“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Wednesday, May 25, 2011

A Life Changed..( The Life of a Child with Down's Syndrome)

As a relatively new member of the parents of babies who have Down's Syndrome club, I find that, although I have educated myself A LOT, there is still much that I have to learn. I learn from other moms who have older children mostly, and spend my spare time reading their blogs. These amazingly candid women were the inspiration for starting a blog of my own.
As our family walks this road of great unknowns, I often find disturbing facts littered beside the winding path. The high abortion rates for pregnancies for these special kids, the treatment of children who are considered socially unacceptable in other countries, and even new "advances" in medicine that honestly don't seem like advances at all. This is a nation that cried out when 6 million Jewish people were exterminated during the Holocaust. One that rallies against injustice, genocide, and terrorism. We believe wholeheartedly in the right to be who we and what we want in life, and that everyone deserves a chance to chase the American dream. Many men have died to protect these things that we hold so dear.

And yet... the abortion rate of fetuses diagnosed prenatally with DS right here in our country is creeping towards 95%. The so called advances in medical testing will more than likely raise that number even higher. Doctors, who take an oath to protect life, urge many women to abort babies that are seen as less than perfect and these killings are touted to be merciful. We are, in essence, justifying our very own Holocaust. I know, I know. These are strong words. But when just 5% of babies with DS are allowed to enter this world at all it sure seems as if we, and the medical community, are attempting to erase anyone who could be construed as negative, and yes, I'll say it again, less than perfect. People ask themselves, "What kind of life would a child with Down's Syndrome have?" and then make the decision to never let themselves or that child find out.

Let me tell you what kind of life a child with Down's Syndrome can have...and what these tiny beings bring to the lives of their families.

A child is a child, with or without disabilities. While none of us would ever give a second thought to giving birth to a child without them, we often don't realize that EVERY child has the potential to fail to live up to our often high expectations. The difference with a child who has disabilities is that we adjust our expectations to fit them, instead of expecting them to adjust to fit ours. A child with DS will do everything that every other child will do; sometimes more slowly, sometimes with more difficulty, or sometimes, as in my daughter's case (I am so blessed), exactly when she's supposed to. I am not naive enough to believe that this will always be the case, but for now, I am thankful for what we have been given and what she has accomplished. The rest will happen when she's ready for it to. Children with Down's are often silly and especially happy, but that is not always the case because just as we all have different personalities, so do they. They are mischievous, determined, stubborn, and smart. They see the world as a beautiful place, and because they do, their parents often see the world differently as well. They go to school. They play with their siblings. They run, they jump, they laugh, they cry. They love, wholeheartedly, without reservations. They smile like the very sunshine! They grow up, as all children do, and often move away from home; sometimes even going to college, getting jobs and getting married. They have dreams, and hopes, and feelings. Their very essence is not one of limited capabilities, but instead, endless possibilities!

I can't speak for everyone but in our case, Lydia has brought so much to our lives. I'm afraid that she's already taught me more in the last almost 5 months than I could ever hope to teach her in her entire life! She's taught me patience, strength, determination, and true joy. She has filled our house, and our hearts, with smiles and laughter. She has given me faith in a God that I wasn't even sure I truly believed in any more. She has taught me that every day is a gift, and every accomplishment is worth celebrating. She has taught me to see the world as an amazing place, full of God's wonders. I had forgotten what a beautiful world we live in! She has given me the pure unadulterated joy of gummy smiles, slobbery kisses, and tiny giggles. We never take her anywhere that someone doesn't stop, smile at my gorgeous girl, and strike up a conversation. lol. I think I have talked to more strangers in the last five months than I have my entire life!

She has a personality all her own; sometimes all sunshine, sometimes a tad bit stormy. She is the princess in our house and you best believe she has NO problem letting us know when things aren't being done to her satisfaction. She babbles and coos, and even complains. She loves music, her brothers, cuddles and all the silly things that Mommy and Daddy do to make her smile. :) All in all, she is truly amazing and I could never imagine living the rest of my life without her in it.

So for anyone who might be starting down this path, full of fear and uncertainty, I just have to say that this ride will be the ride of your life. Yes, sometimes it will be filled with difficulties, tears and even pain. But the rewards are greater than any that you could ever imagine! Don't listen to what others tell you. Listen to the calling of your heart! It will never lead you astray!
Lydia has led me down the path less traveled, and I have to say that its worth every single second.... :)


  1. All I can say is this was beautiful! I love posts that just come from the heart :)

  2. Glad to have found your blog via Love Drop. Lydia is completely beautiful. I can't understand people who would abort a baby with DS. So sad. I volunteered with the Special Olympics last year and it was one of the best days of my life. All of the athletes were wonderful. I hope Lydia did well today with her surgery. You're honestly in my thoughts and prayers!


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