This is my 3rd blog marathon for Down syndrome awareness month. My first year, I was nervous. I hadn't spoke much about Ds. We were still getting our feet wet with everything that came with it. We were emotionally reeling from a daughter having open heart surgery (even as successful as it was, it left scars on our hearts, too). I was overwhelmed with the responses to my writing.
Two and a half years into our journey with Down syndrome, our life has changed in more ways than I could have every imagined. Some of it is just because we added a third child into the mix. Life is busier. The parents are now outnumbered by children. I'm positive this last one will bite us when Hailey has full voting rights in family meetings :-)
I've said before Hailey completed our family. We each fit into the puzzle and she made it whole. Somehow though, she made our world look different. We see things, we know things, that we didn't know before. We have met people that we probably would have never met if it wasn't for Hailey.
I've visited more doctors in the last few years than in my life. Fortunately most of it is just preventative, but there are a small army of them. I had never been to any type of therapy in my life and now I couldn't count the number of therapy visits I have attended. I know Cincinnati Children's Hospital better than I ever wanted to know it and I leave people speechless when I am so flip about Hailey's open heart surgery. Honestly, sometimes I even forget it when I'm filling out medical paperwork for her. I know it sounds crazy, but it is true. That time was my own personal hell, but now that her heart is fixed, I only think about it when someone asks about it or she has a cardiology appointment on the horizon. My eyes were opened to a whole new world at the hospital. I have more compassion, more empathy. I know that everyone has a story. You can't see that story, but it's there. We each deal with it in our own way...find strengths along the way.
I've learned that my OCD type "A" personality doesn't work as well with my atypical child. Everything Hailey does is when she "wants" to do it. Remember...she drank out of bottles for almost 2 1/2 years? That wasn't mom's choice!
I've met an entire network of fabulous people that have a connection to Down syndrome. Many local families and some only through the internet (yes, my husband thinks I'm crazy). Some of my cyber friends I have met and I'm hoping to meet more at the DS convention next summer. That network brings support for the battles and helps celebrates the milestone (both big and small). I never would have made it through those first 12 months without that network.
I'm someone who likes to blend into my surroundings. I don't like to stand out in a crowd. My daughter is the opposite. A room full of people is her audience. She wants to meet them all and chat with them all. She does it daily. She walks into child watch at the Y and pauses at the door until someone acknowledges her. She has to make her presence known. Church is a fabulous place for her socialization. A room full of people that aren't leaving for an hour. People love her. They talk to her. They share stories about their loved one, a friend's relative, etc....their connection with Ds.
Our lives are fuller because of Hailey. It is hard to separate out what is just her and what is her because Ds is a part of her. We don't know and will never know. I can say that she wouldn't be Hailey if we changed anything about her. She's perfect in our eyes...just as perfect as her brothers.
Today I wanted to share these pics that my friend, Shelly, took at the Buddy Walk. They are some of my faves recently.
My goal this year is to blog every day for the 31 days in October. It is called "31 for 21" blog hop. If you would like to read more about other fabulous individuals with Ds, please click the "31 for 21" button at the top of my blog.