My brother-in-law, Michael, sent an email and included the following story:
The Refiners Touch
"There was a group of women in a Bible study on the book of Malachi. As they were studying chapter three they came across verse three which says, "He will sit as a refiner and purifier of silver." This verse puzzled the women and they wondered what this statement meant about the character and nature of God.
"One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study. That week the woman called up a silversmith and made an appointment to watch him at work. She didn't mention anything about the reason for her interest in silver beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that, in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest so as to burn away all the impurities.
"The woman thought about God holding us in such a hot spot - then she thought again about the verse, that He sits as a refiner and purifier of silver. She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined. The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. For if the silver was left even a moment too long in the flames, it would be destroyed.
"The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?" He smiled at her and answered, "Oh, that's the easy part -- when I see my image reflected in it."
"If today you are feeling the heat of the fire, remember that God has His eye on you and will keep His hand on you and watch over you until He sees His image in you."
I can't tell you how much I know this is true. A year and a half of no answers and consistent decline and I felt like I was at the end of my rope. My van had just been hit at the YMCA and it was the straw that truly broke the camel's back. A few days later, I got the call that was a "turning point" for us. It was the diagnosis and a treatment.
I would have never guessed that "Riboflavin Transporter Deficiency" was the cause of auditory neuropathy, optic atrophy and ataxia. If left untreated, it's fatal. I was relieved to hear there's a treatment. It involves high doses of B2. Is it reversible? No; however, there should be improvement. With that being said, I believe in a God of miracles and if He wants to heal the boys, it will happen.
When we saw the geneticist, we asked questions and were concerned about the girls. Apparently it's pretty rare but can run in families with siblings and cousins having symptoms. We had the girls tested and we're waiting on results. The boys were started at 200-400 mg of B2 that can be purchased at GNC, Amazon or Sprouts. We were to increase their dose to 1000 mg a day.
We have Brayden swallowing 100 mg tablets with marshmallows. He has his own pill box broken out by days and he does a great job of taking them. Bryce is a little harder. We have to crush the tablets and disguise them in juice, applesauce, smoothies, sandwiches and anything else that will work. We're looking into a liquid form and hope to be able to use that for smoothies and drinks more easily.
I can't tell you the burden that was removed off my shoulders with the diagnosis. Even more so, that there's a treatment. I'm still somewhat in shock that we finally have a diagnosis but I'm incredibly thankful. I feel like the refiner's fire was getting pretty hot and I literally was pulled out of the fire.
I'm thankful for a loving Heavenly Father and Savior that know me and my family and blessed us with answers. I learned things only that experience could teach me. It was hard and I'm not so sure I would "pick" this trial, yet, the blessings from it have been wonderful.
I better understand my Heavenly Father and know how it must have been hard to see His only begotten Son suffer for us. It was painfully hard, almost unbearable, to watch my boys decline. I better understand my Savior and His love for those with disabilities. I understand another component of the atonement that I never considered before. He suffered for our sins and sorrows. Some of those sorrows involve our trials that shape us to become more like Him. He suffered so we could become more like Him. I never considered this before. I feel like my understanding has been opened in ways I never knew before. God is good. He is real and He is in the details of our lives. He loves us and I stand amazed at how customizes our trials to teach and help us to "become".
