Thursday, November 19, 2009

You never know how good you have it...

My personal, and immediate challenges have been pushed aside to care for my brother. So my time has been overwhelmingly occupied. It used to be a luxury to get 5-7 hours of sleep, on average I sleep about 4 hours a day. That has changed to being a luxury to get 4-5 hours of sleep but for the most part surviving on 1 or two naps of 1-2 hours. I know it can't be healthy, but what else can one do when things need to be done.

My brothers story is amazing, on October 22, 2009, the house I grew up in exploded. There was literally nothing left to the structure. My parents are out of the country serving a Church Mission. My brother and sister were living in the home. My sister Mary was upstairs at the kitchen sink, my brother Tony downstairs on the couch watching a movie, when the explosion occurred. Mary had minor injuries and was only in the hospital overnight, Tony had 2nd and 3rd degree burns, but only on his legs and arms, and lacerations from the debris, and a broken fibula. Amazing, no other injuries, he was completely buried and had to be pulled from the rubble. Only Angels know how they survived.

I have been visiting him at the hospital, and learning to do his wound care. Now less than a month later he is staying with me. It has been exhausting, but a learning experience.

We were in the process of moving, and did not have a place for him to stay in our current house, I had planned on him coming home on Friday, they sent him home on Wednesday. So we stayed at the new place that night without heat, or hot water. The next day to do his dressing changes, I had to boil water on the stove. He had absolutely nothing, so I have tried to get him basics, such as a tooth brush, underwear, and a bathrobe, a few pare of shorts. But he is going to have a full beard before I can get him a razor. Though we have had little, it has helped my kids appreciate what the have.

Wednesday, October 14, 2009

Being a Caregiver

As a professional caregiver for more than 20 years I have felt very comfortable taking care of people. I frequently give patients and their family members advice. Now I have a totally different perception, as I have become a caregiver at home as well. I have told many people to "take care of, so they could take care of their loved one", and "find a balance spending time with and taking care of the other people in your life, not just the disabled one". At the same time I have always had a difficult time slowing down and taking care of myself.

Recently I hit my wall, the first time ever I was a "no call, no show" at work. I was putting my daughter to bed and fell asleep, I did not wake up until almost 4 a.m. my shift started at 11p.m., I was sleeping when I should be spending time with my kids. I was worrying when I should have been sleeping. I felt I was failing as a mother, as a spouse, as a friend, I started pulling myself away, and becoming more depressed. Sleeping was my escape, because when I was present I could never do enough. The short amount of time I spent with my family was met by each of my four children (2, 6, 10, and 12) demanding their portion of my time. It was usually in a negative way such as whining or arguing, which made me even more resigned to retreat.

It was during this time that I was trying to keep up with and understand my 12 year-old son. He is an avid reader, I keep track of what he is reading by reading on my breaks at work, parts of the books on google. His fascination and dream is to be an astronaut. His hero is Homer Hickman. First I read some of "October Sky". Intrigued by his writing style I than began reading "The Keeper’s Son".

My son’s hero has brought to new light my perspective in life. For the past several months I have felt as though I have been walking on broken glass, even wading through it. It pierced through every part of me, as I went through stages of grieving. And it hurt so much, I lashed out and probably hurt others as well, never intentionally, but the way we react in a painful situation is frequently less than admirable.

I was reading the Keeper’s Son and his description of beach glass, made me think about the broken glass in my life, and hopes that it would become smooth and glisten in the light like the beach glass he described.

To become beautiful the glass has been changed from it's original sharp broken state as it has been sifted through the sand, bumped against rocks and tossed in the waves of the sea. The broken glass embedded in my life may be from inside of me, it may be imposed upon me by others, but as I read this passage in his book I saw the sparkle through my minds eye. And came to the realization that given time and patience the broken glass in my life may become smooth and beautiful like the beach glass.

Tuesday, September 22, 2009

The meaning of Love

I don't know what hurts worse, my broken heart, or the fragments of broken glass that pierce through any element of protection I have, and leave me broken and bleeding, and exposed to the harsh environment of reality. My heart breaks every time I see another little piece of Troy Slip away. My tears mourn the loss of a relationship in bud that never reached full bloom. The broken glass, cuts received from the outside world, from those who know but do not understand. The harsh words and actions of others when they expect what is not possible, and say and do hurtful things when you don't meet their expectations.

My husband Troy had a pineal germinoma (a benign brain tumor) long before I met him. Our love story started a little later than most, as we were in our late twenties. In some ways he was my polar opposite, the contrast, or compliment,and a balance of qualities I did not have.

Troy was an art major, with great artistic talent (you can see some of his art at wenzelart.com). He enjoyed life, he flew kites, participated in yo-yo competitions, he played the piano, he was never in a hurry to get things done, he was just there to enjoy them. There were some deficits from his tumor and radiation, double vision, difficulty controlling his internal temperature, and some social anxiety. None of which seemed to bother him. He would ask people to read to him. He participated in church functions. And I never noticed any of these things as deficits. He pursued life and enjoyed it, never letting these things get in his way. He did things he enjoyed, in a way he could enjoy them.

I was a registered nurse, always busy, working 2 jobs, always worrying about someone else. My apartment was overly organized, and I had a hard time dealing with roommates who did not know how to clean up after themselves. After all I was the oldest of 9 children who I had taken care of and cleaned up after for a good portion of my life. I didn't know how to enjoy anything, I didn't know how to relax and have fun. There was always some task that needed to be done, or someone else that needed to be taken care of.

Somehow Troy saw through that and appreciated who I am. He kept asking me out even though I wasn't always as caring and kind to him as I should have been. Honestly realizing he had a history of a brain tumor frightened me. I did not want a needy partner, I didn't want to take care of him. I wanted to enjoy a relationship of equals, a relationship that we both shared our strengths, and could rely on the other in our weakness until we became strong.

On February 19, 1994 he asked me "what do you think about marriage", then quickly added, "not just to anyone but to me" my answer fit the proposal style I suppose as I said: "I never thought about marrying anyone else", I didn't throw in the or even about marring you. This lead to conversation about engagement, I pushed the date back, by Utah standards, still a bit unsure of this whole thing and we were married August 19th 1994.