I am refreshed and energized. Easter was one of those days where the trees seemed to be exploding with new life and preparing themselves for the new season, Spring. The tulips were standing upright like soldiers saluting us as we left for church. It was a beautiful day, a beautiful day of family.
Nothing in this world makes me happier then a house full of friends and family. I love preparing for them and I love to enjoy them once they are here. The best part of having them is knowing that my home is filled with love. They are our peeps and my kids know when the peeps are in the house all is well.
There is something that has been bothering me for the past week and I thought of a million and 1 ways to share it and million and 1 ways not to share it….. so here goes. I am hurt, sad and a bit angry. As we were approaching the celebration of World Down Syndrome Day I asked my children if they wanted to share the magazine that Grace as well as our family were a part of. One of my sons did not feel comfortable and the other stepped right up. I should not be surprised because he is like his father. He loves any opportunity to get up and present to others! I gave him a copy of the magazine (as discussed here) and sent him on his way on 3/21 to share with his peers. I asked him if he had any questions for me and he didn’t, he felt he was confident enough to handle questions anyone might have. I was nervous for him because talking about the fact that Grace was born with that sweet extra chromosome is not always easy for me so I was bursting with pride when my son wanted to stand up in honor of his sister.
Unfortunately the presentation did not go the way I expected and there were remarks made to my son that he was not fully aware of or prepared for. You see in our family when we talk about Down Syndrome we do not talk about all the things Grace will not do, we talk about what she will do. The text book definition of Down Syndrome isn’t really a part of our every day life. My kids know that Grace is struggling with her ability to walk but by no means do they think she will NEVER walk. They encourage her everyday and ask when the day will come where she will be able to walk side by side with them.
As my son stood in front of his peers he was informed that the future of his sister was not exactly bright. He explained to his friends that he thinks Grace is really smart and he is so happy she is talking. It was made clear to all the children that Grace has a severe disability that is holding her back from doing things that typical children might do.
I picked my son up that day and asked him how it went and with tears in his eyes he told me it went fine. He told me some of the questions his friends had asked and he told me about another friend standing up and saying that she knows Grace and she thinks she is the cutest baby ever. I told him how proud I was of him and that he did a fantastic job. My son did not tell me what had happened. He went a week before he told me what happened that day. He did not want to hurt my feelings, at his young age he was worried about my feelings.
I know others have stories about when they received the news diagnosing their child or unborn child with Down Syndrome. They were encouraged to make certain decisions or they heard the words I am sorry instead of congratulations. We were not one of those families. From the time I received the call from my OB our family received nothing but an outpouring of love and encouragement. I respect the stories of others because I know when you are expecting or delivering a child and find out they have a special need it is hard, very hard and the way the professionals around you handle it will never be forgotten.
I now have a story and I have thought about this a lot in the past week. We will be meeting with this person to discuss and understand the context of these remarks. These remarks impact young minds. Children learn to accept or not accept someone who happens to be different from information they are given from adults. This conversation is important for Grace as well as any other child or adult living with a disability and it will be addressed.
When I thought about this post I was going to shower you all with amazing stories of children and adults beating the odds! Don’t think you will not get to hear those stories because you will hear even more of them. My feelings on this incident have shifted. I am sad this happened to my son, he should not have had to listen to someone talk about his sister that way. In a way I am thankful because I now have a bonfire roaring in my stomach. It gave me direction and reminds me it is important to share. It is important for all of us to share. I will continue to share my journey, I will continue to support others that are finding their way because once they find they way they too will be standing right next to me sharing their story. I will lift up amazing people through this blog so just wait! Times are different…. we have the power of the Internet and information…we have resources that mothers before us wish they would have had. These women paved the way for us. They started the fight and we need to carry their determination on.
Whatever my Daughter decides to do or become I promise you I will be a proud Mama. As long is she is happy I will be happy. I will never ever put limitations on her or any of my children. When we are blessed with a child typical or with special needs there is no storyline accompanying them. There are no guarantees. Each person is born with a gift or gifts and it is how we use our gifts that define us as the person we will be.
Like I tell my kids when they are having a rough day. We all need to stick our nose in a big rose bush (watch out for the thorns!) but take a nice long deep breath and smell the roses. Really smell the roses because life is beautiful and so are the people around us. They complete our canvas and really if we were all the same would there be any interest at all in our painting?
Nothing says smell the roses like OUR FIRST EGG from our chickens Eilleen and Judy – named after their Grandmothers.
If you are in the area come and celebrate with Holly Simon from I AM WHO I AM at O’rourke’s Office at 103rd and Western, Chicago in the Beverly community at 6:00pm this Saturday! She started a foundation in support of mothers who are expecting or have a child with Down Syndrome. She wants a celebration for each and everyone of these children. She is also creating a traveling photo exhibit profiling children and adults that are beautiful inside and out and I have the honor of being a part of it! If you have a family member that would be interested in being a part of this exhibit please contact Holly directly at hairbyhollywould@wowway.com. She has already started speaking in schools and organizations sharing the world of Special Needs and how our kids are more alike then different and that just rocks!
Happy Hump Day! Spread the news of acceptance for my child and yours…… for EVERYONE!
