Just What I Needed!

I am grateful to know that I am a child of God. He loves me! He lays blessings at my feet for me to pick up. One of those blessings came tonight when I got to go to the General Women’s Meeting with my daughter, sister, and my mom. I know there will be a time in my life when I won’t be able to attend a meeting like that with all of them so its very special to have had the chance tonight.

Anyone who needs uplifted, encouraged, assured of God’s love for you or just to feel a bit shinier should listen and or watch the meeting. An hour and a half very well spent. Plus this meeting is an exciting stair step to next weekend when we get to enjoy General Conference!

My method of taking notes in this meeting (not a new idea I realize) was to pull out pieces of things that struck my heart. Unfortunately I did not write down the names of who said what. Here are some of the pieces I picked from tonight.

-“Looking out through Heavenly Father’s window,” was such a sweet way of saying that how Heavenly Father sees us is not how we so often see ourselves or others. While from my window constantly pick myself apart and see myself as immensely lacking, He sees me through his window as someone who is trying hard to not give up and waiving and cheering to me to keep on walking and whispering good ideas to my heart. “Don’t you give up, you keep walking…believe in good things to come” (that is one from J.R.Holland).

-“Find the peace to breathe again,” puts into words what happens over and over again as I go through the human cycle of hitting low mental places and then finally when I stop walking in the dark and turn to my Savior Jesus Christ to literally “find the peace to breathe again.” Loved it.

-“The atonement bears no scars,” was something that I knew but how she explained it and brought it to my mind again made it clear that when I sincerely repent of mistakes I can let go of those things. I don’t have to keep these mistakes, these sins on my shoulders and moll over them and let them continue to push me down. But I can be scar free through the atonement of Jesus Christ.

-“This earth is the time to prepare to meet God NOT to receive all of our blessings,” was an awesome reminder to me to keep my chin up through tough stuff. If I want to be ready to meet God I have to walk down my path, the path He is laying out for me each day, and know that if I keep on walking and trying and looking to Him for direction I will be ready to be with Him again.

I just loved it. I loved that I had the privilege of being there with family. I loved that I had my 8 year old beautiful daughter with me. I loved that every word I wrote down in my notes she quickly wrote down in hers as well. I loved that by her action of copying my notes I had a big huge flashing road sign reminder that she is watching me and I need to be my best. I loved that the whole meeting gave me encouragement and reminders on how do to just that.

 

Playing the Bull Roarer

 

I stared this blog in March to help support the army of kind people behind the April 2015 miracle event for our family. I wasn't sure what to write then, but ideas came. I didn't know if I wanted to keep writing or if I wanted to be done. But here I am 5 months past the event and I still post. Ideas still come. Sometimes they are lame ideas to write about, but nevertheless I continue to write. The posts aren't always about CF, but since I am the creator of the blog I suppose that it is my freedom to write about old TV shows, disastrous family vacations, or anything else I choose.

 

This post is a CF related post. Here is a little update on Orson's button. He does not stop amazing us at his acceptance of this part of his life. What was foreign and we thought we would never get use to, we are use to. There still are some moments of indecision, like "how much detail to be go into this with people." Not like random people, but like a babysitter, or the mom's of friends who house he may be at. We don't want to say so much about it that they totally freak out and are nervous about it (and we look like weirdo's), but they need to be aware of what to do in case of a button emergency (which hasn't happened but, but we have been assured that inevitably eventually it will).

 

I get a kick out of doing this sort of thing so I made a 14 step JPEG in paint to show what we do at night to successfully complete one can of 375 calories. Its a little different when we do the bolus feed during the day, but close to the routine I outline in the JPEG I created.

 

My favorite part, that I think I have gotten pretty good at is the last step in which I attempt to get as much water out of his extension set tube as possible. I swing it around in a circle really fast and it makes a cool sound. I always think of the movie "Crocodile Dundee," when they show a man playing the "bull roarer." Frank laughs because I clearly get a kick out of making the noise with the tubing, slightly immature I suppose but its a pretty cool sound.

 

The part that I especially wanted to include in this button update is a spectacular tender mercy that has happened each night since April 29, 2015 when we started using the button. Ready for this?The alarm on the pump doesn't wake any of the kids up! Each time the bag is empty or if there is a kink in the line a loud high pitched alarm goes off to alert the user. NEVER has this alarm woken up any of the kids! We have all three kids in the same bedroom right now - all very close to the source of this loud sound. Charles on the top bunk, Orson on the bottom bunk, and Maelee is literally in her bed inches away from the pump and the alarm. It doesn't even bother baby Ruby! It is such a special feeling to know that Heavenly Father cares about our kids not being bothered by this alarm, and that they are all able to sleep right through it. Also how cool is that Orson at 3 years old has been given the ability to swallow 2 horse pills in the middle of the night every night? He does it then crashes right back into his pillow and is asleep again in seconds. Totally amazes me every night. Great blessings. Thankful parents!  

 

An Irrational Sense of Project Optimism

      Growing up, my Dad traveled a lot for his job and was often gone during the week and home on the weekends, or sometimes gone for a couple of weeks. It never occurred to me then that my Mom was taking care of six kids without help because she never talked about it being a “burden” or made a fuss about it. Even when she needed to take sleepy kids in the van for a late airport pick up she didn’t complain. We had great music that we would listen to and it would be a party all the way to the airport. Dad would be standing there waiting on the curb at Phoenix Sky Harbor Airport and we would roll up in the van with all the windows down and the favorite song of the season, often “500 Miles” by the Proclaimers, would be blaring and he would laugh at us, throw his luggage in the back and then we would all listen to him talk to Mom about his flight, meetings, hotel, etc on the way home. Always mixed in his stories of his trips he would talk about this or that persons reaction to the fact that he had six kids. He loved telling people that.

      This pattern worked well for my Mom and Dad. They even seemed to thrive on it I think. Mom’s most creative and ambitious energy was unleashed while Dad was traveling. She would paint rooms, tile the kitchen, move furniture around, re-do the backyard, lots of good stuff. I distinctly remember that although she preferred neutral shades (unlike me whose house looks close to an underground graffiti tunnel as far as COLOR goes) it was always important to know the name of the paint color you chose (she liked marshmallow and carnation petal). So besides my paint colors being different (bulls eye red, blue jay crest blue) it comes as no surprise when my husband goes out of town that my mind starts spinning of possible projects to accomplish.

       So this past weekend when Frank went out of town I had a massive mental list of projects. I had chairs to finish painting, a curio cabinet to finish painting, Orson’s top secret birthday present to work on, a book I am reading to finish, a baby blanket to tie, a queen size blanket to tie, closets I wanted to dump and organize, and my most newly acquired project making blouses for myself. It comes as little surprise that most of the things on this list did not get done. I took some bites out of a few, but no where near what I thought I would be able to get done. By the 3^rd night of my insanity of staying up way too late and following a Saturday of being “cranky mom” here came Sunday. What a relief!

       Sunday was such a great day. There has been a substantial emphasis on keeping the Sabbath day holy, and “making Sunday different” lately in many of our church meetings. I am not able to get there every Sunday, get my heart there I mean and the attitude I should have in regards to “church day” as Orson calls it. But today totally worked out. The kids played nicely together. I didn’t stress about getting anything extra done. I focused on food, our “treatments” (aka medical routines), and getting them ready for church. We had fun, it was chill. Everything at church spoken was just what my heart needed.It was a different day, a welcomed different, and my testimony of what keeping the Sabbath day holy can do for a family (and for a Mom with an irrational sense of project optimism) was strengthened.

Plus Dad came home today, and if we could pick a song to play for him to embody the music we have been really into lately as a family it would have to be “Dance Like Nobody’s Watching,” a snappy tune from the PBS Kids Odd Squad soundtrack. Don’t knock it until you’ve tried it!

Thanks Shirley

 The only time I ever went to a women's conference(*see note below as to why my memory of the first time will prevent me from having the desire to go again)I heard a thing or two that stuck with me. One idea related by a speaker at this event, name forgotten because it was 8 years ago, referenced the simplification of her wardrobe. She said that she went on a church mission and was told exactly what to bring in regards to clothes. She had 2 skirts to choose from and 4 blouses. The speaker went on to explain while at first this seemed like a real bummer, in actuality it made her day start of with a simple choice and she could move on happily.

I took that anecdote and related it to my desire to have a certain "style" if you will of a blouse that I loved and then to have it in every color (not an uncommon dream with women I don't think). I have been in pursuit of this goal ever since. I made one attempt at making my own blouses, many of the same style but different prints, a few years ago. I wore them all quite a bit but the fit started to bother me and I ended up cutting up the shirts to make something else.

This week has been the start of my second attempt. Over the past week I have not only been working on this sewing project but have also happened to have 5 different women in my life stop by for various reasons who I have discussed this new endeavor with. Each one provided insight and got me thinking about how to tweak this or that to make what I see in my head happen with the thread (see what I did there with that rhyme).

So finally after 3 different attempts at success I finished the "tunic with a yoke and hidden pockets shirt" (I am working out the name still). I am happy with the results. So happy that I embroidered an official cursive K on the shoulder. This is a personal throwback to growing up watching Laverne and Shirley and loving her classic cursive L on ALL her tops. Without a doubt I am definitely a Laverne. I have paid tribute to my childhood pop culture Laverne and Shirley knowledge several times over the years with an embroidered K, including on my black stylist apron I wore in the salon I used to work at.  

I just decided it would be appropriate to call this blouse the "Laverne top." Thank you to all the Shirley's in my life who encourage me to continue pursuing peculiar projects, AND who still walk beside me in public places when I wear my homemade shirts.

(*Note* I had my first little baby with me. I was terrified to nurse in public and despite having a separate room for nursing mothers provided I still hated it. I also wasn't a huge fan of giving the baby the applesauce and enzymes in front of strangers who like to stare. Also she had gross diapers the whole day and by the end of the conference I was supposed to enjoy I was frazzled from running back and forth to nurse her and change her outfits that kept getting pooped on. A mental block still exists. Desire to attend another conference remains zero at this point.)