Hmmmmmm, I have been drawn to write lately with no firm focus so I'm anxious to see where this blog takes me...
Today, my son reached out to me with his chubby little popeye arms, a gleam in his big brown eyes and a smile that stretched for miles when he heard my voice...
Yesterday, he effortlessly rolled over onto his belly and began babbling dadadadadadadadada, blablablablablabla...
Most recently, he is feeding himself a cookie, and when I sign "eat," his mouth opens wide, waiting for me to feed him.
Even the slightest mention of his daddy's name and his eyebrows perk up and his eyes begin to widen...hear his daddy's voice, forget about it...he squeals with laughter.
My son loves kisses on his neck...he anticipates each one with such delight in his eyes.
Now I'm not bragging here (well, maybe a little
). I'm trying to make a point...
I was on a board earlier today where someone was responding to a new mother of a baby with Down Syndrome. This mom was scared, overwhelmed, skeptical, and everything else you would expect from someone who just got the shock of their life handed to them on a platter. She was looking for support, validation that her feelings were normal, and a glimpse of hope that life will eventually get better. The respondent was someone who doesn't frequent the board, only had 3 or 4 posts in a year, but decided to come in and respond to this new mom. Ever since reading her post, I have been sick, literally. Let me weigh in on it...
She has a child over a year old with DS...if she could go back, she would go back, have an amnio, and abort her child...she wouldn't of had the child.
She thinks that her family and friends are talking behind her back thinking they better get an amnio, because OMG!!! Look what happened to her!!!
Her life after the baby has been in her words, "hell," and the consumer has obviously spoken about their feelings of bringing a disabled child into the world because 80-90% abort when they find out prenatally. That is why doctors are so negative toward kids with DS because they see what we as parents must go through...
**DEEP BREATH**
This is what someone chose to tell the new mom...I read it over and over to make sure I wasn't missing something...like I'm reading this wrong, but no...it's made me unsettled ever since. The comments I read got me to thinking about how little new life is valued in society today unless it's a "perfect" life. But who determines what it means to be "perfect"...Why is the abortion rate so high when there is an imminent dx of a defect/disability? And what is going to happen when a dx can be determined earlier in pregnancy? The percentage is bound to go up. IMHO, it all has to do with education. The perception of DS is grim, negative, scary...but that is because we are uneducated. Most doctors haven't a clue...they are as uneducated about DS as the average Joe...With DS, yes, there can be health issues, cognitive delays, developmental delays, etc., but as with everything else, there is a range, and there is no way to tell in an amnio where they will fall until they begin living their lives. So who are we to play God. Because they aren't "perfect," they aren't worth as much or don't deserve as much as the rest of us "normal," (LOL!!!!
) people. I know this is an exaggerated example but when my daughter was 18 months old, we found out she was farsighted and would need to wear glasses until she could afford laser eye surgery
...is her life worth less now? Has she dropped down from the "picture perfect" category? Or how about this...one woman I talked to was told by her doctor that she was an irresponsible parent for knowingly bringing a child with DS into the world after testing positive on her amnio...so tell me this...My family has the "alcoholic" gene floating around...am I an irresponsible parent for knowingly bringing two children into the world who could possibly become alcoholics later in life? Or even this...my stepdaughter entered a world where her parents will never be together. She has to be shuffled back and forth between her mom and dad and deal with part-time siblings who share her dad's attention. Is her life worth less because it's harder? The whole issue is idiotic. Where do we draw the line? We cannot predict the future...we don't know how any of our children will turn out. We can only be the best parents we know how and hope for the best.
We didn't have a prenatal dx...and when we found out our son had Down Syndrome, it was one of the scariest moments of my life. I do not believe in abortion, so it didn't really matter WHEN we found out, but the feelings I had along with the misconceptions I had of what DS was, I have to think that if we did find out prenatally, terminating the pregnancy at the very least would have entered my mind. Why? Because I didn't have a clue, and I was SCARED OUT OF MY MIND! If doctors are as clueless as I was, no wonder the termination rate is so high...we look for information from our doctors and we expect them to give us all options and current and unbiased information. That is not reality as we know it...this needs to change. If earlier, more accurate tests are going to be given prenatally, then both sides of the coin need to be addressed so that people can make informed choices, not desperate choices.
So I began this blog with the end in mind...
I began this blog bragging on my son...who has Down Syndrome, who has a heart defect that was repaired and is good as new, who goes to Physical Therapy, who has a few more doctors appointments than his sister, who, who, who...who makes my heart smile through every ounce of my being...simply perfect. If I had to go back and do it all over again, I wouldn't change one hair on my son's body...he is my boy...my perfect boy...