Love, Change and Gracious Living

Dreaming Again posted a comment on my last post about a recent decision to send her husband home with lots of new equipment. One of the items she mentioned that they were discussing was a twin air mattress or twin bed for the home. The problem, is that she is a married woman and although clinically it might be the right decision, she indicates that she isn’t certain what will happen to their queen bed if they get the new twin hospital bed let alone the fact that they enjoy sleeping together.

This is one problem that sometimes comes up in caring for individuals with disabilities or chronic illness…what will life be like when you get home and how do you manage the changes to your normal existance.

It’s been around a year ago that Dear Son was switched to g tube feedings and it was probably one of the most difficult transitions I’ve ever had to make. Although I didn’t doubt that it was the right one from a clinical perspective, it was extremely difficult because it changed our family life, forever. Gone were the days of making home cooked meals for Dear Son, ones he really enjoyed. He was the kind of kid who loved my home cooking and refused all offers of food at school and in the community setting, including any kind of treat. It became a joke at the Individual Education Plan (IEP) meetings when they discussed his development, that he refused all other offers of food. It was something that made me proud because it was our home life that he loved.

I felt good too because I knew when he was hungry. Since he couldn't speak, it was great that he could communicate this to me. He’d made these clicking noises as I called them, with his tongue, to indicate when he was hungry and then I'd feed him. Although we ate at regular times, there would be a few occasions where he'd be hungry earlier, like anyone else. A few years back, when he could walk on his knees, he’d sometimes walk into the kitchen and click, to let me know he was ready to eat. Or sometimes, when I was feeding him, it would be more dramatic and he would take his face and smash it into his food, indicating to me to hurry up and serve him faster. He didn’t like it if I took too long to give him his food. It was always a balancing act, trying to figure out how to serve his meals so we could all eat together or after I divorced, for Dear Son and I to eat together as opposed to serving him separately and then eating my own meal after that. I settled on cooking one meal, we both could eat, his finely chopped and mixed in mashed potatoes usually, and mine normal, but we’d eat at the same table with me serving him his food and then grabbing a bite in between while he processed his food. I say processed, because he didn’t chew that well and preferred to taste and swallow.

So the problem came when we came home from the hospital last year and I could no longer cook a home cooked meal, with the house smelling of the food, without feeling guilty. We had a little ritual all the time, that any time he got out of the hospital, I’d good his favorite meal when we got home. That ritual had to be broken immediately. From that point on, I didn’t like eating in the same room or eating whenever he could see me. It just seemed too mean. I mean, how could I eat a nice hot home cooked meal, one that he loved, and not give him any, even if I knew it was the right thing to do? Easier said than done. So I’d eat after he went to bed or after he’d fall asleep, but never while he was in the same room.

The holidays were particularly bad, because he was home from school all day. It was really hard not to break up a long day by making a nice meal. I decided to feed him a meal on the holidays, even though he wasn’t supposed to eat anything by mouth, because well, I just couldn’t cook a Thanksgiving dinner or take him to a relative’s house and have him sit in another room while everyone sat around the table and talked and ate, with him excluded. It was as much about the social aspect as it was about the food. I remember last Thanksgiving, when I fed him, he’d got really excited, his eyes got real big and he’d smile. I’d feed him very, very carefully so he wouldn’t choke. Tiny amounts, finely chopped, almost pureed. The whole meal took so long, I’d have to head it up in between, but it felt really good. Both for him and for me. I did this at Christmas too.

Winter came, and some days were just downright cold. It didn’t feel good to send him to school with PediaSure in his belly, without a hot meal. In the old days, he’d have hot cereal for breakfast. Or when he’d come home from school, I’d make him a hot dinner. Those days were over.

And then there was my eating. Gone were the healthy home cooked meals, since I didn’t feel good about cooking. I tried different times to get into the habit again, but it never felt good. I tried starting a new ritual, of eating by candlelight to make it more enticing, but eating while Dear Son lie in the other room didn’t feel right either.

Over time, it got easier. His swallowing had deteriorated so much that he didn’t want to eat much anymore. At the last IEP in May, I asked questions about lunchtime. The school nurse used to feed him for many years. I asked if it seemed like Dear Son missed food when he sat in the cafeteria with the other students. She said no, he was too busy looking at the other girls. She said she totally understood my concern, because Dear Son loved my cooking but that she felt he was o.k. with eating via the tube now. It made me feel better.

It was around that time, that I finally started cooking again. I make meals in my kitchen and am eating much healthier. I don’t feel as bad as I used to. I was reflecting recently on just what made it so difficult to make the transition. I think it was because when he eats via the tube, I have no way to know when he’s hungry or when he’s full. When he could eat by mouth, I always knew when he was hungry and he’d always stop when he was full. I had done that his entire life, stopping when he didn’t want anymore. With the PediaSure, I have no way to know when it’s enough or when he’s hungry. That bothers me. I also felt a little guilty. Although I know in my head that he needs to eat via the tube, it’s also easier so sometimes I think am I doing this because it’s easier and then my brain switches back and I remember that I am feeding him via the tube because I have to, not otherwise. I think in the end, it really boiled down to my feelings about being a good mother. I never felt like a very good mother when I gave him the PediaSure because it didn’t have any love in it. I couldn’t tell if and when I met his needs. And that was important to me. It was important to know for a child who can’t speak, that he’s not hungry and I have no way to know that when he eats like this.

Dreaming Again’s comment brought it all back to me. It’s about how your life can change in an instant. It’s about how a decision made in the hospital can have a huge impact at home. Sometimes, you need to follow the rules and then sometimes, you need to stand up for what you believe is right. And sometimes, you make the changes gradually. I thought about her comment and then remembered when they suggested a hospital bed for Dear Son. I put off the bed for many years until finally, I knew it was necessary for him. And when I did, I made sure that it fit with our family life and I made it part of our home. And that’s what I wish for Dreaming Again.

If it were me, I’d bring my husband home and let him sleep in our bed again, after five weeks of being away. I’d be willing to bet it would do both of them good in terms of healing. I would also suspect that one of two things would happen. One, they’d realize that sleeping in the same bed, despite all of the other equipment he has, was wonderful or two, that his medical needs were so severe that the twin bed they prescribed was necessary and the right choice. But then, they will have come to that decision instead of the decision being made for them. They might not come to the second part right away, but over time, they might feel that it was necessary and the benefits would outweigh the negatives. It would make the transition a lot easier.

We take so much for granted. But while we need good medical care, we also need to be protective of the things that make our house a home. Sometimes, we need to make medical decisions with our heads and other times, with our hearts. These changes are hard because it changes the way we define ourselves and how we show our love to those we care about the most; as a mother, cooking for my Dear Son and her as a wife, sleeping with her husband. And sometimes, making those changes, takes time. It’s hard giving up things you love and rituals you loved for the unknown. Somehow, nothing quite compares to that. But in the end, it’s about doing what we need to do for those we love. It’s about loving, honoring and caring for them, in the best way that we can. I think that’s called, “Gracious Living”. And that never goes out of style.