thankful thursdays 5/25

May 25, 2017 by

I met with my geneticist, Dr. Ball, at Primary Children’s Medical Center, on Monday. It is a pretty big deal to meet with him. It is a big deal emotionally, physically, and mentally and I’m still recovering days later. It’s time to take some time to focus on gratitude.

  • I’m grateful there is a geneticist in the intermountain west who knows EDS inside and out.
  • I’m grateful Kez and Dallin took me down to SLC and listened to me go round and round about how maybe the whole thing is in my head. They may have laughed at me, but they listened and helped me sort through the tangled web of thoughts running on repeat in my mind.
  • Sunshine is feeding my soul. Oh my goodness, I love the sun streaming through my windows, shining down on my body, and glistening through the trees.
  • Dallin. This young man has my heart. He is Keziah’s best friend and we love him. His goodness brings me so much joy.
  • We had a crazy windstorm on Wednesday and lost hundreds of branches and one big tree. I’m so grateful nothing came through our windows or roof or smashed our cars.
  • I can feel the stem cells kicking in and energy is starting to increase a wee bit every day. I’m still super exhausted, but I can feel a difference and others are seeing a difference.
  • My dear Richard. He is working so hard, so many hours trying his darndest to make ends meet and to take care of all of us. He comes home wiped out, but still plays catch with the kids, does laundry, cooking, or whatever else needs done, and most of all, he loves us. He is almost done with the school year and it will be so, so good for him to have a bit of a break.
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thankful thursdays 5/18

May 18, 2017 by

Once upon a time I wrote a Thankful Thursdays post nearly every week. Somehow I got out of the habit of writing them (or even blogging in general) and I miss it. I miss my Thursday reflections on gratitude. I miss being able to go back and read my posts. So, I am going to try again to cultivate this weekly habit.

My heart is pretty full this morning. Yesterday I was able to spend the afternoon with Kat and Jessica on a Costco run and buy some much needed food and supplies for my family. Spending time with these dear friends is comfortable and soothing and hilarious all at the same time. Then, last night, we had a delicious dinner of ravioli cooked by Dallin and Kez, and then family game night. We laughed so hard. I must have really needed some laughter because I laughed all night long, through all the games and family discussion of a towel problem we are having and actually all through family prayer as well. (Richard thanked God for the moisture we received and all I could think of was Jessica’s flailing arms whenever she talks about people thanking God for moisture instead of actual RAIN or SNOW. I couldn’t get her voice out of my head and I giggled all the way through the prayer. I think God has a sense of humor and didn’t mind my laughter.)

  • Trees. The trees in my yard are all leafed out and the view from my bed brings me SO MUCH JOY.
  • Stem cells. After last week’s injections, I can already feel them starting to work. The dysautonomia is calming down – yesterday I was able to eat and feel pretty normal afterwards!
  • Speaking of stem cells, I’m so grateful for Tami taking me to Mexico again and again and again and making it possible for me to receive this much needed therapy. There is no way I can get there on my own or take care of myself while I am there. She is such a huge blessing in my life!
  • My mama. We had a pretty big scare with her this weekend having a severe pulmonary embolism. I’m so thankful to be her daughter and that she is still here with us.
  • These precious souls God has given me. I am often at my grumpiest with my husband and kiddos and they have plenty of opportunities to learn how to forgive, but I love them fiercely.
  • Blythe’s music brings such joy to my soul. She is super busy right now, but every day she sits at the piano and plays for a few minutes.
  • My sister. Oh, I love her. She is strong and giving and has a heart of gold. I was just privileged to spend a week with her – what a treasure!
  • I don’t have a green thumb in any way, but there are flowers blooming in my yard and I love their bright, cheerful colors and determination to survive a cold, windy spring.
  • Kat and Jessica. I didn’t feel like getting out of bed yesterday and really didn’t see how I would manage it with as much pain as I was in, but my friends loved me through the pain and took me shopping at Costco. I truly don’t know what I would do without Kat and Jessica. Their commitment to loving me with all my faults and annoying over-the-top craziness has blessed my life in ways I cannot express.

Life is good. Beautiful and hard and frustrating and blessed and joyful. So, so good.

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he carries me

Apr 4, 2017 by

I had a pretty big epiphany this weekend during General Conference. I started to have this epiphany during the 2015 October Conference when President Monson seemed to nearly collapse at the pulpit, but it came even more strongly into my heart and mind this time.

President Monson, our prophet, is not doing very well physically. Richard and Dallin told me that at the Priesthood session on Saturday night, he only spoke for a few minutes and his words were so slurred that captions were used so the audience could understand him. On Sunday morning, he again spoke for just a short while, but his voice was clear and strong and completely understandable. He was able to announce five new temples and share a message on daily scripture reading and pondering. He did not attend the Sunday afternoon session because he was too weary.

As his situation settled into my heart, a new understanding of my own life started growing. So very often, I can muster the energy, the capacity, the presence to show up and do something big…like present at a conference or teach a class or throw a party or go on an adventure. But then I crash. Hard. I will pass out, have seizures, spend a whole day in bed, stop digesting food, have a crazy heart rate, or the whole shebang of other symptoms of dysautonomia. I often think to myself, I must be making this whole thing up. Because if I can get up and do the BIG THING, whatever it is, I should be able to do big things all the time and be just fine. So, I must be making this up or wimping out or just not having enough grit to do ALL THE THINGS.

This may be a long-term struggle for me, this internal yo-yoing back and forth, but as I heard his voice on Sunday morning and stared at his empty chair on Sunday afternoon, I felt God whispering comfort and peace to my soul. I felt Him telling me that He is helping me do the BIG THINGS and that just because I can sometimes do them does not mean I can always do them.

My mind still doesn’t really understand how I can do a thing one day and not be able to do the same thing the next day, but somehow, in those sacred moments of Conference, He let me know it is the reality of my life and that I am not making anything up, am not a wimp, and am certainly not lacking grit. He helped me to understand, through watching our brave prophet’s example, that He can and will sustain me in doing the big things, at least some of the time.

Beautiful lesson from my loving Father.

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five days till our hugs

Mar 30, 2017 by

Our girl comes home in FIVE days. Oh, my goodness! It is so hard to believe that her mission, the thing she prepared for her whole life, is coming to a close.

I had all sorts of goals for while she was gone. I was going to lose twenty pounds. I was going to be not passing out, not injured…I was going to have made so much improvement physically that we would both know it was a mission miracle. I was going to make her a quilt with all sorts of cool mission pictures on it. I was going to have a darling room for her. I was going to have all her emails and photos printed out and made into a book. Certainly the yard would be de-junkified, the garage organized, and the house clean. At the very least, all of her weekly emails would be posted here on my blog for the sake of posterity.

The reality is that none of those things are going to happen. Perhaps some of them could have happened if I hadn’t been hit hard this month with new injuries and dozens of passing out episodes. We are focusing on surviving and thriving on the essentials…morning snuggles, nighttime read-alouds, and people fed some sort of sustenance (most likely not made by me).

Instead of the aforementioned list, our missionary will come home to a real family with real challenges and heaps of love for her that will be shown with lots of hugs, homemade signs, listening ears, and maybe some ice cream. The Pinterest version of a missionary homecoming isn’t all that necessary and I probably shouldn’t have let myself go down that road in the first place since I can’t even figure out how to make dinner or write a blog post on any sort of regular schedule.

Richard has been able to rip out Keziah’s poorly organized closet and build a new space that we are hoping will hold two young ladies’ clothing. Keziah has purchased two new twin beds for both of them and we were able to get new mattresses and bedding. So, she has an awesome place to sleep and a place to put her clothing. Total win, right?

In other news, my body is a mess right now. A hot mess. On the 10th of March, while STANDING and watching Annesley dance her heart out at an Irish Dance performance, my foot dislocated AND a ligament tore. I was doing NOTHING at all, just standing. The next day, while shifting myself in bed, I reinjured my right hand that we have spent the past 17 months healing. I had been out of my splint completely for two months and had been working out of it for about four. It is SO sore. I am back to not being able to write or mouse or do my hair. My foot is incredibly painful. I spend a lot of time in my wheelchair. When I do walk, I am hobbling around, all taped up in an effort to hold the bones in place. My left hand is still in a brace from the fall on October 29th and my left shoulder, though much better since the stem cell shots into the subscapularis tear in January, is still hurting and not able to do much. On top of all that, these new injuries have wrecked havoc with my nervous system and it is going haywire. The prior issues of food not digesting, heart rate skyrocketing and plummeting, passing out, seizures, and constant exhaustion are now pretty constant and I am tuckered out.

This is NOT the state I wanted to be in to welcome my girl home. But it is reality. It is the ride we are on right now and I am determined to make the best of it and not give in to despair and throwing in the towel. January and February were amazing months where I felt normal and capable and had SO MUCH HOPE that I would never pass out again. Everything changed in March and I am learning once again to turn to Him, to listen to His voice of peace and love, and make the best of what I do have control over.

Five days till we get to hug our girl and listen to her stories. Five days to make peace with the reality and NOT make my family crazy for everything we are not.

Life is good. For realsies.

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the perfect dream

Mar 19, 2017 by

Papa: Wake up Annes. It’s time to get ready for church.

Annes: Oh, papa, why did you have to wake me up? I was having a perfect dream in my dream world.

Mama: Come and snuggle with me and tell me all about your perfect dream.

Annes: Well, I had two horses in the back and I built them a place to live and they loved it here. And you passed out, but you didn’t dislocate any of your limbs. And papa had three days off from work, but he made the same amount of money each day as if he had worked the whole day. It was aaaaammmaaaaaaaazzzzzzzing.

Mama: What a lovely dream.

Papa: That IS perfect!

This little girl of mine is so precious to me. She is full of spunk and joy and courage. She has grown up with my dislocating, passing out body, and wants to fix it. She often snuggles up with me and says “Mama, I wish your body worked better so you could play baseball with me.” or “Mama, do you think you will ever be all better so you don’t pass out and shake any more?” or “Mama, I don’t like watching you shake, it scares me.” She has had to face big stuff in her short life. She is often the one with me when an episode starts and calls her papa to let him know I am passed out again. She hears us talking about money and jobs and the frustration of the whole situation. Her dream world is trying to make sense of it all.

Mine too, baby, mine too.

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bfg

Feb 11, 2017 by

Last night we watched The BFG. With the dirth of good family movies available at Redbox last night, I decided the only one that looked worth our time was The BFG, so I broke my cardinal rule of requiring my family members to read the book before watching the movie. I have such fond memories of the book, but have never actually read it myself. In 5th grade, when my family was falling apart, my teacher, Mr. Longmore, would spend the hour after lunch reading to us. He sat on a super-tall stool and crossed his super-long legs and as he read, he created magic in my heart. One of the books he read to us that year was The BFG and as he was nearly giant-sized himself and took a special interest in me, I easily pictured him as the BFG.

We loved the movie. So much. Annesley even got up at 6:00 this morning to get her Saturday jobs done so she could rewatch it before we take it back today. Total winner.

And when we woke up this morning, Annes had written this note.

Who is your BFG? My BFG is my papa. He is loving. My papa loves me. He loves to fish. My papa’s big fish is big. I love my BFG.

And then a drawing of Annes and her papa, AKA her BFG, with tons of hearts and BFGs all over it.

Ah man, this girl. She is full of love and life and so much delightfulness. I’m so grateful to be her mama. A big thanks to Mr. Longmore for being a BFG in my life at a time I so desperately needed him and to my husband for being an ever-present force of love in my life and the lives of our children. BFGs are all around us!

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