As a parent to two children with a disease that requires life-saving surgery I am aware that they can die young.
These thoughts most certainly shape me as a mother. As it is with most parents I know, it is my goal to give my children the life I believe they deserve. A life with possibility and all that implies. One with opportunity to be productive, happy people who are compassionate and giving, one where they are loved and love. Since the Gage and Quinn’s well-being is top of mind I try to pack a full life into days, weeks and months.
I do wonder if somewhere buried in Gage’s soul (his particularly) lives the knowledge that he is not long for this world. I’ve often thought that he lives his life times three in each experience he has because of some subconscious level of knowledge that he will not live very long. His personality is such that he must do it all extreme at every moment of every day with a get on with it already (!) attitude.
Do other parents of sick kids think of their child dying? Or do they believe that thinking it will make it so as one friend suggests?
Parents just don’t go around thinking their children will die. Or maybe most just don’t have to. Or maybe parents of sick kids try to make the conscious effort not to think about such things. Or is it just wrong to voice it? Most people in my world can’t handle such discussions, including Julian. I think he is with the camp believes that thinking it can make it happen.
Through meditation and prayer, I’ve come to believe my role is to help the kids experience all they can with the knowledge that their lives can end at any moment and at the same time truly believing with all that I am that they will survive an average lifespan. While I cannot imagine my life without either one of them in it, their fragile lives propel me forward to help both of them live a life fulfilled. That’s enough for today.
Julia,
You are not alone. Some of my trouble with the make a wish I believe is that it states life threatening condition. That so bothers me and I believe it is probably for that reason. I may be more like Julian, try not to think of it. But thank you for writing down what we all think and that I am not the only one who has had that thought ever!! Even in our rare instances….we are not alone.
I was talking to Bryce this am about the make a wish and telling him that Gage also is getting one and why they were getting this, etc. He wanted to know if Gage’s “scarf” healed yet:) I told him yes and it is scar, no f.
Take care
Love,
rachel
You are definitely not alone in how you feel. I too live among family members that would rather not talk about a situation than face it head on. In fact, I believe there are those that feel that by addressing and facing the issues at hand, I am being negative. I also have friends and family members that have read books such as The Secret and Manifesting Your Destiny that have tried to suggest that I need to be positive. (I can be positive and well informed at the same time….it is just a matter of balancing life.)
I have a daughter (Amanda) with multiple health issues, all of which can be life threatening, one being PKD. In order to be a true advocate for her health care, I have not had the luxury of denial. I have attended more doctor appointments than I could ever count, all of which brought new information regarding the possible outcomes. I have also felt the need to research each medical condition in order to know what our options for treatment are, and as I am sure you are aware, the internet details even more extreme outcomes. Those within my family that feel that thinking negative possibilities or actually speaking about them have suggested I stay off the internet and let the doctors handle it, however, I have already realized that by educating myself before entering a doctors office has made me a wiser advocate.
Amanda was first diagnosed with a very rare medical condition within the skin covering her scalp that has a high risk of evolving into cancer. As a precaution, a full CT scan was done and that is when they discovered the multiple cysts in her kidneys and realized that the symptoms she was displaying were actually coming from two different health issues. My husband was among those that felt that we should leave it all to the doctors and was clearly irrigated when I researched her case on the internet. Then he attended a medical appointment with a leading doctor at Children’s Hospital and witnessed a conversation I had with the medical team. When we left, he told me he was very impressed with how I handled the conversation and was able to secure treatment options that most likely would not have been offered if I had not been able to argue/advocate her case. Although he still cannot bring himself to face the risks involved with Amanda, he has never questioned my research again. I guess we just deal with it in our own ways.
I have also found myself making concessions in how I deal with Amanda. She also has a driven need to be moving constantly and I too have wondered if that is not in part due to her knowledge of her health situation. Under “normal” conditions, I may have put a limit on the activities for both time constraints and financial consideration, but then I can’t help thinking that I should allow her to live and be active as much as she is physically capable all the while knowing that at some point, her body may limit her options. That is just not something a parent of a child without obvious health concerns would ever have to consider. I have also had parents ask me if I should limit her activities as a precautionary measure, and for me, I want her to enjoy and live life as much as she can. Putting her in a bubble does not provide her the quality of life that I believe she deserves.
Your daily involvement as an advocate for your children has also placed you in a position where you have to make decisions that require you to weigh the possibilities based on an informed decision while maintaining a positive spirit.
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