The Program Director at Rett Syndrome Research Trust reached out to me earlier this week to get my thoughts on ‘things I wish I knew the day my daughter was diagnosed’ and I’ve been mulling it over in my head ever since.
What do I wish I knew on that fateful day?
I wish I knew that Rett Syndrome is a spectrum disorder. The way that it manifests in every girl is different. Some girls walk, some girls talk, some have meaningful hand use. Unfortunately, many do not. BUT one things comes across as very clear for all girls with Rett Syndrome: they are magical, beautiful, funny, and quirky. People – both young and old – are drawn to them. And most girls are highly intelligent so intellectually, the sky’s the limit. Bottom line: Never underestimate the potential for your daughter.
I wish I knew that even though my spirit may be broken at this moment, my daughter’s most definitely is not. My kid is a fighter, a warrior, a princess. And she’s still the same sweet angel she was the day before. Falling into a pit of despair is not an option. And taking your cue from your kid about having a positive attitude is the way to go. Bottom line: Though you will have your ups and downs, always go back to staying positive. And if you need inspiration, just look at your beautiful child and feel the love they radiate.
I wish I knew that asking for help doesn’t make you weak. I’m a very independent person and I still struggle with this one. But what I’ve learned is that you need to take people with you on this journey of yours. Get yourself a strong network of friends, supporters, advocates. If they’re not comfortable with your kids diagnosis, they’re not worth having around. It’s easy to insulate yourself from the rest of the world. But that does you, and your kid no good. I take Lily out to restaurants, grocery shopping, walks around the neighborhood. And I’ve built up relationships with the managers, wait-staff of our regular haunts, neighbors to let them know that even though my sweet kid has a hard time with her hands and words, that she understands everything and wants to participate. I raise awareness about Rett Syndrome and I also ask them to help me ensure that my kid is comfortable, and included. Bottom line: Ensure you and your daughter have a strong support network.
Even a year in, I still have so many questions. The uncertainty of the future can be crippling if I focus on the potential negative outcomes. So I do my best to stay focused on the present. And ensure that I’m prepared for whatever may come (case in point, I’m working with a special needs estate planner to get my Will, etc… in order).
Life is what you make of it.