Sunday, October 23, 2011

31 for 21: Day 22

My Angry Down Syndrome Awareness Post.
Hooray folks, it's my annual angry post. Get ready, get ready, get ready ready ready.
Some background information. My brother in law (who, at this point, I don't think is dead to me...I'm not sure. I need to keep some sort of file on that) posted this article on our family site:
Down syndrome's rewards touted as new test looms (by Kimberly Hayes Taylor for MSNBC)
Please read the entire article. It's short, it's very well written and I really couldn't have said it better. If you're still unconvinced or too lazy, I'll highlight my favorite parts (I've emphasized the words in bold, not the author of the article):
The article talks about a survey done by by Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital, Boston. It suggests that
"...the reality of Down syndrome is positive for the vast majority of parents, siblings and people with Down syndrome themselves
Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome
Skotko also found that among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome. A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked. "
The article then goes on to talk about the new blood test that can tell you whether or not your child has Down syndrome that will be out in a few months. No longer are women going to have to do an invasive amniocentesis to get these results. The fear of miscarrying a "normal" baby because of the test to see if it does have Down syndrome is now gone. A blood test. At this point, studies show that up to 90% of women who do find out that their baby has Down syndrome prenatally choose to abort. 90 PER CENT! I wonder how many more will now abort because they will find out for sure from a blood test, rather than chance it with an amnio.
I'm not here to talk about the right to life, the legality. Currently, women in our country have the freedom to choose whether or not they want to terminate their pregnancies up to a certain, albeit very late, point in their pregnancy. Since Roe v. Wade, no Pro-life president, congress, etc has been able stop this from happening. I'm not going to try to convince anyone about the legality of abortion either way. For now it's a choice.
I want to talk about that choice. Aborting a child because he or she has Down syndrome is the WRONG CHOICE. Believe me, I've heard every argument under the sun as to why it should be "okay" for women to make this choice. Why, even, we should mourn with them over the "loss" of their child. They did not lose their child. They chose. I'm sick of people treating this issue like it's not black or white. It is. That baby that you carried did not have a disease or another physical or chromosomal abnormality that was incompatible with life. And a good life at that. Look at the statistics! Here are some of the reasons I've heard (also why I've decided to stay off debate forums):
{Not every parent is equipped to have a child with special needs. Just because you can do it, doesn't mean everyone can.}
If you had asked me 7 years ago if I would be able to handle ONE child with special needs, I don't know if I would have said yes. I now have two children with special needs. I wasn't the person I am now going into this. I wasn't given these kids because I was strong, patient or even willing. I was given these children to make me strong, patient and willing. I'm not there yet. If someone like me, someone who is scatter-brained and inherently selfish, can do okay raising two kids with special needs, you can do it with one.
What would happen if your child was diagnosed later with autism? Would you be able to handle it then? In MY (and this is only my experience, I do not speak for anyone else on this) autism is MUCH, MUCH harder. Thank heavens there isn't a genetic test for that. Your chances of having a child diagnosed with autism are six times greater than having one diagnosed with Down syndrome.
{I don't want my child to suffer}
This one probably chaps me the most. My child does not suffer from Down syndrome. Again, the statistic from above: " A third study evaluating how adults with Down syndrome felt about themselves reports 99 percent responded they were happy with their lives, 97 percent liked who they are, and 96 percent liked how they looked." How many people WITHOUT Down syndrome would say that they were happy with their lives, liked who they are and how they looked? Not as many as these kids! Sure, Abby has health issues. But most of the time, she's fine. And even when she's sick, she's happy. Case in point:

This was in the emergency room at Marybridge Hospital in Tacoma, Washington. She hadn't slept and she couldn't eat because of her breathing. You could hear the rattle from her airways from down the hall. But does she look like she's suffering?
And if you don't want your kids to suffer, you shouldn't have kids. Period. Every kid is going to get sick. Maybe not hospital sick, but they're going to get sick. They're going to have sadness. They're going to experience loss. This is the nature of life. Not of disability.
{ It's the nature of existence, we want close to perfection. Animals will toss aside offspring that have deformities, it helps species survive}

This statement (and it really did come from a human being) should make you taste bile. Becoming a parent is not dependent upon having a perfect child! We, as a society, need to get this out of our heads. Becoming a parent means that we are GIVING LIFE to a child. Taking that child and helping them to do the best they can in whatever sphere that might be.
Because that's what life is about, right? Doing the best with what we are given. What is our goal as a parent? Is it to have a child that is happy? This is what I've learned with Casey and am learning with Abby. I mourned the loss of MY intended vision for Casey's life. I was sad that it wouldn't be the way that I had planned. But this IS NOT ABOUT ME. It's about Casey. It's about Abby. It's about them having a happy, successful life. About them being the best that THEY can be.
If you're having a child to fill a personal need outside from bringing a child into this world so that THEY can have a happy, successful life, you may need re-evaluate your motives. This is not about you. If you just can't wait to brag to your friends all of the things your child has accomplished instead of whether or not they are happy and fulfilled and doing their best, you need to reassess your values. Again, having a child is not about you.
We are not animals. We do not need to kill off our imperfect offspring in order to further the species.
{I heard about a women who was walking out of a grocery store with her daughter who has Down syndrome. Another lady stopped her and asked her why she chose to keep a baby that was only a drain on society. That SHE should not have to pay more taxes because this mother chose to keep her 'defect' of a baby.}

I don't know what I would have done if I were this mother. I probably would have ended up in jail with an assault charge. Or worse. It brings to mind another individual that sought to eradicate a group of people because he thought that these people had no worth. Who was that man? What did he believe?
Down syndrome to some is something that should be eradicated. That some people would be more than happy to see go away. Not because {all} of these people are evil Nazis. They just don't know. They are misguided in their beliefs that life would suck if they had a child with Down syndrome. For everyone. They are wrong and need to know that having a child with Down syndrome makes life sweeter for EVERYONE. I have the numbers to prove it. Having a child with, a sibling with, or even having Down syndrome yourself is a BLESSING. It makes life richer. I am a lucky mom to have Abby. Abby is my happy.
I know because of the demographic of the readers of this blog, I'm preaching to the choir. But I want more. To me, that's what Down syndrome Awareness Month is REALLY about. It's not just about raising money for services that help those with Down syndrome, it's about telling that 90% of women who would choose to abort to think a little bit harder about it. To show people that having a child with Down syndrome makes life BETTER. To show them that they are wrong in thinking anything else but this.
It's what I want this blog to be about. To show people that life goes on after having a child diagnosed with a disability. And then another. That you don't have to be rich, fully sane, or completely devoid of bad habits to have children with special needs. That it's hard, but that it's so good. That if you let this life have a chance, you'll be blessed, and everyone around you will be blessed, too. That you'll become a better, stronger, (faster?) person than you ever thought you could be. I'm not here to say that it's easy. That's why I tell the truth about the good and the bad days we have with Down syndrome (and autism). But I hope you can see that I love my life so much. That I'm grateful for these gifts I have been given. It's like the old man in the wheelchair said to me a couple of Sundays ago:
"Children with Down syndrome are a gift. Don't let nobody tell you otherwise"
If you are someone struggling with the decision as to whether or not to terminate your pregnancy because of a Down syndrome diagnosis, I pray that you will remember these statistics. Also know that there are MANY MANY families out there waiting to adopt a baby WITH Down syndrome. There are waiting lists for this! I didn't plan on having a child with Down syndrome, but if the opportunity came up again to have another with Down syndrome, knowing everything I know, having gone through everything that we have, I'd do it again. In a heartbeat. In fact, I know a bunch of parents of children with Down syndrome who have adopted or hope to adopt another in the future. It's because children with Down syndrome bring such happiness and such love to your life that you want more of it. These kids make life HAPPY. I promise. You are lucky to have been chosen to have this kind of joy in your life.

1 comment:

Jenny H said...

Well said! Thanks for sharing. Blessings!