parent can quiet a crying child, the whisperings of the Spirit can calm our fears, hush the nagging worries of our life, and comfort us when we grieve. The Holy Ghost can fill us "with hope and perfect love" and "teach [us] the peaceable things of the kingdom" (Moroni 8:26; D&C 36:2).” (link to quote and more info here).

To get to my point, I cannot sing. I cannot dance. But darn it I can sew a quilt under pressure.

I searched high and low amongst my 11,000 jpegs

but couldn't find the quilt pictures I wanted. This

one is adorable though so I'll post it. Picture

a really sweet picture of all three kids wrapped in their

3 year old quilts on Orson's 3rd birthday. Its adorable.

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My Fabric Journal. 

Maelee’s baby blanket (2007): Done in Mary Engelbreit (another obsession of mine) flower style. She being my first baby and my coming off working a full time job we had a little money to buy furniture and fix up her room which was all done from the colors in her quilt.

Charles baby blanket (2009): Lots of fish hand appliqued covered Charles baby blanket. It matched the theme I enforced for our 2^nd CF Great Strides Walk. We couldn’t afford to have more shirts made for our walk team so I made fish for us all to pin on our shirts from the year before. They matched Charles quilt.

Maelee’s 3 year old quilt (2010): My older sister who lived close by would pick Maelee up and take her to preschool for me so that I could finish Maelee’s three year old quilt. It was such a kind service that she did for me, simple and kind and needed. I was getting big with child as they say with baby Orson at the time and had a two year old and I remember how difficult it was to spread out my squares on the floor and get up and down like I needed to. I got that one done because of her.

Orson’s baby blanket (2011): Orson’s birth hit me like a fleet of semi trucks so it took a while to get his quilt done. My Mom actually picked the adorable cowboy fabric and the green satin on the back was the same fabric I had used to make the wedding neck ties for my brothers wedding. His quilt didn’t get done until at least 6 months after he was born, but it did make it to the hospital with him when he was admitted at 7 months for his first CF exacerbation.

Charles 3 year old quilt (2012): We were so devastated to be in the hospital with Orson on Charles birthday. We try to be very sensitive to him not getting the short end of the stick due to being the only one with CF and this felt like breaking that rule majorly. But as I said, my Mom rescued me and got it finished on time.

Orson’s 3 year old quilt (2014): This one looks as much like Charles as I could make it despite a different color scheme because those boys were and are inspirable. They have become such special friends to each other and I loved to be able to carry on that continuity. For my own selfish reasons I’ve always hoped that orange would be Orson’s favorite color so that is what I made his quilt with. You know, “O”range for “O”rson I thought would be cool.

Ruby’s baby blanket (2015): she had so many truly beautiful real deal quilts given to her that I felt my large blocked colorful sturdy ones would be inadequate in comparison, but I made her one just the same. It is from one of my favorite items at IKEA, the precut fabric block bundles they sell tucked away in a little corner of their textile section. The prints are all totally whacked and don’t match at all which is absolutely how I felt when she was born and I was sewing it, but it turned out beautiful despite my crazy fabric choices, perhaps even because of them.

Maelee’s 8 year old quilt (2015): This project was due 7 days after my 4^th child was born and I was definitely late turning it in. Maelee was old enough that I could talk her off the cliff of “mom doesn’t love me because my quilt isn’t done on my birthday” routine, but it was touch and go for a while. All of that summer was a big hot mess, but the quilt was finished before school started in August made with the dresses Maelee had worn all of her growing up to 8 years.

Charles 8 year old quilt (2017): This was a really fun sew. I was feeling happy that summer was near and that baseball and play season was almost over. I enjoyed making the blocks out of Charles t-shirts and remembering how I got most of them on various black Friday clothing hunts into the wee hours of the morning with my black Friday shopping posse.

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!