Sunday, March 26, 2017

While I Wait to Fulfill My Destiny As A Kindergarten Teacher

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

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

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

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

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

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

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

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

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

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

Sunday, March 19, 2017

When I Found Out About Her Nightmare Normal

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

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

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

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

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

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

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

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

Sunday, March 12, 2017

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

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

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

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

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

Charles starting his bear building adventure.

The Magical Making of "Spike" the bear.

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

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

Sunday, March 5, 2017

If Your Going To Brag About Your Kids Abilities Be Prepared to Fail, (Or Atleast thats What Happened To Me)

I get myself into messes. I try to just live my life kindly and calmly and then all of a sudden I snap and BAM I make a brash remark and land myself in a pile of poop.
Case in point, I was sitting calmly discussing med changes with our pulmonologist and which antibiotic Orson the CF 5 year old (AKA the Kind of Brave) should take. She assumed that since he has a g-tube that liquid would be preferred, but I make this adamant brash remark about how “Oh no Orson can swallow pills he swallows pills all day long, definitely definitely make sure that he gets a pill form.” She says, “OK if you’re sure no problem. You’ll have to cut a pill in half  for his dose but it will work.”
Orson getting his reconstituted antibiotic through
his g-tube.
We pick up the med and Orson goes to swallow the pill. It’s a different texture, size, shape, and taste from the 25 or more enzymes he swallows a day. He panics. He freaks out. There is lots of water gulping and freaking out and panicking. The tussle ends with his half melted antibiotic spat out in my hand and Orson in tears.
I then get my newly acquired much appreciated second hand “Silent Knight” pill crusher (hospital grade baby, hospital grade) and crush the remaining dose of his antibiotic and administer it through his g-tube. Super duper lucky that Orson is equipped with a trap door, per say, but super duper dumb of me to insist on a pill form when I could have easily accepted the chore of administering the liquid in the first place. But no brash Mom has to be a bragger about how Orson swallows pills like a champion creating a whole lot more work than necessary.
So now I’ve accepted my fate with twice a day dates with the Silent Knight (and 8 more syringes to wash and hopefully not fish out of the garbage disposal) when Orson hits another snag. His mental experience of trying to swallow his antibiotic and not being able to has been replaying over and over again in his mind. Before I know it he has full blown one hundred percent pill swallowing amnesia and fear. The boy who usually swallows literally 25 to 30 pills a day and has been doing it since he was two can no longer swallow any pills. Zero.
So know we are back to him trying, crying and slumping his head on the table in defeat. Then back to me encouraging, begging, pleading, yelling, banging my fist on the table ineffectively, pleading again, explaining, encouraging, and finally putting myself in time out in the pantry to say a prayer and try again.
He won’t take the enzymes on apple sauce like the baby does, he won’t open them into a cup and swallow the beads, and I’ve clogged the extension piece to the g-tube trying to get them through it with a mixture of applesauce and water. If he doesn’t somehow get enzymes into his gut with the food he eats he will become the mayor of diarrhea town complete with major stomach cramps and not to mention getting zero nutritional benefit from his food.
I can’t help but think that if I would have just agreed to the liquid antibiotic in the first place this mess would not exist. But the pantry prayer along with several others helped us to find a way to help Orson get his enzymes through the g-tube and eventually help him take them by mouth. He’s still not swallowing pills again, but at least he’s not having to get them through his g-tube every single time he eats.
This pill swallowing amnesia ordeal along with adding six new pills to Maelee’s daily regimen and an inhaled antibiotic in the same week, put me in a similar mental situation as Orson in regards to replaying a failure over and over again in your head until you’re useless to stop the negative flow.
My medicine bag for the
trip in full mess glory.

It also so happened to be we would be leaving on a super fun Sea World adventure trip with some friends in 48 hours. In my head I couldn’t help letting the fear/worry/and anxiety emotion overwhelm me as I tried to get us packed to go. Would I remember all the medicine and equipment? Would I look like a wacky pack crazy weirdo in front of my friends trying to pull it together and get the meds administered?

In the end the trip was a blast and the medicine was administered as properly as vacation allowed. Did my friends care that I was a wacky pack weirdo, nope. I think they knew that about me before we left, ha ha ha. I allowed my over anxiety about the medicine to block some other necessary preparations for the trip, like the all important beach day. But we did just find without all our cool beach gear that sat in our garage instead of being used on the trip. Oh and I had to borrow sun screen of all things because again I had this unnecessary mental block about failing with meds on the road.
My brash words and SNAP did eventually happen on the trip. Everyone was minding their own business vacationing it up when BAM I when nuts when the whole milk we packed ran out in the fridge at the beach house.

My tension avoiding husband and my weirdo pom pom kimono.
I told you I dress like a wierdo...and LOVE it!
I found myself in the same situation as the day we stood in the gate of our community pool and I lost it when my kids tried to go into the hot tub with some other kids. No one understand the dangers of a hot tub/Jacuzzi to the CF population until they’ve heard it explained by their pulmonologist. Once you’ve heard the explanation you do everything you can to avoid them (that’s why we call it the germ pool and my kids are the only ones not allowed to go in it, which they’ve accepted at this point 5 years later). The other pool moms had to look away in awkward tension as I lectured my kids on not going in the hot tub while their friends played happily in it. It was one of the first times I found myself becoming that one mom who creates awkward tension and is a wacky pack weirdo (don’t worry I’ve started to dress the part with pom pom trimmed summer kimonos all year round).

No but seriously I freaked out about the milk. It was so stupid of me but hey, pobody’s nerfect. I just needed the supped up dairy calories for my two girls (if Orson would drink milk without a battle I’d want it for him too of course) who weren’t eating as well as they do at home and of course for the babies bottle. Thank heavens my chivalrous tension avoiding husband was on the trip and gallantly rode his white horse to the store to get me more milk and half and half while I stewed in the tension mess I had made. The good news is my clouds cleared and my friends accepted me anyway as the wacky pack weirdo who wears pom pom trimmed summer kimonos all year round. Now we can all make jokes about Kamarah being like Gollum on Lord of the Rings only about whole milk and not a powerful magic ring.
I am grateful for the world that Heavenly Father has built for me and the people I am blessed to be surrounded by. I am grateful for a break from the grind and I am grateful to be grateful for the stockpile of medical necessities we have here at home, and a fridge full of milk. Milk, milk, milk…….my precious.   

I was in love with the adorable walk way into the beach house.

A sand angel for Nana.

Same place Frank and I took sunset pictures on our honeymoon
on this same beach 14 years ago.
We flip for dolphins!

One cool shark lover.