It was Christmas 2004 and I was getting asked the usual questions by my family as to what I wanted for Christmas. I was told by my family that responses of “World Peace” or “All my family together and healthy” were not what they wanted to hear. They wanted me to tell them something substantial and tangible. Needless to say I am always told I am the worst person to try to purchase a gift for. On the contrary I feeI I am the easiest person to select a gift for. I have all I want because I want all I have, which is just plain and simple to me.
So the badgering of soliciting my “Christmas List” continued until the one day I folded and handed my husband my short list. I knew it was not going to satisfy his desire to adorn me with diamonds and furs but he asked what I wanted and he needed to respect my wishes.
The very first item on my list was a pair of gold Claddagh Earrings. I had admired them for sometime quietly and I knew that my husband did not have any idea or I would have already been wearing them already. I had a few other odds and ends on the list but I was really stretching with this list directive.
I really could not ask or put on a list my heart’s desire. I knew giving my husband the unattainable was cruel and unfair because my heart’s desire was not within his reach or mine. We already had spent years striving to attain what would make my heart and his hearts sing with joy.
Our daughter was 19 years old and for the most part had spent the last 2 and half years in and out of bed. She had always been tall and slender but this Celiac Sprue disease was truly affecting her weight, her ability to go beyond our home to social settings and College.
Our daughter, only daughter, as well as our 2 beautiful sons were and still are the center of our universe. We did, and always will do until our last breath, whatever we have to that is best for them.
My husband and I were able to bring her to the best doctors on the east coast and now we were taking her the Mayo Clinic. I already scheduled an appointment with the Mayo Clinic but there were several weeks to wait for that. We were desperate as each pound dropped from her very emaciated body as it was. So needless to say writing on my “Christmas List” our daughter’s cure was definitely not happening. I continued to go directly to God with that request.
Christmas day arrived and I received my beautiful gold Claddagh earrings from my husband. I loved them and would cherish them. I wore them with my Irish pride and he knew I appreciated how he respected my “Christmas List”. That was the best part of Christmas for me because things went downhill very quickly after the gift exchanges commenced.
Our daughter went straight back to bed and looked worse than ever. I had her to the Dr. twice during the week. She was having a very difficult problem that she had never had before and the meds given were not helping. My instincts were screaming for some time now that Celiac Sprue was NOT her problem although the blood tests, scans and scope all pointed to that disease I was not buying it totally.
I had joined all the support groups on the Internet for Celiac Sprue Disease and I felt that she was not reacting to the treatments like the people I talked to very regularly. That is why I decided that bringing her to the Mayo clinic and having her evaluated by a fresh group of Drs. might shed the correct light on her disease.
It was 2 days after Christmas and she was in agony and doubled over. I had not left her side and slept right next to her. I did all that the Dr. told me to do and had him on the phone constantly. I was given a last option as a course of treatment but if it did not work I was told to take her to the Emergency Room where she definitely did not want to go. I took out all the treatment apparatus and talked to her about it. She trusted me as she had all her life and told me if I felt like it was the right treatment she would allow me to administer it to her. All at once my inner voice was screaming a big NO not to proceed. I shared this with her immediately and I told her we were taking her to the hospital where someone else could decide the next step. I did not feel that I could do anymore for her at home. I was broken because I am “A fixer” and when a fixer is broken its devastating. I would give her my heart, my kidneys whatever she needed if it made her live without all this pain!
It turned out I had made the correct life or death decision not to administer the in home treatment. I was told by the ER nurse that if I had proceeded with the treatment I could have killed her. Our daughter was dying before our eyes and there was not one single thing in this world that we could do but let more Drs. Try to figure out how to intercede and prolong her life as we stood by and watched and prayed and prayed.
Almost 12 hours had passed and she was all hooked up to several lines of IV. Several non invasive tests were done and we awaited their discoveries preparing ourselves for more bad news.
The ER Dr. entered our presence with some news. She announced that our daughter’s disease was in fact Crohn’s Disease. My daughter let out with a scream of joy for this diagnosis. We all stared at her in shock as she explained that maybe NOW she will be able to grab hold of this disease and fight it with all she had. After all we followed everything to the letter with the Celiac Sprue diagnosis and all the while we both did not truly believe it was in fact Celiac Sprue all those years.
The ER Dr. explained that she was in a very bad way internally and before anything could be further done for her, they had to IV powerful meds to reduce inflammation and then decide what the next step would be. She was not allowed to eat, which she had not eaten in 2 days as it was and the hunger pangs were painful in addition to the other pain. Our daughter was tough and we would help her again thru this nightmare all the while I was suppressing my kick butt and take names qualities for the Drs. that missed this Elephant in the room. My husband gave me a knowing gaze and grabbed hold of my hand knowing full well that a war was just delivered to his doorstep.
I slept along side of her watching her breathe and holding her hand as her body convulsed in pain and hunger. Her eyes starting to plead with me to make it all stop. I begged God to give me the disease, I was tough and I could take it rather than her. I bargained with God and told him what I would give up, give back etc.
After almost 2 days of reducing the inflammation she was ready for a procedure that was going to tell us the extent of her internal damage and the how and if it could be repaired.
The young Dr. came in to discuss what his intentions for this procedure were. He and my daughter hit it off famously. Thru it all she still had a sense of humor and he was an absolute doll! I had not slept, showered or left her side for days. I became aware of my frightening appearance as they discussed her surgery. I also became aware that I had lost one of my precious Claddagh Earrings. I was for a moment truly upset. I decided to shelve the mourning process of the loss of the earring because my daughter was the priority and an earring could be replaced, a new outlook for me anyway about special gifts that I cherished.
The exploratory procedure was done delicately with pediatric instruments I was told because of the delicate condition her insides were in. We were told that there was hope of reducing all the inflammation but there were complications that maybe could be healed with a high amount of steroids combined with several antibiotics and her road of healing was not guaranteed. As the Dr. continued to explain I started to melt down from the several days of adrenaline rushing thru me nonstop and the lack of sleep and food. I had sent my husband home with the boys because I wanted to watch and question everything that went into those IVs. I wanted no mistakes! Since obviously there already had been the greatest mistake already done and which in fact was why our daughter was in this very place at this very time
My husband practically carried me out of there all the while telling me I could come back as soon as I showered, ate and had some shut eye and he had scheduled his Mom to stand watch at the hospital and after all she is a Nurse and an anal one at that. I complied with his wishes because of sheer exhaustion.
During the car ride home I became aware again of my disorderly appearance and lack of one earring. I hesitated to make my husband aware of my loss because it was so insignificant in comparison to all we had been thru and him inheriting the anal qualities of his nurse mom, he would comb the hospital and retrace every step just to find my cherished earring.
I decided to tell him when we had arrived home so he would not take the route of scavenger hunt right then and there. He knew with all that had transpired this earring thing paled in comparison to what we were facing of possibly losing our daughter.
I stepped into the shower with a long list of prayers, thanks and grievances. I spoke to my Lord and Savior a long time in there. I asked for answers, cried quietly for what I considered a failure on my part as her mother not to have done more to keep her out of harm’s way.
I needed answers only God could tell me and I needed them fast. I needed peace that surpasses all understanding that in the big picture our daughter would survive. I was finishing my shower and I heard my husband’s booming voice yell my name. All I could think was “Now what” my heart jumping! I rushed out of the shower to see my husband smiling big. He was holding my Claddagh Earring, the other Claddagh Earring. I was so confused. I knew my shower was definitely not long enough for him to run to the Jewelry store and purchase a replacement earring. Something never off the table for my husband.
He continued to smile and told me that he had begun retracing our steps of a few days ago and was planning on slipping out to the hospital to continue the retracing process when in fact he had seen a gleaming from the floor right in our upstairs hall outside our bathroom door as he was focusing on all that was around him.
All of a sudden I felt a rush of Peace and understanding. I cried and cried. My husband held onto me and just thought this was me cracking finally. I was in fact crying in joy. God had whispered to me that if I had lost my earring for days and I had in fact been to so many places in and around our house and the large hospital and my earring could be saved from a loss why would he not save my daughter who was far more precious than a golden earring. Then a Bible verse that I had recited so many times took on a whole new meaning.
Faith is being sure of what you hope for and certain of what you do not see. Hebrews 11:1
Was I sure that she was going to live an earthly life thru all of this, the answer was no.
What I became sure of was that God had her in the palm of his hand and He was in charge not me. As the days and weeks rolled on it became apparent that the plan was that she was going to live thru this ordeal.
The story will be continued…….. …in the next Blog
Friday, January 15, 2010
I truly understand what Steven H. Jackson was conveying with this riveting novel that hit home so very close to my heart. It is quite evident that Mr. Jackson has done his homework and has tremendous knowledge of NFP organizations .
I am a mother that has had a bird’s eye view and experience with a crippling debilitating auto-immune disease that is claimed to have “No Cure”. My daughter has Crohn’s Disease and was misdiagnosed for years with Celiac Sprue Disease another auto immune disease which rendered her bedridden and missing most of her teen years.
I never could accept that there was “No Cure for her”. I spent approximately 2 years pounding away on my computer seeking a “Cure” for my daughter. Always feeling that there truly was something “out there” that could help my daughter and others battling this auto-immune disease other than the very deadly pharmaceuticals that were offered and used.
Mr. Jackson illustrated in this novel what myself and many others ask themselves as they enter the chemopthereapy treatment centers, the Iron Infusion Centers, and the Remicade Infusion Centers . Along with the Diabetics as they check their numbers several times a day only to decide how much insulin is needed so they can enjoy a meal.
The looming question is…. “Is there a Cure” and is the health care industry making too much money off of the diseases to allow the cures to become available.
Mr. Jackson set in motion in his novel thought provoking issues of Today!
I loved Thomas Briggs, and his girlfriend sexy FBI Special Agent Marilena Rigatti. The love story that intertwined the criminal acts of many was classy and very well done.
I am looking forward to the next Thomas Briggs Novel !!
Posted by Kathy DeCosmo at 6:43 PM
Vigilante" opens up with a powerful scene that provoked emotions in me not felt in years! I believe there is “Vigilante” in most people because of various circumstances in life. Claude Bouchard ‘s ability to stir deep emotions from his reader from the jump is truly a gift as an author. “Vigilante” grabbed my attention, held my attention and had me guessing until the very end.
I recommend reading “Vigilante” you will not be disappointed and like me will want to read the next book
"The Consultant"!! Purchase both together!
You can find "Vigilante" and other books written
Posted by Kathy DeCosmo at 5:18 PM