Trials and Blessings......
When people find out that I have a child who has Down syndrome I often get the question "Is your life really hard?" I am always taken aback and I do a quick mental run through of my attitude to see if I act like my trials are overwhelming. I have always been able to think no, my attitude is not reflection of that question. So why am I asked that question?
The question is usually asked in the presence of DD. She is usually smiling, social, and moving. She has a natural curiosity about everything. She does not act like she is making my life hard. So, again, why am I asked that question?
Is it the stigma of the word "Disability"? Years ago, when I didn't know anyone personally who had a disability, did I feel the same way? I can't remember how I felt about that word. There was a young man at the grocery store who had Down syndrome. My kids loved getting into the line where he was bagging groceries. Porter knew every thing you ever could know about Star Wars. Every week my kids would try to stump him with a new question. Porter won every time. When he was done bagging my groceries he would give me a hug goodbye. That hug lasted until the manager came over to help extricate me from Porter's grasp. I didn't mind. His hugs were a guarantee for a good day.
When I think of trials, I think of Parker who has Ds, can't gain weight, has a slew of medical problems, and his parents don't qualify for Medicare yet just one of Parker's meds alone cost over $1000 a month. Check out his link on my blog page.
When I think of trials I think of Pam who has a son with Ds and a daughter with Rett's syndrome. The work she goes through to help her two kids with special needs as well as her two kids without special needs would seems overwhelming. But she is always positive. She is one of my heroes.
When I think of trials I think of a mom I visited a year ago. Her baby boy was born with Ds. Her husband refused to believe that this baby had Ds and adamantly refused the heart surgery that he so desperately needed (He also refused to let her tell anyone in their families that the baby had Ds). This family was living in a small 3 bedroom apartment with 7 kids. The mom had no emotional support. I went there to give her information and help her know what to do next. Her baby boy, named Michael, was beautiful. As I held him (and was tangled up in oxygen tubing) I started to cry with the mom. I shared my thoughts with her on how babies with disabilities are given to us because we need them. As I listened to her story , I became more grateful than ever for an incredible husband and wonderful sons,and a loving extended family.
My life isn't hard. I do have trials. I will admit to becoming a basket case for the day DD has her cardiology visit and they remind me how bad her heart defect is. Give me 24 hours to grieve and I get over it. She will have surgery someday. In the meantime, she loves school and does well. She loves to sing and wants to learn to play the piano. We plan on teaching her ASL as a second language. My sons are kinder because of her. They are the ones who single out other kids with disabilities in their classrooms and become their friends and helpers. As much as I would love to cure DD, I wouldn't change for the world how much she has affected our family.
My favorite quote is from Scott Hamil the skater: "The only disability is a bad attitude." To that I have to say a resounding AMEN!