My son had suffered for years with multiple symptoms, but we had never received one single diagnosis that could point us to the root cause of his issues and in the “right direction” for healing.
We were at a loss and confused about what road to take until.... at age 13, my son was diagnosed with collagenous gastritis (CG), a rare condition recognized by the NIH, the National Institute of Health. (Since that time, we have received diagnoses of several more comorbid auto-immune conditions, which I'll share in another post.)
The first thing I did when he received the diagnosis was pull out my computer and search every article and publication I could get my eyes and hands on. Our highly thought of and experienced doctor at the time was stumped and unclear of how to proceed; rarely ever seeing the condition in his medical practice. While there were only a few medical articles that spoke to the condition, I reviewed and documented every doctor who had been mentioned; taking note of where they were located.
Then, I started the phone calls to see who I could reach and who may be interested in my son’s case. After pleading with one particular doctor’s nurse, I received a call back directly from one of the few doctors in the world who had performed CG research. He led a private pediatric GI practice and taught at a top university in Boston. He expressed interest in our case, so we packed up our suitcases and flew up to have a face-to-face visit with him. He was extremely personable, warm and understanding; making us feel that we were in the right hands... but.. while he presented us with some good ideas to try, he too had little to offer.
Again, no protocol. No clear answers. No solutions.
So what do you say to your child when you have no definitive answers? What parenting trick do you pull out to help your child when they are old enough to understand what this means? Since my son was 13 at the time and very bright, he truly understood the implications of no protocol and no answers. He was not going to die from it, but life definitely was not going to be easy.
We started down the road of trying new meds; undergoing numerous tests to learn more, visiting all different kinds of doctors and going in all kinds of directions, including functional, integrative and alternative. Nutrition too was, and is, an important piece of the puzzle (more on that in a future post).
I also have an older child but nothing prepared me for parenting a chronically ill son. How do you explain why their life looks different than other kids their age? How do you guide them in everyday life where many hours are spent at doctor visits, leaving little free unencumbered time. How do you assure them that they can be successful and have a wonderful life?
Through all of this, I have learned 3 important principles to use in parenting a chronically ill child where there are no clear answers.
1. Work WITH your child
If they are old enough to discuss, make them part of the process. Now, my son was 13 when his health took a turn for the worse, so he was old enough to discuss with. For example, he hated having doctor’s appointments on consecutive days. If I could possibly manage it, I would space them out. If it was time to try a new medicine, I would bring out the calendar. We would sit down and discuss the start date and plan, because more often than not, he experienced side effects. He did not want to take a chance of missing an activity he was looking forward to or miss out on a holiday. If there was a special activity, we waited until it was over to start the med, if possible. We did the same for procedures. Working together to determine the start date gave him some ownership and control. We planned together as much as possible to determine what was doable and also feasible.
2. Set MICRO goals
As I have always told my son, we are not going to put life on hold because you are ill. We are not pausing life. We are not going to wait …………… until things get better, until the procedure is over, until he’s tried the new medicine, until we have more answers. We will continue to put one foot in front of the other. The question of “how” is an important one. The answer to “HOW” is by setting micro goals. A micro goal is something realistically achievable.
Micro goals cover all areas of life, including academic and social. For example, he could spend 30 minutes with a friend instead of an entire afternoon. He could attempt 30 minutes of homework instead of 2 hours. He could exercise for 10 minutes instead of longer. And we make sure to acknowledge, and sometimes even celebrate, those micro achievements.
Chronically ill kids still have the same need as every other child. As parents, we can help them to feel successful and not left out, to feel they are moving forward.
3. Learn when to PUSH and when to PULL back
I have always liked to have a daily list of what needs to get done. It does not mean everything has to get checked off. When it comes to parenting, I am a little like that with my child. I like to know what they plan to get done for the day, so I can be their coach and cheerleader. When you have a chronically ill child, you have to know when to push and when to pull back or let off the brakes. You sooo much want them to keep up with their peers; to have similar experiences; to accomplish similar goals. However, pushing can easily backfire. They depend and rely heavily on you. Often, they feel that no one in the world understands what they are going through except for you - their parent(s). If you are the only one in the world they feel understands, and they sense that you are not “there” for them, then they can struggle… feeling totally alone… that their life is out of control. I have learned that I have to know when to push and when to pull back.
There is no book on parenting when it comes to having a chronically ill child. No one expects or plans for this to happen. Hoping these three principles can help you too. Here’s to always “brewing more hope” in your parenting journey.
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.