My Apple Of Hope

Today, I sat in the yard of my new home. I will be able to move in about 10 days. Today is mother’s day and I spent it alone for the most part. I sat under the trees of this new home and let the tears roll down my cheeks. What a beautiful home, what a beautiful yard, and what a peaceful place to spend the final part of my journey called life.

I miss having a home, a real home. Hurricane Ike damaged our home and we made do for several reasons, one being to further our company and one to make sure my daughter and her family had a home and were settled after a fire destroyed their home. Today is the first day of the rest of my life. I was going to write a story about my life with Ankylosing Spondylitis it is unique but the same as everyone else. I was going to write about my struggles with Ankylosing Spondylitis. Mine are no different or greater than any of the other stories I have read on this website. I decided to write about my hope in the final chapter of my life. I am a great believer that God gives us signs telling us if we are where we are suppose to be or doing what we are suppose to do. I have always told my family that if it is meant to be we will know and God will give us a sign. I have struggled emotionally the past month with demons and fears that want to take over. I have soul searched and asked God to help me through this. In the year 2001 I had a cervical fusion on my neck and a metal plate was left in place. It was two years ago this month that I found out I needed to have surgery to remove this plate because the disease has caused the bone to encase that plate and now is filling up the space between. In other words I have a ring of bone around my esophagus and it is filling in the space with bone. I have been struggling the past two years if I should have this surgery or not. I am tired. I am not a quitter and never have been, but I am confused on what I should do. I spent several months speaking to doctors and specialist about the dangers of this surgery and the complications and walked away so afraid that I went in to denial. I had time to decide they said. I spent months debating with my family some easy and some not so easy.

They were angry and upset with me because I didn’t want to have the surgery. They felt that I had abandoned them or not loved them enough no to fight anymore. How could I tell them I was more afraid of living with this disease and the outcome that could happen then I was of dying? How could I make them understand that my love for them was the major reason I didn’t want to do this. I wanted to live out the rest of my life in peace and enjoying what I had then to jeopardize it on this surgery. We all struggled with this each lost in our own pain, confusion and anger. I was angry that they were forcing me to do this and I would be the one to live with the consequences. They were angry at me for not loving them enough to do what ever I could to be here with them. It mattered to me the most that my daughter understand my choices and decisions what ever they may be.

It would be over a year when my phone rang and it was my daughter. I will never forget what she said. I said, “Hello?” Quietly in tears she whispered, “Mom, I love you and what ever you decide I will back you. Whether you have the surgery or not, I am behind you and will support your choice.”  I began to cry and told her that I loved her also.

I cried for hours after that phone call the relief and burden lifted that day was over whelming. It has been two years since they told me I needed my surgery and to this day I still have not had it. I am unsure if it is fear or acceptance that keeps me from having this surgery. My husband and daughter still tell me that I am going to have the surgery and my husband set out on a journey to find me a beautiful home to come home to after I have my surgery. He keeps telling me, you need a beautiful and healthy place to heal after your surgery honey. I said well darling this is what I want. I want a small yellow frame house with a wrap around porch trimmed in white. I want a yard full of trees and shade. I miss going outside and can’t where we live due to no trees. I want it up on stilts so we can enjoy the breeze off the gulf and no one can peek in when we are running around naked. I want it to be closed in down stairs so I can have a place to oil paint, and it must have concrete driveway and sidewalks. He laughed is that all? I said yep that is it. Seven has always been my lucky number, May 2 which adds up to 7, my husband found the exact house I wanted. We signed the papers on May 5, 2011 which equals up to 14 divide by us 2 and it equals 7. Laughs you have to love my logic! We bought our first home at the age of nineteen and the address was 8201 and this homes address is 2801. Today when sitting there I thought about the bird houses I wanted in the trees so I counted the trees that I wanted to put the bird houses in and it was seven. I know I have the signs from God letting me know it will be okay and that I am where I am suppose to be in this last chapter of my life. I used to oil paint as a child and the first painting I ever did was of an apple. I find it comforting that Ankylosing Spondylitis will always be associated with an apple from this day forward. I thank God that my family has gave me their blessing on allowing my surgery to be my choice. I wrote a piece called My Choice. It is my choice on how to live with this disease and my life to live as best as I can. I will sit on my new porch, make peace with my family, myself and God while sipping my iced tea waiting for the sign of which choice I should make on dealing with Ankylosing Spondylitis. I wasn’t sure what I was going to write as my story so I followed my heart and this is what my heart told me I should write. I wish you all a peaceful, happy and joyful journey we call life. My name is Cookie and I have AS and this is my apple for the day. This is my sign from God in the center of the apples a cross appears.