When my eldest son was about fourteen, he came back from Summer camp having lost quite a bit of weight. He was quite ill and was hospitalized shortly after in Richmond. The eventual diagnosis with Crohn's Disease. As a critical care RN, I knew that many if not most Crohn's patients respond to treatment, and are managed through their illness. I also knew that some excellent new treatments were emerging at that time. Although my son was extremely ill during the hospitalization, I truly believed that he would respond to the treatment being provided.
It was during this time that I heard this song for the first time.
During this hospitalization, my son did not respond as was expected, and we began a major medical center to major medical center oddysey in order to find a treatment that would be effective and would return him to relative good health. I prayed as much as I could, especially when I realized that my son's Crohn's Disease actually threatened his life, and had disabled him. This song so well reflected my prayer. My son's oddysey was not to end easily. For years he continued to be treated, and did not live anything which approximated a normal life. The boy who originally had trained to be a speedskater as a teen, could no longer do this. He learned to paint in acrylics and oils and for a long time, this was his only activity. He was not well enough to attend school. I used to feel very badly in this time, not only for my eldest son, but for my daughter, and two younger sons, who did not get the same measure of my time. But there was plenty of time to make this up when my eldest son was well. Then, eventually my son experienced a heart rhythm disorder which the physicians attributed to a fluid and electrolyte imbalance related to the Crohn's Disease. Once again, we made numerous trips to the Emergency Room, and our eldest son continued to lose weight. At eighteen, he was given the option of having a radical surgery in which his entire large intestine, which was badly diseased was removed. He would never be completely normal, but he might not die, and this was certainly the path he was on. The surgery was done, and I spent two weeks in the hospital with him as his private duty nurse. I missed my other children very much. Eventually, my eldest son recovered sufficiently to attend college on a lighter schedule than most. Our eldest son had become engaged at college and was doing well, when Daniel collapsed and died inexplicably at the beginning of the Christmas season in 2008. All my prayers to keep my eldest son on Earth with me, were heard. Somehow, I did not instinctively know that God would instead call my youngest son home. The initial autopsy on Daniel found nothing wrong. Eventually, the pathologists offered the theory that Daniel had experienced a sudden heart rhythm disturbance and had died instantly. When I hear this song I remember not only how hard I prayed for my son who was known to be ill, but also how I somehow missed knowing that God would call Daniel home. Life on Earth IS difficult without Daniel here. Tonight it is five years and one month since his departure, we still miss him very deeply. Our eldest son still battles Crohn's and other medical issues which are related to it. We are grateful that he has been able to remain with us on Earth. We still miss Daniel and sometimes still can't believe that he was suddenly taken from us.. This season, and every other, please make sure that you spend as much time as you can with ALL your children, those who might be taken home, and those with no known medical issue, because the ride for us all may be short, and because sometimes, there are no warnings.
How strange and ironic that while you were so focused on keeping one son alive, another one died unexpectedly and without warning. Even though we know life is precious and brief, it is such a terrible shock and a tragedy to lose a child.
ReplyDeleteYes, it is indeed ironic. I have also spent time wondering if I was so occupied with my eldest son, that I missed seeing something I should have noticed on Daniel. A number of family friends are physicians, and they said they never saw anything that gave them pause. Daniel also had a complete physical with a terrific physician, who teaches pediatrics, just weeks before his passing. Yes, it will always be a shock and a tragedy, as I am afraid you know, all too well. Take good care.
DeleteDear friend this is the fourth time in the past few days I have came back to this post. I just can not find the words to say but wanted you to know my heart goes out to you in remembering your loss of Daniel and that I came and care. Prayers and Hugs
ReplyDeleteThank you for your kind words. I know that you also have experienced the myriad of feelings, the mix of love, horror, guilt, confusion that comes with the loss of a child. It never ceases to hurt, but days eventually slide by more easily than they did after the loss. Still, sometimes, especially around the holidays, we can't help but look and realize what has been lost from Earth.
DeleteAt a loss for words....I understand the loss of our young but this trial and tribulation in which your family has and is enduring is beyond my comprehension. At a loss for words.....It is interesting how in time our hearts settle with the fact that one of our loved ones is no longer here with us in the physical sense and that we still are able to move on with our lives with a little hitch in our giddy up...somehow we manage maybe with God's help or just sheer will of moving forward despite ourselves. Thank you for sharing your story......I guess my loss for words were found too! Bless you and yours....
ReplyDeleteThank you for posting. It helps to know that the family of man cares. I also think that it is important to tell the truth and explain that there still can be life worth living even after difficult trials of life. Best wishes,
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