Whenever my daughter Amanda dons a new diagnosis I am thrown into a new club.
My first “club” was the parents of children with Down syndrome.
Since then we have added numerous others: Parents of children with heart issues. Parents of children with airway issues requiring tracheostomies. Parents of children with Celiac disease. Parents of children with Type 1 diabetes. Parents of adults that are self-directed…the list will continue to grow, this I know.
When I was a newbie looking to connect and gather information I tried to be friends with everyone. Each new diagnosis brought me in as the low person on the totem pole and I was starving for knowledge. Everyone knew more, inspiring me to connect with each person in my quest for information.
Back in the day there was a huge controversy within the Down syndrome community regarding targeted nutrition and vitamin supplements. Parents were militant on each side. There was shaming, name calling, threats, and even a documentary that aired touting the supposed benefits.
We as a family were able to skate between the groups due to Amanda’s medical issues without judgement. The pro vitamin people understood we were given direction by doctors to not give additional supplements. The anti- vitamin people assumed we were secretly on their side.
I learned at this early stage that, while there will be many people willing to share information, welcome you into their club, encourage you with their way of living, you do NOT have to follow their lead. You do not have to “like” everyone. You do not need to become best friends.
This was a very hard lesson for me to learn. I am a joiner by nature. I want everyone to like me. I like to know what everyone else knows. I like to fix things. I like to make people feel better and happy.
But just because you share a similar situation with someone, the way you handle that situation and support your family can be very different. Not good or bad, just different. And I also learned you cannot make everybody happy no matter how hard you try.
I discovered I could listen, watch, ask questions, and move forward in the way that was best for me and my family.
Eventually finding people in each “so called club” to call friends, and sharing learned experiences happens naturally and as it should.
And when the next club arrives I will be ready to start at the bottom again.
Written By Deb Cavanagh