I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, 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.

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