I haven’t written anything in a long time. I am not a great writer so I shy away from it (I hear my high school english teacher Mrs. Shewchuk in my head as I write this), but as you know October kicks off Rett syndrome Awareness month. This month is always tough for me. This […]
This post is like many I have posted. I start with pieces of old stories that I have already written about. The PAST. But it is from the past, that I have been able to grow. And by growing, I have allowed Ema and Rett syndrome to give me gifts that I would never expected […]
It seems like the last few posts have started the same way… “I have struggled with what to write …” This time is a bit different. I actually have lots to say but can’t seem to find the time to put it on paper. It isn’t that I “don’t” have time. I actually do. I had […]
I haven’t posted in a while. I have struggled with what I should write. One of my goals in life is to put positive light on Rett syndrome and the journey we take each day. I want to raise awareness but do it in a way that makes people want to listen and understand. Over the past few months […]
Years ago, girls with Rett syndrome didn’t have the same opportunities as Ema. There are so many opportunities for young people in our world today because of technology. Ema will have a voice because of it. In a time when so many parents and experts think too much technology is “bad”, we wish for more funding so our […]
I need to explain what I meant in my last post. The Good, the Bad and Sometimes the Ugly Side of Rett Syndrome “Friendship isn’t a big thing — it’s a million little things.” ~Author Unknown What I wrote was true for Lionel and I. We think it is very important for us to show our […]
Like many of my posts, this is a bit all over the place. I started writing different posts over the holidays. I published none of them. I decided that “the 24 hour hockey rule” should work with everything in life, specially dealing with people who don’t have special needs children. But for everyone to love Ema like we do and share […]
I love Christmas. The past few Christmas’ has just flown by. In all honesty, I can’t even remember the last 5. Lionel and I have been so tired and exhausted, that every year seems to come and go so fast. Last Christmas Ema had just been diagnosed with Rett syndrome, so everything was still just sinking in. We have […]
This is the time of year where I wish I could slow everything down. Time is not a guarantee. Even though we don’t always, we should make every minute count. I enter each winter saying I am going to slow down and enjoy each day, hour, minute and second. But like usual, this holiday season came way […]
I thought that I would have to teach my daughter about the world. It turns out that I have to teach the world about my daughter. ~Unknown Lionel’s work ethic and dedication to his family, along with our family and friends support, has allowed me to stay at home and become a full-time caregiver for Ema and […]
EYES on EMA 