Care Giving: The Long and Winding Road
A Reflux Mom wrote to me: “By nature I think I am a pretty positive person. Lately I feel very stuck in anger/bitterness about the fact that it has taken so long and so many doctors telling us things were OK before my son was diagnosed with Gastroesophageal Reflux Disease (GERD). I know I am not helping myself or anyone else with resentful feelings. I am going to seek help but I wanted to know from someone who has traveled down this road what you found helpful. If you had similar emotions, what helped? I can't change the past but I sure am tired of people in the medical profession letting me down. I don’t want to stay angry but I am.”
Taking care of an infant or child with a chronic condition such as GERD can lead to exhaustion and burn out. Believe me; I have certainly shared your thoughts and feeling. At times, I still do to some degree. I guess there are many layers. During the search for a diagnosis, I had periods when I couldn't face another doctor’s appointment. I would take a month off and call a halt to any clinic follow up or test. The kids still went to the pediatrician for an illness or urgent matter but that was all. There are so many ups and downs with clinic visits. You wait so long to see the specialist and your hopes are raised that “this doctor” will be the one to make everything better. You leave with new prescriptions and lab slips but no real answers.
The other part, the Mama Lion part persisted against all odds to find the reason for the symptoms. The relentless questions, research and doctor’s appointments eventually lead to a diagnosis. One part of me felt like the doctors should have given me more credit for finding the cure. Only one doctor, my wonder GI actually verbalized it-if it wasn't for your persistence and excellent home care, this kid would not have had such a good outcome. I cannot tell you how important those words were to me. It is like being a mother-you do all of this stuff out of a deep and complex love for your children. One part of you feels like that is enough to sustain you through sleepless nights and fighting siblings, another wants some understanding and acknowledgement from others.
So, what to do? I think having other moms to talk to who really understood helped me to form a circle of support. It may not be easy finding another mom with a kid who doesn’t eat, sleep or grow like a weed at the neighborhood playground. You might need to search deeper and call long distance or email across the world. But there are others who share your thoughts and feelings. My network helps me cope with any issue large or small. When we landed in the hospital unexpectedly from the pediatrician’s office, I called my network of Reflux Moms first for sympathy and support.
I think the other part was helping others via on line discussion boards like The HealthCentral Network. It helped me to know that someone else didn't have to face the same challenges that I did. When you have a kid with reflux, you know there is no road map or guide book. We all need to learn from experience and hard work. I could give another mom or dad some hints to make their journey a little easier with fewer road blocks and dead ends. Oh we all have our roadblocks and dead ends. Maybe just a few less.
The last thing is the writing. Writing about my experiences and sharing my story with a welcoming on line audience was also very therapeutic. I hope you will write down your story or keep a journal of your experiences or share your story with others on line.