“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller
Happy St. Patrick’s Day. Also Happy Down Syndrome Awareness Week! This year I’m feeling a little tapped out on how to really educate about Down syndrome. Every day I come across some new ignorant comment or thinly veiled type of racism against people with Down syndrome masked in “their best interest” or “humor.” Unfortunately, three years ago, that was me. I looked at people with Down syndrome with pity in my eyes and sadness for the burden that it must be for their family. Three years ago, at this time, I was blissfully unaware that I would be the future mom of one of those individuals that I pitied so much. I was blissfully unaware of my own ignorance. And then when I found out that I would be the mom of a child with Down syndrome, the fear came. Also the joy came, but that came much later.
Over the last year, I’ve been thinking of those fears. It’s so strange what popped into my mind when I thought about this diagnosis. When the health problems seemed to be less of an issue, the fears started being about every day life. Instead of explaining what Down syndrome means to me this year, I thought I would just show you all of my fears up close.
What if she has no personality?
What if she is sad all of the time?
What if she and Fynn never play together?
What if she just never experiences the joy of childhood?
What if she never walks?
What if she isn’t curious?
What if she isn’t interested in playing with toys?
What if she never reads?
What if she’s not pretty?
The thing about fear is that sometimes it’s based on truth and sometimes it’s based on a lack of understanding. I still have plenty of fears for Mia as she enters school and then becomes an adult. I have fears that will never go away, but every single day, I am reminded that I’m not the only one fighting for a better world for my daughter. I realize that every single day I have to throw my stone in the water and hope that the ripples keep going. If we all keep throwing in our stones, think of all those ripples.
This week, Ruby’s Rainbow is finishing up their 3-21 Pledge drive. Ruby’s Rainbow gives scholarships to adults with Down syndrome who want to pursue post-secondary education. They’ve raised $100,000 so far. It’s amazing. I’m putting the link in this blog in case you want to donate towards the cause. https://www.rubysrainbow.org/321-pledge/
What if Mia gets to go to college? Now THAT is a big dream. It’s a good thing we’ve turned into big dreamers in this house.
