What’s the best piece of advice you received after learning of your child’s diagnosis?
This was a topic shared by a fellow blogger and it made me think. What WAS the best advice I received? I can’t think of any single one piece of advice because there were several great pieces as I processed everything.
“It’s ok to grieve the child you thought you were having. There is nothing wrong with it. It is only a problem if you cannot move on from it.” This one was said by several of my fellow moms with children with special needs on the day we found out Mary’s diagnosis. I cried so much, afraid of what this could mean for us and feeling guilty for it at the same time. Hearing them tell me this, it was as if I was given the permission I needed to allow myself to feel it all. It was ok to be sad and scared and I needed to work through it.
“Your life is not over because she has Down syndrome. Neither is hers.” This is a rephrasing as I was told this sentiment many different ways. When we got the news, we felt like all of the plans we had for our family were no longer an option; things like vacations, traveling, retirement, anything resembling a normal/typical life for her. Back then we only knew what the stereotype said. We did not know any better. But then we met families who had a child with Down syndrome. We saw the vacation pictures or trips to places we hope to one day go. We read about other with Down syndrome going to college, marrying, living independent lives. We realized how wrong we were and changed our perspective. We know that Mary’s life will be different from Alex’s, but so is my life compared to my siblings. We are different people and so are our lives.
“You child’s only limit is you.” Yes she has Down syndrome. Yes, she will likely have delays and health issues because of it. But I should not let her diagnosis limit her potential. She wants to dance? I’ll find a dance studio for her. She wants to play sports? Pick one! Go to college? Let’s apply! If I tell her she cannot do something because of Down syndrome, then she will be boxed in with no room to grow. My children are my special roses. They grow up and spread out. Yes, I can keep them trimmed back and in small pots. I can tell them they cannot achieve their dreams because they are not neuro-typical. But then I would miss the full beauty of a trellis covered in blooming roses, I would miss seeing them bloom into their full potential.