It’s been almost two months ago now. My husband and I, after waiting many weeks, learned that we both are carriers of the mutated gene that causes Batten disease. This is the disease that our two sweet nephews have. Being that my twin brother married my husband’s sister (fun, I know!), my husband and I had the same genes to work with. Since we are both carriers, there was a 25% chance that our son, Colby, would have the disease. (this was also the case for Titus and Ely) And so, testing began for Colby. To “have” the disease, the child has to inherit the mutated gene from both parents and so therefore, has a complete pair of bad genes. Anyway, we waited for a couple weeks after testing Colby, and each time the phone rang, my heart started pounding and I wondered if it was the genetic counselor calling.
As we waiting to hear about our son’s results, I found myself really enjoying each moment with him. Because what if someday, he won’t be able to talk and run and see. I also found myself preparing for the worst….just in case. And trying, at the same time, to completely give my son over to God. He has had no delays up to this point, so I also wanted to cling to that truth….he was going to be ok, right?
Well, we ended up missing the phone call, and so I had to nervously listen to the recorded voicemail…(torture!) .I was trying to read into the counselor’s voice. She sounded so…neutral. Then she finally said, “Give me a call back. I have good news.” Good news!! So, I called her back. Colby does not have the disease! He is a carrier, however. So, at this point, I should be ecstatic right?! I was! But, as hard as it is to describe, I found myself having a hard time sincerely rejoicing. Because at the same time, I knew that my sweet little nephews, were home carrying this thing that was slowing taking over their bodies. I had this sense of, “I knew he was going to be ok.” To, “He’s ok! Wow….thank you God for this!” As strange as it sounds, it took me several days to finally relax, find relief, and stop anticipating the worst. It also took me several days to be okay with rejoicing, to know that I am not guilty for rejoicing. Our minds and hearts do strange things sometimes, don’t they? Maybe it’s because we are such incredible souls, designed by God.
Romans 8:38-39 “For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.”
Deuteronomy 31:8 “The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.”
I share these passages because they are so incredible! If I could just take a moment every day and just fully, completely, with all my heart and mind, believe these…wow!! And I can believe them, because they are true.
May I talk about the elephant in the room? I pray that the LORD speaks through this paragraph. Not my words, but Your’s God. The question is placed before us….Why did Titus and Ely get the disease and not Colby. Why do Danny and Bekah have to go through this and not Brad and I? I believe that it is okay to ask this, however, when it becomes consuming in our thoughts and we focus on this aspect constantly, we are in danger of misunderstanding who God is. We are in danger of placing blame somewhere where it shouldn’t be. We begin to doubt God’s goodness. We begin to doubt that He is, indeed, in control. We begin to not believe that everything is touched by God.
I just heard this a couple of weeks ago…..Everything in our lives (the bad) is allowed by God. It is not caused by God, but it is allowed. And when He allows something like a disease to grow, there is no doubt that He is writing an incredible story through it! We must trust our loving Savior. As the Bible says, we can only see a small portion of our lives, of this amazing story. Someday we will see it in it’s entirety and it will be perfect; better than what we could have written. The LORD is good, so good. His love is lavished on us. I am learning to take hold of that promise, by faith, each day. I cannot compare the story of Titus with Colby’s story. I cannot compare my story of that with my brother’s. I cannot even compare the story of Titus to that of Ely’s. Because each story is unique and blessed and incredible.
Be joyful in hope, patient in affliction, faithful in prayer.
Thank you for reading…..Bek