When Quinten was born, and we were transfering him to the NICU, I had one of those moments. About 6 months ago Kevin and I were invited to a downtown coffee shop to meet with Jean Bates (President of Central Illinois Down Syndrome Organization) and learn more about CIDSO and the resources that would be available to us after Quinten was born. Sitting in that coffee shop listening to Jean's story of her daughter Christie, born 35 years ago, I was full of fear, unknowns, and confusion about our future. 35 years ago was a different time than it is today, I kept reassuring myself. Jean has done an amazing job being Christie's advocate and she tells us the awesome things that Christie has accomplished in her life. Christie graduated from the public school system, went onto Heartland Community College and took classes specifically developed for people with disabilities, Christie has worked at Jewel Grocery store for 15 years, and she even drives! That day over coffee and tea, Jean made a statement to me that I could not quite understand or comprehend. She simply stated, "I used to get angry and ask myself, why her? Why does Christie have to be this way? Why does she have to work so much harder than everyone else?" As I listened to her words - I was taken aback because ever since our diagnosis with Quinten I never stopped to ask "Why HIM?" -- I was always asking myself "Why Me? Why Us? Why Our Family has to change?"....how selfish of ME! This isn't about me I decided, and I felt guilty for even thinking that way about Quinten. This is about him and what HE'S going to have to endure.
The full "A-HA" moment for me came once I met little Quinten for the first time on November 30th. When we realized that he was sick and needed to be transferred to the NICU my so-called "A-HA" moment hit me on the head like a ton of bricks! "WHY HIM?" I asked....not "WHY US?" All of my love for this little guy overtook me, and I finally got what Jean was saying those months before.
Yesterday, Kevin, Quinten and I had the pleasure of having lunch with Jean Bates and this time meeting Christie (age 35) for the first time. Christie is such a beautiful woman. She talked about her job at Jewel, and how she also does modeling on the side. She has done a lot of self-advocacy work and does a number of speaking engagements with Jean throughout the year. She even told us that she recently has gotten her first boyfriend, Jeremy! She and Jeremy have gone to lunch, movies, and she's even met his family. They are planning a special dinner for Valentines Day as well. Watching Jean and Christie interact with one another through lunch, whether it was Jean helping her finish her sentences, or quietly whispering to her to wipe her mouth with a napkin...one thing was clear to me, there is a special bond between this mother and daughter. They have shared so much in their 35 years together that I am inspired to be a better mom to ALL of my boys just because of having Jean and Christie in my life. I hope to one day be sitting across the table like that with Quinten as an adult, and sharing our story or words with a new family who has just learned of a diagnosis of Ds. I will tell them, "this is not the end...its only the beginning of an amazing life."
I have so much to learn. And we know that there will be difficult times ahead with our family, but as I keep feeling these "A-HA" moments in life...it makes the picture become much clearer for me and helps me navigate the journey of life with my family.
Vist Baby Chadwick's CaringBridge Blog: http://www.caringbridge.org/visit/mandychadwick
Mandy,
ReplyDeleteI am catching up on your recent blogs and wanted you to know I think that your Quinten is so precious. He is lucky to have you and the rest of your family supporting him. I can only imagine how hard it was to head back to work. Hope that has gone smoothly.
Best,
Julie Janis