I’m going to admit it right up front:
This post is basically a self-admonishment. I have examined my own life and found myself lacking. In self-reflection, I have come to realize that my narcissistic self has reared its ugly head once too many times recently, and a mid-course-correction is sorely needed.
I want to “be the change”. I need to turn over a new leaf, and be the change that I desire to see.
But let’s back up a bit to where this admonition originates…
Recently, I was in conversation with a friend who also has a child with Down syndrome. She mentioned to me that when she received the prenatal diagnosis of Down syndrome for her beautiful baby boy, she was immediately contacted by a host of people. The Child Development Center Team at our local Children’s Hospital instantly connected with her family, informing her of resources, support, and service options available to them. This team also arranged for another family who had a child with Down syndrome to meet my friend and her husband, and an instant connection was formed. They had the opportunity to process, share, question, and come to grips with their soon-to-be reality, within the context of a community of people who truly understood what they were experiencing and could walk alongside them in the journey.
I must admit, while being very impressed with the efficiency of the community to rally around someone who was soon-to-be one of its own, I was simultaneously inwardly distraught that I had not been offered the same level of care and service. I coveted her experience, and felt jealous that she had such a positive experience when I had felt so alone and isolated when Jake was first born. I mentally stopped and had a pity party, expounding (in my head of course) on how I always seem to get the short end of the stick. I played the blame-game, with myself as the victim of a cruel, cruel world.
This led me to reflect on how this has actually been a pattern in my life in the DS community.
I felt as though someone “should” have contacted me right away after Jake was born.
At a DS conference last year, when Jake was just a baby, I felt as though people “should” have made the effort to connect with me, the newbie.
When I started in therapy programs with Jake, I felt as though everyone else “should” reach out to me, and make me feel welcome.
And the list goes on…but the point is, I always felt like it was the other person’s responsibility to care for me. To include me. To make me feel comfortable. To reach out.
The epiphany moment for me was when I realized that if I am waiting for other people to reach out to me, then perhaps other people are also waiting for me to reach out to them. For me to be to them what I wish that they were to me. Which is what brought me to the conclusion that I have to “be the change”.
I want to be the person to reach out to people who are new to the DS community.
I want to be the person who makes the first move, who welcomes people in, who creates an atmosphere of acceptance and community.
I want to create an environment of support that will cause people to look back on their initial experiences in the DS community with rose-colored glasses, instead of with a sense of sadness.
I am tired of always expecting other people to step up and cater to me, and being disappointed if they don’t.
So, please feel free to remind me of this post if you see me not living up to this. Seriously.
Oh, and also, here are some pics of my cuties. Happy Wednesday. And happy almost Valentines Day!