28 Jan A New Perspective
by Denise Caudill Irons, NHI Board Member and Parent
Writing a monthly blog has compelled me to review the unexamined perceptions that I have accepted throughout my life. I have worked hard to maintain the image and ideals of what I think my life should be. After years of desperately not wanting to change, I am surrendering to a new and different perspective. No longer do I have the energy to reconcile societal norms that no longer apply to my world. One of my daughter’s therapists told me, “It’s not right or wrong; it’s just different.” I would nod in agreement, but I never believed it. I had strong convictions of what was right and wrong, good and bad. Now that I am starting anew, I get it.
A few years after my daughter was diagnosed, I asked Dr. Escobar if there was any new research about the gene duplication she has. When we received the results of the genetic testing, only a small pamphlet on rare chromosome disorders was available to us. Less than a dozen patients had duplications near 16q12.1 and no one matched exactly. I wanted to know her future in order to prepare her for it. Dr. Escobar responded, “She will teach us everything that we need to know.” Although I was not convinced at the time, he was right. My daughter’s life is providing me with evidence and actions that are helping me construct a different way to live.
Rather than force an antiquated and inapplicable belief system onto my daughter, I am following her lead. She continues to show me a world that is different, not bad. Having core beliefs of love, empathy and humanity allow her to experience all that is good and wonderful. My daughter is innately happy; rarely does she have a bad day. She is drawn to people and things that bring her joy. If they don’t, she moves on. Genuinely and frequently she unabashedly tells those she loves, “I love you.” In the beginning, I stopped her from expressing her feelings. I was afraid that the recipient might be uncomfortable. How ridiculous is it to believe that expressing love and making a connection with another person is an inappropriate behavior?
In addition to people, my daughter adores animals. She loves to be outdoors, and she always wants to be active. She never wants to waste a moment of her day. Even when she is challenged or involved in a less than pleasing activity, she gives it a chance. She enjoys trying new things, but she decides quickly if it’s a fit for her. Thinking back, I roll my eyes at the number of times I have tolerated an activity or an event that was meaningless to me. I continued to participate for all of the wrong reasons. Of course, neither she nor I can go through life doing only fun things; but, I can stop doing things for the sake of appearances.
Adhering to perceived views of what a “good” life should look like has left me with disappointment and doubt. At this time, changing my perspective is bringing me hope and comfort. Previously, I associated different with wrong or bad; and now I realize that it is not. I believe that I always wanted to see the world in shades of gray, but I was too afraid. My daughter’s middle name is Grey. I purposefully chose her name to always remind her of how to see the world. Ironically, it appears that the reminder was intended for me.
Susan HartlingPosted at 16:52h, 30 January
“She will teach us everything we need to know”. What a powerful article. It brought me to tears of wonder and joy. Beautifully written with a message that is eternal.