The entire TPN system is incredibly well-designed to foster an independent lifestyle with a minimum of interference from the infusion. Everything fits into a manageable albeit heavy backpack (about 7 lbs, a lot for me to carry). So there is simply no excuse for feeling home-bound by TPN. Two days into my infusion, Bill decided that I need to get out and about, TPN bag and all.
Bill and my Dad pulled a similar "tough love" approach to getting me out of the house when I had Amelia. I had a rough start with breast feeding: my nipples were cracked and bleeding. Whenever Amelia latched on my toes curled involuntarily. But I was determined to nurse her so I gritted my teeth and eventually we got the hang of it. My dad just did not appreciate my commitment to breast feeding. "You're exhausted, crying, and stuck in the house," he argued, "Just give her a bottle." My dad and I have a long history of locking horns, yet he remains completely unaware that the surest way to get me to do something is to tell me not to do it. It's a juvenile trait of mine -- my petulant inner child -- that actually serves me well much of the time.
When my Dad realized that I was determined to breast feed he devised a plan, "If you are so hellbent on doing this you need to do learn to do it in public." So Bill, my Dad and I put 2-week old Amelia in her car seat and drove to Sonoma, one of my very favorite places. They made me nurse her everywhere: at the restaurant where we ate lunch, in the park on the town square (where, by the way, there was a chicken that looked just like Carol Channing) in the 103 degree heat, they even pulled off the highway and made me nurse in a McDonald's. By the end of the day I was over any shyness I had about nursing in public and from then on I just whipped out a boob whenever Amelia wanted it. When I think about that day I smile over the two men I love most in the world who supported me in being successful at something that was so important to me. To think that my cynical curmudgeon of a father became a champion of breast feeding.
So Bill applied the same rationale to the TPN. On Friday we ran errands together, returning books to the library, renting movies (by the way, Death at a Funeral is hilarious, especially if you are into British humor), and buying dog toys. The latter errand was the most crucial because Bill spent the morning threatening to give away our puppy, Zara. While I admit that adding a new dog to the family when I was becoming increasingly sick was a huge mistake, I firmly believe that we made a lifelong commitment to her. I was in desperate need of ammunition for my intended behavior modification program so I dragged a reluctant Bill to the pet store and insisted that we buy a slew of chew toys. "These won't even last her a week," Bill complained forking over far more money than he wanted to spend.
Zara, Our maniacal dog
Photo by Amelia
Despite the fact that Zara is a pound mutt, we are 90% certain that Zara is a one-year old beagle-Rhodesian Ridgeback. Her bark and ears scream, "I'm a beagle" while her color, build, and telltale ridge along her spine leave little doubt that one of her parents was a Rhodesian. We promised Aidan a dog for his sixth birthday but held him off for nearly another year invoking last year's summer-long trip to Italy as an excuse. When we returned, we tried to hold him off given that I was not feeling well. But a promise is a promise. We made several trips to the pound. When Aidan spied Zara, he wanted her, only her. I went back to spend some time with her alone. She was a "surrender" from another family that decided she was too hyper. She was indeed hyper when I visited with her but she was very submissive, allowing me to touch any part of her body and seemed quite trainable. Bill made another trip with the kids and agreed that she seemed fine.
As it turns out she's kinda of a dopey lunatic. At the same age, Watson knew everyone's name: Mommy, Daddy, Mom-mom (yes, we are weirdos that refer to my parent's as the dog's grandparents), Pop-pop, etc. Zara doesn't even know her own name. Watson could differentiate between multiple toys. If you said, "Get your bone" then he got his bone. If you said, "Get your ball," he got his ball. Zara has no idea what anything is called. She will do her commands if a treat is involved. Otherwise, she's oblivious. What she lacks in cerebral prowess she more than makes up for in heart. She's incredibly sweet.
The problem with Zara is that she eats everything in sight. She has eaten, among other things, a check, Aidan's homework, Bill's dad's birthday card, an entire legal pad, a pack of Claritan, at least a dozen pens and pencils, etc. So Bill's ready to shove her off to Timbuktu. I tried to remind him that Watson went through a similar phase during which he ate the dry wall on a daily basis, "She'll outgrow it and then she'll be a great dog." (While the doctor was pulling my feeding tube, I made Bill promise me that he would not give away Zara when I died. Talk about manipulative!) I hoped Zara would be busy with the toys and stop tearing up everything else. She ate the first toy in about 2 hours; then she at a piece of mail. So Bill is still threatening to give her away. I told him today that if I die and he gives her away I will haunt him forever.
"What are you going to do, smack me every time I make a grammar mistake?"
"Oh no, I will be far worse than that."
On Saturday I was feeling pretty good. I woke and ate breakfast. Afterwards I made a coconut flan, which is yummy, dairy-free and has tons of calories. Then I baked some cookies for the kids.
Since I was feeling so good Bill and I braved the mall, a place that we each detest. I needed to go to the Apple store (it's probably called iStore but I am oblivious to these things) to get an iskin to cover my keypad. All this typing is rough on my finger wounds. Bill dropped me off because all the handicapped spots were taken. As I made my way to the store, I was feeling a little nervous about being out with my feeding running and the obvious IV tubing hanging out my shirt and looping down to my knees and back up to the backpack. I dreaded the stares sure to come my way from fellow shoppers, but no one gave me a second glance. Everyone was too busy staring at the guy with the Mohawk.
On Sunday I paid for all my activity. I was completely wiped out and could barely get off the couch. And I while I was dying to see the kids, I confess that I was nervous about their homecoming. Kids require a lot of energy, which is something I just do not have anymore. When they are with me, I feel inadequate as a mother. So I push myself to seem "normal" making their meals, nudging them through the daily routines, etc. After they left for their camps yesterday, I had a horrible coughing fit the left me lying on the kitchen floor gasping for air. In my obstinacy I am making things worse. Why can't I just accept my limitations? Why can't I just accept that I am doing my best?
Finally, this morning I gave myself permission to spend the day in bed. I still opened the curtains and blinds, I still got dressed and ate breakfast and lunch. I started the washer and dishwasher; I spent five minutes training Zara. Other than that I have parked myself on my bed all day. For months I have been wanting to stay in bed and rest my weary body, but I feared that doing so would frighten the kids. And that lying in bed meant that I was no longer mothering them.
What I discovered today is that I can still mother them. I used our phone intercoms to get them through the morning routine. And Bill made their breakfasts and supervised them while they made their own lunches. Amelia moved clothes from the washer to the dryer so that she could wash the sheets that she herself had stripped of the beds. All she needed from me was a little instruction. I helped Amelia remember where her violin was (at camp for the week) and reminded Aidan to brush his teeth. Being forced to do more for themselves, these two children will become incredibly self-reliant.
Former students and friends have graciously offered to shuttle the kids to and from camps and activities. I miss doing these things with the kids because I like to speak to them in the car, but I have to accept that I cannot be mom's taxi for right now if I have any plans on doing it in the future. I do what I can with them: we chat, play games, watch movies on my laptop, they have dance parties while I lie on the bed and wave my arms. And, surprisingly, they still seem happy
I was reading through the Bibles that I bought for the kids to open on a future birthday. I went through them and marked my favorite passages and while reading I came across Mark 12: 41-44, which is about a poor widow who puts two copper coins in the treasury. Jesus tells the disciples "I tell you the truth, this poor widow has put more into the treasury than all the others. They all gave out of their wealth; but she, out of her poverty, put in everything—all she had to live on." I remembered it once I read it, but it is not among my favorite passages. Yet, as I sit here writing this I realize that I am a lot like that poor widow. I don't have much to give, but I give what I can and that simply has to be enough.