stories are light

Dec 6, 2021 by

December 6, 2019 marks a day we made a huge leap of faith and put our trust in God with everything we had.

The end result of the decisions that day were not at all what we expected. We have sobbed and doubted and raged. We have been comforted and taught and edified. We have longed for understanding.

Perhaps you are grappling with a big decision. Perhaps you are wondering if you have courage to do the hard thing you feel God calling you to do. Perhaps you are weighed down by a past decision that didn’t result in what you thought God was promising you.

And that is painful and hard and heavy and foundation shattering. At least it has been for me.

Last week I read The Tale of Despereaux (again, it’s one of my favorites) and two passages jumped out at me as bits of wisdom for these journeys of life.

“He had forgotten how dark the dark of the dungeon could be. And he had forgotten, too, its terrible smell, the stench of rates, the odor of suffering.

But his heart was full of love for the princess and his stomach was full of Cook’s soup and Despereaux felt brave and strong.”

And then this as well:“Do you remember when Despereaux was in the dungeon, cupped in Gregory the jailer’s hand, whispering a story in the old man’s ear?

I would like it very much if you thought of me as a mouse telling you a story, this story, with the whole of my heart, whispering it in your ear in order to save myself from the darkness, and to save your from the darkness, too.

‘Stories are light,’ Gregory the jailer told Despereaux.

Reader, I hope you have found some light here.”

Isn’t that beautiful and oh, so powerful? When you are facing hard things or trying to recover from hard things, perhaps those three things will be helpful.

  • Being in a place of love
  • Feeding your body good stuff
  • Feeding your mind and heart stories of courage and light and goodnessLet’s lift and love and nurture each other through the dark times with love, delicious food, and beautiful stories.
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annesley turns 14!

Nov 26, 2021 by

Happy 14th to Annesley! Such a fun day with presents this morning, then I was able to take Esther and Annes to lunch and ice skating. Then we got home to a big surprise – my mama showed up and totally filled all our hearts with JOY! Then cheesecake and games with the whole gang tonight.

This girl has been such a giant ray of sunshine in our lives and we are so grateful she is part of our family. She loves learning, liberty, acting, music, science, inventions, camping, kayaking, laughing, aerial silks, rock climbing, arm wrestling (and winning the boys), snowboarding, and most of all, spending time with her family.

We love her SO much!

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15 months

May 26, 2021 by

This week marks 15 months post-brain surgery. What a journey of tears and laughter and courage and faith and exhaustion and most of all, of people and God loving us and carrying us through the hard.

Richard is doing so well. He continues to improve in his abilities and we are figuring out how to help him better.

He is working…three jobs actually. One as a behavioral consultant for School District 91, one as a behavioral therapist for a developmental disabilities company, and one as a hospice chaplain. The second and third jobs are only 2-5 hours a week. We are sooooo grateful he has been able to work and bring income into our home. All three jobs are a lot for his brain and body and he is SO done by the time he gets home. He has two more weeks of his school job and we are really hoping his summer schedule will allow him to get some much needed rest and healing in before school starts again in the fall.

He is working on his bike riding skills. He rode four miles two weeks ago, WAHOO! Then nothing this past week because it was play week for Annesley…so nothing extra for his brain because the performances are so hard for him to attend. This week he has set a goal to ride a total of 15 miles! We are looking into getting him a bike with bigger, softer wheels to give him more traction and comfort, but we are still in the testing phase with that idea.

A few weeks ago he started wearing an ear plug in his good ear when he is in a crowd of people. He says it helps his brain to sort out what the important sounds are so he doesn’t get as worn out as quickly. He still can only endure an hour of church and then he has to come home and sleep for several hours to recover.

His eye and nose are leaking more lately. He isn’t sure why, but thinks he is not getting enough rest. We have been really busy with plays and late nights with our kids and with his three jobs, he isn’t resting as much as he needs, so we are hoping the summer schedule will turn that around.

Some interesting things…for your humor needs…and understanding of brain injury…

  • I found out recently that he didn’t wear deodorant for four months! He ran out and thought he would pick some up that night. But he forgot. The next day he forgot. And the next. And the next. For FOUR MONTHS! Finally one day after a really warm day, I noticed he smelled funny and asked him what was up. He confessed that he was out of deodorant and had been for months. I asked him why he didn’t put it on the shopping list and have me or Keziah pick it up and he said that every single morning he would make note of it in his brain to pick it up that day after work and then every single day would forget. I asked why after a few days he didn’t just tell one of us to get him some and he said he truly thought he could remember, but then he would forget again. So hilarious. And a bit sad, don’t you think?
  • His brain has a hard time staying focused on a task. Yesterday I asked him to count some pills to see how many we had left. It took him a very long time because he had to keep starting over because he couldn’t figure out where he was in the chain of counting.
  • A few weeks ago I needed him to replace the load wheels and tracks on my Elliptigo. The project required fine motor skills that were too much for his brain to focus on and he dropped the parts probably 30 times before he was able to get them on correctly. It took him several hours to do a job that should maybe have taken thirty minutes. The thing that amazed me the most was his patience with himself. If it had been me I would have been SO frustrated and ranting, but he just kept picking the little pieces up and trying again and again and again. (Lesson for me – perhaps figure out how to do it myself or have someone else do it next time!)
  • People out in public don’t know what to think of him. They don’t know that he can’t hear on his right side so if we go out to eat or are with people who are trying to talk to him, he can’t hear them if they are talking on his right side. We try to explain that we need them to speak to his left ear and move him so his left ear is facing them, but people don’t understand and either keep talking to his right ear, start shouting, or give up and just talk to me instead. I’m not sure what the answer to this is, but so far we just keep having me tell him what people are saying. I lean in to his left ear and he can hear me just fine.
  • About a month ago, I was driving to Wyoming past several of his favorite fishing streams and proposed the idea of dropping him off and letting him fish for a couple of hours while I was driving and then picking him up on the way back. He wanted to SO much. But he said his brain was too tired to fish especially because it was breezy outside. He said he didn’t think he could handle the sounds from the wind and the casting at the same time. If you know him at all, you know that is a really big deal. I didn’t think I would ever hear such things from his mouth!

I am amazed at his determination to show up for our children and me even when it is really, really hard for him. I am amazed at how he tries so hard to do things around the house even though it completely wears him out. I am amazed he is working three jobs plus all sorts of side appointments with family and friends who need his skills with their children or themselves. I am filled with immense gratitude for his kindness and patience and willingness to keep trying things that are incredibly challenging for him. He doesn’t get mad or irritable with his limitations, just keeps trying.

He has some big goals for this summer. They may prove impossible. At this point, they are looking impossible. But we are all going to do our best to help him make them happen. He really, really, really wants to go on a one night backpacking trip. This means he has to be able to walk on uneven ground for a good distance and carry at least some sort of pack. I told him Fisher and Annesley would carry all the stuff, but he says that doesn’t count (in my mind it totally counts!). Right now he can walk about a mile on paved ground. So walking multiple miles on uneven ground seems impossible. But that is what we are working towards! He also wants to work on bike riding more and be able to ride with us. And he wants to work on his crossbow skills so he can go hunting with Fisher in the fall. All these things are hard. Dang hard. But he is cheerfully determined to keep working towards these goals.

He is my hero. I love him so deeply and am so grateful I get to walk this journey with him.

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missing them always

May 13, 2021 by

Sometimes my heart skips a beat and my breath catches and time freezes when I see our children’s names or see a baby that reminds me of them.

Sometimes I sob.

Sometimes I get quiet.

Most of the time the people around me have no idea I’m dying inside. Not because I’m hiding it, just because somehow I’m in this place of living and grieving at the same time.

Always I miss them. Always I yearn for them. Always they are in my heart.

Last week a cousin on Richard’s side named her baby Saylor…spelled my way instead of like the occupation of a sailor…and it shocked me to see that name on a baby announcement. I was so happy for them AND felt so grief-stricken at the same time that our Saylor isn’t here crawling all over the place and making mischief.

Yesterday I was driving down the street in Afton, Wyoming and saw a sign for a restaurant named Stella’s and time stood still as I gasped for breath. I had Mikelle’s precious children in my backseat and as I dropped them off a few minutes later, my heart broke again.

My friend has a dog named Stella. A precious two-year old named Stella in a neighboring town was just diagnosed with leukemia. A little girl who used to live in our ward is named Stella. It seems there are Stellas everywhere. And it rings loud in my soul over and over again that we don’t have our Stella in our arms.

I recognize that it would be incredibly challenging to have them here given the past year of our life and the reality of Richard’s abilities…and mine, but that doesn’t mean our hearts don’t ache with missing them.

I call Richard on the regular and just cry as he says all the right things. He sees a look in my eyes and he just knows and lets me melt into his arms and sob.

And then we pick up the pieces of our souls and keep on living…which sometimes feels impossible…but somehow day after day it keeps happening. I don’t know how and I can’t talk about it very well, because the pain is so deep, so pervasive that I can’t find words to describe it. But I feel a need to chronicle this journey in some way so there is a record of the heartache.

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lightning

Apr 17, 2021 by

I’m part shrieking with joy and part welling up with tears.

You guys!!! I just played Lightning with Fisher and Annes! I don’t think I’ve ever played basketball with them. They were 4 and 7 when I was injured and really 3 and 6 when I stopped being the fun, active mom my older children knew because I had a lump in my breast the year before I was injured and with the treatments and surgery, I couldn’t do hardly anything fun that year.

I was working. Annes came in and asked, “Mom, do you think you could play Lightning with us? I thought about it, wondering if my body really could do it or not. I knew I could slip and roll my ankle or injure my knee or dislocate my shoulder by shooting, but I checked in with my body and decided, yes, I think I can handle it. Then I had to check in with my heart. A big part of me wanted to keep working and finish what I was doing. And then this other part of me yelled, “Get up and go play with your kids! They are asking you and this is a beautiful opportunity to be WITH them. Do it!”

When I said, “Yes,” she screamed, “Really? Really? You’ll play????”

So I did. And we laughed and ran and shot and breathed hard and I even won once! At one point I made three free throws in a row!

SO FUN!

I hope we do it more often. Maybe a nightly ritual? Surely at least weekly. And I hope they always remember this joyous moment in time of this first game. Day by day, they are getting more light in their eyes and joy in their hearts as they see their mama and papa getting stronger and healthier and more capable. They pretty much gave up all their hope last year when Richard was diagnosed with a brain tumor. It was just too much for them to face their mama having EDS with years of injuries and passing out and then their papa to face such an unknown future. But every little bit of progress we make lifts their spirits and helps them see life is full of hope and miracles.

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one year since carl’s eviction

Feb 27, 2021 by

One year ago today we walked into the University of Utah hospital to evict Carl, the vestibular schwannoma that invaded Richard’s brain and was compressing his cerebellum and brain stem. This type of brain tumor happens in .001% of the population. Such crazy odds that this would ever happen to anyone and yet, our lives seem to be full of extremely rare happenings, so this probably shouldn’t have shocked us so thoroughly!

This year has been dang hard and deliciously sweet. We have learned powerful lessons of deliverance, poured our hearts out to God, been carried by our friends and family, fallen in love more deeply, laughed hard, cried hard, hurt more than we ever imagined, spent more time together than we ever have before, and are slowly figuring out our new life.

That day was full of trepidation, fear, and a whole lot of faith. This day is full of awe and gratitude.

That day we couldn’t see how God’s promises could possibly be fulfilled. This day we stand as witnesses that He is mighty to save – that He can and does work miracles of deliverance in our lives.

That day we didn’t know if Richard would be able to walk again. This day we are thrilled that he can walk and ride his trike and cast his fishing line into a stream.

That day we had no idea how we would pay our bills. This day we cry tears of gratitude at the generosity of so many who reached out and rescued us. We are so grateful for the Go Fund Me and many private donations that paid our living expenses for several months and removed that burden and worry from our minds.

That day we didn’t know if Richard would ever be able to work again. This day we rejoice that while his abilities have changed and his endurance is much lower, he is able to work.

That day we didn’t know what work I would be able to do to provide for our family. This day we are amazed at how God has worked out all those details and shown me how to help people with their gut health, change their lives for the better, AND stay home with our children.

That day we didn’t know how our children would handle the stress of their father having brain surgery. This day we know they are strong and brave and while it has been an incredibly hard road for them, we are so, so grateful they have each navigated through big emotions and come out the other side with a deeper knowing of who they are and who He is.

That day we didn’t know if our hearts would ever recover from losing Saylor and Stella. This day we still don’t know and we hold each other tightly and cry on a regular basis for our precious babies.

That day we had no idea how many people in our lives would have brain tumors. This day we are full to the brim with gratitude that we have been able to reach out and help so many others on their own brain tumor paths.

That day I felt like I might die under the weight of what I was carrying. This day I’m better able to give that weight to God…still learning.

I’m grateful for this year. We have spent more time together as a family than we ever have before. We have laughed and played and loved and cried and prayed. We have learned more about suffering and more about joy. We have been tutored by the God of the Universe. We have been loved deeply and well by hundreds. We have been carried.

Thank you for walking this journey with us. You have no idea how much your love has done to lift our hearts and fuel us with courage to keep moving forward.

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thankful thursdays 2/18

Feb 18, 2021 by

Today is a good day. A tender day. A day my mind is drawn back to nine years ago on February 17th, 2012 when I was able to run and do back handsprings and had no idea what was coming in the next few days. Today my heart is full of gratitude for all of it. I know I have some amnesia regarding the pain and the anger and the sheer hardness of it all, but my heart is full of gratitude nonetheless.

  • I’m grateful for the opportunity to experience exquisite pain and see that it’s possible to come out the other side. Many times I didn’t know if that was possible. But now I do and that knowledge will strengthen me forever.
  • I’m grateful for the love that has been showered down upon us regularly. I cannot adequately describe how much the notes and hugs and meals and money and smiles and encouragement have done to carry us through.
  • I’m grateful for stem cells – what a gift these have been in my life. They have helped my body heal from so-called unhealable injuries and given me hope of having functional life again.
  • I’m grateful for Tami, who has taken me to Mexico fifteen times. I would not have been able to go without her. Her sacrifice for me can never be repaid. Every time you see me living and doing think of her and how she took care of me trip after trip.
  • I’m grateful for Plexus. These supplements have helped my body feel like me again. Priceless!
  • I’m grateful for the utter desperation that drove me to God because I had no where else to turn. My relationship with Him is sweet and soul-filling and completely worth the hard.
  • I’m grateful for my friends and family who have been there for us each step of this journey. So many times I had nothing more to give to this fight and someone would show up with a hug or a smile or a plate of cookies or a meal or money for treatments and my courage would be refueled. Thank you, thank you, thank you to each of you who have lifted and loved us along this journey.
  • I’m so grateful for our children. They have had to do hard things, face big fears, and carry a big part of the workload. They are each remarkable humans and I’m so grateful for their courage and tenacity and love and patience. May they always know how dearly I love them.
  • Last of all, I’m grateful for Richard. This man, oh, there are no words to describe how good and strong and kind he is. He has loved me without frustration and served without even a hint of complaint…and instead serves me with joy. He has cried with me, held me, cheered me on, and helped me stay sane. He is my superhero and my dearest friend. Oh, I love him!

Tomorrow I’m thinking of trying to do a back handspring at gym to commemorate the day. I just don’t know if I dare.

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thankful thursdays 2/4

Feb 4, 2021 by

Today is gloomy: overcast, cold, and full of a big to-do list. I don’t love to-do lists. They feel restrictive for this carpe-diem loving soul of mine. I got on here to update the Swim Camp Registration page and read through a few posts and remembered how dear this space is to me. I’d like to rekindle it and I think I’ll start by focusing on Thankful Thursdays once again.

  • I reread Charlotte’s Web this week for the umpteenth time. Oh, my goodness, I love this book. The simple days in the barn, tranquil days of childhood, Wilbur’s pure soul, and Charlotte’s rescue of his life always bring me joy. Last night as I finished the last little bit and Charlotte died and her children were born and then flew away, I cried and cried. I’m so grateful for this beautiful story of friendship, childhood, and wonder.
  • I’ve been rereading a biography of Harriet Beecher Stowe for a while now for my WUBA class. Oh, how I love this woman! Her courage, tenacity, and faith inspire me to live more fully and with more dedication. Her book changed the course of America and I’m forever grateful for her writing of Uncle Tom’s Cabin.
  • Speaking of WUBA, oh, it’s such a privilege to mentor my students! They blow me away with their humor, goodness, and determination to learn and grow as scholars.
  • Today I’m really grateful for a warm home, food, and working vehicles. One of our vehicles broke down today and while I’m hoping it isn’t a huge deal, I’m just so grateful to have other vehicles that are working.
  • I’m grateful for the everyday moments with our children. Fisher asking me to help him with something, writing papers with Annesley, hearing them laugh, or Annes coming in for morning snuggles, oh, I love these little moments of connection. I’m so grateful for each of our children and as they grow, I feel like every moment gets more precious.
  • We gave Annesley a ukulele for her birthday in November. She plays and plays and plays. Our home is full of music again! Ever since Blythe moved out, I have been missing her music. It is so wonderful to hear Annesley create magic with her voice and strumming!
  • Back in October I started reading to my mom most nights. I’m so grateful for the nightly check-in and that she wants me to share our family read-aloud time with her.
  • Today is World Cancer Day. My mom was diagnosed with bladder cancer on September 30. A few weeks later we found out it was high-grade. It gutted me. She has completed her first round of treatment and is doing really well. Soon we will find out how her body responded and if the cells are still multiplying rapidly or if her body is winning the battle. I’m so grateful she is thriving spiritually and emotionally and nourishing her body physically – giving it all sorts of fantastic stuff to kick cancer to the curb.

Time to get to work on taxes and laundry and Uncle Tom’s Cabin. I really need to leave my house and run errands today, but it’s so dreary, I think I’ll just keep working on my big to-do list here at home.

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can and do are two different things

Jan 30, 2021 by

Laughing SO hard right now.

Richard: (comes in with a sheepish look on his face) I’m wondering about this mystical grocery list Annesley says you have????

Me: (giggling) What is that look on your face?

Richard: Well, Annesley told me you have a list, but I just can’t imagine that is true and I don’t want to make you feel bad by asking about it.

Me: (full blown laughter) I DO! Here it is!

Richard: WHAT? You actually made a list?

Me: Yes! Here you go!

Richard: (completely dumbfounded) Wow, this is some serious organization.

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i feel good, nananananana

Jan 30, 2021 by

Yesterday I played at gym. Like really, really played for a solid two minutes! I jumped around while playing beanbag catch with Hannah, one of my gymnastics teachers. We laughed so hard. And it felt sooooooo good. I think it might be the first time I have felt the freedom in my body to actually let loose and let the old me out to play.

I love the new me. I miss the old me. I’m feeling a merging of the two coming. And boy, howdy, it feels good. Can you hear James Brown singing in the background?

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tender times

Jul 17, 2020 by

Our Keziah-girl is getting married in 48 days. The emotions are big in all the ways. Joy, grief, longing, happiness, all the things. We are going to miss her fiercely. Her impact in our home is huge. She is loud, hilarious, determined and her presence is always known. She knows just what to say to bring a smile to Fisher’s face or to encourage him to keep trying when life is hard. She can get him to do what no one else can. She pulls her siblings together for games, adventures, and giant work projects – they would cheerfully follow her to the ends of the earth if she asked them to.

And so we cry. And laugh. And savor every moment we get with her. Everything feels precious. Every conversation. Every game. Every meal. Every story. Every prayer. We have about 25 nights left that she will sleep in our home because she will be gone a lot over the next 7 weeks. I want to spend those nights snuggled in bed with her, hearing her breathe, but she would never allow that, so I spend my nights snuggled up with Richard with tears running down my face.

This parenting thing is hard. We give our hearts so completely to these little babies, then we pour ourselves into them, teaching them, loving them, preparing them for adulthood. And then they grow up and leave and a giant hole is left.

I’m so grateful. So deeply grateful to have been granted the privilege of being a mother. Mothering our children has sculpted my soul, enlarged my view, and grown my heart. Reading to them, teaching them day after day after day, helping them discover the world around them, helping them see who they are, how God works in their lives, and who He created them to be has been an exquisite journey. Two of our children have flown the nest, two of our children are still here, finding their wings. And two of our children are still trying to come to our home and may or may not ever make it into our arms.

It’s a tender time.

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thankful thursdays 4/2

Apr 2, 2020 by

I’m not really feeling very thankful tonight. Truth be told, I’m in a funk. Earlier this week I was irritable as could be and now I’m in the leftover stages of irritable, worn out from being irritable and ready to move on, but not quite there yet. So gratitude is probably what I need even I don’t feel in the gratitude groove at the moment.

  • Tonight we are five weeks out from brain surgery. Just typing those words brings the tears pouring out of my eyes and running down my cheeks. Here we are, five weeks later, and he is alive and recovering and doing so, so well. Today he cut a few pieces of wood for me and deep gratitude filled my soul that he was able to do it.
  • My nephew, Marcus, committed suicide last week. My heart absolutely aches for him and the pain he was carrying and fighting. I’m so grateful I was able to go and spend some time with his family at a park and remember the sweet, kind boy I always knew.
  • We’ve been studying the restoration of the gospel of Jesus Christ through Joseph Smith in preparation for the 200th anniversary of the First Vision. It has been wonderful to spend time together as a family learning more about the nine different First Vision accounts, the coming forth of The Book of Mormon, Father’s covenant plan for His children, ordinances, the messiness of the restoration process, and most of all, Jesus grace and love in the lives of Father’s children. I will always treasure this time we have had together.
  • Whenever I’m irritable, I like to rearrange. Yesterday my children helped me rearrange and clean the school room. Something about a new placement of furniture helps clear my mind and see things in a new ways.
  • My dear friend lost her baby today. My heart is aching for her and her family. This baby has been prayed for and waited for for a long, long time. Her baby’s passing is bringing up all sorts of feelings about our babies’ passing and it is hard, tender stuff. Regardless of the pain, I’m grateful we get to share and love and pray for each other. I’m grateful for her faith and courage she has shown for the past 15 weeks of her pregnancy. She has been a strength to me and I hope I have been a strength to her. Having babies that don’t make it into their mama’s arms binds hearts together in a sacred way and even though it is hard, I’m grateful we get to do this together.
  • I’m reading a beautiful, soul-filling book, The Keeper of the Bees. I haven’t been able to focus and get through a book for many months. I’m trying to use this Coronavirus quarantine time to reclaim my mind and fill my soul with good things and this book is helping me learn how to focus and read once again. It is such a wonderful story that is reminding me that God is in the details, that life is worth fighting for, and that human decency changes lives.
  • I’m really grateful we all like each other. Since we are all together much more than we ever have been, this Coronavirus situation has been a test of our relationships. And yes, there have certainly been some pull-my-hair-out moments, but for the most part, we have laughed and played games and read and worked together. It is a huge blessing in my life to genuinely enjoy spending time with Richard and our children.
  • We’ve taken the past four weeks off our morning scripture study routine. With Richard not being able to sleep at night and therefore me not sleeping either, we’ve been in survival mode and absolutely could not get up at 7:00 for family scripture reading. This week we started again. And it’s been hard. I would much rather sleep in. But it’s also been good. I love reading scriptures all together. I hope when our children grow up and move away that our morning scripture reading and evening read-alouds bring smiles to their hearts forevermore.
  • Tonight I am grateful for do-overs. Second and third and a zillionth chances. I mess up again and again and again. And because of Jesus, I get to keep trying. I get to keep learning. I get to say I’m sorry. I don’t even have something pressing on me that needs a second chance in this moment, but boy howdy, the glorious plan of redemption is filling my heart with gratitude tonight. Without it, there is no hope. With it, there is every hope.

And so, I’m going to go to bed, trusting in the hope that Jesus’ atoning sacrifice gives me power to keep trying and Father’s love gives me the desire to do so. Mortality isn’t a cakewalk, but it can be beautiful and blessed.

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heartbreaks & heart rescues

Mar 8, 2020 by

Such a hard and beautiful and sacred day at the same time. Hard because Richard is in so much back pain. He cried multiple times from the pain today and let me tell you, holding your big, strong man while he sobs from pain is gut-wrenching.

Beautiful because we are surrounded with so much love. A friend was able to come and do a house call and give Richard a chiropractic adjustment to help his back. Two other friends came and gave him a priesthood blessing. Other friends brought dinner and caught Richard at his best moments of the day and were able to have a good visit with him. And another friend brought muffins and fellowship. We are so grateful for the love of God being made manifest in our lives through each of you. Thank you for being His hands and lifting us in mighty ways.

Sacred because I was able to sit in sacred spaces and feel God’s love for me, for us, for each of His children. One, partaking of the sacrament with my ward family after my son said the sacrament prayer felt like an enormous privilege. Two, sitting in my bedroom while Richard was given a beautiful priesthood blessing of healing. And, three, tonight Fisher was given permission to administer the sacrament to his father. There are not words to describe the joy and gratitude of having this young man put on a suit and tie at 9:45 at night, prepare the bread and water for his father, and then kneel down at the foot of our bed and say the sacred words of the sacrament prayers.

Today brought home the message that every single person is important to God. Richard’s pain and heartache and struggle matter to the God of heaven and earth and even though the pain was nearly unbearable today, we were not left comfortless, we were not left alone. He is walking this path with us.

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thankful thursdays 3/5

Mar 5, 2020 by

We have survived the first week since Richard’s brain tumor removal on February 27. It has been rough. And wonderful. And exhausting. And tender. And everything in between. Today is also his 50th birthday and there is something about birthdays, especially big, round numbers like fifty that bring on the introspection, at least for me.

  • I’m so grateful he is alive, that he made it through surgery and we were able to bring him home! This surgery doesn’t generally cause death, but thoughts of him dying have been quite present in my mind since his diagnosis.
  • This time with him is a gift to both of us. We haven’t been able to spend a lot of time together for a long, long time because of his working hours. Sitting with him, reading to him, laughing with him, and just watching him have been so wonderful. We love being together and spending time together is comfortable and soothing to both of us. It’s really nice to know we actually, factually like being together.
  • My heart is full to bursting with the good in this world. So many people have reached out to us with donations of money, food, words of encouragement, gift cards, hugs, and many other kindnesses. Piles and piles of goodness!
  • I’m so grateful to be a wife and mother. These were not roles I wanted to have, but oh, the soul-filling richness of loving these people is such a gift! I’m so thrilled God gave me this privilege even though I didn’t know enough to want it.
  • A few days ago, my friend, Jodie, came to the hospital with all sorts of yummy goodies and yes, that chocolate has gotten me through many a hard moment in the past few days, but more importantly, she brought her heart. She let me cry and talk about our babies. She listened while I tried to sort out the past few months in my mind. She gave Richard a hand & arm massage and me a foot massage and it was heavenly. HEAVENLY. She inspired me to show up to someone’s hospital room and give them a foot massage. Someday soon I will do just that.
  • Prayers. I’m so grateful to know people are praying for my husband and for our family. I’m grateful to hear our children’s prayers. I’m grateful to be able to pray and pour my heart out to God.
  • Orchids. I’m not really a flower person and I’ve never successfully kept a plant alive. My friend, Lisa, brought over two orchids for our babies we miscarried a few weeks ago and I gave Keziah the task of keeping them alive (and she has!). Coming home from the torture chamber of the hospital was a strange experience. It was as if everything in our lives had changed and that an entire lifetime had been experienced while we were gone. I didn’t know how to recalibrate to our new lives. Seeing the orchids on my kitchen windowsill brought me back to center. Somehow they helped me reintegrate this new post-surgery family with our pre-surgery family, my new role as caretaker of my husband with my old role as pregnant mama of twins and mother of young adults and teenagers. Somehow they helped me remember who I am and that these babies are ours forever even though it feels like a lifetime ago that we lost them instead of four short weeks.
  • I’m grateful for sunshine. We aren’t getting out in it much, but it sure is nice to see it shine through the windows and start melting the mounds of snow in our yard. It reminds me that the new growth is coming and we won’t be living in the cold, hardness of this winter forever. We will regrow as a family and figure out our new normal.

My heart is full. And broken. And growing. And aching. But mostly full of gratitude.

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50 things for his 50th

Mar 5, 2020 by

Today is Richard’s 50th birthday. We are not having a big celebration or anything – Carl’s removal is his present, I guess? He is in a lot of pain and last night was as miserable as can be, but we are planning on having his favorite lemon meringue pie tonight.

In honor of his 50th, I’d like to share 50 fabulous things about him.

  • 1. He is patient with himself and others.
  • 2. He sees the best in others and assumes the best of others’ behavior and intentions.
  • 3. He is devoted to his wife and family.
  • 4. He is an amazing fisherman.
  • 5. He can eat anything. No matter how gross my food turns out, he eats it with a smile and grateful heart.
  • 6. He naturally understands the process of learning and is an amazing teacher.
  • 7. He doesn’t rush others.
  • 8. He is willing to put in the hard work of learning new skills.
  • 9. He gladly sacrifices his own well-being for his family’s.
  • 10. He loves God with his whole soul.
  • 11. He keeps his covenants.
  • 12. He is humble.
  • 13. He warms up my side of the bed so it is toasty when I come into bed.
  • 14. He adores me.
  • 15. He believes in my dreams, big and small.
  • 16. The most important things to him in life are to be a good man, a good husband, and a good father.
  • 17. He has never once raised his voice at me or our children. So incredible!
  • 18. He takes our children backpacking and teaches them how to survive in the wilderness.
  • 19. He was pretty much terrified of speaking to others until his mission. But he trusted God to help him and God gave him the words to say and changed him into someone who could talk to others. Now he has difficult conversations with distraught parents and frustrated teachers every single day.
  • 20. He spends every Wednesday night with his dad helping him in the garage with whatever project they are currently working on.
  • 21. He loves his parents and siblings.
  • 22. He loves when I read to him.
  • 23. For most of our marriage he has worked 60-90 hour weeks.
  • 24. He listens to our children’s emotional upsets and is able to help them work through whatever ails them.
  • 25. He cleans up all the throw up in our house.
  • 26. His best therapy is walking a mountain stream with a fishing pole in his hand.
  • 27. He wasn’t naturally good at baseball, but he wanted to play so much that he put in hours and hours and hours of extra practice time so he could compete with the other boys.
  • 28. He loves physics. One of his dreams is to get a PhD in physics.
  • 29. He has helped thousands of children and families with autism live more functional, productive, happier lives.
  • 30. He is really, really good at understanding what children need to help them succeed.
  • 31. He sees potential in everything, broken cars, homes, and most importantly, people.
  • 32. He knows what can be done to fix those broken things.
  • 33. He can laugh at himself.
  • 34. He cooks all of our Sunday dinners. And many of our other dinners as well.
  • 35. He likes to serve me breakfast in bed on Sundays.
  • 36. He makes the best red potato-garlic mashed potatoes.
  • 37. He loves hard labor like chopping wood, breaking down walls, and hoisting engines.
  • 38. He loves babies. Pretty much all of them. And definitely all of ours. Between our living children and the ones we’ve lost there are seventeen and he tears up over those precious thirteen often.
  • 39. He regularly stops to help people on the side of the road.
  • 40. He forgives easily.
  • 41. He loves watching his children do anything that is important to them.
  • 42. He is gentle.
  • 43. He is kind.
  • 44. He is grateful for any kindness done to him or for his family.
  • 45. He is honest.
  • 46. He loves camping with his family in a tent in the middle of nowhere. The more rustic, the better.
  • 47. He gets up day after day going to a job that doesn’t pay much and is full of really hard things because he knows God wants him to do it.
  • 48. He is adaptable. Whatever life throws at him, he figures out how to work with it and does it with a smile.
  • 49. He has great courage to overcome his weaknesses.
  • 50. He loves all of his grandparents and was especially close to his Grandma Stella who he shared a birthday with. She always brought over a creamy fruit salad for just her and Richard to share. Today she would have been 113. With the loss of our little Stella, we are both thinking of Grandma Stella and little Stella a lot today.

He’s always wanted to live to be 100. Here’s to halfway! So glad he’s made it this far!

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first day home

Mar 3, 2020 by

First day at home has been full of successes!

  • Showered! The shower chair Lisa sent us worked out perfectly and the hand-held shower sprayer was A+. He felt so good to get cleaned up!
  • Shaved. His whiskers were driving him batty. He was able to sit in the shower chair and shave and I just helped on the spots he missed.
  • Lots of sleep. Many people have told us to expect him to sleep 16-18 hours a day for the first few weeks. He can handle short conversations and visits, but then is exhausted and needs to sleep some more.
  • His first PT appointment with Jeremy went well. Jeremy ran some assessment tests for eye tracking and balance and even though Richard can walk slowly and carefully, he has a long way to go to be functional in the world. He scored a B- to a D on all the assessments. Jeremy gave us three different types of vestibular exercises to start with and we will do them multiple times a day for the next week and then reassess.
  • Finished his steroid prescription. (Not sure if this is good or bad? Part of me wishes he was on them longer to help with brain swelling and part of me is thrilled to not be putting any more in his body!)

And now for the not so great. His marginal mandibular nerve really took a nose dive today in terms of functioning. He is dripping water out the side of his mouth, can’t push his tongue out straight, and is looking pretty crooked. His eyes aren’t tracking together completely (his right eye lags behind) and his brain is pretty foggy.

Jeremy said all his nerve functions will get worse this week as the swelling increases with the drop in steroid use today. We are using Ease, Nerve, and licorice root along with Lumi light sessions and hoping these things are super effective at decreasing the inflammation. Jeremy also assessed the swelling around the vagus nerve and said it is significant. He also gave us a pep talk about having a long-range view and that the next 4 weeks are going to be VERY tough. He encouraged us to stay motivated for the long haul so that we keep doing the hard work of brain healing and nerve recovery for the next year. It was a good appointment AND sobering at the same time.

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first 24 hours of gratitude

Feb 28, 2020 by

It is 9:42 at night and my heart is so full of gratitude. This is not an exhaustive list, but I want to record some things to both focus on and remember.

  • We are out of the ICU! It is so much more lovely and quiet over here in Acute Care.
  • My mind has been full of this thought all day…If this had happened even a year ago and definitely two years ago, I would have been unable to take care of him. These long days would have done me in and I would have been having seizures and passing out. One year ago I took care of my mama in the hospital for a little over 24 hours and it was so hard on my body and I nearly passed out multiple times. This would have been impossible. Today I hit my head really hard on his food tray and it hurt, crazy hurt, but I didn’t pass out. I can’t even describe to you what a miracle it is for my body to be doing so fantastic that I can be on my feet all day long and take care of him. Thank you stem cells, thank you Plexus, thank you God. Soooo much thanks.
  • Richard’s facial nerve continues to function! WAHOO. Just one week ago, Dr. Couldwell said “Almost certainly you will have some degree of facial paralysis after surgery. Nearly everyone does. So that is not the question, the question is how severe the paralysis will be, how long will it last, and what can we do to help you function with it.” Miracles!!!
  • We are surrounded by love. So much love with people being here at the hospital with me, people sending encouraging messages, each of you reading my posts and cheering us on. Thank you. Every single message is a gift to our hearts.
  • Our children are doing well. Of course they are scared and at times, overwhelmed, but they are brave, resilient, hilarious, and full of love. I’m so proud of them and so grateful for them.
  • Our insurance company paid for a hotel for us – what a gift! It is right next to the hospital and is such a gift to be able to run over and get cleaned up. I didn’t think we would need it, but they knew better than me and booked it. I had never heard of travel benefits before we joined Mountain Health Co-op and didn’t really trust that they would do what they say (been burned so many times in the past by insurance companies), but they are far exceeding my expectations.
  • Most of all, at this moment, my heart is so full of love for Richard. He is lying here sleeping while I type this and hearing his gentle breathing sounds bring joy to my heart. He is alive! He is recovering! He can still kiss me. He is so patient and kind and good even when he is miserable. I am so head over heals in love with this man and so blessed by his love. Somehow, miraculously, he feels like he is the blessed one. Oh my heart, I love him and am so grateful he is going to leave this hospital sometime in the next week and come home to us. I’ve had so many terrible nightmares over the past month about him dying during surgery and while I knew it was unlikely, the dread of that possibility has been weighing heavily on my mind and I want to shriek with joy that he made it through.

Sitting here in the dark, savoring this joy and gratitude tonight is just what my soul needed. Thanks for listening.

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seven hour drive = priceless

Feb 28, 2020 by

Our kiddos decided to drive down and see their papa! So fun to let them see him for a few minutes! They got here tonight right after he was moved from Neuro Critical Care to Neuro Acute Care so they were allowed into his room, wahoo!! It is such a blessing to be out of the ICU. He made it out a day earlier than they were expecting and we are so grateful and hoping for some better sleep tonight.

Just missing Blythe and her family!
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shuffling for the win

Feb 28, 2020 by

Rough PT appointment this morning with a big drop in blood pressure and some puking (big thank you to Tami for being quick with the puke bin). But this afternoon he walked with little shuffling steps all the way down the hall and around the corner and down the next hall a little ways! So proud of him! They also had him sit up in a chair for a little while and start working on learning how to put his socks on. He has been able to get a little sleep and feels much better than he did this morning. His parents brought him a teddy bear reminiscent of the bear his grandma gave him when he was five and had eye surgery and my mom’s friend, Karen York, sent some delicious Crumbl cookies! He had a few bites of the lemon one and was in heaven! Thank you so much to all of you for caring about our journey and blessing us with your love.

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miserable night

Feb 28, 2020 by

After all the exultation of how well the surgery went, it’s been a rough night. He just said, “I don’t think I’ve ever been this miserable.” His back, which was sore for about a week before surgery is throbbing. He has a pretty massive headache. And all the wires and IVs (3 IVs right now including an arterial one that is really hurting his hand because of the weird position it has to be splinted in to keep it reading his blood pressure accurately) are making it really challenging to be comfortable. They left him to sleep around 11:30. Then came and got him at 12:33 for an MRI. Brought him back at 1:29. Then encouraged him to sleep, but have come in every 20 minutes to either draw blood, do neurological assessments, clean his catheter, give him antibiotics, or administer pain meds all night long. There has definitely been no sleep to be had for either one of us. I’m working on his back now as best as I can get to it with Deeper oil and my magical tuner (Rezzimax) and hoping to get him some relief.

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carl is gone

Feb 27, 2020 by

Carl is evicted!!!!!!!! Dr. Couldwell just came out and talked to us and let us know surgery went well and he was able to remove the entire tumor!!!!!!!!!! He is still in surgery and being closed up so I probably won’t get to see him for another 2 hours or so. I’ve been strong and pretty chipper all day, but after Dr. Couldwell talked to me, I broke down and cried and just let it all out for a brief moment. My heart is SOOOOOO full of gratitude for this beautiful outcome.

Oh my, before I was able to post this, Dr. Gurgel came out and told us surgery went as best as they could have hoped for and his facial nerve is 100% intact at this moment and is firing at the lowest level which is what they want to see!!!!! He’ll still be in surgery for about an hour and then recovery for 30+ minutes before we get to see him. Thank you for all of your love and prayers. They have meant so much to me and all of us.

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eviction time

Feb 27, 2020 by

It is time to get this eviction party in full swing! His temperature control has been wonky for about 6 weeks and is getting worse by the day. Last night his right cheek was freezing cold to the touch. His left cheek was warm. His belly was frigid. His legs were hot and sweaty. It changed all night through. During the day he has been really, really warm and then suddenly it will all change and he will be freezing. All night long, I kept thinking how grateful I am that Carl is leaving today, before Richard’s nerve and brain stem damage get worse.

We have done everything we can think of that would help Richard do well in surgery and recover afterwards. Here are some things we have been doing. 1. Daily pre-surgery guided meditation (SOOOOO GOOD!). 2. Dr. Christopher’s Ear & Nerve Formula. 3. Jiaogulan to prepare his brain. 4. Licorice root tincture and tea for brain swelling. 5. Immunity builders – Anti-plague, oils, vitamins, etc. 6. Plexus Ease to reduce inflammation. 7. Plexus Nerve to increase blood flow to the nerves. 8. Homeopathic Ignatia for grief. 9. Balance exercises. 10. Lots of walking. 11. Lots of prayer, priesthood blessings, and temple time.

We have an arsenal of stuff to help afterwards as well: near infrared lights (thanks Torrie!), Complete Tissue and Bone massage oil, lots more licorice root, lots more Ease and Nerve, vestibular therapy, work with Dr. Centers, mesenchymal cells, primitive reflex integration therapy, and of course, lots more prayer.

We are walking in with courage and hope and gratitude. Thank you for sharing this journey with us. We feel completely wrapped up in your love.

Now, EVICT CARL!

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expiration dates

Feb 22, 2020 by

Annesley holding some half-n-half: Mom, is this good? I can’t tell.

Me: What does it smell like? What does the date say?

Annesley: It says April 14, but I don’t know what year.

Me, dying laughing: We may not be totally up to snuff on our kitchen maintenance, but there is no way we would have half-n-half in our fridge if it expired last April!

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eight years

Feb 20, 2020 by

Today is the 8-year anniversary of my initial hip injury. For the first time, I don’t have a celebration planned. In past years, we have had dinner parties, breakfasts, walks, and bike rides, but I’m not up to it this year. I’m fighting some immense emotional battles and with the loss of our babies last week, I don’t really want to talk to anyone, much less celebrate with a party, but I am definitely still remembering that day. How could I forget the day that changed our lives forever?

I remember running around the greenbelt on the 17th and how good it felt. It was the first run I was able to successfully manage my breathing and actually enjoy instead of feeling like I was in some sort of torture machine of my own making. I remember the back handsprings I did that day in the gym, a whole string of them across the mat. I remember feeling like Keziah and I were going to have an epic year of training and participating in triathlons, laughing and growing and accomplishing hard things.

That all changed on our run on the 20th. A searing pain started in my hip joint that brought tears to my eyes. My steps became shorter and slower as I struggled to breathe through the pain. I was determined to finish my training schedule for that day and tried to limp-jog while physically pulling my leg forward with my hands. It did nothing for the pain and I slowed to a walk. Keziah told me I didn’t need to keep trying, she would run on her own and that I should go sit down. Refusing to give in, I kept trying to continue, but finally the pain was so great, it was all I could do to hobble over to our Suburban. With tears frozen to my cheeks and pain coursing through my body, I tried to talk myself out of thinking something was really wrong.

But something was really wrong. It took us weeks to find out that I had torn my labrum in my right hip socket. That injury started a cascade of many other injuries and damage to my nervous system. For about six years, I lived in a variety of braces, splints, and wheelchairs. The nervous system damage progressed to sympathetic nervous system responses which look and feel like seizures, but are not brain-mediated. In 2015, after months of my nervous system shutting down more and more and being unable to digest food, I was given a miraculous gift of treatments with Dr. Calzada in Tijuana, Mexico. Since then, I have gone seventeen times and received stem cell treatments along with chelation, magnet therapy, radionics. These treatments saved my life. I don’t know if I would have actually died or not, but they have definitely given me back the functioning of my body. I can now walk and ride my special forward-crank bike and kayak and hike and drive and so much more that I never knew I would be able to do again.

And so today, my heart is grateful. So, so grateful for the many friends and family members who have taken care of me time and time again when I was unable to take care of myself during seizures or injuries. I’m so grateful for the nurturing our family has received, especially the love and support our children have been given as they had to adjust their lives to having a mama regularly pass out, shake uncontrollably in front of their eyes, and spend much of her time in bed. I’m so grateful for the life my friends have helped me to live by including me in their activities even when it wasn’t convenient to haul me around. I’m so grateful for the amazing treatments I have been blessed with that have strengthened my ligaments and calmed my nervous system.

I’m so grateful for Richard. He has taken care of me for the past eight years with so much patience and tenderness. Not a single time has he been frustrated with me for getting injured again or passing out or causing our family great inconvenience. He has willingly served and loved and filled me with hope and laughter again and again. He has sacrificed much, working 60-80 hours a week to provide for our family and then coming home exhausted and willing to keep working here to make up for all the things I couldn’t do. His heart and hands are always ready for one more conversation, one more act of service, one more challenging situation.

And now he needs us. In one short week he is having brain surgery to remove a vestibular schwannoma. We have no idea how surgery will turn out. It is quite possible he will never be able to work in his current profession again. Our lives are about to change dramatically. At times that feels absolutely overwhelming, but most of the time, we are filled with peace. We know we are in God’s tender hands. We know we are not alone. We know we have an army of people who love us. We know we have each other and that we can weather fierce storms together.

So we are sailing forward, with courage, hope, and faith, not in an outcome that everything will be okay, but in confidence that God is with us, that our covenants are eternal, and that somehow, someway, we will come out the other side.

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i never saw this coming

Feb 10, 2020 by

Oh my goodness, how to even start here again. I need to, because I want to remember these days forever and I want our children to have a record of this time of our lives. So much has happened since I last posted in May of 2019.

We had a glorious summer of adventure, camping and kayaking together as a family. I felt and functioned the best I have in nine years and we played as hard as we possibly could. Then September came and I completely fell apart emotionally. For seven weeks I barely functioned as I dealt with the death of our dear nephew, Kyler, mountains of survivor’s guilt, and deep personal pain.

In December we discovered we were miraculously pregnant. And on January 8, Richard was diagnosed with a brain tumor.

The last four weeks have been a blur. We are surviving and holding on to faith and hope and love and each other. But the days roll on, one after another, and I can barely keep up. The first four weeks were busy, all day, every day, with phone calls and doctor’s appointments. The last few days, since his surgery to remove it has finally been scheduled, have been much needed balms for my soul. The fight for surgery with our preferred neurosurgery team and insurance to cover it was intense and now that that fight is over, I feel like I can finally breathe again.

This journey needs documented and I’m going to give it my best effort, which at this point my best is sorely lacking, but I am going to really try.

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