Today is National Rare Disease Day--The motto is "Hope! It's in our Genes" and you wear blue jeans in support of Rare Disease Day. I decided to modify it a bit for me as my hope is in my God who created me just as He planned for my ultimate good and His ultimate glory. It's always been kind of fun that Rare Disease Day is in February since it's my birthday month and blue jeans fit right in with my country girl heart. My family jokes that the only good genes we have are the ones we are wearing.
This last year when we moved to Alabama and I started at the clinic they did a genetic panel on me. They have discovered 50 different genes that cause PCD and can test for 40 of them. My genetics came back with "two genes undetermined". Dr. Solomon was like, "It's really interesting--you don't have classic PCD and hopefully as tests for the other 10 genes become available we can test for those." So I'm rare within the rare. I did a blog post awhile back called Rare to the Nth Degree where I gave Dad T. all the statistics and he calculated the probability of me being conceived--it was 3.3 in 100 quadrillion--3.3 with 14 zeroes behind it! But God says in Psalm 139 that I am "fearfully and wonderfully made" and "He knit me together in my mother's womb." As Joni says, He permitted me to be born with PCD to accomplish that which He loves--making me more like Christ. It's definitely not an easy road, but it's the road God has chosen for me and He goes before me and I can trust that not a single nanosecond of my suffering is wasted--and five minutes in heaven will make up for all the suffering here on earth.
Yesterday in Sunday School, Ben taught on Psalm 73:25 "Whom have I in heaven but You and besides You, I desire nothing on earth." When we have the right perspective and remember that our relationship with Jesus Christ is of infinitely more value than anything on this earth--we can lose everything in the blink of an eye like Job or thousands of other saints throughout history, but the One thing of most value we can cling to and know that we have Him in this life and more importantly in the life to come--for all eternity! Once more, it was a very timely message as I await biopsy results today--I should get them today after 1. Jord and I feel all the prayers and God has truly flooded my heart with His peace that transcends all human understanding!
We still have to live in this world though, and while my ultimate hope is in my Savior, raising awareness for the struggles that people with rare diseases face is obviously near and dear to my heart. I'm going to keep it simple and "Share some rare" from my PCD friends--hope you learn something new and recognize that there's a LOT of people affected by rare diseases in this life. As believers, may we grow in the grace of entering another's suffering to provide encouragement and hope in the midst of the reality of a lifetime of doctor's appointments, painful medical procedures, more questions than answers, one doctor's appointment that then yields multiple tests and other appointments, the exhaustion from trying to coordinate it all, the financial burden that has literally buried Jord and I at times, the high rate of divorce in couples with chronic illness (75%), and so much more. Praise God, because Christ died on the cross for my sins (and yours!) and I have repented and trusted in Christ alone for my salvation, One Day all this sorrow and sighing and suffering will flee as I will be in the presence of my Savior and forever free from the presence of sin and all it's consequences! Come quickly Lord Jesus!
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That’s not how the system works....nor is a transplant an easy cure-all, nor does everyone qualify for a transplant, etc.... https://pcdsmiles.com/.../21-things-not-to-say-to-a...
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