I’d just walked out the door from the latest appointment with yet another doctor, I’d pleaded again for help, “My child can’t eat food without vomiting and screaming in pain for hours. Help!” I was still feeding him solid food as often as I could, always trying new things, and nursing him every two to three hours all day and all night. This appointment the doctor reprimanded me for my son’s poor weight and told me that I needed to feed him. “Umm, did you even hear me? That’s why I’m here, because I’ve been trying that for a year now and it’s not working!” They didn’t even seem to listen to me.
This wasn’t the first doctor’s office I’d walked out of discouraged. It started with the first phone call to his pediatrician when he was three weeks old when he had begun screaming and vomiting and had continued with every new doctor we tried throughout the year.
He was now one year old and needed solid food. But, every time he ate he would projectile vomit and scream in pain for hours, sometimes days. He was still nursing and did well with that as long as I kept dairy, soy, legumes, peanuts, oats, and beef strictly out of my diet. I was down from my healthy pre-baby weight of 125 lbs to 104 lbs.
He’d gone from the 100th percentile on the height chart at birth to now the 50th percentile and his weight was currently hovering at the 5th percentile. Neither of us were thriving.
One of our biggest and hardest jobs as mom of a child with extra needs is being their advocate. Getting them the help they need and so often it feels like banging our head against a brick wall. I felt discounted because I’m just a mom. Yes, I have a M.A. (Master of Arts) and M.S. (Master of Science) but that didn’t seem to matter at all. Somehow, because I wasn’t a M.D. I was treated as though I couldn’t observe correctly what was happening in my own home with own child.
That was one of the last times I walked out of a doctor’s office feeling completely helpless. I stopped and pondered after that appointment. And, I observed the fact that I know my child the best of anyone on this earth. I may not have the answers or medical knowledge, but I was going to take my mom power back.
From that day on I viewed medical professionals as people to consult with as I determined what would be the course of action in helping my son. I could not continue to wait for them to listen. I could seek knowledge, wisdom, and get input from them as well as from other alternative sources. And, I came to depend heavily on some of those other alternatives. But, I was the one responsible for and in charge of my child’s treatment. I am M.O.M. and THAT is the most important and best qualification in helping my son.
Sarah McGuire is the Mom of two boys and co-founder of Hope Anew, a nonprofit that comes alongside the parents of children with additional needs on spiritual and emotional level. You can follow Hope Anew on Facebook here: https://www.facebook.com/hopeinthetrenches/.