Self compassion can be a rocky road at first, like most changes are. But, once I started taking care of myself and sharing some of my son's needs, it had a positive effect not only for myself, but for our entire family.
They said babies with Down syndrome can't nurse, and instead they offered me a bottle. But I was determined and I'd nursed four other babies. Mary Ellen latched on immediately and nursed like a champion. I knew right then that I would need to advocate for our daughter for the rest of her life.
At the risk of sounding trite, Mr. Klosterman is who we have been waiting for. People with intellectual disabilities and their families and friends and allies have been waiting for someone of his stature and character to come to the fore.
When my husband and I announced to family and friends our decision to adopt our son, a 7-year-old boy with Down Syndrome in Bulgaria, the news was not met with open arms. I knew that there would be a lot of skeptics, but I didn't anticipate the pushback we were about to receive.
I had always been segregated from people who were different. But look at what is happening in today's society. The younger generations are friends with their classmates who are "different," and even making them prom queens and kings.
Many of us who have children with Down syndrome want the rest of the world to know that we were mistaken in our initial assumptions and emotions. We want the world to know how much we celebrate our children's lives. And so we tell the story, from grief to hope, again and again.
Putting these musicians together with this community results in a truly beautiful phenomenon -- the guys are so relaxed and natural you forget they're celebrities. You forget they're even performing. As Scott likes to say, "It's all spontaneous."
My mother and this relationship we had. So tested, yet so strong. More than anyone else, I cared about what she thought. Maybe because I knew I was so much like her. Maybe because if I saw strength in her, I knew I could be strong too.
When the lady with the blue folder walked in my room, I instinctively knew that folder she held in her hand was full of definitions, statistics and medical jargon. Wasn't being told your child had Down syndrome enough to process for one day?
I don't know you, yet I feel that we are connected. I remember walking in your shoes and fearing for the future. I remember feeling so alone, then finding others who were experiencing the same emotions, and it helped me cope with the news that you are dealing with today.
When you start thinking about becoming a Mom the first things that pop into your mind is whether you will have a boy or a girl, what will the name be and what they will be when they grow up. You don't stop to think will he/she have special needs! Down Syndrome!
Your dad has started to put his head on my belly and sing to you -- I pray you can't hear him yet, it's truly terrible. But I do hope you will have his eyes, his hair, and a little of his height. Maybe you will have my complexion... God help us if you get my teeth.
If you've known me for a while or followed along on social media, you know that we have a 30-year-old son with Down Syndrome. His name is Adam. And let me tell you something... that boy has taught me some of THE MOST POWERFUL life lessons over the years.