Sunday, October 27, 2013
I open my eyes, but no water or beach, I am my recliner in my son's hospital room. Oh gee it was a dream, just a dream ... I look over at him sleeping I watch his breathing as his chest heaves up and down filling in every single lung sac with air. I think of how easy it is to just breathe then I see the huge scar in the middle of his chest. It reminds me of a map of his struggles this past two-in-a-half years. It begins at the top of his life and descends just a short distance down and stops .. yes stops. Life for him had stopped as being stuck in a storm and no visual of his next steps .. no directions. As I look at him sleeping he is hooked up to so many machines and five bags of IV Antibiotics dripping into his Portia-catheter all piggy backed together. The doctors know no way to stop this raging evil, let alone cure it. His face is chiseled and clean as porcelain, with exceptions of his beard beginning to peek out from under his thin layer of facial skin. His eyes are closed as sleeping peacefully hiding his brown eyes being and keeping me from seeing the glints of gold in his iris that makes them sparkle. He always had the most contagious smile and then that glint shines through oh look out ladies he takes no prisoners .. haha .. but the reality now is the glint is gone; and all I see when he is awake is struggle and pain. This infection had invaded his body, his heart, lungs, kidneys, lungs, livers, pancreas and gallbladder. It has left abbesses in both of his lungs and his left shoulder. My God father where did this come from and why is it so rare? Someone please tell me, give me some hope. I see this disease drain the life out of him hour by hour. He has received three bags of red blood cells and two of white cells last night. It has invaded his auto-immune system. When the doctor arrives he greets us by saying, "You know I didn't think I'd see you today". I said so when you left last night he was dying and you never took a moment to tell him or I this fact? I could feel my body heating up. I looked at him and said, "You let a man go to sleep not knowing he may not wake up..Maybe he wanted to tell his son he loves him or make amends for things he has done in his past?." I was livid ... it took every ounce of lady like manners to hold back. I wanted to let go and blast this idiot!! How insensitive and pompous this ass is. I said I truly hope you never have to hear this regarding a child of yours. During such times a person should never omits such decisions for an-others life. Beings you were the Admitting Physician and not his family doctor may I suggest you take your unorthodox self out of here before I let you feel a "bitch-slap" that only an angry mother can deliver.. Oh and doc close the door behind you okay ... !@#$%^&^%$#@#$%^&* .. My son sleepily opened his eyes and said, "Mom who was that?" oh no one son, wrong room ...
Friday, October 18, 2013
It feels so peaceful and I feel as if I am floating on air..all I feel is the cool sea breezes as it dances across my face the only sound is the tide as it comes and goes ..oh my how angelic it passes across the shore .. I had the dream of the perfect life, my perfect life .. But fate dealt me a different hand. Do you ever wonder how we are picked or chosen in life .. Who receives or earns the better lives and who receives the lives that take so much time and work. I do often; and yet I still do not know. I keep hoping (I love this word "hope") and praying that one day the answer will be revealed to me, in the meantime I will hold onto faith another favorite word for me. Faith is the meaning of things unseen, yet believed in. As women we are given our children and we immediately know they are ours forever. We do not have to keep them just for a little while or return them if they are not perfect, they are ours to keep ... So the Bible said ... There are many kinds of love in our lives, love of friends, love of parents, love of careers, love of religion, love of politics, love of friends, love of partners, love of pets, love of life, love of dreams, love of promises, love of adventure, love of beliefs, love of parents .. beliefs how do I describe that one. I was a good daughter, so I thought and I studied hard for my dreams and the life I gave myself as a young girl sitting high on the branch of a 'Salt" tree so we called them. I had my little pad and pencil and I as I followed the clouds I began to talk to God. As a child I always felt the draw to Angelic things. Some may say that is the "Catholic in her" haha .. Not really I always loved the feeling as a child I got when I talked to God. I just knew he was listening I mean he was God he would never ignore me or anyone. He had an endless resource of time and great hearing. I would close my eyes and daydream. I told him I wanted to be a writer and get married and have babies..that was all I needed for my life. Oh wait what is that sound, I feel I need to wake up but I can't it feels so marvelous here asleep and dreaming. I have no worries or heartache here. No problems to solve or fingers to bandage. How I long for just a wee finger to bandage..I now have a life to help save a big step from bandages small cuts. Now as I look at my then young son the scars from his fingers n body are in the middle of chest as if saying, " I survived this savage infection that has robbed me of my life thus far." Wait..why is this in my dream I am at the beach with the ones I love. Oh that's right he is not here, he is in a sterile environment alone with his own thoughts as I dream at the beach .. but just for a moment for I am so weary .. and frightened. I am just a woman, no special powers in life just my love and determination to do the best I can for my family and in my life. I just didn't know i would be trying to save my child from this ugly demon that has attached itself to his heart and body. Once again how was he chosen or me as his mother. I keep trying to remember my life and all I might of done wrong or disappointed others to deserve my child to suffer. But, somehow I remember nothing I did; to deal him such a blow .. a fight to live every hour of everyday. Ohhh .. what ... it's water the tide has risen and my family is giggling .. they saw the tide coming to greet me and decided it would be more fun for me to be surprised ..and surprised I was .. As I jump up wet and muddy sand in my hair I hear their laughter and for some reason it is not worth getting upset over so I laugh and dance around like someone put hot coals under my feet .. I am alive .. But my first thought is my son . so I am now back to reality ..
Tuesday, October 15, 2013
I began this Blog a while ago. It began with the rare "Blood Disorder" diagnosis given to my youngest son. It has been a two-in-half year struggle to save him. While concentrating on him and his desire to live and our desire to save him, many things have fallen in my path. New doors opened and old doors closed. All the while reading, listening to the doctors and studying this disease and trying to understand while we live in the twenty-first century; and see no clue how to eradicate this infliction. As I mentioned before there have only been 10 cases ever reported anywhere and he is now the eleventh. How did he get it, no one knows not even our marvelous physicians. He has been treated in three (3) cities and we were met with the same response, no one has ever seen it...I am weary of the time spent under stress and the desire for a healing for my beautiful son. As I write he sleeps in his bed of his hospital room. The night is so quiet except for the rattling of the Med carts being pushed down the hall stopping at each room for nightly med doses. I lean back in my recliner next to him and close my eyes hoping sleep will find me. I can't remember the last time I got eight hours sleep, oh that would be heaven just calm happy dreams of better days. The smells of medication and the cold temperature from the air conditioner is brutal for my tired frame. As I drift off I can smell the sea air and think of my love lost .. I wonder what happened? Yes, we are together and at the beach. The kids are all frolicking in the sand and surfing. Freckles our Cocker Spaniel is running up an down the beach barking as his curly blondes ears flap in the breeze..haha.. too cute. Oh I feel so happy and loved, all I see are smiles and hear giggles as they run past kicking the sand everywhere..How I wished I hadn't got upset and yelled to stop. For in time it would all end .. Oh God please let me sleep take me to a place where my heart sings and is free. Let me bring my family as it was; my two sons and my loves two children..those are the days I long for so please I pray give me a respite for the night and I will be forever grateful .. So grateful Father ..so grateful ...sigh