Happy World Downs Syndrome Day

It is World Downs Syndrome Day and I couldn’t not write today! My favorite person with Downs Syndrome is my sister! Anyone who has read the blog so far has started to hear the story of my sister. I was her younger sister so I didn’t know the world any different without Annie in it. She was my older sister and that was how life was. She has a personality as large as it gets and she has an opinion that she will let you know exactly what she is thinking. She is a lot of fun to be around and she was a great sister to grow up with.

Growing up with Annie was always an adventure and it led me to have to navigate a world that I didn’t realize I was navigating through. I had to be bigger for her. I had to make sure she got what she needed when she needed it. I was twelve and we participated in Special Olympics together. I was the volunteer that walked her from event to event. I made sure she was taken care of, that she drank her water, that we found all the events, and that we found my mother when it was time to take her medications. It was all a part of growing up and I am grateful for it. It made me have a completely different outlook on life. One that was bigger then myself.

Annie showed me the world through her eyes. I saw her work hard for everything she got. She was determined to do everything all her siblings were doing. She didn’t let her handicap slow her down. She had two congenital hips when she was born and my mother was told she probably wouldn’t walk but she walked. My mother pushed her and she in turn didn’t let life slow her down all growing up. It was amazing to watch her grow and learn throughout our childhood.

One of my favorite stories of Natalie happened on her birthday. My husband and I were poor college students and we picked her up to take her to dinner and a movie. After we picked her up we told her we would take her to wherever she wanted to eat dinner (thinking she would pick Chilies, or a fast food restaurant) . Without skipping a beat she said Red Lobster. WHAT!?! We were poor college students we couldn’t afford red lobster. My husband talked her into wingers and we got there and she wanted the largest plate of wings on the menu. I think the wings were just as expensive as Red Lobster would have been! It was a great night but we learned to give her select options after that! 🙂

Anyway, I love her so much and am grateful that I grew up with her! Happy World Downs Syndrome Day, the world is a better place with you in it!

-Rachel

Peoples Opinions and Choosing to Follow My Gut

I didn’t realize, and wasn’t aware that as someone who was given a special needs child that it was going to change me, my perspective, and outlook on life. I was a young mom of two boys when I was given my special baby. I learned within the first week that I was going to be going against the grain of many opinions. I learned quickly that the world had placed many boundaries on my child and because I was her mother, on me as well. With the bad also come the good. I watched people advocate for me and my daughter and work quickly to get a support group in place for me and my family.

My friend who had watched the boys while I was in the hospital was a part of the congregation of my church. She made sure meals were brought in. Ladies were there to help clean and watch the kids. As I recovered and worked with Annie. I later found out that they were instructed to sit and listen to me while I talked and expressed my fears, cried, and started to work through all the emotions of having the responsibility to raise a special needs child. They were also told not to compare their children to mine. They were to find joy in each child and their accomplishments. Those times were vital to me. I was able to talk with ladies who were not in the same situation as I was but was there as a shoulder to cry on and support as I started to navigate this new world. They were there when I would be hit with the next step of Annie’s progress and growth. We found joy in our children’s progress, on time or delayed. This was a major help in the process of starting this new path. They honestly cared and wanted to help and as I look back it was a life saving step in my progress.

On the other hand I had others who thought they new what was best for the child and that I didn’t. There were people who believed that I was inadequate for this task. My mother called and came to “help” with the baby. I found it a little odd because she hadn’t come to help with my two boys. I agreed to have her come and was relieved and excited that my mom wanted to help me out. I was unaware that she had different intentions. When she arrived she made it clear that she believed I couldn’t take care of this child and that she should and could raise my child for me. I was devastated. My husbands family wanted me to institutionalize my daughter and my own mother, the one who should be my support and the one who should take my hand and tell me I can do this was telling me the opposite.

I was not a person who typically was loud or confrontational. If I felt like I wasn’t wanted in a situation I withdrew. But the second she let her intentions known I knew that I no longer could be the silent one. I let her know that she in no way would be raising my child. That she was my baby and no matter her shortcomings and mine by hell or high water we would make it. As I stood up for Annie and myself I realized that I was going to have to consistently stand up for her. I would have to observe and learn what she needed and push for her to get it. When people didn’t believe in her or me I had to push that aside and do what was required. I was now a mother of someone who had downs syndrome. A mother of a child who needed a voice, and I would be hers.