Yet another heart surgery

As if life was not tough enough, this unmerciful infection invades his heart once again. My Lord can't you give him a reprieve long enough to heal.... Can I even remember normalcy in my life .. I have watched my young son waste away to a bare essentials of a young man, sixty pounds later. He was once a muscle bound Football player with the heart of a Lion and now I see glimpses of that once fierce leader. He has been over taken by this rare blood infection and it has compromised his whole body and our lives. I have to argue with him to to take a bite of food, he says, "I have no desire mom" .. my son who thrives on red meat and potato's? Could it have drained him oh his need for survival...Oh my God please no I just couldn't take anymore. I feel as of I have aged a million years, being thrown into the world of fast foods, sleep deprivation caused from sleeping in chairs and cold hospital rooms. This is a smart yet evil infection this time when it attacked his heart it came back as another infection, not even the same one...It now masks itself into another organism. Because of it's rarity they already do not know how to fight it they just hit it with every antibiotic they have and the doctors research on the Internet. How do you kill an enemy you can't see...

Wake Up .. Beeping ..

Oh my gosh what is happening? I was sleeping so soundly and my son was so quiet. I bolt up in bed to the sound of voices and the pushing and rushing of machinery on wheels and carts. I am gently yet forcefully pushed aside. They surround my son's bed, I can't see anything. I am becoming agitated as I as what is going on. All they say is please step out of the room. Excuse meeee!!! I am the only person in my sons life who has remained loyal and supportive as he fights for his life. I cling onto my fatigue and anger and the why him to survive and be here for my son. How dare you say to me to step out of the room. I tell you if you want me out you will have to carry me. They are busy and let me be. His bed is put down and doctors n nurses surround him. They are scurrying for plasma red and white cells. The paddles come out and they begin to shock his heart. Oh God please not now after he has fought so hard. This disease has attacked every organ in his body. He is anemic and his auto immune system is shutting down. Oh God what did I do and who did I hurt for my son to suffer so. What can I do to gain your favor. So many thoughts, ideas, prayers raced through my mind. All the clanging of the machines and all the orders being shouted. I am here right behind you as they fight for my sons life. I am trying to be strong but inside I am screaming, promising and begging God to save him. I made more promises then I can even remember yet keep. But I was sincere of heart and I spoke them. He has lost 60 pounds, cried in pain and been so weak he could not even tell us his pain. It felt like hours as they worked but it was not I later learned it was less then thirty (30) minutes .. A doctor steps back and I could see on his face there would be no chances to apologize for past mistakes or once again speak of the many trials he had beat. He grabbed my hand and as he pulled me closer to my sons bed, he has a tube in his mouth, needles in his arms and and his skin was as pale as alabaster. Nooooo he is not gone I tell you God would not do this to him. He has been a fighter I must of sounded like a crazy lady begging for forgiveness. They all were quiet and just looked at me with the sadness of defeat. I screamed his name and leaned over his body and screamed, "Son don't leave me now. You have your son and family and friends. We are fighters ... At that moment I said, "God I have been the best Mother I knew to be. I was a good daughter and sister and even niece.. Please do not take him from us he has his whole life to see. I looked at my son and begged him to stay. We loved and needed him. As I bent over to put my heard on his chest, he took a deep breath and I was once again was pushed aside and all efforts began again. I did not mind being in the back of all the actions for he was alive. At that moment I realized God had blessed him and even me. For we were given more time to get things right. I knew from that moment no matter how hard or long the struggle I would not give up. He was stabilized and sent to ICCU ... for ten (10) days. But for now God has given us a reprieve and I was grateful for that. It now has become the moments, not minutes or seconds, just moments .. And we were going to savor them all ..

Casualties of Disease ..

As I sit here looking at my son sleeping as he struggles for every breathe. My mind goes to the rest of us. Me as a parent, my ex-daughter-in-law and of course my grandson. Not to mention all other relatives and friends. The illness begins as a shock for it is so "rare" in its intensity. As I mentioned he was the 11th ever to be acknowledged in the world of Medicine here in the states. It begins as any family support for the ill one, but as time goes by from days to months and for us years. I found myself talking to anyone and everyone who could shine some light on his case. My days were long and soon I squeezed everything normal out of my life. It was replaced with numerous phones calls to doctors, labs and different Specialists. My days ran into night .. I ran home for a shower and quick bite then back to the hospital. I learned and the different choices in vending machines and the caloric numbers on each package. I educated myself on which fast foods had the least calories and which of the wilted salads they advertise as fresh were healthiest. I grew as sick of these foods as he did the hospital foods served to him each meal. I slept in a recliner in his room and froze on the leather as the AC blew all night. It is the belief of the medicine world to keep the rooms unusually cool to avoid more bacteria growth. They are correct, however why use blankets with the density of a piece of filo dough .. I cancelled all my business and social engagements to support my son. The one day I realized months had passed. I stopped taking calls for the moments I was able to steal and go home I did not want interrupted. My door bell rang and I would remain really quiet and hide as not to be seen inside the house. I just want peace and quiet, no words, no explanations. Just "alone" time ... I slept and I read and I prayed. I felt so alone, but chose it for myself. I was tired of being the strong one, the one reassuring everyone including my struggling son all was going to be okay. Hell, I didn't know that for sure I just repeated it so many times I began to believe it as well. Then it was back to reality and the hospital... I found myself reliving those moments in time for me. So one night I realized as my son fought for his life; I too was fighting for mine .. 

Awake ...

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 ...

As I dream...

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 ..

But you said I could keep him ...

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

October 2011

As I drove to work, the day was cool and overcast. The clouds broke open every now and then to allow the sun to peek through. It feels like Fall alright where; did the year go? I have agreed to assist a Doctors wife in her investment of a Billing Service. Being a struggle writer, well extra money is always welcome. By the time I make my way east toward the foothills of San Diego a cool breeze has arrived, but I do not care for Fall is here, one of my favorite seasons. I busied myself at my desk when all of a sudden my cell phone rings it is my son Damien and he is breathless. I could feel my gut tighten as he spoke, "Mom something is really wrong, I am having trouble catching my breath and my left shoulder hurts really bad. Please come home and help me." I thought for a second and realized if he is that bad he needs immediate assistance! I told him to call 911 for the return trip home for me was 40-45 minutes. I would head that way to the hospital. Well, when Paramedics and the Fire Department arrived he had a 105 temperature and was going into Septic shock. He had thought he had the flu and myself I thought he might have Bronchitis for low grade fever and congestion. I arrive home and they are gone he had been transported to the hospital already his room is messed up and some plastics were left behind by the emergency crew. The house had an eeriness about it, a stillness it made my skin crawl. You know a foreboding feeling right before receiving bad news. I quickly changed fed the animals a dog and cat and jumped in my car for the ride to Sharp Grossmont Hospital. I had to keep reminding myself to slow down for that corridor of the freeway was tightly monitored by The Highway Patrol. The drive seem to take forever ...