One Fine Day

I know someone has made a nice living from a series of books on “Not Sweating the Small Stuff,” but, at this point in my life, it’s all about the small stuff. I have learned to accept that I am on a roller coaster ride and that every day and, sometimes, every hour is different. I have accepted that nothing is a given and that all I can do is live in each particular moment.

Yesterday I awoke at 8:30 after having slept in two blocks: one lasting the usual three hours and the other lasting 5 hours. The latter block was the first time I have slept more than 3.5 hours straight since the feeding tube debacle started in February. I felt like a different person. I proceeded through my usual morning routine: meds, fresh glass of water, and a glass of juice. I cannot eat breakfast anymore. I don’t know what happened when they put this tube in, but I have been unable to stomach breakfast ever since. Friday I tried to eat a bowl of oatmeal and I had about four bites before I nearly hurled. My new “Breakfast of Champions” is a can of Vivonex RTF [ready to feed] through my feeding tube.

I started my tube feedings and skimmed the New York Times while Amelia read her latest Nancy Drew. She is now breezing through them at a rate of one book per day. Aidan was busy with the 2006 Guiness Book of World Records. After a while Amelia set off to find a playmate. It’s wonderful for her to be at an age where she can just go off in the neighborhood and find something to do. She likes that she gets to bring my cell phone with her on her outings. Can you say pre-teen?

Aidan chose to stay behind with me and play Dominoes. We play a Dominoes game called “Mexican Train,” which surely is a moniker left over from pre-political correctness days. Since just two of us were playing we wiggled the rules a bit to allow us to both play two trains at once. Aidan has always had remarkable spatial abilities. When he was 3 years he had a bucket filled with plastic dinosaurs and the makings for a dinosaur habitat. He used to line them up on his headboard: dinosaur, tree, dinosaur, tree, dinosaur, tree, and so on. The only reason I knew this was remarkable is that they were teaching Amelia’s kindergarten class patterns and not everyone was catching on readily. We played two games of dominoes and I played the same way I would with Bill or anyone else. I did win, but both times Aidan only had one tile left at the end of the game. Once Aidan watched my Dad playing Dominoes. Aidan had initially decided against playing, but he took one look at my Dad’s mess and climbed into his lap, “Pop-pop, you have to have a strategy.” He then proceeded to line up the Dominoes in the order they should be played.

While Aidan and I were playing Dominoes I noticed I was feeling pretty good. I promised Aidan that I would take him to Borders to use the gift card my friend Kate had given him the previous day. While we waited for my feeding to finish we watched the bonus animated short on the Madagascar DVD. It is so much funnier than the actual film. We watched it twice and I enjoyed listening to Aidan’s belly laughs. When do we outgrow that childhood laugh and why? It is the most joyful sound in the word.

So I finished up my second can of formula, unhooked myself from the feeding pump and dressed. Aidan went to fetch Amelia who was playing with her friend Caitlyn. We invited Caitlyn along and she ran home to get permission. Her father Dave, later told me that she asked if she could go to the border with me. I had this mental image of Dave scratching his head and thinking, “Geez, I know things are bad but I don’t see how a trip to Mexico is really going to help.” Once Dave confirmed that I wasn’t contemplating some sort of expatriation scheme, I piled the kids into the Saturn and we were off. The children were so happy to be out and about with me that I could almost feel the joy emanating from the backseat. I could almost hear them thinking to themselves, “Maybe Mommy is getting better.”

We successful spent all our Borders gift cards with a minimum amount of fuss and haggling. Amelia bought more Nancy Drew books and Aidan added to his collection of superhero and Pokemon stories. I find the greatest challenge of mothering a boy is mustering feigned interest in their passions. It’s so easy to engage Amelia in conversations about Nancy Drew because I loved those stories as a child myself. Of course, Amelia’s idea of plot summarization involves a 30-minute discourse, which can grow a little tiresome. But I still prefer that to Aidan’s convoluted descriptions of which Pokemon does what and why.

Once we returned home the kids got ready for their afternoon at the lake. My friend Sally had nicely volunteered to take them for several hours so that Bill and I could have some time to ourselves. I was impressed to watch the kids get their bags ready with towels, clothes, and sunscreen. Aidan even got Amelia a towel without bitching about having to do it. Soon they were off.

I took a leisurely shower. I discovered recently that if I sit on the floor in front of our full-length mirror I can actually dry and style my hair and put on make up without feeling worn out afterwards. When I went downstairs Bill greeted me warmly, “You look really nice.” Of course, he always says that, leaving me to question if he really has 20/20 vision. But on this particular night I actually felt like I looked presentable for the first time in months.

For the past several months Bill and I have had little leisurely time together. After the hospitalization we needed a steady stream of visitors to help with my recovery and running the household. Consequently, privacy was completely lost. In the few private moments we shared, our conversations involved my illness and what to try next. Our entire lives seemed to revolve around my health concerns and trying to maintain some semblance of a normal life for the kids. We literally had not simply enjoyed each other’s company in three months.

For our inaugural date, Bill and I had decided to see a movie just in case I was not able to speak. He lobbied unsuccessfully for the latest Indiana Jones. Not to be agist or anything but men on Geritol should not be playing action heroes. At some point it is time to get a new gig. Plus, Harrison Ford has never done a thing for me even in his Han Solo days. I was too tired to look for a movie so we went with Bill’s second choice, “What Happens In Vegas.” It turned out to be a sweet albeit mindless romantic comedy, which was exactly what I needed. I have enough drama in my own life without paying eight bucks to see made-up drama.

After the movie I was still feeling well. I really needed to go home to finish my tube feedings for the day, but I wanted to be out with Bill like a normal couple. So we went out for dinner. My cough was at a minimum and I was actually able to talk. And we talked and joked like we used to do, laughing about our overly solicitous waiter and other random things. Humor has always been the mainstay of our relationship and it has been harder and harder to find it over the past few months. It felt so good to laugh again. It was just like old times. At one point he looked at me across the table with wet eyes, “It is so good to have you back.”

On the way to pick up the kids I had a coughing fit and threw up. It was one half hour of misery in what had otherwise been a perfect day, and I tried to think about it that way. I can handle 30 bad minutes in exchange for 12 good hours.

Amelia went off to a late night movie viewing at a friend’s house and I pictured her laying on her belly head propped on her hands with her legs swinging, pajama party style. There she could be like any other girl, a girl who doesn’t have a sick mommy. Aidan read me his new books before I tucked him into bed. We snuggled together for a good twenty minutes and I nuzzled my nose against his little head. Then, I got into bed and Bill tucked me in. He sleeps in the guest room these days while I try to get my sleep situation under control. That way only one of us is perpetually sleep deprived. He kissed me good night and said, “I love you.” I wasn’t able to speak so I answered him back in American Sign Language. I thought back on all the nights we fell off to sleep without saying those words, and now we never ever forget to say them.

I said my prayers and I thanked God for all the wonderful parts of the day: dominoes, Pixar penguins, bookstores, holding hands, laughter, friends who know exactly how to help most, parties for little girls, and snuggles with little boys. I even thanked God for Asthon Kutcher for being sweet and endearing in a way that exceeded my expectations. And I thanked God for Bill who can see me underneath all my symptoms and suffering and have faith that I will one day be myself again. As I fell off to sleep I felt the corners of my mouth turned up in a smile; I was happy and just a little hopeful that someday it’s all going to be ok again.