Don’t change that dial…yes, this is still MormonSoprano! However, in honor of the upcoming New Year celebration, I made a few little festive changes. I also activated my “falling snow” feature, as it makes a nice double for confetti, don’t you think?
It is hard to believe that we are already ushering 2008 out the door, and 2009 is marching boldly in. I don’t know about you, but this year flew by for me!
One year ago, things were decidedly different in my life. “Happy New Year 2008” evoked excitement and trepidation as I prepared to embark on a completely different direction. Change is like stage-fright. If it doesn’t kill you, the adrenaline rush will thrill you! In fact, I believe that over the past 5 years I have experienced enough big “CHANGE” to accumulate an amount of adrenaline equal to experiencing my debut at the Metropolitan Opera. So there you go. In some sort of circuitous “virtual” logic perhaps I have managed to “accomplish” that life-long dream of mine (without actually ever doing it). Maybe I will cross it off my bucket list. 🙂
I know that life is unpredictable, but I always find it surprising. It is hard to believe that only 18 months ago I was living an hour-by-hour existence, praying my child would live another day. Some people keep warning me that long posts are a waste of time because people don’t like to read them. However, I’m going out on a limb here to share a personal story in celebration and gratitude. If you take the time to read it, I hope you will be rewarded with feeling the love and faith it represents. Perhaps it will also help you in some way.
There are certain times when each life is required to go through more than just the average day-to-day trials. This is when we face what I call a crucible. The scriptures refer to these times as the “refiners fire“. In order to refine a precious metal, or extract it from stone, it must be heated to a dangerously high temperature, using a crucible. The year of 2007 was The MoSop Family Crucible.
In January ’07, after a successful first semester of High School and happy holiday season, my eldest daughter (DD#1) woke up with a sore shoulder. The pain increased exponentially over the next few days, so we consulted a sports injury doc, thinking it may have been from her dance class. He decided it was a slipped rotator cuff, and also declared that she should never dance again because hers was likely to continually slip out of socket. After copious amounts of tears , DD withdrew her from her beloved dance classes. Then she started a bi-weekly physical therapy. It didn’t work. By end of January, the pain had spread all the way down her arm, and she could no longer carry her books, or hold a pencil in her hand to take notes in class. Worse, it was now spreading. Her other arm was experiencing the same symptoms , and then her knees and legs followed. Doctor #1 decided his diagnoses was off the mark, and referred us back to our family doctor.
DD started experiencing serious dizzy spells, and her pain was so high that it was hard for her to concentrate on anything. Homework was a nightmare. Doctor #2 loaded her up with pain meds. They didn’t alleviate her suffering, but they sure heightened the dizziness. By February, DD had to withdraw formally from school. She lay curled on her bed in a fetal position most of the day, and had to have assistance getting up to use the restroom and eating. By the first week of March she could barely walk, and no amount of heavy pain killers and muscle relaxants would take the pain away. None of the many medical specialists we consulted during these weeks could give us a definitive diagnoses. Maybe it was MS. Maybe it was juvenile arthritis. Maybe it was some sort of cancer…? All very scary prospects. But none of the pieces of the puzzle added up. Doctor #3 sighed and admitted “well, she’s a mystery I can’t solve”. Doctor #4 referred us directly to Doctor #5 who went so far as to insist that since he could not diagnose her, and all tests were coming back negative, it must not actually exist. Therefore it was all psychological and DD was pretending in order to get attention. His haughty accusation crushed DD. Needless to say, that was not a good day.
Meanwhile, all the treatments and medications were not helping, and many made things worse. In spite of my frantic efforts, DD’s body was shutting down. Every day some new symptom arrived to inflict further agony. It was excruciating for her to swallow, so eating and drinking became a burden. Her subsequent rapid weight loss and dehydration was truly frightening. Her little heart and blood pressure were in serious trouble! She was always dizzy now, and even fainted. Meanwhile, her formerly happy active teenage life was in shambles. She had to cancel her Prom night plans. Her friends got busy with school and parties and the calls and visits slacked off. When someone did call, it just reminded her of everything she was missing and made her feel worse. She couldn’t sleep. She couldn’t hold a book to read. She couldn’t watch TV because it aggravated her dizziness. What was left for her? Hour after hour she lay on her bed in agony, sinking into depression and losing the will to live. I knew that if we could not find help very soon, we were going to lose her. We had exhausted our ideas. Family and friends joined us in fasting and prayer pleading for help from the Lord.
Our prayers were heard, and answered. It was recommended that we try one more specialist. When we arrived for the appointment the doctor we were supposed to meet with had been called away to an emergency, and we were greeted by a new physician to the clinic; Dr. Z. We soon learned this was not a coincidence, but part of the Lord’s plan. Dr. Z had trained under the leading USA researcher of a rare and difficult to diagnose nerve disorder called Reflex Neurovascular Dystrophy (RND) (sometimes called RSD, S =Sympathetic) which is in the family of amplified muskuloskeletal pain syndromes such as fibromyalgia. When he examined DD, he recognized this condition immediately. However, he did not leap to pronouncing the diagnoses. Instead, he handed me a stack of information, which included a couple of very scientific research papers, and asked me to read as much as possible while he attended to other patients. Even though Dr. Z was quite certain of the diagnoses, this admirable doctor paid respect to the power of a mother’s intuition, and actively included me as a partner in the diagnoses process. It was beyond wonderful. Added to this was the relief for DD’s pain to finally be validated, and for all of us to have a name for the dragon we were fighting. I wept tears of joy and gratitude.
The human nervous system is very fascinating and complex. There is much still to discover. Nerves send continual messages to our brain for all of our “parts” to move and function. Nerves are also receptors of pain and send needed warnings. However, in RND, they get hypersensitive, and send an overload of messages, which in turn makes blood vessels constrict, which causes pain, leading to more pain signals…thus, an unending escalating cycle creates an internal cyclone spreading and picking up speed throughout the body.
This was just the beginning of our journey, however it was the first major boost of Hope. We learned that there was intensive treatment, but there were no treatment centers in our area. The nearest clinic was over 1000 miles away. All of the clinics had 6 – 9 month waiting lists! My daughter was barely going to make 9 more days, let alone 9 months! Once again, I was on my knees pleading with the Lord for help. Dr. Z. didn’t let us down. He called all of the clinics to try to get us bumped up the list. However, most children are just as bad off as my daughter, so that approach didn’t work. However, in speaking with the head researcher, Dr. Z learned there was a physician who had recently finished training and was starting up a program at a children’s hospital in the Northwest. Things started happening rapidly. The next morning I received a call from an admitting nurse from that hospital. They had a bed opening up. She apologetically told me it would be “ready in 5 days”, and asked if we could possibly be there in 3 days. I wept with joy and gratitude. The Lord had opened the door and was taking charge! Within three days I had hastily made arrangements to take some time off work, threw a few things in a suitcase while spending night and day on the phone with our health insurance company and the hospital trying to get approval and coverage (just the beginning of a long insurance battle).
A Long Journey
Mr. MoSop had just started a new job with a long commute, thus, our younger daughter (DD#2), had to hastily move to her grandmother’s house. Thus, in just a few short hours our family was separated and everything was uncertain and highly stressful. Initially, we were told to plan on a 2-3 week treatment. So, I naively packed light, and took my office laptop reassuring everyone I would keep working and they would “hardly even know I was gone”. In the end, DD would spend nine weeks hospitalized miles away from our home, family, and friends. I will be eternally grateful for my supportive boss and coworkers at home, and the many angels who came into our lives, including the Ronald McDonald House. They took me in and provided a beautiful private room and shared kitchen facilities. The staff were always ready with a kind word, and a hug, They anticipated my many needs as my stay lengthened. The house also provided a built-in support network of parents with critically ill children. All of our stories were different, but our heartaches and worries were in harmony. As each of us endured our own crucibles, we were linked and bonded together in the process becoming a second family.
The experiences and stories of that time are too numerous to tell here, and are enough to fill a book. Words can describe the facts and stories, but are incapable of helping one FEEL and LIVE through those changes. Suffice it to say my soul was broken down into a million pieces, and then the Lord took me in His hands and recreated me. Each member of my family experienced this in their own individual ways.
My eyes were opened to the daily miracles taking place around me. The tender mercies of a hospital can only truly be appreciated and noticed when one is “living” there long-term. Time stops, and transports you to a ‘parrallel universe’ where moments are measured based upon pain medication schedules, IV changes, and the next test or surgical procedure. “Night” and “Day” mean nothing except to designate which nursing team has come on shift. Television is a boring babysitter – but also a blessed progress gage in disguise, for when it can be used, that means a patient is not critical any longer, and on the mend.
I discovered so many blessings this experience brought me. My “gift list” grew and grew each day. When I finally flew home, seated beside me was a daughter whole and healed and vibrant! Her doctors joked she had received their special “extreme body makeover” package, and that no one would recognize her. (this was true!) She was reborn. Seated beside her was a mother with a “changed heart” of her own. My soul had been made whole, and healed and vibrant! I was had a new outlook, and a new direction. One of the treasured gifts of those long weeks was time to internalize the Savior’s command to “Be still, and know that I am God” (Psalms 46:10) During all of that stillness, I learned to listen. And when I was still, and listening, that is when I heard the Holy Spirit speak gentle words of comfort and personal directions.
Thus, New Year 2008 became my year to act upon those directions, and to continually strive to find time to keep listening. I don’t know everything about life, and I make many mistakes. There is so much I may never learn. But, there are a few things I do KNOW.
1. God is real.
He lives. He is all powerful and all knowing, and yet He is our kind loving Heavenly Father who is approachable. He knows our name. He knows our needs. He will never forsake us. He is eager to bless and help us if we will reach out and ask.
2. Jesus Christ is real
He is the only begotten Son of God, and the Lord of heaven and earth. Like a true superhero, he sacrificed everything to save the world. He left his heavenly throne, and descended to earth in the humblest circumstances to live as a man and fulfill all that his Father sent Him to do. He taught us how to live. He established commandments and rules that will bring us protection and happiness when we follow. He suffered for all of our sin and pain and illness and difficult mortal experience, so that we would not have to eternally suffer. He suffered a mock trial and died nailed to a cross. His broken body was laid in a tomb with a heavy stone rolled across by several men. Three days later, the women came to prepare his body properly for burial. They found the stone rolled away, and the body gone. The scriptures detail for us Jesus appearance to Mary, and then to many others. His spirit had taken back His body again and had become a complete, whole, restored, resurrected being.
He lived! and He still Lives! Jesus Christ conquered the spiritual death of sin, and the physical death of our bodies. This was done so that all of us can be healed and restored. I know this is true. It is real. It happened. And because it happened, I have Hope. I knew that my daughter could be made whole again if that was God’s plan, and I also knew that if she died, as heart wrenching and terrible as that would have been for our family, it would not be the end. Because of Jesus Christ, the grave is just a temporary mortal condition. Each one of us will live again! Jesus Christ has provided the only way for our eternal progress and salvation. When we accept Him and believe in Him and follow His commandments, we are on the path to return to our Father in Heaven and live with Him again forever.
3. There is a purpose for our life.
When we go through life crucibles and experiences which we do not think we can possibly bear, miraculous things happen. When we turn to God, and trust in Him, our eyes are opened to the miracles. Step by step our souls get stronger, our minds are given the ability to grasp new concepts, and expand to understand complexities. Small tender mercies get us through the darkest hours. One of my favorite scriptures has become engraved on my heart:
“Weeping may endure for a night, but joy cometh in the morning”
As we celebrate the dawning of a New Year, we are celebrating a symbol of hope and rebirth. Just as Jesus Christ has given us the opportunity to have a fresh start and to be reborn spiritually, The New Year gives us the chance to make fresh resolutions for positive changes which will improve our journey. May our hearts be filled with Gratitude for the gift from God of our past, our present, and our future.
I send to you and your family my best wishes for a Hopeful, Joyful and Blessed New Year!
MoSop, what can I say? I am so touched by your post today. What an absolutely incredible experience. I had no idea, of course – how would I – but it just seems weird that I did not know this about you all this time that I’ve been reading your blog! Thank you SO MUCH for sharing this. You can be assured that I read every word!
My medical education side is very interested to know what kind of treatment they gave your daughter, and I understand how you couldn’t add it to this post. Any way you could point me to a web site that talks about the condition and the treatments?
I have also gone through some “crucible” experiences this year (although not nearly to the degree that you did) that have taught me to see miracles every day and to listen to the Spirit more closely. That in itself is a miracle and very much a part of what we were meant to experience in this mortal sphere.
Thanks again for sharing!
Lorena – I have added links to the post for further study on RND. Thank you for reading!
I, too, read every word. Thank you for sharing a part of yourself with me.
I guess I am experiencing a crucible at this time. I want to say I am strengthened by your words to believe in God more, but alas, that is more of my struggle at the moment. Oh, I don’t mean to discount your belief of Him. On the contrary, I believe that He lives and that He loves you and knows you. You have, in turn given your talent for singing and words to those who need to know and feel of His goodness. Maybe, someday, I will be able to do the same.
TabFan – thank you so much for reading. Being human means we all will suffer times of deep despair and doubt. I believe the crucible you are enduring currently will turn for your good, and for the good of others. Remember that “The worth of each soul is great in the eyes of God”. You have greatness within you that is unique, and have gifts no one else can offer the world. The spirit will help reveal these things to you in time. Hang in there.
Wow, I just found this blog today by chance. However, it was Heavenly Father who lead me here. My sister-in-law just told me that she had the same thing when she was in high school. Then I found your blog and read this tonight. I was just reading about your new year resolutions and found this one.
From my experiences with my daughter you have described the hospital living experience well.
Very well written. Beautiful. Thanks