<a href=”http://dailypost.wordpress.com/dp_prompt/trick-or-trick/”>Trick or Trick</a>

Some of my greatest memories of being a young family of five were Halloween nights. The three little ones would be anxiously waiting for the sun to go down so they could take their pillowcases out to be filled with candy. They were dressed like Indians, vampires, princesses or whoever the hero of that year was.. But, they had to wait for Manuel and me to get our costumes on with our makeup just so, and then the annual picture of us to remember the night. It would be such a special time for all of us.

Things have changed since that time. These Halloween nights I stay at home and watch TV or write in my journal. There are some years that I turn out the light, hoping that there won’t be any knocking or loud trick-or -treaters at my door. No one has ever tricked me for my bad attitude and non-compliance with our social ritual. Thank God.

If some of these dressed up tweens or teens decided that I needed a real scare, there is one thing that would make me go hide under a table, behind the couch or in a closet. If they thought to go to my gate to the backyard to the back door to continue knocking, I would be frantic. That door does not always lock all the way and I would feel vulnerable. It is true that I have an unnatural fear of someone coming into my home and I would not be able to get out.

I am sure that it would be funny for those playing the prank on me, but I would be sitting curled up under a table with sweat dripping from my forehead, heart pounding through my chest, body shaking and my mind racing, until I heard silence once again.Now I am going to the store to stock up on candy for those precious little ones right now.



The last episode of the Red Band Society slapped me in the face and got my attention. You see, one of the young patients has Cystic Fibrosis and finally received his pager to be alerted when his new lung would be available. He took it appreciatively, but told others that he wasn’t sure he wanted to have the surgery. Then the words that grabbed me, “If I have the surgery, it would only be for my parents.” Alex had been through a series of surgeries and procedures throughout his life and I was aware that he was becoming tired of his ordeal. But, I don’t know what could prepare a parent to hear the words that he spoke to me that warm summer night as we walked out of the Emergency Room. We were going to the car and he was still feeling the effects of the pain medication he was given and the breathing treatment he took. He looked at me and calmly told me that he didn’t want to go on anymore. My mind wasn’t sure what he was saying. Finally I just came out and asked him if he meant that he wanted to die. He answered, “Yes.” ‘Shock’ does not come close to what I was feeling. “How dare you say that.” I said back to him. Was I shouting? Maybe. He abruptly turned around and asked me how I dared to tell him what he should do about his life and his body. After all, He was the one who had gone through all of the pain of multiple surgeries, endoscopies, narcotics for pain from adhesions, who had lost one hundred thirty pounds, had a permanent G-tube in his stomach and could not swallow food. This was without mentioning the narcolepsy, asthma, and ulcers with blood transfusions that he suffered on a regular basis. But, all that I could think was all of the work we had both put into his health and to let it all go now didn’t seem right.

I thank God that I made an immediate appointment with my therapist. That session did not turn out anything as I had envisioned it. She basically told me that I had a nerve to make it about me. Alex was the one who was enduring his existence since he was three years old. He was twenty-five now and was able to make his own decisions. Then she gave me the best advice I have ever received. She told me to go home and tell him that my husband and I were going to respect whatever decision he would make and that he was not broken. No, he wasn’t my project to fix. That he was perfect just the way he was. And, of course, that I was sorry for my spontaneous reaction. He was so grateful that night especially to hear that he was not a defective version of himself, but he was splendid the way he was, no fixing necessary.

I heard that gratitude for that talk once again after an Emergency Room visit, and we returned home. Alex gave me one of his huge bear hugs and told me that he loved me, thanked me for everything I do for him, and he brought up that conversation. He said that was what turned him around and allowed him to live for the past five years.

The next morning I went in his room to get him up for a doctor’s appointment. One more doctor had told us that he had the answer: One more surgery. I, as usual, was excited and hopeful, Alex not so much. I slowly walked toward his bed when there were no answers when I called his name. His lips appeared blue, His skin was cold. I knew he had chosen this time to go and he found peace, well deserved peace. He is now my bright shining star and my inspiration to help children with chronic diseases and their parents.


Local Color
My life with my husband, Manuel, was a kaleidoscope of colors and shapes. Each morning I woke up with expectations, a new sense of belonging and the family I never believed existed. The whole world was bright and shining like mirrors everyday. This was foreign to me since I came from a world devoid of color, hope or freedom. We were married for thirty years before Manuel was violently killed in a Metrolink accident and my life fell dark with only varied shades of gray. It has been some years since that horrific day and I, once again, have all of the shades of the rainbow in my life along with a new purpose and passion to fill my days.

My mind returns to those dark and cloudy days, and I remember exactly what I wanted most to keep me warm and bring back sweet memories of my sweet husband. It is a beautiful bedspread he brought home to me from a trip to China. The colors were as vibrant and surprising as he was. It is shades of orange and outlined with gold. It still makes me smile when I see it and feel at peace when I am wrapped in the magic that is him. He is still with me.