I am reminded of you through everything I do. Sometimes it’s really hard for me to sit through a presentation or meeting knowing the subject of the meeting would have impacted your quality of life.
A career in disability rights isn’t always easy. Our family lives, breaths and believes in everything that we work so hard for….independence and equality. At times I want to burst out and scream because I understand the impact that amazing ideas and services could have on people’s lives. What your life would have been life if you were here.
In the various stakeholder meetings I am engaged in (through work) I don’t often get the chance to share that I had a beautiful little girl with multiple disabilities who like so many other children would benefit from opportunities like the ones presented in front of me. I can’t. In fact, sometimes I am not able to say anything. I become silent. The advocate in me goes mute. I can’t say a word because I know I still don’t have control of my emotions and if I speak at all, I will loose it.
I so badly want to be able to support ideas, programs and services that I absolutely know would help families and children with intellectual/developmental disabilities, but I still can’t find the way to show my support and passion for something without breaking down. It makes me feel weak, vulnerable and unstable. Everything I’m not suppose to be as a leader and someone who is admired. Everything I don’t want to be described as. At the same time I feel guilty. Guilty that I am unable to stick up for children like my own daughter.
If only we could be on this journey together. A path of inclusion that includes your voice and mine, your Momma. I’m trying so hard to find the path that allows us to keep what you taught me moving towards independence and self-determination for people of all ages and types of disabilities.
Maybe I haven’t let enough time pass. Everyday that I move forward without you and without advocating for the needs of children with multiple disabilities makes me feel like I haven’t done enough. It’s like the feeling I get when I think about your passing. I could have done and should have done more.
If only I had known and could have prepared.
Everyday I think about what I should have and could have done. Livy, I am so, so sorry.
I love and miss you so, so much.