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two years after carl

Feb 27, 2022 in Uncategorized | Comments Off on two years after carl

Two years ago today, we were at the University of Utah hospital having Carl the Schwannoma evicted. What a day that was and what a journey since.

We felt so wrapped up in your love that day and in the days and weeks and months that followed. Thank you, thank you, thank you for carrying us and helping us all along this journey. Your kindness and hugs and laughter and faith and money and meals and tears and and hurrahs have made this a holy experience of being ministered to, walked with, and lifted up. It has been so, so hard…and somehow at the same time, it has felt almost easy. Your love and God’s tender care have filled this journey with light.

Richard continues to improve in many areas and also to struggle with some things.

The wins:

  • His balance continues to get better. In fact, he has had a few slipping incidents on the ice this winter and hasn’t fallen!
  • Can engage in almost any activity he wants to…he just can’t engage very long.
  • Getting more comfortable with his single-sided deafness. And I’m getting better at interpreting for him so he understands what he can’t hear.
  • He’s doing 100 pushups a few times a week.
  • He’s walking a mile a few times a week.
  • He can close his eyes in the shower while he is scrubbing his face and doesn’t feel like he is going to fall.
  • He can keep his balance with much less light.
  • He is sleeping deeply most of the time.

The struggles:

  • Still can’t attend church for more than an hour. The noise coming from all different directions, the organ, and the electronic speakers throughout the room vs sound coming from the person’s mouth who is speaking at the front of the room, do a number on his brain every week.
  • Really struggles with learning new things. If the concepts were known before surgery, he can integrate them, but if he is trying to learn a new concept, he says he can’t focus on it and it feels like there isn’t a file folder to put it in and the information doesn’t get stored.
  • Neurological stamina is still short.
  • His eyes can’t track very well while reading – so he’s not really able to read a book.
  • He feels overwhelmed if two people are trying to talk to him at a time. He needs to focus on one thing at a time.
  • His skull continues to shift and cause him great pain. The scar tissue and fascial layers pull on his skull bones and move things all wonky. The last big shift happened two weeks ago and actually pulled things down on the left side instead of the right. He was pretty miserable and had to miss work at his 2nd and 3rd jobs several days in a row because his brain and body needed to come home and do his near-infrared lights and sleep.

Our life has changed. Our time together is sweeter. I do far less socializing than I used to and far more sitting with him at home. He needs the quiet and calm of our home and rarely attends parties or receptions or group gatherings. If our children are performing, he tries his best to attend, but it wears him out and he has to sleep for many hours to recover from a social event. Life here is pretty quiet. It’s just what he needs.

I try to lessen his burdens, but the reality is, he works even harder at easing mine. He is my hero. He puts God first and all of us a very, very close, nearly undetectable, second. He serves and listens and forgives and laughs. He is kind, unassuming, brave, patient, and willing to work hard. He shows me every day what love does, what faith feels like, and how courage fuels an ordinary man to do extraordinary things.

It seems a bit surreal to be two years out from brain surgery. It has felt like a lifetime and also like a blink all at the same time. I’m so grateful to be 1,825 days past surgery. A shirt I saw recently said “Life is periodically hard, but elementally good.” Sooooo true! There has definitely been some hard, but oh, my goodness, life is so deliciously good.

sometimes there is silence

Jan 30, 2022 in family, saylor and stella | Comments Off on sometimes there is silence

Our theme in church today was Trusting in the Lord’s Timing. One of the speakers said something along the lines of, “Sometimes when the answer is not yet or no, that answer comes with silence.”

Boy howdy, did that hit home. My hand reached out and gripped Richard’s and I shuddered a little as tears started to flow.

Because that is largely what we have experienced with Saylor and Stella. It’s been two years and the silence from the heavens has wracked my soul more than I can describe.

There have been moments of peace. There have been tender mercies with their mighty spirits.But mostly there has been silence.

And heartache.

And tears.

And longing.

I would just love to have a sit-down chat with God where He could explain the whole situation to me. I absolutely trust Him and His goodness and His love for me and for our babies.

But I don’t understand the ten years of promptings and the miracles and all of it since they aren’t here in our home. I’m sure there are answers, beautiful, wonderful answers that will satisfy my soul, but since I don’t have the answers, my mind tries to create some sense out of the whole thing and I’m sure my explanations are not the truth. So I need it straight from Him. What the cow did all of this mean and why did it unfold the way it did?

If you are aching with silence from the heavens, just know, you are not alone. And also know, that I know, He is good and kind and merciful and loving. And someday we will both understand.

cliff devries

Jan 25, 2022 in inspiration, life with eds, the hip | Comments Off on cliff devries

Oh, my goodness, this man, Cliff Devries, continues to inspire me. I’ve shared videos of him before, but this is the best one yet. Give yourself a gift and watch this year’s birthday dive and really listen to his words, especially at the end.

He became paralyzed 24 years ago during his brain stem/spinal cord tumor removal surgery…which totally hits home in our lives. This year’s video shows the swimmers pulling him up from the bottom of the pool and as I watched them I cried. I’m still crying typing this.

For long years, from 2012 – 2017ish or so, I was a lot like Cliff. I wasn’t paralyzed, but I was injured and had dysautonomia so badly that I couldn’t be alone and I couldn’t do much of anything for myself. I had big hopes and dreams (I always do!), but had no ability for my body to do them. Instead, I had friends who helped make my hopes and dreams come true. They carried me and pushed me and lifted me. Sometimes they fed me and bathed me. Someone always had to transport me to get me from point A to point B. Always, someone was my lifeguard. If these amazing people hadn’t been willing to be my arms and legs, I would have been stuck at home, which literally would have felt like death to me. I’m so grateful for the heroes in my life and in Cliff’s that allow us to live our dreams even when our bodies can’t do it on our own.

zorgamazoo

Jan 24, 2022 in Uncategorized | Comments Off on zorgamazoo

This has long been Keziah’s favorite book. I’ve never read it. She checked it out over and over and over again from the library. And read it over and over and over again. But somehow, I never did.

It’s our new family read-aloud. And boy howdy, it is fun!

Richard chuckles the whole time. My mom raises her eyebrows in shock and scrunches her face up in disgust. Annesley alternates between laughter and revulsion.

Katrina Katrell is quite the girl. We are on chapter four and are already quite smitten with her courage and ingenuity. I can see why Keziah loves the book, she is very similar to Miss Katrell.

Since Annesley’s days are full of studying Hitler and his evil schemes to murder millions of people and take over the world, I decided we needed a lighthearted book to snuggle up with at night. This one is hitting the spot!

january 8

Jan 8, 2022 in carl the schwannoma, life with eds, saylor and stella | Comments Off on january 8

January 8, 2020 is the day Richard was diagnosed with a brain tumor.

It’s been two years since that hard, heavy day and today he went fishing on the Snake with Fisher and caught six fish! What a way to celebrate! He said wading in the very shallow water felt okay to his brain and didn’t tire his brain out as much as it did this past summer. He continues to make progress and we are so grateful!

We were also able to spend some time in the temple thanking God for His power and grace and tender care. I was a bit frazzled when I got there because of some challenges with my trip tomorrow, but eventually I was able to calm down and feel the sweet spirit and breathe in God’s love for me.

January 8th has been a big day for our family several times.

January 8, 2013 was my first seizure – these seizures changed my life dramatically because I was no longer able to be alone or take care of my children by myself. I always needed someone to be with me, to drive me places, and to be ready to help me if I collapsed.

January 8, 2018 was the day I found out I would start receiving human stem cells and received a powerful, beautiful message from God about our babies. GLORY, GLORY, HALLELUJAH! These cells also changed my life dramatically. Within three weeks after receiving them, my nervous system was soooooo much calmer. And the seizures mostly stopped. From 2013-2017, I had thousands of episodes. Since I started human cells, I have had 22! Next week I get to receive more of these amazing treatments that do so much good for my body. Sweet tears of joy as I type these words because my entire being is so grateful for the blessing these cells have been for me and my family. Those that have given me this gift can never be thanked enough.

I never know how I’m going to feel on January 8. It is a hard day…and also a beautiful day. Tonight I’m releasing the hard and just soaking in the miracles.

another clear scan

Jan 3, 2022 in family | Comments Off on another clear scan

My mama means so much to me. September 30, 2020 she was diagnosed with high-grade (very fast growing) bladder cancer. The tumor was removed, chemo placed on the tumor site for an hour, then flushed out of her, then she had weekly treatments for six weeks.

Her doctor said it would keep coming back and they would keep repeating that process for the rest of her life. She is checked every three months. So far it hasn’t come back.

Today was her fourth three-month checkup. And everything was clear and healthy.

REJOICING!

And tears of gratitude.

This isn’t supposed to be what happens medically, but somehow we have been granted this beautiful gift and I am oh, so grateful.

Way to go, mama! Way to go, God!

personal savior

Dec 26, 2021 in family | Comments Off on personal savior

Today Richard spoke in church.

It was beautiful. His testimony of the Savior, Jesus Christ, is tender and vibrant and humble and powerful.

It was also incredibly challenging for him. To be standing in front of that large congregation with movement all over the place in front of him with sounds coming from all sorts of directions was very disorienting for his brain and he was leaking out his eye and nose and started shaking about halfway through. But he did it. He shared his love and gratitude for Jesus in such a sacred way. I hope lives were touched and hearts lifted.

One of his messages was this:

“If you don’t know now, you will. There will come a day when it will be your broken heart, your broken body, your broken mind, your broken spirit, or your broken faith. We know the story of Jesus, we know He was born in Bethlehem, we know He is the Savior of mankind, but when it’s you that is broken, that’s not enough. You need to have a personal Savior. One that not only saves the world, but saves you, too. This is the Savior I have come to know and love through my life and the one I testify is there. Your Savior and Redeemer is a personal Savior.”

I am so grateful for this man God has blessed me with. I am so grateful for my Savior and the comfort and peace and healing and cleansing He has given me over and over again.

not just rocks

Dec 25, 2021 in christmas, family | Comments Off on not just rocks

See this bag of rocks?

Tears at opening them today.

During 2020, I gathered rocks. I kept seeing heart-shaped rocks on my walks and kayak trips and would pick them up. My family kind of chuckled at me, but they all knew this project of finding rocks was important to me. Then when Richard and I went on our first solo camping and kayaking trip, I stopped all over the river to find rocks that spoke to my soul. I put them in Richard’s boat.

And then I forgot about them. Not totally forgot, but mostly forgot. With teaching and work and being a wife and mother and getting stuff put away for winter and then more of everything this year, I had no idea where those rocks were and figured they had been thrown out when Fisher put the kayaks up last year.

And then today, Richard gave me a bag of rocks for Christmas.

My rocks.

Heart-shaped rocks and layered rocks that remind me of growth and the different seasons of my life and rocks that remind of a mama holding her babies.

He knew they meant something to me. So he found them and gave them back to me.

Just like Jesus does. This is the best, most tender gift and I am in awe of this good, good man I’ve been blessed to be loved by and to love right back.

secret santa

Dec 25, 2021 in christmas, family, inspiration | Comments Off on secret santa

Many years ago we were adopted by a Secret Santa. Every Christmas Eve for the past 10ish years, Christmas presents have been left on our doorstep. We are deeply grateful to whomever has done this for us. Each year, I would think to myself, “I should leave a thank you note on our door in case they come again.” And then I would think, “There is no way they will come again, they have already blessed us SO much, surely they will not come this year.”

And I wouldn’t leave a note.

I should have.

Over and over again, I should have.

Because their love and generosity has been such a gift to our family.

These presents have done many, many things for our family.

  • They have given us toys and games we could never afford for ourselves and we have had SO much fun with them! Multiple times they gave Fisher and Annesley big, awesome Lego sets which they played with for YEARS.
  • They have given us gift cards for groceries that have made all the difference in our budget. Many times, I would have nothing in my bank account and would be able to use these gift cards to buy food for our family. Other times, we were able to use them during the case-lot sale to stock up on food storage. I can’t tell you what an incredible blessing this has been.
  • They have brought our children a feeling of being seen and known and loved.
  • They have helped Richard and I know we are not alone and that miracles happen and that people are so very kind and generous and good.
  • These gifts have wrapped us up in a warm blanket of tender care that has carried us through many a dark day, many a seemingly hopeless time, many a devastating heartbreak that could have broken our spirits or challenged our faith. But because of the great love of these Secret Santas and so many others who have served us, we have been carried. We have been ministered to by your generous giving and thoughtful hearts.

Thank you. Thank you for your love. Thank you for seeing us. Thank you for loving us. Thank you for surprising us with JOY again and again. Thank you for making a difference in our family’s life by showing us how the Giver of All Good Gifts loves and lifts.

We will try to serve others as you have served us.

a little love note

Dec 13, 2021 in family, saylor and stella | Comments Off on a little love note

Big tears running down my cheeks.

Today I was in a very long line. The group behind me was a mama and her 18 month old. When I turned around I let out a little gasp. She reminded me so much of Stella, something about her spirit felt like Stella’s sweet, impish, brightly-shining spirit. This adorable baby girl with big eyes kept reaching for me, wanting to share her cookie. If I turned away, she called me back with the cutest little “hewow.” We played peek-a-boo and I talked to her about everything around us and she babbled back at me. The mama said, “She sure likes you, she can’t get enough of you.”

After we’d moved about 20 feet in line. I asked the mama what her baby’s name is. She said Saylor.

Then I gasped big and my eyes filled up with tears and I told her about our Saylor. She said “it’s not a common name,” and I said, “I know.”

The little Stella-feel-alike, called out bye-bye to me as I tried to find my car through my tears.

What are the chances?

Probably really, really small.

I’m counting it as a little love note from our babies.