November 10, 2012 by Todd Neva
“Me and Sara are getting bigger. Daddy’s getting littler,” Isaac said after church two Sundays ago. Kristin had just buckled my seat belt. I had been stiff and weak having worked too hard helping to install bamboo and tile floors.
“Is that right?” I already knew what he meant, because I had seen a perplexed look in his eyes when he watched me struggle with the simplest tasks.
Kristin asked, “Then what is mommy getting? Bigger or littler?”
“Me, Sara and mommy are getting bigger. Daddy’s getting littler.”
Isaac associates getting bigger with gaining his independence. He’s learning to use the big boy potty and can do so much on his own now. He sees mom doing more, too. I am doing much less.
Nonetheless, I was pleased that I was able to help move the house construction along. I coached Kristin as she installed bamboo flooring. She measured and carried boards to the saw. I used the miter saw at first handily, then eventually using my chin to push down the blade. I snapped the interlocking boards into place until I got too tired, then Kristin took over. I also helped tile the bathroom floor, squatting down to measure and test-fit the mosaic tiles, weakening my legs. I cut the tiles on the tile saw, weakening my hands. I coached Kristin as she laid tile and grouted the bathroom floor.
In the midst of all the chaos, we drove to Milwaukee for the Walk to Defeat ALS on October 14. More than twenty walkers came in honor of me and the late Jack Berry. Our team raised over $3,200. Thank you walkers and all who supported them. We walked with 3,000 others, and, in total, the ALS Association Wisconsin Chapter raised over $400,000. The money provides practical support for those facing this difficult disease.
On Saturday October 20, thirty or more members of Evangel Baptist Church showed up for a work party to rake out rocks and plant grass seed in our yard. It had been raining for the two weeks prior to that day, but the clouds parted and God blessed us with amazing weather; the weather turned sour the very next day. We are incredibly grateful for Evangel in ministering to us.
By time I arrived at the ALS clinic on October 23, I was in rough shape. I needed a wheelchair to travel between the hotel and the connected clinic. Fortunately, my breathing is still strong and the neurologist did not see any sign of bulbar activity. The neurologist pointed out that I have mostly signs of lower motor neuron death. While I still have signs of upper motor neuron death, verifying that this is ALS, the predominance of one generally means slower progression. She is not surprised that I’m doing so well after two years. And four months from now, she may even be surprised to find me having gained strength, as my muscles have since partially recovered from the fatigue.
Fatigue is the first sign of weakness, and I got a taste of what life would be like shortly. There’s nothing good about this disease, but you must know that I have joy and peace. I can rejoice in my suffering, because in my weakness Christ is strong. Furthermore, the house is near completion, my kids are growing up, Kristin is very capable, we have the support of family, and we’ve connected with a local body of believers.
We’re also pleased that we were able to lock in a low interest-rate on a 30-year fixed mortgage just before rates started to rise again. However, this meant that we need to close on the loan by December 16 and all work on the house must be completed before the final appraisal, which is now a Fannie Mae and Freddie Mac requirement. Therefore, we’ve continued to push to get a few projects wrapped up. Also, we ask for prayers that my long-term disability will be approved timely, as the bank needs that income verification.
We are in a good place here. The Keweenaw is beautiful and there are many activities for the kids. I’m homeschooling Sara, which is a delight. Kristin’s parents live next door and are very helpful. My parents and sister and brother-in-law live close enough for frequent visits and they have provided so much support. Thank you to all who have helped us build the house. We so appreciate your financial and physical support and your encouragement and prayers.
Two years ago when I was diagnosed, I had a dream: to build a house on this property so to provide for my family in this time of struggle and for years after. The dream is near complete. Know the truth, I don’t feel littler. I feel bigger!