Sunday, December 02, 2007

Fish Hugs

The fish had been hovering for weeks at the top of the fishbowl, weak, and breathing heavily. I had purchased a beta fish for years now, one at a time. This one was different though. I went in to the pet store to purchase a large red beta fish and instead purchased the scrawny purple one. There were only a few left prior to the shipment, none of them red. The purple one was the smallest of the group but he was happy. He’d swim over by me when I was looking at the bowl and when I left the aisle to go home, without a fish, I couldn’t get him out of my mind and went back over the end of the aisle, where he seduced me into buying him, with his happiness.

I brought him home and placed him on the countertop near the sink, where I could see him when I’d wash dishes. He’d swim over to the side near me and I’d rub the fish bowl as if to give him a fish hug. He’d love it and then swim away. The other fish would always dart away as soon as I’d touch the bowl; this one did not.

Our cat would love to sit on the box next to fishbowl and watch him. It was an ornate silver box, velvet lined, to store things. I had purchased it many years ago to store remote controls, long before it was fashionable to do so. Our cat would sit there and try to knock off the plant on the top of the fishbowl to gain access to the beta fish. Seeing this would prompt a scolding from me while Dear Son erupted in laughter, over the cat getting a scolding. It was a nice balance.

Over Thanksgiving, the fish continued to hover near the top of the bowl. He had outlived the normal lifespan and I dreaded the loss of my fish and even worse, removal of the dead fish from the bowl. As he lay near the top, I continued to change the water in the bowl every week and continued to feed him. I wondered when and if I should stop as the fish was clearly suffering. I wondered which would be more humane. It was a $3 fish, so it shouldn’t require much thought, but the cost was never really a factor in doing what is right. After all, he could be replaced, but that wasn’t really the issue.

As he lay at the top of the bowl, I couldn’t help but think about Dear Son. I remembered when he was on the ventilator and wondering what would be proper. I remember conversations with the geneticist about the end of life and he almost had me convinced at one point, that the time to end things is when they are suffering, however I just could never do it. It didn’t seem right.

The days went on. The weather was cold and Dear Son was home for the Thanksgiving holiday. We’d be spending it here, after a family member got sick and was unable to host. Staying at home was always fine with me however the days were long with Dear Son and it made me uncomfortable not to be able to feed him a hot meal and even more uncomfortable to cook a turkey without giving him any. It always seemed mean to let him smell the food, but not allow him to eat. I’ve never been able to do that, at least on the holidays.

I started feeding him the day before Thanksgiving and made him his favorite meal. His eyes lit up as I prepared the meal and he began to rock very fast in his rocker, almost bursting from excitement. I pureed the meal up and fed it to him slowly. The liquid didn’t go as well and he choked a bit so I stopped the drink and continued to feed him. He was so happy. And so was I. I fed him again at dinner and then it was Thanksgiving Day. I fed him Pedia Sure for breakfast and then made our turkey dinner for lunch. It was a little bit different today though. I pureed the turkey, the sweet potatoes and some broccoli for him. I left him in his new rocking chair for lunch, since it was easier to leave him there instead of moving him to the wheelchair. In the rocker, I could turn it towards the table and the table height would be perfect. Soon into the meal, he began falling over to the right repeatedly. He could not sit up. I took my left arm and placed it around his shoulders, his head tipping back on the top of my arm. I fed him with my left hand and he quickly placed his right foot on top of mine beneath the table and his right hand on my lap. When he was a little boy, he always placed his foot on my lap as he fed, as a symbol of closeness. And now, over a year after his feedings by mouth have ended, he remembered the old routine. The cat, jumped up on the chair, to watch Dear Son feed. We have a glass topped table so the cat was visible beneath the glass. Dear Son laughed at that as he knew the cat would be hoping for some of his meal. The cat sitting on the chair would prompt a scolding from me, more like a reminder to not beg for Dear Son’s food. He didn’t really, but it made Dear Son laugh when I said it, as he loved the thought of anyone getting in trouble. The cat knew the game and he wagged his tail from side to side as I did it.

Dear Son loved the meal. He’d look me in the eye and then when I wasn’t getting the food in fast enough, he’d lean forward and smash his face into the potato mixture as if to tell me to “hurry up”. That’s what he wanted ever since he was little, to get the food in faster. I’d try to restrain him from smashing his face into the food but he always won out. I wasn’t sure if it wasn’t because I wasn’t getting it in fast enough or he simply wanted to feel the food against his face, since it had been so long.

As I fed him dinner, my arm around his shoulders, his head tilted back with his eyes gazing into mine, I couldn’t help but feel good. Although he was sixteen and I was feeding him like a baby, it just didn’t matter. I could feel the love and it was mutual. I was doing was I thought was right and it felt really good. Feeding him via the g-tube might be what he needs but it never feels quite right as a mother or as good as feeding him real food by mouth. There is something about nourishing your children, that is ingrained in your being, and the Pedia Sure doesn’t quite cut it. We finished our meals, and Dear Son looked up into my eyes and said, “I love you.” It was unintelligible as usual, but I knew what he meant. I gazed back into his eyes and said, “I love you too.” I knew then, that this would be the best Thanksgiving and one I would remember for a long time.

As I cleared the dishes, the fish hovered near the top of the tank. I went to bed that night and he looked worse, his color was more of a pale gray and his body hovered in an upside down “U”. His breathing was more labored than before, with large, almost gasping breaths. I rubbed my finger on the fishbowl giving him a long fish hug before going to bed.

I woke up the next morning and the fish was dead. I knew then that I had made the right decision, caring for him and letting nature take it’s course. I felt the same way with Dear Son, loving him and doing what is needed until the end. And for that, I am thankful. There is a saying that goes something like this, “If I were to give trade away all the things I have, for all of the things I want, I would be bankrupt, for all I need has already been given.”


Note: Dear Son enjoyed lunch and dinner on Thanksgiving and then lunch the following day before going back to his normal routine. He had seizure issues for several days during this time and at one point was no longer able to sit up at all. Once the seizures got under control again, things improved. He is now doing much better.

Today, we are heading to a Christmas Party at the Respite House, where he stayed this summer. He absolutely loved the party last year and laughed the loudest of all of the kids in the room.


Anonymous said...

You write beautifully...I always feel a variety of emotions when I read your writings. I must say I was laughing when you described Dear Son's pleasure when the cat is scolded! My son also finds it funny when I scold our two little dogs. Thanks for sharing your intuition, wisdom, and life experiences with Dear Son.

Helly said...

I am always so moved and inspired by your writing and the huge love you share with your son.

I hope the party is fantastic fun for you both!

Anonymous said...

Have fun at the respite house party!

jennifergg said...

Happy holidays to you and dear son, with loud laughter for everyone!!!

Read Like Me said...

Hi Dream mom,
How are you doing sweetie. I hope your boy enjoys himself at the party and has a big smile for you.

You are doing an awesome job. Wishing you smiles and some chances to put your feet up over the holiday season.

Thinking of you.

Sara said...

I remember when Amy Lynne was so sick. The doctors wanted me to pull the plug. I just couldn't. In the end, she made the decision. I know I'll never regret letting her hang on until she was ready to go.

I also know that you'll make the right decision when it comes to Dear Son.

Baby Island said...

That was really touching. You are a beautiful mom and your son knows this, deep deep inside. The part about him putting his foot on yours and his hand on your leg.. I know when my non verbal son with DS does this type of thing it symbolizes a big part of our bond.

Thank you.

Summer said...

You have an amazing ability to write so raw and delicate all at once.

I'm glad your son got some Thanksgiving meals. What a wonderful bond you two have.

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