When you have a chronically ill child, you search for information in every direction… at every angle... looking at every possibility....from the traditional medical world to the non-traditional.
In my son’s case, figuring things out has never been clear cut. We have spent enormous amounts of time looking and searching two different sides of the road; often simultaneously.
Side I - Naming the set(s) of symptoms and obtaining a diagnosis or diagnoses
Side II - Determining treatments and solutions
Undoubtedly, I have always had an incredible sense of urgency to find all of the answers. I want my son to see every doctor and try every possible solution NOW, always feeling that everything has to be “asap.”
Although my son’s condition is not terminal, I often feel like I’m in a monumental race against time; a race to find the right road that can help make life better for him. I’ll run as fast as I can for as long as I can, dragging my son and family along if it will help.
Interestingly, when it comes to today’s medical world, I feel we are both extremely lucky and unlucky at the same time. On the lucky side, so many roads are available to explore while on the unlucky side, I find it impossible to explore every road and every proven or unproven option because of the extraordinary amount of Time, Money and Stamina involved. (although I desperately want to!)
All of the constant trying can place both an emotional and physical toll on you, your child and your family. It can feel endless; often interrupting daily life. It’s just a fact - as time goes on, there will almost always be a new road to take because the medical world keeps evolving and growing - both Eastern and Western medicine.
So along the way, I had to ask myself -- Just how many roads should we try? I had to face and answer a looming question that kept repeating in my head:
Is it okay to say?
“enough testing for now”......
“enough new meds for now”......
“enough labs for now”......
“enough procedures for now”......
“enough searching for now”......
Often, being the parent is daunting because, after all, you are the one who decides what roads to take and how many to go down in order to find answers for your child. It’s a job I take very seriously.
Often, others may cause you to question the roads you are taking or have taken. People are eager to share their own experiences and will earnestly ask, “Have you tried [fill in the blank]?” At times, I feel conflicted because what they offer up may be a road we haven’t tried yet or one I ignored. In my heart, I truly believe that different things work for different people, so how do I know what will work best for my son?
Often, a little voice in my head even says, “If I don’t try everything available, am I a bad parent? an uncaring parent? a selfish parent?
And sometimes I get tired and simply have had enough.
Chronically ill child view
From my son’s point of view, he has had to endure all kinds of appointments, lab tests and procedures through multiple disciplines. Treatments have ranged from trying different medications to changing his diet. Side effects often come with the variety of meds. Just how much should you disrupt your child’s daily life - missing school, activities, even family meals?
And sometimes he gets tired and simply has had enough.
So much focus in a family is on the ill child. Schedules for the entire family are often based on the ill child’s appointments. Siblings often live in the shadows and their needs are often second tier. They see and feel the stressors in the family.
And sometimes they get tired and simply have had enough.
So, what’s the “answer?” Is it okay to say that you’ve had enough?
Personally, the answer is an emphatic “yes,” but only if it’s temporary - meaning that we are just taking a break. We are not giving up.
This break can provide myself, my child and/or my family some breathing room; time to recharge and regroup. For a brief period, you get to step out of the race. Think of it as a positive step. Sometimes the break lasts a week; other times it can last several months.
Since my son is a teenager, I have involved him in the discussions of when to say: “enough.” I let him have a say in how much we test and try; both on the diagnosis side and on the treatment side. Often, we involve the whole family when making decisions on how and when we are going to move forward.
The decision to say “enough” is a personal one.
Everyone’s circumstances are different. Every family has to make the decision for themselves on when they need a break and how long that break will last. There is no right answer, no rule of thumb and no room for guilt. Taking a break does not mean you don’t care enough. It means that you are human.
Even when I get tired from the fight, I can never say “enough” and mean forever. I dig deep, find more passion and end up “brewing more hope” -- pushing my son and the entire family to try another road.
I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.