Every New Year’s Eve brings on a feeling of anticipation for the future and a hope for a better year ahead. People usually spend the week leading up to the New Year thinking of all the things they can change in their lives, including but not limited to their bodies, minds, jobs, family situations, financial situations, etc. Since we entered a new decade this year it seems that the wish for change was amplified. I found a lot of the resolutions I was reading to be inspiring and for a minute I let my mind think of all the things I would like to see change for my life in the New Year but then I decided to have a different goal for 2020. So instead of my wishes for what I can change this year, I will tell you my wishes for what I can learn to fully accept this year.
This year I hope to accept my body and all the changes that came with having three children, I hope to not worry about the number on the tag of my jeans, or the scale. This year I hope to accept that relationships change over time. I hope to accept these changes as they come and try to remember my number one focus is to build and nourish healthy and caring relationships and not to hold on to ones that are no longer serving my intended family in a good way.
This year I hope to accept dirty looks, stupid questions, and inaccessibility. That one might sound weird but it is true. I hope that the dirty looks I get from strangers do not have me feeling down all afternoon, I hope that I can answer the stupid questions with compassion (at least they are trying to learn), and I hope I can acknowledge that the lack of accessibility is really just a lack of knowledge and information not a personal attack towards people with disabilities (including my son). And the most important thing I want to accept this year is Timothy having Leber Congenital Amaurosis CRB1.
Now this one I have already put quite a bit of work into before having an official diagnosis but since getting one it seems the conversations around me have changed. A lot of focus is put onto if there is a treatment (there is not) and if there will be a treatment in his lifetime (no one could answer this one). This year I hope to accept CRB1 for what it is currently (a lifelong condition). This does not mean I have given up hope for a treatment or that I will not continue to stay up to date on what is going on in the world of LCA research. What it does mean is that I am okay if Timothy remains blind for the entirety of his life. This year my goal is to really accept this condition and place more focus on Timothy and who he is growing up to be and being blind is a part of that. Timothy was born this way and how he interacts with the world around him including with me is all partly shaped by him being blind. I have people every day telling me that they hope for a cure or a treatment to “fix” Timothy, and I have come to the conclusion that he is not broken and therefore is not in need of being fixed. LCA might have taken Timothy’s vision, but it will not take away his ability to succeed, feel loved, experience joy, or anything else he desires out of life. This year I hope to feel overwhelmed by acceptance for my life and for my family how they are because I have so much to be grateful for and I do not want to waste another year worried about changing things to be “better” and missing out on all the beautiful things I already have.
Wishing everyone a Happy and Peaceful 2020.