Oh yeah he has it? Seriously? A diagnosis left on a voice mail? A diagnosis so thoughtlessly given to me with no compassion or care. He had very little answers for me and in a follow up frantic phone call I had more information than he did about Down Syndrome and the different types from a simple Google search.
I always wondered who the person was who received the news of Blake's extra chromosome on their voice mail. They probably felt sorry for whomever was supposed to receive it as I'm sure that message was not much better than the one we had live.
I wonder if this woman's decision would have changed if she would have had a chance to talk with me or another mother who is actually living with a son with Down Syndrome. Ultrasounds and Doctors can be wrong, remember mine that said Blake had ZERO markers and Down Syndrome was a non issue .... maybe the same was true about her child's "1% chance of survival"?
I also want to point out that Blake has been a treasure to his siblings, not something that takes time away from them. He can be the bratty little brother too like any other kid but by-and-large they all like playing together and including Blake. We have an age range in our house of 16,12,6,3 who all require attention from us. As parents you juggle and "make it work", having a child with Down Syndrome is not a detriment to your other children.
Blake is many things, a son, brother, nephew and grandson. He is now a student in an inclusive pre-school with peers and friends. He is an inspiration to me personally and impacts the lives of all of the people he comes in contact with. He is also a little stubborn contrarian who is self directed and knows what he wants. He is funny and loves to dance. He is a rough-and-tumble, sensory seeking boy. He is MY SON, perfectly imperfect.
My husband, Blake and I
I would love to be a resource for other mother's who are contemplating this decision and be available to share my experience. The Antenatal Results and Choices (ARC) organization's mission is "We believe that every parent should have access to non-directive information and support through antenatal testing and its consequences"
I would be open to providing the parents support so they gain access to ALL the information from a person directly dealing with someone who has Down Syndrome, not a chart, graph, or medical statistics and what "could" happen. I would like toadd that there are MANY positive "consequences" to having a child with Down Syndrome. NO ONE KNOWS what a child will do or not do but the child. It is up to you to decide if you are willing to live with the "What if" based on tests ans stats alone or instead accept your child for all of his/her uniqueness and embrace your new reality.
I would be happy to consult with ANY mother at ANY time.
Image by: Tamara Wickstrom