When my oldest child was five years old, I severely burned the outside of my wrist while pulling a heavy casserole from the oven and yelled a curse word. At this time in our life, “s” words like shut up and stupid were strictly prohibited. These were punishable offenses resulting in time-out for an unheard-of length of time: five minutes. Although, to my knowledge, my blue-eyed, tow-headed son had never heard the expletive that rolled right off my tongue, he knew all too well that it was bad, and mommy was in trouble. To the timeout chair, I was sent, and I must admit, five minutes is a lot longer than I realized.
There are hundreds of mom-moments that clog my memory, threatening to envelope me with guilt, but none hurts like the one that changed the course of my family’s life forever.
It was August of 2019. Christian (my husband), and I were living the dream and didn’t even know it. Braden was in 8th grade and playing football and travel baseball, Madeline-Hart was in 5th grade ruling the school as a Peer Helper and loving all things dance, and William was in 1st grade and constantly keeping our family in stitches. Christian was a deacon and helped facilitate a men’s Sunday school class, and I co-led a women’s Bible study on Thursday mornings. Our family was happy and healthy, until we weren’t.
After uncontrollably bleeding for ten days from having several baby teeth pulled and seeing our pediatric dentist, oral surgeon, and pediatrician, Braden was sent to Children’s and Women’s Hospital. He spent three days in the hospital and had dozens of tests run. Two weeks later, Braden was diagnosed with Hemophilia A, a genetic bleeding disorder where the blood cannot clot. Two weeks after that, William, would also be diagnosed. We had so much to mourn, not just for one son, but for two.
We learned that Hemophilia is passed from the females to the males. The guilt I felt for not knowing that I was a carrier of Hemophilia was crippling. This genetic disorder was passed down from me, which was simultaneously a shock and made complete sense.
In my family, no one talks about actual medical diagnosis. Instead, it’s an onslaught of slang you hear from the time you’re a child that you (over time) learn to somewhat decipher. For example, “afflicted” means menopause, “not right” means mentally off, “laid up” means back trouble, and “gone down” means call hospice. To this day, I don’t know what kind of cancer my grandmother passed away from. Future generations need to know!
I remember hearing how my grandfather’s knee would swell so big you’d think he had a melon under his trousers, but it was nothing more than an anecdote after years of hearing about it. Just to make sure my grandfather’s bleeding issue wasn’t something I needed to be concerned about, I consulted several doctors when I first became pregnant and was reassured that all was well. Christian and I proceeded without a care in the world as we brought a healthy 9lb 24inch baby Braden into the world, having no clue what awaited him or us.
When he was diagnosed, I suddenly felt like the pathetic guy who got the misspelled tattoo, riddled with so many “ragrets.”
Why didn’t I consult a geneticist? Why didn’t I get a second and third opinion from more experienced doctors? The list of “whys” and “what-ifs” was never ending. I turned to the only bedrock in my life, the inerrant word of God.
Colossians 1:16–17 says, “For by him all things were created, in heaven and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things were created through him and for him. And he is before all things, and in him all things hold together.” When I explored and meditated on this verse, I had to peel back the layers of the root of my guilt and “ragret.”
By definition, sovereignty is having supreme power and authority. From this, I know all too well that Brooke Preus has no sovereignty. Just this week, I have misplaced my cell phone an annoying number of times. It drives my family crazy, as we sit and listen for the chimes while I “ping” my phone from my Apple watch. If I was sovereign, wouldn’t I have supreme power over something as silly as a cell phone? I had to realize that there is very little that I actually have control over.
If I believe myself to be sovereign, I end up taking the credit for circumstances and situations that I couldn’t possibly have controlled. This includes all the good (i.e. a loving marriage), as well as the bad (i.e. a late diagnosis). Believing I am in control of my life can give me either an elevated sense of self or overwhelming guilt, depending on the situation. Hebrews 1:3 states that, “He upholds the universe by the word of his power.” How comforting to know that no matter what, my successes and my sufferings are God’s, and both play an integral part of the continuation of his plan being carried out. I know this from Romans 8:28, which says that “… for those who love God all things work together for good…” I had to realize that my not knowing that I was a carrier was a part of a bigger plan, one beyond my control, and ultimately for my good.
It is God who has infinite rule, not Brooke, the cuss-word-teaching, hemophilia-passing, non-sovereign mom. Although I may not know why God allows what he allows or why God does what he does, I don’t have to know. I am just called to trust him, knowing that Jesus’ death on the cross didn’t just make up for 82% of my sins. His death and resurrection has 100% freed me from all of my sins and regrets. In Jesus I find freedom, once and for all, from all shame and guilt, even the guilt over passing Hemophilia to both of my sons,. Praise God forever and ever! Amen.
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