March 21st...3/21 (3 copies of the 21st chromosome)...Down syndrome. I've racked my brain for the past few weeks about how to and what to write about World Down Syndrome Day. I've been hoping to come up with something profound to write to help make people understand how passionate a lot of us are about Down syndrome awareness and education. I'm not as good of a writer as some of my fellow bloggers so I figured I will go with honesty and have it come straight from the heart.
I've been very frank about how I felt that day...February 26, 2011...the day my precious little girl torpedoed into the world. She came into this world unexpectedly...early...and in a blaze. There was no stopping her no matter how much I tried to convince her to slow things down. She had things to do and people to see. She had other plans than her mother did. I wasn't ready...I wanted her to stay a little longer...I wanted her to be stronger...I wanted her to be bigger. Well, let's say...she showed me then and there that she was head strong. I wasn't too worried that she was too early so it crushed me when they had to take her to the NICU.
That was only the tip of the iceberg. I don't think I will ever forget the look on my husband's face when he returned from the NICU with the neonatologist. We have been through a lot over the last 19 years and that was not a look I had ever seen. The doctor started with explaining her breathing issues...then he followed with "your daughter has physical characteristics that lead me to believe she has Down syndrome"...the rest of the evening is foggy. I remember bits and pieces...it was as if the world stopped. My heart was broken. God had punished us for something we weren't sure of. Why wasn't it the woman in the next room? Why wasn't it the woman at the grocery store? Why not one of my friends? One of my family members? No, my thinking was not rational. I was not myself. I thought we had just been told the absolute worst news in the world. I thought our "normal" life was over...I thought we would walk around with a giant scarlet letter on ourselves that would set us apart from the world. For anyone who has a child with special needs...Down syndrome, cerebral palsy, autism, spina bifada, etc....you know these feelings in one way or another...you know the pain, the grief, the acceptance and last but not least...the living after!
There are no words that will adequately explain or describe how wonderful this little girl is. She is the strongest...the most beautiful...most stubborn...the absolutely most perfect daughter we could have ever been blessed with. I'm not going to sugar coat things...the first year was hard. We had a lot to learn. Medical terms, hospital stays, fighting with insurance companies, learning about Early Intervention, researching what is best for our daughter (just like we would for our sons), therapies, heart defect, hearing tests, eye appointments, therapies, exercises, etc...a world we never knew existed. One that was now part of our world. It is not all of our world.
This has opened our eyes...for the better. It has made us better people. It has made us more aware. We see more than that what is shown on the outside. You know the old saying...Don't judge a book by it's cover. It is more true now than ever.
Our life is now just as "normal" as the next family's. We go away for the weekends, we go to church, we play outside with the neighbors, we go to dinner as a family, we go to the movies, we go to soccer practice...basketball practice, school functions, we take family vacations. That hasn't changed because Hailey has Down syndrome.
Some people don't realize...Down syndrome is only a part of Hailey...it does not make up ALL of Hailey. She is a daughter, a granddaughter, a great-granddaughter, a niece, a great niece, a friend....she is funny, stubborn, determined, curious, loving, motivated, strong....she has dimples, blue eyes, brown hair, cankles :-), chubby little arms, tiny feet, pink cheeks....oh yea, she does have an extra chromosome too.
I know that many people in the world, feel that people with Down syndrome do not have the same worth as "typical" children. They aren't productive members of society...they are a money pit for society...they shouldn't be integrated into society. I feel sorry for those groups...they don't know what they are missing. Their lives are less because they don't let people with disabilities into their lives. Their lives would be enriched if they would open their minds and their hearts. I will continue to advocate for my daughter and the thousands of other people like Hailey that rock that extra chromosome. I will continue to try to educate others about how "capable" and how "worthy" they are. I will continue to try to make the world a better place for Hailey and everyone else.
So please...tomorrow...3/21...do something extra. Do something extra in honor Hailey...make a donation to the Down Syndrome Association...learn more about DS...stop and talk to someone with Down syndrome and actually listen to him or her...see them for more than their diagnosis. Read one of the blogs on the blog list (here at Stubborn Little Miss or With a Little Moxie)....fall in love with some of the beautiful children there...share Hailey's blog...share DS information with someone.
Do it for her....Help make the world better for Hailey! How can you ever say "No" to that face!?!?