I have written and re written this post about 4 times now. I have lots to say but don’t know how to say it and really don’t know how to write it.
In between the lazy lunches and the sand under our toes we have had an exceptional vacation! Life is slow and I am so thankful for this time as a family.
Today one of my sons made a comment about how he felt we love Grace more because she has Down Syndrome. I knew this day would come but it was hard to hear. It stopped me in my tracks and at first I was angry and hurt. I was speechless. I let my husband do the talking. He asked the boys if they knew what having Down Syndrome meant. They did not respond. He went on to explain that Grace will have struggles that they will not have and she will have to work extra hard to achieve the goals that might come easy for them. He explained that she might not ever live independently. He told them the extra time we spend with Grace is necessary for her development.
It was hard for me to hear and I know it was hard for him to say. Although we know these are facts, I live in a world of “not my daughter”. I hold high expectations of her, similar to the ones I have for the boys. I know in my heart she might not meet some of those expectations but I will never under estimate her. It was hard for my boys to hear because they see how hard it is for her to walk and to actually hear from their Dad the facts of Down Syndrome was difficult.
It is hard for my boys to understand what having Down Syndrome really means for their sisters future. Because really what does it mean? It is hard for me to fully understand and I have researched! I too want the answers but know Grace will have her own story, no ones story is the same.
We have never focused on her or any of our kids disabilities at home we focus on their abilities. Times like this remind my husband and I to take time to listen and to educate our children. We will be talking more with our kids and listening to their questions. They have them just like my husband and I have them and I often avoid questions because they are hard, it is hard for me to come up with answers for them when I have the same questions. I am learning just like they are.
Time will tell and it will answer a lot of questions but part of the excitement of life is the unknown, the what ifs and the dreams we have for ourselves and our children. This I do know…..we will be fine, even better then fine! I know my husband and I will be stronger, we already are…. and my children will continue to teach us lessons we never knew we needed.
I am thrilled to share with you that Maria Shriver has included our “Changing the Face of Beauty” campaign on her Blog. What an honor and please check the article out!
Today I received the most beautiful video from Amy Wright, a Mama with a beautiful talent to write music! Please take a moment to watch this video performed by her very gorgeous family. This family has traveled to National Down Syndrome Congress Convention, Best Buddies International Leadership Conference and the Annual APSE Conference performing this song. It is now available on itunes (search It Starts With A Voice) and a percentage of the proceeds will go to Special Olympics’ campaign “Spread the Word to End the Word.”
Please share this song with your family and friends because it does matter! Every voice matters and makes a difference. This song says it all!
Happy Hump Day everyone!