is the story of one family's journey through life with a very special child with Down syndrome and a complicated medical history and how we have learned to DANCE through the tulips.
Monday, July 27, 2009
"I wish she didn't have Down syndrome"
That's what my niece said to me when we were visiting CA. "Really?" I questioned. The statement had caught me by surprise and quite frankly I wasn't sure how to respond. In fact, I wasn't even sure what I felt. . . "I don't," I then followed up. "I like her just the way she is." As I sat and thought for a minute, I realized what a weird thing to think. . . by me, not her. Why wouldn't I want my child to NOT have Down syndrome. To NOT have to struggle with simple things like raising her arms against gravity. To NOT have 7 doctors that have to manage her complicated care. To NOT have to fight to breath whenever she has excessive secretions. Why wouldn't I want her life to be . . . well. . . normal??? But to anyone out there who has a child with Down syndrome or special needs, you may know what I'm talking about. Whatever makes our sweet Ms. Chloe "not normal" as some might say, is what makes her special. I think "special needs" often dredges up negative emotions, but to me I have come to learn that the "special" really means just that. She is special beyond what I can explain. She touches us in ways I could have never imagined an infant capable of. Adults and children, boys and girls, men and women, people of ALL abilities are touched positively by her every day. How could I EVER wish she NOT be her. The Down syndrome just happens to help make her who she is. Do I wish her life were easier? Of course! What parent wouldn't. But Chloe is magic and I wouldn't do anything to take that magic away. Ever.
Subscribe to:
Post Comments (Atom)
All I have to say to that is Amen sister.
ReplyDeleteWELL SAID!!! I couldn't agree with you more. I wouldn't change Ella for one minute!!!
ReplyDeleteBeautiful!!
ReplyDeleteLove it!
ReplyDelete