Four things I have learned over the past 4 years:
- I’ve learned that people really are interested in Ashley’s story. Jonathan Mooney included a chapter about Ashley in his new book and everyone who reads it says their life has changed. From the day I adopted her, I believed she had a message that the world needed to hear, and I think the time for spreading that message has arrived. The world needs to know how Ashley became the person she is – from the abuse of alcohol by her birth mother during her pregnancy, to her short time in the foster care system, to the way a life can be enriched when the right interventions and supports are put in place. Ashley’s story is the story of a miracle, but a miracle that can easily be recreated in the lives of others like her. Families and individuals need to know that, and Ashley and I will help them get there.
- I’ve learned that many people in our educational systems don’t have the heart for the job they are tasked with doing. Perhaps they had the proper calling in the beginning, but over time and with guidance from senior employees already jaded, they give up on their dreams of making a difference in the lives of children. Numbers become more important than faces, minds and lives.
- And like our educational systems, I’ve learned that other bureaucratic organizations whose mission is to support people with disabilities lose their focus due to organizational cultures, budgets, and pressure from law makers. To these organizations, an individual is nothing more than a number and care must be taken to not set a precedent that would open up services to all the numbers. The conundrum is that these organizations will spend inordinate amounts of money to deny supports when the actual support, even if a precedent is set, would probably cost less.
- And I have learned that I am stronger than I ever knew. Physically, the last 4 years have been tough for me. I was diagnosed with Lupus, Rheumatoid Arthritis and Non-Hodgkins Lymphoma. I have survived many medical interventions including radiation and chemo, and still continue with weekly shots and many powerful medicines. But, I have never faltered in the care of my children. I continue to fight the battles which will ensure their promising futures, and I have found the strength to help other families in similar situations.
Four things I want to try to do in the next four years:
- I want to write the book that has been in my head for quite a while. Jonathan Mooney is going to continue to hound me until I do!
- I want to learn Braille. Ashley is learning it and I feel that to support her with her reading, I need to also know it.
- I want to be a catalyst or at least play a role in major systems change in the realms of adoption, education, and disability rights. I am beginning to believe that systems change may only happen through litigation, but I am willing to follow that path if change will happen. I want to go an entire day without feeling anger over injustice but I want the reason for that to be that injustice doesn’t exist.
- I want to recommit to taking care of myself. I have the tendency to always put my needs, my health, and my well-being last in the priorities of my life. I must keep telling myself that I will be unable to achieve the other priorities if I am not healthy. I must take vacations, not feel guilty when I take a sick day, and most importantly, I must eat at least one pint of Ben and Jerry’s Chubby Hubby ice cream a month!