Chapter 16: Foodie part 2

 Once Jeremy indicated that he thought he was ready for a feeding tube, things went remarkably quickly. He had the tube placed on December 26th and is now home with instructions for a completely new regimen.

What they said we should do:

 - Use the feeding tube for premixed liquid nourishment 5 times a day (!)

  - Use a different part of the tube for his meds, twice a day

 - Have him eat by mouth as desired - but nothing dry to avoid choking

 - Unfortunately anything too creamy triggers his gag reflex 

 - And generally he seems to have very little appetite 

It’s weird to me that no one suggested a feeding tube before now. He has lost 50 pounds since March. He eats very little and struggles to get enough calories. He doesn’t really want to use the tube and I worry that when Jess goes back to work after Christmas break, we may have a hard time convincing him to accept it.

Plus, if he wants to continue going into the office from time to time, that obviously will not work with the new schedule.

I need to remember that this is his journey, and I am just a supporting character. I look forward to seeing how puppy Squirt becomes part of the family. I hope to find ways to give Jess and her daughters times of respite and joy. I am blessed to be part of the story.

Chapter 15: Puppy love

 Daughter #2 has been begging for a dog for months. The family’s long-time treasured pet Val passed away about a year ago and the void has been huge.

The time is not right - Jeremy’s needs are growing - and the plan was to wait for summer. But today, #2 met a little cutie named Squirt in an Operation Kindness setup at the mall. She convinced Jess to go meet her, and the rest is history. Squirt is now part of the family.

I truly think God set Squirt aside for us - she went directly from a large shelter to Operation Kindness and was only in the mall for one day. She was the last adoption on their last day at the mall, and so far she is sweet and beautiful and completely calm. She is one lucky dog. And she will add a lot of joy to the upcoming months and years.

Chapter 14: Stretching

 I went to my usual “stretching” class at the Y this morning. There was a new instructor and I couldn’t understand a word she said. Not her fault - I am pretty deaf. Basically I spent the hour either imitating my fellow classmates or just doing my own thing. 

Most of my joints are pretty normal at this point, with the exception of my shoulders. Those shards of glass are still there, and I alternate between telling myself “Motion is lotion” and “Rest is best.”

Meanwhile, Jeremy is still stubbornly working whenever he can. I think motion gives him purpose and hope, while rest makes him feel useless and sad. It’s tempting to tell him that he should conserve his energy - but for what, exactly? He is stretching his capabilities to the limit, and good for him. 

Chapter 13: Foodie

 Jeremy has always loved food - eating, cooking, and trying new things. He loves a good steak, as well as fresh seafood, and he can whip up an amazing meal without looking at a recipe. The one thing he hates is onions. Unfortunately on his first visit to our house we had quesadillas with chicken and onions. He managed to get through the meal without gagging - I’m not sure how.

Jess, on the other hand, has severe food allergies, including nuts, seafood, and beef. So they eventually settled into a dinner routine including lots of chicken and pasta.

For the past few months, I have been in charge of planning and making dinners. Jeremy’s hands are now curled and stiff, and he can’t lift heavy pots or strain hot pasta. He needs to try to maintain his weight, and he has trouble with foods that are too dry, too watery, or too creamy. Plus he won’t eat anything green. It’s a challenge. 

ALS causes constant muscle twitching (fasciculations) because the nerves keep trying, ineffectually, to stimulate the muscles. This results in a huge output of energy - and significant weight loss. To combat this, he has a combination of ice cream and super high calorie powder (770 calories!) every night. Still, his arms and legs are thinner and thinner.

A week ago he told Jess that it might be time for a feeding tube. This is a huge concession. His doctors are now trying to schedule the procedure before the end of the year.

This will be a big adjustment. He will still be able to eat by mouth, but there will be daily maintenance and  a learning curve for feeding/hydrating via the tube. Plus the very fact that he needs the tube is an indication of how quickly his condition has changed. 

Chapter 12: Courage

 Courage is …

Accompanying your wife to her company Christmas party, knowing you will be the only one in a wheelchair.

Admitting that it’s time for a feeding tube, after months of dietary changes and high-calorie supplements.

Trusting that God has a plan, even when it makes everyone cry.

Chapter 11: Girl Dad

 Jeremy was not experienced with babies or toddlers, so when his daughters came along, many things required a lot of adjustments…

• Diapers - they are constant and gross
• Crying - also constant, and usually inexplicable 
• Vomit - why does no one warn parents about this?
• Exhaustion - which makes everything worse

At first, I think he may have wished for a son so he could coach little league or wrestle in the living room. But his girls have absolutely been the joy of his life.

Daughter #1 has his quirky sense of humor and his aptitude for grasping difficult concepts. They love the same movies and corny jokes, and they just “get” each other, which is often not the case with dad and daughter.

Daughter #2 is brutally honest and yet protective of her real feelings. She alternates between insightful questions and brutal jokes about the future, clearly aware that life will look very different before too long.

I remember him laughing about taking them to daycare, and how impressed people were that he actually got them dressed (“well done, dad!”).

I remember him choosing the colors for Daughter #2’s nursery, blending pinks and browns and finding accessories that fit perfectly.

And I remember recently, how his first priority every day is just making sure his girls are ok.

Chapter ten: Respite

I recently spent two weeks at home in Tennessee, resting and reconnecting with friends and realizing that I just wanted to be with Jess and Jeremy. I know it’s not my responsibility to make everything ok, but if I can contribute in small ways I want to keep doing that.

PLUS … I am extremely allergic to Tennessee. As soon as I wake up, I start sneezing. My eyes itch, my nose runs, and I am generally miserable. I tried all kinds of remedies and eventually realized that Benadryl plus Sudafed was the only thing that worked.

Try taking Benadryl and Sudafed first thing in the morning, and see how your day goes. You will (a) be in a fog and (b) not be able to make coherent decisions but (c) not have an irresistible impulse to scratch your eyes out. 

So it’s all good.