Your blogs really make me think, this one especially because I have been asking myself the same questions. I read the 2006 report, 89 pages, on medications and mortality. The "remedy" is similar to wraparound services, including medical health care along with mental health care, etc. But, Ethan isn't someone who will be able to get down to they gym to exercise. No one knows today what he will or won't be able to do in his life. Things are changing rapidly and so, yeah, what if...what if...
I'm thinking quality of life vs quantity of life and I can only put it into the perspective of my own, less challenged life. It seems to me that making him comfortable as much as possible, rather than not comfortable, might be the guideline. He can't communicate so you have to guess but you can tell. I loved the popsicle story. He has his happy moments, within the realm of what he understands.
So, I don't know. I've been plagued with questions ever since you and others have been raising the question.
No easy answers, that's all I know. It's a lesson or a series of lessons, life is and as my friend Kathryn and I have always said, "The lessons don't lessen."
Take care.
Thank you for your comment. I found your blog when my little guy was first diagnosed with PVL and your words have often been a great comfort to me. I love that you share Ethan with us all. He is such a beautiful child.
Ethan is a gift, and a deal in Heaven must of been worth it. Advances in medicine and technology allow us the joys that Ethan has. He is here for a reason, and for what we do not know. Is it to help focus siblings, to lift the spirt at his laugh or ground you as a family. There will be a day when Ethan will go and prepare the mansion of his family and there will be great joy and tears of joy at that time. A reunion like none other. Ethan you are and shall forever be a source of wonder for all that know you.
I can't even imagine having to think about those kinds of issues. It's one thing to sit in my chair and read your story but I'm so glad I don't have to deal with your problems. But you do it with such astounding grace that I almost envy you.
Tough tough questions, my friend.
I think you have it right. Just go with your gut feeling. It doesn't matter what the world thinks. He is your baby and you do what you feel is best.
Love you. Would love to swim with you. Call me
It's the intent of your heart...the faith that you put forth minute by minute...Ethan is one lucky man!
I would never begin to think I have enough wisdom to garner a response to your very personal questions.
Difficult indeed. Yet somehow you get through it all. I am sure you don't share everything, but even a glimpse makes me stand in awe.
As I read you post I had two thoughts come to mind. One a ver personal experience and one from work years ago.
1. My Grandfather was diabetic and lived in Canada. After he had gotten into a car accident my father drove up to bring him to live with us for awhile. On the way home he found a spot one foot and then next day a spot on the other. We were faced with the choice to amputate his feet or let him die. My parents agonized over it for a couple of weeks, and came to the conclusion that my grandfather would have been miserable with both feet amputated, so they allowed him to die. What choices we have in life are difficult and hard and answers for one are not the answer for another.
2. I worked in NICU at Utah Valley Regional Medical Center, and one of the neonatologists had this to say about his job. (This was in response as to how do you decide what babies to try to save.)
(not exact quote)
I am not here to play God, if a baby is below 24 weeks and is fighting to breath and to live, it is my job to help that baby in every way I can, with all the skills and knowledge I have to help that child live. I can not make that choice as to which child has the right for medical care and which does not. They all deserve the chance to live.
I respected this Dr. for his view.
My biggest fear was to be going through what you are going through. At the same time, you see glimpses of heaven that most of us never get a chance to see or feel.
What ever happens to your Ethan in the years to come, I know that the most joyous of days for you, as his mother, will be the day of resurrection when the spirit and body of Ethan will be reunited and you will see your son as you have always wished to see, and how you see what he is despite the limitations of his physical body. Truly mothers such as you will be among the most blessed of all mothers that will have ever lived. Not just because you were a mother of a child with such great needs, but a mother that loved that child with a passion that is endless and beautiful.
I had to write this here. When you said you wondered what deal you made with him...
I have a good friend who has an adorable brother with Downs Syndrome, she was faced with many challenges through helping him in her family and when she got her patriarichal (I can't spell sorry) blessing. Her Patriarch mentioned that he helped her so much in the pre mortal realm that now it was her turn.. Who knows if ethan helped you there or not, but I thought I would share.
Lisa, I remember when I told my mom about one of the earliest of episodes of Ethan and nonstop crying. I don't think his baths were even helping at that point. I think that you had huge reservations about medication as you were worried it put out the spark that you know and love and even readers as myself who have only read his loving mother's words know and love. My mom felt your pain and felt that you may have to give him medication to get through. I don't have all the answers. It sounds like when the find the right combination that he is still the same boy that radiates life. All medications have risks. Medications for arthritis and cholestoral have risks and yet they are routinely prescribed. A friend of mine who was delivered to a great degree from the fog of his mental state(schizophrenia but not severe case) said that even if his life is cut short by being more at risk for diabetis that it was worth it to him. As loving caregivers, you make the best choices given the medical knowledge of today and what you feel is right.
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