I want to share my talk with you not only because I want to document it, but because I hope that it may enlighten your minds, hearts and spirits. And who knows, you might learn something about Mormons or Fragile X that you didn't already know...
But, before I share my talk, I want to share some of the pictures from our holiday celebrations.
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| Ha! Jessie looks a little concerned that Tynelle is giving the "facebook" face. |
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| This is what I like to call "firecracker hair" who needs sparklers when you have hair like this?! |
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| We worried we were gonna be rained out for the fireworks until the double rainbow came out. |
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| My mom and I laughing about making popcorn for the crowd! (I made kettle corn and she made buttered) |
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| Isn't that just how it goes when you take people's pictures, they either "high five" ya for it, or they throw popcorn in your face... |
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| Sorry, Aaron. I thought this was such a cool picture, but now that I have it up here it looks like we were having fun with blue darts... just sayin' |
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| Ya, that's cool. I really am enjoying using full manual on my amazing camera!!! |
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| I think we are going to have to make the glow necklaces a tradition. |
For those of you who want to read my talk, it starts...
now...
In 2004, when Brother was 5 1/2 and Sister was 9 months we found out that they have Fragile X Syndrome. Fragile X Syndrome is the world's leading cause of inherited mental impairment and the leading cause of inherited autism along with many other physical and emotional challenges I will not enumerate today.
I was the first in my family to even hear of and learn of this diagnosis.
I had the daunting task of teaching myself, my husband, my family and all others who came to know our family. It was overwhelming to try to teach about FXS when I was still learning about it myself.
I was walking on uncharted territory, it seemed.
So when we were asked to talk about Pioneers it actually wasn't a topic I was excited about. But, when I started looking at my own life and seeing where I had had my own pioneer experiences I got more excited realizing that we are all pioneers in one way or another.
I decided to look up the definition of "pioneer" and I was so excited to see what all it entailed and I would like to speak on 3 different aspects of Pioneers:
1) Noun: A person who is among the first to explore or settle a new country or area.
2) Verb: Develop or be the first to use or apply (a new method, area of knowledge, or activity).
3) Synonyms (or words that have the same meaning): pathfinder - initiator - trailblazer
So first #1: Noun: A person who is among the first to explore or settle a new country or area.
One of the best-known and best-loved stories of the Mormon pioneers is the testimony of Francis Webster, a member of the Martin Handcart Company. He is known as the unnamed old man in
the corner of a Sunday School class who arose to silence criticism directed toward those who allowed that company to come west: "I ask you to stop this criticism. You are discussing a matter you know nothing about. Cold historic facts mean nothing here for they give no proper interpretation of the questions involved. Mistake to send the Hand Cart Company out so late in the season? Yes. But I was in that Company and my wife was in it. . . . I have looked back many times to see who was pushing my cart but my eyes saw no one. I knew then that the Angels of God were there. Was I sorry that I chose to come by hand cart? No. Neither then nor any minute of my life since. The price we paid to become acquainted with God was a privilege to pay and I am thankful that I was privileged to come in the Martin Hand Cart Company."
I was the first in my dad's family to have a child diagnosed with Fragile X. I felt overwhelmed and unsure of what our future would entail with 2 children who had FXS. I didn't know who to turn to or where to go. Heavenly Father guided us in our journey meeting people who also had children with FXS, the opportunity to go to Sacramento for research and many, many other little miracles along the way. Was it a daunting path before us? Yes. But, many times I know there were angels carrying our load.
Marc and I had decided, mostly because the pressures of the world say that if you have children with challenges you should not have more children and that we were done after 2 children.
Heavenly Father had other plans and we were blessed with Baby. She was diagnosed with Fragile X as an infant.
As I would let people of the world know about Fragile X and all 3 of our children having it they would scoff and make comments about our choices. But, they don't know the eternal perspective we have and we are so grateful that we have the priveledge and blessing of having our 3 beautiful children and the lessons they teach us, and those around us daily.
#2 Verb: Develop or be the first to use or apply (a new method, area of knowledge, or activity).
In this month's issue of the Friend Marianne Dahl Johnson shares a story called, Saving The Wheat. She tells us of a young boy and his family who had settled in Salt Lake in 1847. Food was scarce and Neil was often hungry. ~After a cold, hungry winter, spring finally came, and Neil's family moved to Mill Creek, a few miles from Salt Lake City. They planted a small crop of wheat. When the grain came up, it looked so strong and good. How wonderful it would be to have plenty of flour next winter! But then the crickets came.
Crickets were everywhere. There seemed to be no end to them. They were big and black and ate everything in their paths. Everyone worked in the fields, trying to kill the insects. But it seemed useless. There were just so many crickets.
Finally a day of fasting and prayer was planned. Father and the other men went to Salt Lake to pray for help from Heavenly Father.
While Father was gone, Neil, Mother, and Margaret went into the fields again to fight the crickets. Neil was tired, and the thought of another hungry winter made him want to cry. As they worked, it suddenly became darker. Neil looked up and saw thousands of gulls in the sky. Mother threw up her hands in despair. "What the crickets won't take, those birds will!‚" she exclaimed.
Mother sat down and cried. Neil cried too. He didn't know what would become of his family.
Too tired to fight the bird invaders, Neil and his mother and sister watched the seagulls.
"Mother, look!‚" Neil shouted. ‚"The gulls aren‚Äôt eating our wheat. They are eating the crickets!"
Today I often hear people express that they wish there were miracles today as there were in Jesus' time or pioneer times. I testify that there are miracles all around us everyday, we just don't realize them.
I cannot not begin to express my gratitude for the modern day pioneers who have developed medicines, applications, therapies and activities that have blessed our children's lives. Not only do I get to see those miracles bless our lives but I get to watch as miracles unfold before my eyes as our children accomplish things we didn't know they could.
#3 Synonyms (or words that have the same meaning): pathfinder - initiator - trailblazer
Brigham Young was a trailblazer in every sense of the word and sent settlers to many areas to establish the work of the Lord.
In the December 2009 New Era we are told that in 1855, Brigham Young asked 26 members to settle among the Native Americans on the Salmon River; they established Fort Lemhi in June 1855. Five years later more LDS settlers came to the Franklin area. They dug canals in the winter snows to be ready for summer irrigation. Church members taught agriculture, preached the gospel, and shared supplies with the Native Americans. A prominent chief, Shoshone Chief Washakie, was baptized during the early colonization efforts.
When Idaho was given statehood in 1890, Latter-day Saints comprised about one-fifth of the state's population. Three Church Presidents have been natives of Idaho: Presidents Harold B. Lee, Ezra Taft Benson, and Howard W. Hunter.
I try very hard to be a pathfinder for my family in this world of Fragile X. My goal is to bring awareness not only about Fragile X Syndrome but about an LDS family dealing with Fragile X Syndrome. I use my blog and facebook to promote awareness of Fragile X but always try to make sure that people know about my faith in my Heavenly Father and Jesus Christ. I haven't seen anyone baptized because of my endeavors yet, but I know that there have been people who are intrigued to understand our way of life.
I want to share with you a Primary Song:
You don't have to push a handcart,
Leave your family dear,
Or walk a thousand miles or more
To be a pioneer!
You do need to have great courage,
Faith to conquer fear,
And work with might for a cause that's right
To be a pioneer!
("To Be a Pioneer" Children's Songbook, 218-19)
I want to end my talk with the words of our Prophet, Thomas S. Monson:
"We honor those who endured incredible hardships. We praise their names and reflect on their sacrifices.
"What about our time? Are there pioneering experiences for us? Will future generations reflect with gratitude on our efforts, our examples? You young [people] can indeed be pioneers in courage, in faith, in charity, in determination.
"You can strengthen one another; you have the capacity to notice the unnoticed. When you have eyes to see, ears to hear, and hearts to feel, you can reach out and rescue others of your age."
"Turning the pages of scriptural history from beginning to end, we learn of the ultimate pioneer—even Jesus Christ. His birth was foretold by the prophets of old; His entry upon the stage of life was announced by an angel. His life and His ministry have transformed the world. "
"One sentence from the book of Acts speaks volumes: Jesus went about doing good‚ for God was with him‚" (Acts 10:38).
"His mission, His ministry among men, His teachings of truth, His acts of mercy, His unwavering love for us prompts our gratitude and warms our hearts. Jesus Christ, Savior of the world‚ "even the Son of God‚" was and is the ultimate pioneer, for He has gone before, showing all others the way to follow. May we ever follow Him."
I hope that we will remember that as we pull our "handcarts" through life we will realize that there are angels pushing from behind helping us the entire way.
Amen.
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