I am the mother of a teenage son with chronic illness that causes unbelievable fatigue, dizziness/muddled thinking, nausea, trouble with nutrient absorption, temperature regulation issues and low muscle tone among other things. His conditions make him somewhat of a medical mystery.
So far, we have received multiple diagnoses, including Collagenous Gastritis - an extremely rare condition, Collagenous Colitis, Gastroparesis, Dysautonomia (POTS) and Hashimoto thyroid disease, among others. It’s a mouthful just to list all of them. My son does not fit perfectly into any one diagnosis that comes with a specific protocol, and this has made life quite challenging for us.
Being a parent and not able to provide your child with answers is indescribably heartbreaking. My son has gone through multiple batteries of tests, and I have often dealt with the issue of “when is enough” testing and searching. You still have to live life along the way. While writing is a catharsis for me, I want to share how we have managed life in the hope that my experiences can touch or guide others as well.
My definition of happiness and success for my child has changed dramatically for me over the years. Further, my definition of what is “normal life” for my family has changed. Years ago, I commented to a therapist about how my life wasn’t normal, she said that we had to create a “new normal” for our family. Those words have always stuck with me. Our family had to come to terms with working around a new set of plans and expectations. It is now our "normal" that we live by and own. However, I have to say that I am always working on my own acceptance for this “new normal” that I never imagined.
I was brought up that you make your life work out with what you have. no matter what it looks like. So, that's just what I do and along side that, I continue to "brew more hope" that things will change and get better.
Disclaimer: 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.