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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