Hard things

 

Forgive me a journal post. Some potentially triggering details removed. 

4/6/24 Saturday 12:20am

Three minutes later than last night, but tonight, we are done in St. George. 

Done. 

It was a freaking marathon. So incredibly hard. I'm so incredibly proud of Kristen. And Ryan. And Benjamin. And Rebecca. Oh, my heart. And my Jesus. 

How do I put it into words?

My 22 year old daughter is a widow. 

... She tried to resuscitate him. 

She gave him her whole self and he is gone now. 

She had to leave her home. Their home. Tonight, my daughter became homeless. 

We invited her back into our home. We let her know our home, the home of her childhood, would always be her home - whatever other homes she may have. 

We prayed - she prayed before we left the apartment for the last time. Before she left the apartment for the last time. The prayer was moving. She worried she had not done enough. We reassured her that was not something she was capable of. Kristen is 200%. Always.

And Michael loved that about her. 

On the way up, Ryan played the Hawaii playlist - the first time in a year that he felt joy in it. We sang, oh, how we sang. Kristen belted Fight Song/ Amazing Grace by the Piano Guys and one could not hear it and not cry with her. 

Everyone is struggling. This is hell.

I don't know how many times I found a quiet moment and prayed, 

“God, Consecrate my day to the welfare of my soul and may my life be a benefit to my posterity. Help me know what to do next.”

When Ryan and Kristen tried to get Michael's sedan going and it wouldn't work I felt like we needed to pray and go back and try again. I specifically felt that someone would be there to help us. 

Rebecca and I prayed and she came with me, and just a moment after we got the hood popped, a Hispanic man with kind eyes came and in hand gestures indicated that he had longer cables, which we needed to try to jump the car. When he came back he had the cables. His name was Francisco. He was smoking. He was an angel. 

Kristen joined us, then Ryan. I saw a Book of Mormon in the side door of the car and felt I should give it to him. 

The car never did turn over. The alternator is probably dead, but Francisco heard me testify, with Ryan as partial translator, that I had prayed and God had told me someone would be there to help us, and that the Book of Mormon was the most precious book and that the truths there were the only reason we were ok in the face of my daughter's husband's death. 

He told Ryan he had been thinking of investigating the church, but had been afraid. 

He said he would go talk to his family about it. We gave him our phone numbers. 

God can make good from anything. Anything. 

And when we put our will in his hands, he can do miracles.

We still don't have the miracle we had hoped for. Michael isn't with us, but maybe his days were shortened because he had reached the furthest he could in this life and God mercifully allowed him to go home. 

The scriptures I read today to try to find peace seemed to indicate such. 

Give your will to him. Miracles come. His miracles. God’s way is higher than our way and his thoughts are higher than our thoughts. 

I will trust in him. God, just don't leave me, please. 

Met Michelle at McMillan Mortuary today. Laughed about praying to be like Christ, then wondering why we have hard trials…Christ is perfectly empathetic. 

But, Christ also felt every single blessing that ever relieved pain and suffering…that is why he feels it when we serve others. 

All he wants is to have us love him and love one another. 

I'm so grateful for the Chosen clearing up a piece of Christ's teachings for me.

"If your faith be as a mustard seed"

It doesn't matter the size, but what you direct your faith at, what it is in. Mine is in Christ. And through him, I can do all things. 

Grasshopper Green

This morning, my Rebecca is home with me again. She, along with her three siblings, has a genetic condition called Cystic Fibrosis. It is a terminal degenerative disease that affects primarily the lungs, pancreas, liver, digestive system, and reproductive systems to start with. Although there is more and more promising research, currently there is no cure. This is her third week home from school.   

Because of their CF, my kids tend to get sick easier and stay sick longer, especially Rebecca. It seems like she and her older sister have always had more trouble with  lungs than the boys.  

This is a story about my Rebecca, to help those close to us understand why we are doing things the way we are doing them regarding masking, restricted activities when indoors without masks, and are facing the difficult decision of potentially taking Rebecca out of her award winning arts middle school.   

If you're interested, please feel free to keep reading. 

Before COVID,  Rebecca was seeing 5 or 6 different specialists and had a surgery scheduled to try to address her constant bouts of sickness. About every month, she would get very sick and have to be home and be put on antibiotics, which, of course, aren't very good to have to be constantly on.   

She was also lonely and couldn't do much outside of the home because she wasn't feeling well, and anyway, there wasn't very much time to try to do anything when she had to be on her "sick schedule", which included a percussion vest and three or four different types of nebulizer medications every 4 hours.   

The treatments took a little over an hour, with more time to set up and disinfect afterwards. The 6 or so hours of treatments didn't even include the other medications she had to take multiple times a day. A few inhalers, and at least 12 pills throughout the day was pretty normal.   

Then someone discovered that a new kind of infection was spreading across the entire world. It was the coronavirus and was especially hard on older people and those with chronic lung conditions or other underlying health problems.  

Having four children with Cystic Fibrosis and having so much to do to keep them healthy even when they were well, the family decided to be very careful. The doctors told them to wear masks and not go indoors where people were not masked, or even outdoors unless everyone was at least 6 feet apart.   

If you don't know, Cystic Fibrosis patients are generally not allowed to be closer than 6 feet apart from each other, because they can share really dangerous germs that are kind of unique to those with lung conditions like COPD or CF.  All of a sudden, it was like the whole world had CF.  

Rebecca remembered having another family that went to their church years ago whose children also had Cystic Fibrosis.   

She remembered how they had to be kept separate at activities and how, if they had been in a classroom before them, her mom and the other family's mom would come and wipe down the chairs inbetween so there wasn't a chance they would share dangerous germs like pseudomonas aurigenosa.  

Her brother got that one once. They offered IV antibiotics if the inhaled ones didn't work and it took him a whole year of intense treatments to get it out of his lungs. They were grateful it finally went away, as that was one of the 'CF bugs' that could quickly lead to lung scarring, reduced lung function, and eventually needing a lung transplant.  

Anyway, back to the story.   

There was a problem. While Rebecca and her family had to act like everyone had CF, lots of people didn't have to protect themselves that way and chose not to do those things that would make it so that Rebecca and other immunocompromised people like her could continue their normal activities safely.   

Rebecca and her family had to stop going to church on Sunday. They had to stop participating in their churches activities during the week. It was just not worth the risk.   

Rebecca's mom ran a business where families came together to make music. They had to work hard to find creative ways to keep making music safely.   

They did classes online - that Rebecca liked to help with. They did classes distanced outdoors - Rebecca liked these too and often came with her mom to get some fresh air and participate in the healing music making. They even did a few classes indoors with masks and filtration systems and doors and windows open to get good air flow. These were all good ways to still get together and be safe.   

Unfortunately, not alot of other businesses were going to all of that work and there were still no groups Rebecca and her siblings could participate in safely.   

However, they started to notice a blessing in all of the hard things.   

Rebecca stopped getting sick.   

First, it was one month, then another and another, until they finally called off the surgery because she was doing so well!  

They stopped having to go to the specialists and she was able to stop being on her sick protocols. In fact, about a year later, her clinic reduced her normal medications because she was doing so well!  

She was living more normally than she had ever lived in her entire 10 years of life and her little body was getting a chance to restore its natural health defenses. She had more time to play and do the things little girls like to do. It was wonderful.   

Or, it would have been.   

Now that she was well enough to go out, she still couldn't because there were very few places and groups of people who It would be safe to spend time with.   

As time went on, the sickness grew more widespread and affected more and more people. States started to require that everyone follow CF protocols with other CFers. Masked indoors and unmasked but distanced outdoors.  

Rebecca knew it was hard for those who weren't used to it, but this change also made it so that her family could return to church and she could return to activities! (If the safety protocols were being observed.)  

Rebecca got into and was enrolled in the arts middle school in her area. Her mom talked to the school and they found ways to try to keep Rebecca safe at school, like sitting outside the lunchroom by herself during lunch, when all the other kids would have their masks off. They put a plan in place so that if Rebecca got sick, the teachers would allow her a little more time to get work in.   

Rebecca took all advanced classes and, although she did get sick a couple times, she again and again got all As and Bs. She worked hard at her schooling, even while home on sick treatments. She worked hard at practicing on the cello her school gave her as part of being in the orchestra. She practiced her choir pieces on her own even when she wasn't able to be in school. 

She received 7 student of the month awards in the first 5 months of school and was known for being helpful and friendly. She performed in concerts and made a best friend.   

Her mom was so grateful for everyone who was willing to mask so Rebecca could have those opportunities.  

Thank you so much if you've read this far.   

I've been told again and again that I shouldn't live in fear. Many who have not walked our path the last 10 years, who haven't dealt with the constant disruption this disease is for our family, say that my kids could live so normally if we just let them attend all of the unmasked activities.   

They don't realize that that would just be a path to further isolation and very real physical harm. CFers rarely get away with being sick and not needing additional heavy pharmaceuticals, since the mucus in their lungs is particularly thick and sticky and infections don't leave the body naturally but stay awhile and wreak havoc.   

They don't realize the courage that it takes to say no. To not be hurt when those around us choose to act in ways that endanger and ultimately make it impossible for my kids to participate in normal activities. They don't realize that it isn't an option for us to pretend that everything's normal.   

Just a few weeks after our local school district shut everything down for a 5 day pause to try to get a handle on the detrimental amount of sickness that was making normal operations impossible, our State officials decided to end the mask mandate for Nevada. (Just in time for the Superbowl...) 😉

The local schools, under intense pressure, decided to do the same.  

We are still in flu season. Though COVID numbers and hospitalizations are going down, there is still a heightened danger of infection.   

While some are burning masks and celebrating the end of the 'abuse' that was making students wear masks in school, our family is once again isolated, trying to find ways for our children to thrive when there are few or no resources available.   

Even close, kind-hearted friends and family suggest that our precautions are unwarranted.  

I don't feel a need to change to fit someone else's misunderstanding of our circumstances. I got over that a long time ago.   

And I refuse to try to mandate what others choose to do.   

But, I do feel a need to tell our story and share an alternate viewpoint.   

We are the exception, and no, the world shouldn't change to suit us. But I'm sending out a plea to those who have different fears and concerns to please be compassionate and stop telling those of us who have to take additional precautions that we are wrong to do so, that our concerns are invalid. It is exhausting when we are already tired. 

And if it's not too much trouble, be creative with us and help us find a place where we can be a part ... safely.  

On the bright side, we get more Well Educated Heart in when she's home sick.   (WEH is an awesome FREE resource for heart education. ❤)

We read the story of Grasshopper Green today from the rotation and adored it. ❤  

Here's the link if you want to read it yourself. 😊

https://issuu.com/librariesofhope3/docs/storiesofinsects?e=23965438/37548829   

My 6 favorite things for fibromyalgia relief

Some days you get a mile run/walk in, some days you sit in a hot bath and cry because you hurt everywhere, can't think clearly, and everytime you try to move, the dizziness and fatigue make you worry you'll throw up.

Although I've suffered with fibromyalgia my entire life, it's been awhile since I've been hit with a fibromyalgia flare up. I mean, of course I always hurt, and there are times I can tell my brain is just not working up to par, but beat-down, drag-out, full-symptom disabled mode has, God be thanked, been rare lately.

But, today's my day, apparently, to remember just how bad it can be.

I'm reminded as well, just how hard it was to raise my little kids when high stress and no sleep was a recipe for fairly common flare ups. And, anyone who lives with chronic pain knows that that does not leave you at your best.

Today though, I want to mark this flare up misery with a little gratitude for the huge respite I've experienced in the last 6 months or so, as well as share some of the things that I believe have helped reduce my symptoms and the frequency of my crashes throughout my life.

1. Lower stress. Let me start by saying that, although we can control our boundaries and how much of others' stress we take on (which is so important - watch Brene Brown's youtube videos if you struggle with this!), we can not always control our circumstances.

For instance, my husband and I were taking college classes constantly,  raising 4 kids, and working multiple jobs up until 6 months ago. Recently, I've settled on my future goals with my music studio and education. Finally, after 9 years into their diagnosis, we've come to terms with our 4 children's CF diagnosis and have a pattern of care we can manage and some kind of a reasonable expectation of their health for the future. Just this month, we have prospects of moving beyond 130% below poverty level for the first time in our married lives. All of my children sleep through the night now, and have for the last 5 years or so. ;) And, maybe most importantly, in the last year, I've finally been in a place to receive counseling for myself to gain coping mechanisms to deal with childhood abuse. We are experiencing less stress in our home! Lol. In fact, I'll be honest, in 36 years of life and 17 years of marriage, I've never experienced this low of a level of mental, emotional, financial, and physical stress before. Lowered stress has definitely been a game changer. However, if you are reading this and thinking, I'm not there yet. I can't reduce my stress! Then in that case, do what you can, simplify any way you can, but the second one on my list applies to you and is even more important.

2. Hope. Connect with diety. Have a daily devotional where you: journal, pray, meditate, read scripture, express gratitude, make goals, and create. Have things around you that remind you to look up, smile, and focus on something positive instead of your pain for just a moment of relief throughout your day. Along with this, it's important that you allow yourself to believe that you are doing better than you think you are. Give yourself permission to receive grace and acceptance from God for where you are in your life. Despite what you think when you're surrounded by the pain, you are not always like this. Keep hope alive that things will get better again.

3. Rest. Get some. Sleep is one of the greatest tools to stop the vicious fibromyalgia cycle. I know everytime you lay down and try to close your eyes, every muscle and joint takes the opportunity to unkindly remind you that it's unhappy. I know sometimes the throbbing, aching, underlying pain isn't as much of a problem as the startling random pains that run like electricity through delicate and numb fingers, or hit like a baseball bat to your left knee, leaving you breathless. A couple of tips that I've found help calm the pain enough to get that precious rest are: hot epsom salt bath, GENTLE massage or light touches from someone who will listen and respond to what is and what is not helpful (even if it doesn't make logical sense), dark room free from distractions (I know, I know, I've been too distracted by the pain to be able to handle a dark quiet room, but remember, pain makes you more sensitive to light and sound, your best chance is dark and quiet), Intentional meditation (Breathe in for 5, out for 4. Notice your breathing, slow it down. Notice your heartbeat, slow it down with your breathing. Clear your mind. Acknowledge each concern and dismiss it, like dropping leaves into a stream. Register white and other noise. Keep breathing. Let your lungs expand to their full capacity. Imagine yourself weightless and moving in a frictionless space. Or, if more helpful, imagine yourself grounded and the sun beating on each part of your body, moving from your toes to your face. Relax each area as the sun moves along to include it.), heat on tender areas (electric heat pack, heated rice pillow, or hot running water).

4. Stretch and exercise. This one, I'm going to qualify with a very firm 'with caution'. When one has fibromyalgia, pain is constant, and so, the added discomfort and soreness that one would normally get from gentle exercise is magnified. In my experience, it's also vital to remember that your body may not rebound and heal as quickly as someone else's. As an avid exerciser throughout my life, I can now tell when a normal exercise routine or stretch is going to put me out for a couple days and I do not cross that line. When you feel you can, do a little. It's better than nothing and leaves you able to do something else another day. Limited energy is a hallmark of fibromyalgia - I think because our bodies are tired from processing constant input. So guage carefully. If you feel you can do something, low-impact activities are best. Among these, I've found the following have worked best for me: walking (preferably somewhere where you can feel the sun and connect with nature. This is also where I get my devotional in sometimes by listening to scriptures from my phone or having a conversation with God as I walk.), or elliptical indoors, Vinyasa flow yoga with any needed modifications (constant movement rather than holding stagnant poses puts less stress on the joints), and Tai Chi. Morning and evening sun salutations help me with stiff, sore muscles and pain both, before I go to bed, as well as first thing in the morning. Limited repetitions of muscle group specific strength exercises using only body weight have also been doable and helpful to me to increase overall strength and try to address bone density issues from not being able to do high impact workouts. Walking 30 minutes 3 times a week and doing 30 reps a day of something used to be my goal and I found if I could meet that goal, I felt much better. A caution though, you have to decide what your limits are. Something is much better than nothing.

5. When you feel you can, gently connect with the outside world. It is very easy to feel physically and socially isolated when you are, of necessity, home-bound and in pain. Find an online support group. Have an at-home hobby with out of home ties. Reach out to family and friends if you need help. Make someone's day by sending them a 'thinking of you' text or snail mail card. Make a list and get supplies when you are feeling well so you don't have to try to be creative when you are having trouble thinking. Depression is common for people with fibromyalgia, and one of the greatest ways to fight that depression is to know you can do something to lift another human being, and that there are still things in your capacity to do that make you important and needed.

6. Fuel your body. Eat a whole foods, plant-based diet and drink plenty of water. This is one I have just started experimenting with and I have had fantastic results. Dr. Fuhrman, The China Study, and the facebook group 'Discovering the Word of Wisdom' are great places to start learning how to fuel your body with nutritious food as well as protect it from the side effects of our S.A.D. (standard American diet), which consists mostly of processed, nutritionally barren grain, sugar, fat, and salt. About 4 weeks after I started only eating whole grains, fruits, and vegetables, I was noticing less pain and inflammation, more energy, and a happier overall outlook. I have also noticed that I have gotten sick less. Everytime I vary from this way of eating, I can feel things getting worse again. And, again, when I return to eating closer to a plant based diet with no meat (the first day I tried a plant-based diet,  I was shocked because for the first time since beginning tracking my food a year earlier, I was actually close to my protein and iron goals - go oats, rice, and beans!) and no added sugars or oils, I feel amazing again. (This is still a work in progress for me and has been a slow steady transition, so I'm definitely not 100%, but even then, I am noticing the good effects!)

So, that's my two cents.

Originally, I came across the idea for this by reading the article at the website in the picture (where I got the picture from-I was drawn in by the alluring promise!). I felt I wanted to add my experience to the conversation. Thanks for reading. I hope it helps someone fighting with chronic pain, or sheds some light on the condition for those trying to help, but who have no experience with it of their own. I assume it is like many things, where it is hard to understand unless you've experienced it. On that note, if you're suffering and feel very much alone, don't discount the promise that there is one who has had personal experience with every one of your trials. You aren't walking your path alone. Christ already walked it, got to the end, and came back to walk next to you.

An oldie, but a goodie

Today, I came across a link on my fb feed that I couldn't ignore!

It was from John Bytheway - in case you don't know who he is, he is a religious speaker/comedian who was really big in the LDS community when I was a teenager.

We went to his classes at BYU Education Week and even had a few of his cassette tapes at home - back when cassette tapes existed. ;)

He always had a fun message for the youth, grounded in important truths. It takes someone special to balance those two.

In fact, my sister and I were such fans that I remember the youthful heartache we both experienced when we learned that John had gotten married!

Well, here's just a little taste of a few classic parodies he put together from that long gone era. :)

Hope you enjoy!

http://johnbytheway.com/i-hope-they-call-me-on-a-mission/

The most beautiful title

This morning was rough. After a really rough Christmas season and two weeks with bronchitis, little sleep and the accompanying physical pain of fibromyalgia, I woke up this morning with no motivation. My stomach wheeled at the churning thoughts of everything that I needed to accomplish and an overwhelming weight settled on my spirit.

"I can't", I thought. "I just can't." I can not get up at 5am this morning and make sure my 4 CF kids get their treatments and meds. After a tiring night trying to make my 14 year old feel special on her birthday with her father gone and her brother vomiting from one of his severe migraines, I was especially hopeless.

My mind went through a list of the expectations I had of myself, as though to confirm that it really was impossible to accomplish everything I had been set to do. I can't be the Wolf den mother for 11 boys, primary chorister, bishop's wife, mother, college student, volunteer, visiting teacher, homemaker, supportive sister, daughter to parents in poor health, and Christlike all at once.

I turned to my scriptures, like I always do, for perspective on the morning. I needed 'strength beyond my own'.

I read some great quotes in our upcoming Gospel Doctrine lesson on righteously enduring. It validated the presence of a depressive spirit and counseled us to hang on and look with faith toward a day when we would be blessed for our steadfastness. (As I type this, I feel a sweet assurance I didn't feel at the time, although I did recognize the truth in the statement. I feel a sweet, healing presence now.)

I rolled out of bed and to my knees, the only thought that stood out in the many pleas that came to mind was that I would be able to do what the Lord expected of me today. I could not ask for the strength to do what he would do if he was here, because he is so much stronger than me, so perfect, but I could ask that I be able to do what God expected of me - knowing all my weaknesses, my pride, my offended heart, my physical pain, my fears - after all of that, to do what He knew I was still able to do with his assistance.

I felt a little assured and went out, determined that I would do my best.

My determination lasted about 15 minutes.

It only took one petulant look from my 5 year old when I told her I was making a Bento Box for her sandwich today to break all my resolve.

She doesn't like Bento Boxes.

I can't figure out why.

It was going to be my way of feeling like a good mother.

Of showing my kids and the world that I care about them.

It was cheap.

It wasn't what she wanted.

I wasn't what she wanted.

I wasn't good enough.

My fear, perhaps my greatest fear, I felt, had been validated.

I got defensive and angry.

"Well then, maybe you don't get a lunch at all until you can appreciate what I make."

Not a bad sentiment, but it was said with an angry, resentful and defensive heart.

And I realized that I had just self-validated the thought that I was found wanting, in my ungracious response to my child.

I had failed.

Again.

I tried to hold back the tears, but the disappointment was too great. I was so disappointed in my own weakness. And Satan whispered that my tears would bring my husband more concern and unhappiness. That I was failing and hurting him too. Satan is a jerk. And I believed every whisper.

But Satan can't hide all truth.

My wonderful husband was concerned, but he still wanted a kiss goodbye before he went to work.

My emotions stabilized a little during the drive to school as the spirit worked overtime to bring to mind successes, quotes, hymns, counsel, and other comforting thoughts and truths, pulling from hours and days of accumulated study and effort on my part and an eternity of other's concern and service. I listened with my heart to these soothing influences,which shows an improvement in and of itself to times past, when my self-defeat would have drowned out such gentle persuasions.

And we got to school.

Thank heavens for 1/2 hour commutes.

I needed every moment of that time to reach a place where I could appreciate what was to follow.

We pulled up to the school and I haven't spent the drive in a tirade. (A touch on my thoughts reminds me that not long ago just getting to school in this vehicle was considered a miracle, and we never did really find the problem, but. ..here we are.) And even though we are late, I can honestly wish my children a good day and blessings. I see my 14 year old leave the car, not with the tears she left the house with, but with a smile to accompany her birthday cupcakes. My 11 year old pops out of the car with a smile. My 5 year old still has some petulance, but is willing to be goaded into a half-smile. And my sweet 9 year old boy still needs a practice spelling test.

I am able to gently coach him through studying, then a test, on which he gets 100%. And as he leaves the car, with confidence and a cheeky smile, he says 'Bye mom!'.

And that was the moment.

The moment I realized that the humble word 'mom', is the best title ever.

Anything else I do or don't do. Anything else I succeed or don't succeed at. My husband and children, my own personal stewardship, my family - they are the most important thing. They are the sweetest blessing and reward.

That word,  'mom', as spoken by a 9 year old boy, encompassed so much meaning. Trust that I loved him, that I would be back, that he was safe, that all was going to be alright. All that hope and comfort and assurance was brought to him through having parents. Through having a 'mom'.

I was enough.