Born A Minute Too Early

For some unknown reason, I’m fascinated by technology lately. Not current technology, but upcoming technology. I read that by the year 2030 (which sounds so far away, but do the math) there will be so much pressure on people in America not to drive, that we will mostly be a country of self-driving cars. From 30,000 car fatalities a year, to a fraction of that number nearly overnight.

The internet has basically had about three iterations. It started with what is now called Web 1.0. The internet for us was essentially an online encyclopedia. If you wanted to look something up or find something out about a company, like its number and open hours, you could search for it. Then came Web 2.0 which was the social media craze- where you and I began to interact with one another, a borderless world of instant pen-pals. Web 3.0 is called the Internet of Things. Where everything in the world will be interconnected and talking to each other. We’re starting to see it in our cars, our thermostats, our refrigerators, our cell phones- I even have a garage door that I can open with my cell phone from anywhere in the world. I’m not sure the usefulness of that, but can any of you open your garage door remotely from Liberia?

In thirteen years, we could have a country filled with driverless cars that communicate with each other to minimize traffic, accidents, and bird flipping. We’ll have to figure out another place to channel our road rage. An entire industry will be built on in-car entertainment.

And medical technology will see advancements at a rate that healthcare has never seen. Mark Zuckerberg, you know, the Facebook guy, and his wife just declared their intention to put in place a plan and initiative to cure, prevent, or manage all human disease before the end of the century. Did you see that little three letter word? ALL.

Tiffanni’s longtime neurologist just retired a few weeks ago which sent us into a kerfuffle trying to decide where do we go from here. My parents went to an informational meeting with a young Huntington’s specialist who asked to see Tiff. So, Friday we have her first appointment with the new guy. But I’ve heard some pretty amazing things about him so far. I have a former student in medical school at UAB that had a neurology lab with him that she said “inspired her”. In that lab he told the students that he believed Huntington’s would be the next neurological disease to be cured. In fact, there is a drug that is in Phase 2 testing now that inhibits the disease from ever actualizing. I have no idea what Phase 2 testing is. Could be the rats, I guess. But exciting nonetheless.

It doesn’t take a lot to put two and two together about my greatest fear. I’m certain that many of you have thought it and just not asked. Huntington’s is a neurological degenerative disease that is passed down through heredity. My children have a 50% chance of having it. I have three kids. The math stinks. The disease typically shows up in the mid-thirties, so I’m in an 18 year window of hope and fear- not sure what the word is for that unique emotion. Eighteen years sounded like a million when I was a kid. Now that I’ve lived over two of those windows, Time feels like a spoiled brat demanding his way at the Walmart checkout line.

Over the last week my brain has made me think a lot about the finality of this disease. That my kids will hopefully see the end of it forever and that Tiffanni will just see the end. That my kids will see the end of it from one angle and Tiffanni will see the end of it from the other. Like standing on two sides of a chasm. It makes me think of Jack and Rose in the ice cold waters of the Atlantic just after the Titanic sank. I remember thinking as he drifted to the bottom of the ocean, you couldn’t wait one more minute? The rescuers are right there!

I once read that thousands of soldiers died after World War II had already ended. They just didn’t get the news in time. And I feel this hole in my heart for Tiff. In the grand scheme of the history of the world, she was born just a minute too early. Just seconds before someone arrived with the antidote. Just moments before rescuers rowed up with life jackets and warm blankets. An instant before the pardon came through. This tiny little minute between life and death. All of our lives would have been different. If she, if we, could have been born just a minute later.

 

15 Comments for “Born A Minute Too Early”

Linda Rogers

says:

While you and your family are dealing with a very specific and painfully close view of this, I think in another way, we are all dealing with it in a general sense. Maybe your view of it is what makes you able to write something that expresses it so clearly. We have all been born a minute too early for the final cure to prevent our suffering. We are all groaning, along with all creation, for this world to be redeemed and for sin and death to be destroyed. That day is coming. But between here and there, there is so much sin, and death, and suffering that it can be a bittersweet thing to remember. The hope of resurrection still holds, because even if this sin, or sickness, or struggle, or pain defeats us and ultimately kills us, there will be more to the story. The cure IS coming. The ultimate cure will apply to Tiff, and to me, and to you, as well as to your children. But sometimes it is hard to accept that we cannot skip directly to that, and to live through the suffering until the Ultimate Cure is revealed. I hate waiting.

says:

Praying and believing for that miracle that heals Tiff, and prevents Huntingtons from becoming active in your children. I can only imagine your daily life and the uncertainty of each day.
Many prayers, may God bless you and yours

Lisa Wortmann

says:

My heart aches for what you and your family have gone through, what you continue to go through and what you’ll possibly go through. Our God is a BIG God though, and sees the BIG picture, which at times, drives us crazy bc we CAN’T see and we DON’T know, the what and the why. Thankfully we can rest assured KNOWING that He will NEVER leave us nor forsake us and that someday, it’ll all make sense or it won’t matter bc we will all be in the presence of the King.

I pray that God’s hand will continue to be on you and your family to give you the strength and peace to walk this journey.

Wanda Pylant

says:

Jeremy, my heart breaks for y’all every Wednesday when I read what you have written. You have a way of putting your feelings in such a heartfelt way. It has to be such a burden thinking about your children having this disease. We have to live by faith and not by sight but we are human and sometimes it seems so unfair. Pray for God to give you strength. God bless all of you.

Danielle Valimont

says:

Hurting yet hopeful . Your words and vulnerability in sharing real life with all of us who love your little family is something so rare and beautiful . I think many people expect people in ministry to have all the answers or walk in faith with an “everything is great” response no matter what the real truth is… but that’s just not how life works, is it? Thank you for letting us in. My thoughts and prayers are with you all often.

Sandra M

says:

Only words is I wish you could have all the minutes back and stop time. Prayers continue for Tiff and the children.
Sandra

Sharon

says:

What a masterful piece of writing! It says so much about your real life experiences on earth. Oh how I pray for you, Tiff, and all the family. I agree we all want cures and antidotes now. Unfortunately, we live in an evil world. All our hopes & dreams rest upon a merciful & grace-giving Savior. Yes, we all need The Savior, our Savior. Jesus Christ gave HIS life for all! He is our Lord of Lords, Bright Morning Star, The Alpha & Omega, The Beginning & The End. To God Be the Glory Forever! Hallelujah, What a Savior! Love you so much Jeremy, please keep blogging!

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