Monday, September 26, 2011

Buddy Walk with us

In possibly just a few short months, the medical world will be introducing something new. A blood test. A simple little blood draw with zero side effects that will be able to indefinitely tell an expectant mother if her baby has Down syndrome as early as 10 weeks into the pregnancy. Before some women even tell anyone they are pregnant. Before they feel the baby kick. Before they see anything other then the little flicker of the baby's heart beat on an ultrasound. Medical science is amazing. And I wish I could have done this instead of the painful, risky Amnio I went through. But I am scared how many women will use this easy access to information.

9 out of 10 Americans abort with a prenatal Down syndrome diagnosis. A statistic I have brought up before. Its a heartbreaking number to me because I remember clearly everything that was said and pushed on me even before they had even confirmed Fiona had the extra chromosome. A picture was painted through the doctors words and actions of a tragedy, almost referring to the baby as if she was dead... because they expected me to cut off her life. They were ready to put their arms around me and walk me through an abortion. Because my daughter had Down syndrome. And 9 out of 10 would abort her. And if it wasn't for my own personal stance against abortion in any situation, I may have considered it, what with all the ignorant perception I was being given.

A survey* was sent out to 4,000 something families that had a family member with Down syndrome who belong to one of the many different organizations, such as NDSS, that offer support. They asked questions to the parents like, do you love your child? Has your child made a positive impact on your life? Are you ashamed of your child? Do you regret having your child? .... They asked the siblings similar questions, questions about the impact of having a sibling with Down syndrome. Overwhelmingly, people responded that their Down syndrome family member is loved, has bettered their life, and only a measly 1 percent saying that they regretted having their child with Down syndrome.

Now the poll might be bias since it was sent to families who belonged to Down syndrome groups, and therefore, to people who have attempted to better their child's life, but I am pretty sure if you sent out a similar poll to typical children's parents, the numbers would be the same.

What really got me, was the responses people with Down syndrome had.

  • 99 percent said they were happy with their lives

  • 97 percent liked who they are

  • 96 percent liked how they look

  • 86 percent indicated they could make friends easily

  • A measly 4 percent said they were sad and depressed. 1 in 20 Americans are depressed, only 1 in 25 of these people with Down syndrome surveyed claimed to be sad. Yet parents make the decision that their baby, developing with an extra chromosome, is not worthy.

    Poor quality of life is often a big factor in why people view Down syndrome as a bad thing. But what defines a poor quality of life?

    I once heard someone said that they couldn't be happy about their pregnancy until the test results showed that the baby did not have anything wrong with it. Before that baby has even breathed its first breath, that parent was telling it it had to be perfected to be loved. That parent was also indirectly saying to me, your child is not worth life in my eyes. What they choose to say out loud, though, was that they are not as strong as someone like me to handle a special needs child.  This is a concept I just can't wrap my head around. To me if you can not handle anything that comes with having a child, you should not have any children period. Because being a parent is not about you. Its not about bettering your life, or making a picture perfect family. Its about making the best life possible for the child, through all the hurdles that will be put in front of them no matter how difficult. Yes, you will break down and it will be hard, but you do it. Not because you are a super human, but because you love your kid. Someone who has done nothing wrong other then be created with an extra chromosome and has oodles of love and potential waiting to be stirred.

    I don't consider my daughter to have a poor quality of life. She wakes up smiling every morning, and her smile is that kind of smile that comes from so deep within, it takes over her whole body. She is the apple of her fathers eye and has her brothers (who see her nothing other then their baby sister) wrapped around their finger. They let her hit them and pull on them and drool on them and they just smile and tell her shes cute. Not because I tell them to, its their natural instinct to love her. She is a fighter, who has overcome more in her one year then some do by the time they are twenty. She lives for bacon, brownies, and black beans. She attacks her dolls with kisses, snuggles deep into my chest, and thinks her brothers are hysterical. She has the potential to walk and dance and run. She has then potential to graduate from high school, to possibly attend college. She has the potential to have a job. She has the potential to create art or play a sport. But its not so much what she will or wont do. Its the impact she has already made on our lives and the impact she will make in others that shows me she has quality. Good quality.

    Aborting a baby because of a Down syndrome diagnosis is aborting on a chance. The chance that the child is severely handicapped. What they don't tell you as you are sitting in the doctors office, being handed pictures of chromosome structures, is how small of a chance that is. Less then a third. The majority of people with Down syndrome are high functioning, active, happy, contributing members of our society. The majority may not make a lot of money, they may need extra help, but they have a positive impact on those around them. Having a child is taking a chance. The chance that at any point on any day, you could lose them. At any point, on any day, they could become disabled. At any point on any day, they could cause you pain, disappoint you, make life hard for you, frustrate you, embarrass you. 9 out of 10 ignorantly assume that they can escape all this by not having a child with Down syndrome. Or more, they ignorantly assume that this is what having a child with Down syndrome is like.

    I know I am still new in this journey. That there are a lot of hurdles yet to come with education and health and working and independence. But I know what I once thought about Down syndrome- I know what I was once told about Down syndrome, and its not that way. Its not that way for my 1 year old, and its not that way for the majority of other people varying in ages I have met. Abortion, to me, is always selfish and wrong. And I know that my own beliefs won't necessarily change anyones mind. But the issue that is so disheartening to me, is that people are a lot of the times ignorant about aborting a special needs child. That doctors encourage it. That people are judging their baby before they ever even meet them. They are not aborting because they don't want to have a baby, they are aborting because they don't want to have that baby. And now that they will be able to find out with a routine test before they ever even feel the baby, that ignorant decision will be easier to make.

    October is National Down Syndrome Awareness Month. And with that, its also Buddy Walk time. Our local Buddy Walk is being held on October 22, but all September and October, Buddy Walks are being held all over the country. It is encouraging for me to see our community come together like this. Families and friends that are out to celebrate the extra chromosome. I struggle with the Reece's Rainbow's slogan- " Because every family deserves the blessing of a child with Down syndrome" I get where they are going with it, because they are trying to find homes for kids that already have Down syndrome. But while it is a blessing in some aspects, it is a disorder. It does make life more difficult. If I could, and I do, I ask God that no one else be born with it. Wait, let me correct that, let no one else be conceived with it. But Down syndrome is not the end of the world. People who have it are still people worth being celebrated. People worth being here. And the Buddy Walk is a great way to acknowledge that. I encourage you to attend your community Buddy Walk, whether you personally know someone with Down syndrome or not. See past the myth that worth only lies in perfection.

    To find your local Buddy Walk visit HERE

    And to get involved in our local buddy walk and walk with us for Fiona, email me at

    *information on the poll given to Down syndrome families was taken from HERE*


    1. our daughters are going to take over the world...

    2. Here's hoping these blood tests can be used so that people can be prepared and educate themselves, as opposed to the alternative. Otherwise I see no need for them. The world needs to be diverse and anything else would be boring! Yay for Fiona and all the beautiful children with that extra something special!!!!

    3. Very well said. A world without Down syndrome would be a very sad world...Fiona is so beautiful...and just like my Kayla, she rocks her extra chromosome! hugs!

    4. new follower :)

      your children are so beautiful!

      i look forward to learning more about mosaic down syndrome by reading your blog. i follow kelle from enjoying the small things, and have learned some there. you have a beautiful, touching story from what i have read so far :)

    5. Beautiful.

      My best friend who is pregnant told me she was doing all the prenatal testing and if something is wrong with the baby she will most likely abort...Its a kick in the stomach...I agree with everything you wrote in here...If you want the "perfect" child and have a certain vision and idea your child must fit into...Well maybe you shouldn't have kids at all!

    6. I read this post yesterday and talked with my husband about it last night.

      We are expecting out second child, still very early in the pregnancy.

      I got the info for prenatal testing from my midwife yesterday.

      Just as we had with our first, we talked about what testing we wanted, and what we wanted out of the testing.

      We certainly want to know if our child has a neural tube defect or chromosomal abnormality- not so we can abort it, but so we can prepare ourselves and our caregivers for a child's arrival.

      I cannot fathom hearing the news that your unborn child has Down Syndrome. I cannot fathom aborting your unborn child because it has Down Syndrome.

      Thanks for sharing this info. Hearing the responses of people living with Down Syndrome really helped to give us a healthy perspective.


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