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heartbreaks & heart rescues

Mar 8, 2020 in carl the schwannoma | Comments Off on heartbreaks & heart rescues

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.

thankful thursdays 3/5

Mar 5, 2020 in carl the schwannoma, thankful thursdays | Comments Off on thankful thursdays 3/5

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.

happy 50th

Mar 5, 2020 in birthdays, family | Comments Off on happy 50th

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. So here’s to halfway!

50 things for his 50th

Mar 5, 2020 in birthdays, carl the schwannoma, family | Comments Off on 50 things for his 50th

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. So here’s to halfway!

first day home

Mar 3, 2020 in carl the schwannoma | Comments Off on first day home

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.

first 24 hours of gratitude

Feb 28, 2020 in carl the schwannoma | Comments Off on first 24 hours of gratitude

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.

seven hour drive = priceless

Feb 28, 2020 in carl the schwannoma | Comments Off on seven hour drive = priceless

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!

shuffling for the win

Feb 28, 2020 in carl the schwannoma | Comments Off on shuffling for the win

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.

miserable night

Feb 28, 2020 in carl the schwannoma | Comments Off on miserable night

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.

carl is gone

Feb 27, 2020 in carl the schwannoma | Comments Off on carl is gone

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.