Rediscovering Faith

 

Immediately following the diagnosis and surgery I had many deeply personal experiences where I knew completely that God was with me and my family. He was directly involved in making my life something more. He wanted my trust and faith in him. As time goes on that feeling can begin to fade, to feel almost dream-like. Did it really happen?

I have been blessed to retain vibrant memories of some of these experiences. They take place in color, as opposed to a disjointed black and white. Even as I recall the events I feel the fullness in my heart as my soul seems to take a deep breath. The truths I feel so firmly in my heart are undeniable. I find myself identifying with Joseph Smith in his explanation of his experiences. "I knew it, and I knew God knew it."

My experiences in no way meet or measure the things that he saw in his first vision when confronted with tangible proof of God and His son Jesus Christ, but I have experienced deep confirmation of definite truths.

1. God lives.
2. He loves us.
3. He is our Father.
4. Jesus lived and died for us.
5. The Atonement is infinite and none of us is outside of His reach.
6. The Priesthood is real.
7. The faithful use of Priesthood power is the expression of Gods love for His children on earth.
8. My family is Eternal.

If God lives and is our Father, he desires for us all that a parent desires for their children, to meet the fullness of their potential. God wants us to be more than we are. Through the Atonement of Jesus Christ we are given the tools to overcome temporal challenges and move beyond to embrace the light and divinity of our souls. Our souls glow brighter than we can believe. Our souls reach out to one another, seeking the connection we had when living with our Heavenly Father. As we embrace our potential and divine nature, we will be given the power and strength to rise above the struggles of our lives, simply to be more than we are alone.

This state is not my final destination; it is simply a tool that can be used to address character flaws and weaknesses. As I meet Gods plan for my life and work to serve Him, the desires of my heart will be met. We do not subjugate our will, we live in such a way as to meet and match Gods will for us. He desires our joy. He desires for us to continue into eternity, not to fade into nothing but to live in glory.

How can I deny these truths as they have become clear to me? I know it, and I know God knows it.



God bless, have a beautiful Sabbath.

Almost Normal

Some mornings I wake up and feel so much like myself that the surgery and tumor are all a big dream, then I move.

Oh... yeah...

That did happen.

It wasn't a dream. It's real. I sat and cuddled with my boys today and realized that they don't see me as different. When I hold them, when they are in my arms, I am just mom.


Constant. Unchanging. Their safe space. A refuge from the challenges and scrapes of childhood.

"Mom, I need a Band-Aid."

"Mom, can I have breakfast?"

"Mom, I wet my bed."

This I can do. In this I can be normal. "It's ok. Yes. We'll take care of it." No pressure to do more or be more than I currently am, and I can do this. I can get up in the morning every day and be there. I can do my stretches, complete my PT and OT exercises, and get a Band-Aid or change a bed with my son.

I can be almost normal. Almost me. Despite everything that has happened and my changed abilities, I am still in here. My words get trapped. It takes ages to do things that are simple, if I can even do them anymore. Despite all that, I still exist and at least to my children, its like nothing is different.

 

 

Whelmed

"If you can be overwhelmed and you can be underwhelmed, do you think you could ever just be whelmed?"

"I think you can in Europe."

Awesome quote that has been going through my head today. There are days where I just feel blah. I say this not to feel sorry for myself but to acknowledge that I'm not always super positive. I have self care things I need to do to help prevent his, but sometimes it is just too much. Sometimes you get up, get through the day, and accept that this is as good as it gets today. Not forever mind you, but this is it today.

I have seen an audiologist and we have both good news and bad news; I may hear again just as before, or I may not.

During extensive testing it has become clear that my outer or external ear is working perfectly. My right ear has better than perfect hearing and is sensitive to many things such as tone and volume. The issue with my hearing is down to two options; either I have lost the fluid of my inner ear and it is impossible to heal this, or I have something pressing upon my nerve cutting off the signals trying to get through to my brain.

The next test involves electrical stimulation of the nerve to assess for pressure and damage. I get to be Uncle Fester and light up the world with my sparkling personality to find out if it is possible to hear on my left side again. I like that the answer is so blunt. Either I get to heal, or I don't. There it is.

Additionally we have also found that my voice issues are related to my brain overcompensating for not having the correct muscles firing when I speak. So, my body in its infinite brilliance, has recruited other neck muscles adding to my fatigue and creating a whispery, breathy non-voice to have any speech ability. I get to daily practice breathing and humming through a straw to help retrain the correct muscles. As I have done this I have regained some ability to laugh for more than one breath and I can sing more smoothly to my boys at night. No more cries of "No, Mom. Use your real voice."

I'm not totally overwhelmed yet, but there is a lot changing. My body continues to heal and I am constantly amazed by the blessing of our bodies. We possess incredible healing and coping power. God bless you.

 

 

Dig Deep

"I ran cross country in high school, and my teammates and I logged countless memories over the miles we ran. One of my most vivid is the sound of our coach yelling at us toward the end of the race, when our legs were leaden and our resolve was waning. His hoarse voice, straining to be heard over the crowd, would shout: “Dig deeeeeeeep! Diiiiiiig deeeeep!!!”

There is some pretty amazing research going in to brain resiliency and our ability to overcome obstacles. Recently I was sent a copy of the following article. It was incredible and said so much better than I am capable of what each of us must do to overcome seemingly insurmountable challenges. Dig Deep

Every day I must dig deep to refocus on what matters. To redirect my thinking to find limited abilities acceptable. I know that God loves me. I know that there is more for me to do. I become frustrated at my inability to do it, until I remember to Dig Deep.

"Cognitive rehabilitation is rarely linear or easy. Some people struggle with anger and loss that undermines their best efforts to get better. But I am often amazed by the creative and graceful ways people reinvent their lives."

 

"If only we could bottle the energy that allows some people to negotiate a new life that is truly satisfying. I cannot promise all my patients that things will turn out as they wish, but I can tell them that the human spirit is amazingly resilient. People can (and do) thrive in the face of devastating loss.

In thinking about how to foster hope, I find myself recalling my high school coach's earnest shouts. Now I think I understand the message he yelled when we were at our weariest: I know you think you have nothing left, but I believe you are capable of more. Switch gears. Be strong. Dig deep."

Story Book Romance

I have had some challenges as I try to function at a level where I can maintain things without constant help. Sometimes I make it, sometimes I don't. On those days I reach for my support, for my husband.

We have struggled as all couples do and have times where we bear one another up. But always he is there. Throughout this trial he has been loving and patient with me, when I could not be. When I was angry with myself for loading the dishwasher with cups and bowls upside down- he said that it was ok, we would rerun them.

Tonight, was the end of  a long day. Campbell's soup and grilled cheese starred as dinner. No complaints just praise. We spent the evening with the boys, cuddled on the couch. It was what I needed to remind me of what matters.

The sink has dishes, toys are still out in some parts of the house, laundry is folded but not put away- this is not what matters. He reminds me "Hey, there are no expectations. Do your best. What do you need tonight? How can I help?" He means it. The other day I made what I considered to be a sarcastic self-deprecating remark, "Hey, that's my wife you're talking about."

He doesn't read what I write- this is my space and he doesn't want me to worry about who is reading. He wants me to be honest and open with myself and the world about what its like to have your voice trapped inside. I never make this much sense in conversation. This is an outlet where I can write, with no pressure. Where I can just be what I am. He loves me. He proves it everyday.

I love the following story, I found it a little while ago and just cried. It is easy to forget that story book romance is just that. Real romance copes with the health and the sickness, poor and rich. It copes with juggling medical bills, changing circumstances, pain, and emotional outbursts. It reassures us that we belong. We are important and that someone has our back.

Impossible Questions

I don't want a fairy tale, I want a grown up love that accepts as you are and also allows for change. Where you both make mistakes but the love doesn't leave. Where you both make an effort to work together.

Fun with Brain Tumors

Despite all brain tumor and recovery support groups being cancelled I found a small group of people who are struggling with meningioma tumors; either as patients or as parents/loved ones of patients. One of the things we do is to make it a game, have fun with it. Yesterday we all spent time writing our own version of a haiku on our experiences.

Haiku is a Japanese form of poetry consisting of syllables and cadence rather than rhyme. They are short and simple, only three lines. The first line has 5 syllables, the second 7, and the third back to 5. The responses were from heartbreaking to hilarious.

K:        It's not over yet;
                      fear won't make me run too far,
                                live life and laugh loud.

S:         Meningioma
                      Oh how I hate to have thee
                                 Please go away now

W:        mysterious one. 
                        manifested destruction. 
                                 courage was your death.

J:           Pestilential guest;
                         Twisting my mind upside down;
                                  Please do not come back.

My newest attempt:

             Lurching with my cane        
                         Breathing, wheezing and double vision
                                    Seeing what matters

Finding ways to have fun is sometimes your only point of solace. Make it a game, be silly, be a child, play. You will find the things that matter most take up the least amount of resources.

Have a wonderful day!

My Love Story

After talking to a dear friend today I began to think of all that has gone on and the many changes and blessings I have experienced.

• Help when needed with no expectation.
• Loving support and acceptance from those closest to me.
• A medical team that is one of the best.
• Keeping my language skills, some have altered but they remain mostly intact.

In thinking over all that has changed I was filled with desire to look at the pictures from my surgery. I stumbled across the following pictures and my heart is filled with gratitude today.