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thankful thursdays 5/25
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.
thankful thursdays 5/18
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.
he carries me
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.
five days till our hugs
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.
the perfect dream
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.
bfg
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!
eyes to see and ears to hear
Perceptions are a funny thing. They determine how we see things, how we understand the world around us, how we evaluate other’s motives, and yet, they are so often wrong. Last night I had one of those moments when I realized, once again, how incorrectly I can perceive the world.
Last night was our Ward Christmas Party. When I finished eating, my heart rate went up like it usually does, and I leaned back in my chair and tried to relax and think calming thoughts to help it come back down. But all the stimulation of kids running around, people talking to me, and the mass chaos of hundreds of people being in the same room together were too much for my nervous system to process. I tried closing my eyes and breathing deeply for awhile and that helped it calm down somewhat. Eventually Richard left to go figure out a way to get our car right up by the door and I counted heartbeats, willing them to sloooooowwwwww down and tried everything I knew to calm my system. The men were all working hard taking down tables and chairs, but could see something was wrong with me and left my table and chairs alone.
Fisher, my dear son who hates to be an inconvenience to anyone, came over and said, “Mom, can you move?” Barely lifting my head, I mumbled, “No, no I can’t.” I thought, “Oh, my heavens, can’t he see I am on the verge of passing out? Does he really care more about inconveniencing the men putting away tables than he does about my body’s needs?” He asked again, “Mom, can you move?” Again, I mumbled “No” and tried to get him to understand that I wasn’t using the table and it could be put away as long as they didn’t move my chairs or try to move me. Not satisfied with my answer, he persisted, “Mom, can you move? They are playing basketball.” In my nearly unconscious state of mind, I nearly exploded inside thinking, “Seriously! He is wanting to play basketball when I am having an episode? He wants me to move so they have more room to play!” But I couldn’t say anything because I was fighting with everything I had to stay conscious and calm. Finally, he said, “Mom, I’m worried the ball is going to hit you and hurt you. We’ve got to move you because they are playing basketball.”
I opened my eyes and looked around and saw that there was a group of teens playing basketball and I was right on the 3-point line. They were running all over the floor and the ball was flying wildly near me. I had had no idea any of that was happening and the boys had no idea anything was wrong with me, they were just trying to have fun. Grasping the situation, I told Fisher, “I can’t move, so you are going to have to protect me from the ball.” His response, “That is what I have been doing, I just think you would be safer if we could move you away from here.”
Oh, my goodness, the tears of gratitude welled up inside me for this good, good boy of mine. He wasn’t embarrassed of me. He wasn’t worried about inconveniencing the clean-up crew. He wasn’t wanting to play basketball and have more room on the court. He was watching over me and protecting me without anyone asking him to and without me even realizing what he was doing.
So often I respond too quickly, long before I understand the real situation. I am grateful for a body that was unable to speak and lash out in irritation and was instead able to hear his quiet voice, full of love, trying to help me.
Eyes to see and ears to hear and hearts to understand…those are the gifts I yearn for.
p.s. Yes, I did pass out a few minutes later. As we slowly made our way out to the car, my body collapsed in the hallway with Richard and several other men catching me and taking care of me. I am surrounded by angels, both heavenly and earthly ones. Thank you to those of you who so willingly walk this journey with me.
annes is 9!
It feels like a gazillion years since my baby was born nine years ago. It also feels like it was such a short time ago that I held her in my arms for the first time. Surreal.
My entire life has changed since she was born. Our family has grown up. There are no more diapers, kids needing help getting dressed, bathed, or fed. There are no more board books, burping, or putting on their shoes for them. They are all big and capable and my role as mother has changed from caretaker of physical things to nurturer of the soul (and let me tell you, soul caretaking is hard for me).
I remember so clearly the fear and faith that surrounded her pregnancy and the joy that came with her birth. She looked at me with her big blue eyes and told me, “It’s gonna be okay.”
And you know what? It has been. The past nine years have been full of incredible challenges, immense mountains of love, poignantly tender miracles, and so many experiences I would never have chosen, but am grateful to have learned from.
Annesley has never had the privilege of having her papa have a schedule where he can spend lots of time with her as he has worked long hours six days a week her entire life until this fall. She doesn’t remember her mama not being sick or broken because the breast lump happened when she was 3 1/2 and right after recovering from that is when the EDS challenges began in earnest. She has had to face hard stuff and she has done it with laughter, love, and light. Annesley’s spirit is huge. She spreads joy everywhere she goes with her big smile and loving heart. We adore her to Pluto and back.
She has been totally in love with Leonardo da Vinci and inventions for months, so her birthday book this year is Cleonardo, The Little Inventor. It is a darling story of Leonardo’s granddaughter and her awesome invention.
She is still in love with Adventures in Odyssey, fishing, hiking, music of all kinds, playing the piano, drawing, soccer, football, baseball, and Irish Step-Dancing. Her dreams are big and she has endless confidence that she can do anything she sets her mind on. She recently was able to go on a date with her papa to an Irish performance and loved every minute of it. She couldn’t help but dance in the lobby during intermission and I was told she put on the quite the show!
This morning she opened her presents – a tackle box, her first set of Prismacolors, and a doodle book. Keziah and Dallin took her ice skating this afternoon and tonight we will enjoy her ice cream cake creation – Mint Oreos, a layer of chocolate ice cream, and a layer of Breyer’s Mint Ice Cream. She has been planning it for months.
Miss Annes reminds me so much of myself. She looks just like me, has oodles of interests, and is full of zest and sass and sparkles of happiness. She has adopted most of the elderly people in our church congregation. She makes them cards, takes them presents, and loves to go over to visit. They shower her with love right back.
Here are some pics from the last year of her life.
Christmas Jammies from Grandma Dorothy – Star Wars!
Snowboarding for Homeschool Ski Days
Annesley is so excited to be in plays like her big sisters some day. Keziah’s January play was so fun!
Provo City Center Temple Open House in February
Liberty Girls Icicle Finding
Liberty Girls Fancy Tea Party for Purim
Going to General Conference with her dear friend, Olivia and big sister, Keziah.
Scheel’s aquarium on the General Conference trip.
Playing the piano and singing at the top of her lungs.
Swim Camp 2016 – What a great way to kick off the summer!
Rock Climbing with friends – she’s a natural!
Smith Reunion and visiting Grandma’s and Grandpa’s graves.
Reading The Rise and Fall of Mount Majestic – our summer read-aloud. Snuggling up and reading for hours was our favorite way to spend the morning hours this summer.
Camping, hiking, fishing and snakes galore. Oh, how she loves the outdoors!
Daddy-Daughter Date with her papa at church.
Fisher’s Birthday Hike at Cave Falls
Our first ever family bike ride since I was injured in 2012. I rode my Elliptigo and everyone else was on bikes. I only made it about a mile, but let me tell you, it was glorious!
Climbing trees at Fairy Land – our favorite spot at the greenbelt.
End of Summer Party at Lava – speed slides are the best!
Her new Irish Step-Dancing Class – yes, she is the youngest and smallest! She loves it! She hardly walks anymore and prefers to do one-two-threes everywhere she goes.
Cousins holding hands at the Star Valley Temple Open House in September.
Thanksgiving sledding with cousins, Easton and Oaklyn.
Last hugs before we came home yesterday.
We are so, so grateful for this girl that God sent us at what seemed like the worst time. We need her sunshine! It is so much fun being her mama! She has had a wonderful year learning and laughing and having fun. May she have many more happy, happy birthdays.
week 40
Celebrating the 4th of July without my freedom-loving girl was kind of strange. She is still in America and was able to see some fireworks. I love to hear her stories of teaching. Sharing the message of Christ a beautiful privilege.
Aloha, y’all!
We had two pretty cool lessons this week. We came over to teach a lesson to a friend of someone in the ward and it was really spiritual. The friend had already been reading the Book of Mormon, and it went really well. He had a lot of good questions. We have to pass him off to the Saddleback YSA district, but it was still pretty cool.
We also taught our investigator on Sunday. Her name is Venus. She has a 7 year old son and she is really prepared. She has a really hard time getting work off Sundays, so she hasn’t been able to make it to sacrament, but she came to RS last week and this week to Gospel Principles and Relief Society. She had a really great experience there and loved the lesson, which was on ministering angels. It was really great and she was able to meet some of the members. They just welcomed her in. It was really good. Then we took her to the Music Devotional and for a tour on the temple grounds and she really felt the Spirit. We ended up having a couple young women from my previous ward there, they were awesome on the tour and it went really well.
Zone activity yesterday was pretty fun. We did it late because they wanted us in before all the crazy people got their 4th parties on. So we hung out at the stake center and ate food. I laid on the floor with some others and we talked about random stuff, which was pretty much all I wanted to do. Then we heard the fire works start. The church sits on a big hill and looks over pretty much the entire valley, so we could see maybe 10 shows going on. It was pretty great.
Love you guys!
Sister W.
week 39
This letter is from June 27. I am so grateful she has the opportunity to learn to love people from all sorts of backgrounds. It is one of the most important lessons of this life – loving those who are different than ourselves.
Aloha!
This has been a good week. We are teaching Brandyne, a long time less active member who has had a pretty rough life. Her dad abused her, her son and husband died, and her family and herself really fell apart. She’s made a lot of wrong turns, and has been absolutely miserable. A while back she ran into the missionaries, and was at a pretty low place, and wanted to meet with us. She’s about to have another baby, and she really wants to give him a better situation. If we had talked to her about God a few months ago, she would not have had ears to hear, but now with the path she has walked, her heart is starting to open. After all this time, she finally has the desire to repent, and have God in her life. There’s still a long road, but she is finally seeing the light. We taught her twice this week.
Venus is great! (She is a referral we received several weeks ago. Her co-worker is has been talking to her for a while, and she finally decided to meet with us. She’s SO ready, and is very close to the spirit. Her 7 year son is named Daniel.) She was not able to come to church this week because of her work schedule again, but she used her lunch break to go to Relief Society in Live Oak Canyon, close to her work. She is wonderful. She just has so much hope, even though she’s had a lot of trials. We are so excited! :)
Diana is great, too. (She’s the one we taught a couple weeks ago, but her husband isn’t ready for the gospel yet.) We stopped by to visit with her this week, and talked to her for a while. She is so sweet, and wonderful, and just loves us so much! If her husband wasn’t opposed, I think she’d be happy to be baptized. As it is, we’re praying for her husband’s heart to be softened. We’ll do what we can in the meantime. She is so awesome. Every time we see her around the community she gets super excited! We love her.
We had a funny experience this week. We were tracting in a part of our area that a lot of Hispanic people live and their houses are all sort of clumped together. We met several really great people out there, and one guy who argued/bashed us until we could leave. So we got there and there was this little girl playing outside her house and she was really excited to see us for some reason, so we said “hi,” and proceeded to knock on the doors, and she followed us, and we kind of wondered what to do. So we walked up to a door, and she says “You’re going to my house?!” really excitedly. There was some guy inside her house fixing something, and he was super awkward. He said “I don’t live here. Ah, let me get the lady who lives here” and he was trying not to talk to us. So turns out the girl’s mom is sleeping or something, so we told her we’d come back some time to see her mom. So then we walk away, and she keeps following us. All the doors face each other, so we were only like 15 feet from her door. Each door we walked up to, she’s say “This one is [blank]’s house. It two buttons (doorbells),” “This one has no buttons” “This one has 1 button” etc. It was pretty cute. We told her we’d have to come back when her mom could talk. It was pretty interesting.
Love,
Sister W.
I'm Tracy, a mama with big dreams, crazy ideas, loads of laughter, an insatiable desire to learn, and enormous piles of laundry.
