Yesterday I had reposted a link on Facebook to a blog post here that I had written three years ago. The One Conversation I Long To Have. It was a post about my second son, Jamie, who has a disability. It was a post about the “What Ifs”-the things that might be different if he hadn’t been born with a disability.
A very good friend of mine called me this morning and suggested I write about the things that have happened in my life that would not have if Jamie had been born without a disability. (I hesitate to use the word ‘normal’. We could argue all day about what THAT even means! Setting on a dryer? Will agree to that one! )
One of the main reasons that I took his suggestion so seriously, is that we are friends because of Jamie’s disability. We would never have met otherwise. Think about the people who are important in your life, that would not be there if just one thing about your life had been different. I have many. My life has been truly enriched with people and experiences that came into my life because I had a child with a disability!
Having a child born with a disability can bring many unexpected people in your life. Both good and bad. Helpful and not. Teachers and takers. If you are lucky, it can bring you lifelong friends.
I know that Jamie has affected many people through his life. I still run into some of them that will mention him. He has been out of school for ten years already, but he has not ever been forgotten. He, himself, became a teacher to so many. Teaching patience, kindness, and giving us an insight into what really matters. He has made us laugh, cry, taught us pride in simple things.
I went to a class so long ago called Partners in Policymaking. It is a program that was started in Minnesota in 1987 that was designed to teach people with disabilities and family members of those with disabilities the power of advocacy. It truly changed my life. I met so many amazing people during this program and learned so much from them and from the speakers.I found more of my voice! The people in this group are the ones who urged me to tell ‘my story’ when Jamie escaped from the house and I got charged with neglect because of it. It helped me to fight it. Which led to other things I never thought I would do. From talking in front of the legislature to changing laws, being on many tv and radio shows and being in newspapers all over the country, to talking to other parents who found themselves in a similar place as I had.
Because of Jamie, I was able to take a terrible situation and turn it into something positive and I was able to help a large amount of people.
When he went to school, inclusion wasn’t really a common practice. It was ‘practiced’ by ‘letting’ our kids be included at lunch or maybe art class. I would not accept that at all. We sometimes had to fight to have him included, but I knew it was his right and it was the law, besides the fact that it was the right thing to do. All kids matter-we had to remind the ‘regular’ teachers of that sometimes. The kids were great, and usually were all through his school years. I hope he inspired some of them! I know he taught some of the adults-those are some of them that still stop me and talk about him now!
I have been taught to speak out, to love unconditionally, to look at life and the world with wide open eyes, with acceptance. I have been taught that some things just don’t matter as much. I have learned to laugh at much much more.
My kids would have had a much different life without a brother with a disability. But, I wonder, would they be as kind, as inclusive? I hope so, but maybe he also taught them. I know two of them would have different jobs than now-most likely neither would be direct care providers.
I feel my world was truly expanded when I had Jamie. Experiences, people, knowledge that I would never have had otherwise.
What I do know, is THIS life, is more than great. It has been enriched. It has great love. Jamie? He is smart. He is loved. He is happy!