At a doctor's appointment on Wednesday, I was reminded that things could always be worse. As true as this is, I still feel like I need to get some things off my chest. Below is an excerpt from a letter I will be sending to the pediatrician. These are my thoughts and feelings today.
"After leaving your office on Wednesday, I felt horrible. I have had a huge guilt trip just from the thought that I could be so inconsiderate of others, while being concerned for Kate. You are exactly right. It could be so much worse. Like you said, it could be cancer. It could be so much worse than cancer. After close to a dozen trips working in medical missions in Honduras, I know this first hand. I have worked alongside doctors as they treated elderly patients, who were seeing a doctor for the first time in their lives while on their death bed. I don’t know why God chose for me and my children to be born in such a blessed and privileged country, but I’m thankful that he did. I know that while Kate and Leah both have had “little issues”, they would have had an entirely different outcome in a third world country. I write this not as an over privileged, closed minded person, but out of sincerity.
Cancer sucks. It is most certainly, a horrible disease. While I personally have not yet had to deal with it, I have watched my uncles, grandparents, childhood friends and even my mother battle with it and in some cases, lose their lives to it. It can have huge effects on the patient, as well as the families surrounding the patient. The patients can wind up on so many medications that you have to wonder which is worse, the disease itself or the side effects. The medications can have long term side effects, some of them not even known. It can affect the patient’s personality and behavior. It sometimes makes children unable to participate in normal childhood activities, like going to preschool, Bible class or the playground. They often spend many days of the week in doctor’s offices, labs or hospitals. They often miss out on birthdays, holidays, celebrations and vacations.
It most certainly affects the other siblings in the household. The constant care of the sick sibling, lack of attention shown to them, constantly being drug to appointments, being made second priority and stressed out parents eventually take their toll on them, too. Sadly, they somehow begin to feel less important.
The effect it has on the parents can be detrimental. There’s the financial stress of what bills to skip this month and what to live without to pay for medical care. There are the sleepless nights and never ending days. There is the constant giving of medications, soothing and comforting the child, scheduling and getting to appointments. Sometimes careers are put on hold so that one parent can stay home and tend to the sick child. One parent may even have to pick up a second job to help offset the expenses. Marriages are put to the test and pushed to the brink. Parents are forced to make decisions they aren’t formally educated to make, based off information from so many different sources, about the well being of their child. It seems at every turn there are skeptics, critics, conflicting advice and doubt. It is enough to make anyone go crazy.
Sure, there are the good days, when everything seems all too normal. You let down your guard and breathe a little easier. You try to soak them all in and feel normal once again. In the back of your mind though, you know you are still on that dreaded rollercoaster. When the bad days come, you put everything on hold. Your priority becomes your child, not your career, your house, your family. You do without so many things like sleep, time for yourself and often, little things like a meal or shower. You eventually lose yourself. You don’t know who you are apart from being your sick child’s home health nurse, chauffeur and advocate. Your life seems to vanish. Despite the fact you know this is a season of life, there are days that you can barely hold your head above the water for that 24 hour period.
You wonder how other people do it. You see people that have it so much worse than you do. You see people that have it so much better. It doesn’t change where you are at though. To you, for now, this IS your life. Sometimes (or maybe for some people) the LITTLE things can be the BIG things. Despite the fact we aren’t dealing with BIG things (cancer), our LITTLE things (asthma) suck too. I am, by no means, trying to say that asthma is as bad as cancer. Looking at the list of effects that LITTLE asthma has had on our lives, I can’t imagine what it would look like for the parent of a cancer patient. I know that if I were to face something bigger, it would put it all in perspective and our little things would probably become obsolete. It still doesn’t change the fact that right now, this is our life."
It makes me sad to close out this chapter in life, but for now it's what I have to do. I can't handle any more negativity in my life. I can't handle being told that "it's not good to give my child these medicines" when she is needing them and then "there's nothing else you can do" when she doesn't. If there is nothing else to be done, then I need someone that will simply warn of the effects once, prescribe the medicines and let the rest be. I don't need the doubt. I don't need the stress. I don't need the worry.
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