Friday, October 28, 2011

What I want you to know...

This whole month, I have been blogging daily for a little campaign called 31 for 21. To help raise awareness about Down syndrome. To tell the facts, open eyes, and show those who read that Fiona is "more alike then different". Not every post has been about Down syndrome. Which is something I feel is very important to do, because not everything in our life is effected by Down syndrome. Actually, very little of our life is effected. If there is anything I want you to know about Down syndrome, its that.

My son has eczema. A skin condition where he breaks out in rashes from dry patches of skin that makes him incredibly itchy. He wakes up numerous times every night, scratching himself bloody. It effects everything from our sleep to our daily activities, because it is sweat induced. We skip play dates at hot playgrounds and have to stay home from the pool when the break outs are really bad. It is a horrible thing to watch your kid go through.

Fiona sleeps through the night. She wakes up with a smile on her face every morning that is incredibly contagious. She isn't in pain. She isn't an inconvenience to us. Its a joy to watch her conquer this sweet life one day at a time.

Yet, no one pities us when I tell them Breiden has eczema. No one pats my back or says they are sorry. Its just eczema. No one aborts over eczema. But honestly, Breiden's eczema is a much bigger deal day to day in our house. That doesn't change that I love him. I don't regret having him or feel inconvenienced by him, because he is my kid. I am here to help him. And same with Fiona.

Its relatively new knowledge that people with Down syndrome can have a fulfilling life. Down syndrome used to be a prison sentence, a life doomed to mental institutions (and sadly, in a lot of countries, its still that way), put there by their families at birth. It wasn't until well into the 1950s that researchers began to notice that the children with Down syndrome raised in their own homes were thriving much better then those put in the recommended institutions. Since then, we continue to learn and see that with extra attention and love, many people with Down syndrome are able to live very fulfilling lives. But yet, that old stereotype of a worthless life remains.

Warning: The worst thing you can do when you feel strongly about something is to read the comment section in an article. From my curiosity on what people think about the new prenatal test, I have learned there are so many people out there who strongly feel that Fiona shouldn't be here. That think I am a bad parent for allowing her to be born. People who do not understand the value she has, and use hurtful words to devalue her.

I came across this quote.
“Neither a man nor a crowd nor a nation can be trusted to act humanely or to think sanely under the influence of a great fear.” Bertrand Russell

The part about acting humanely under fear hit home. We fear what we do not know. And our society, our world, as a whole, does not know Down syndrome. They know outdated sterotypes. No one can be trusted to act humanely who does not know Down syndrome. For my daughters sake, it is so important to me to educate about Down syndrome so that that fear, that inhumaneness, can be eradicated. Knowledge is the only thing that change minds. 

So can I ask you to do me a favor? ( I know, I already asked you to not use the "R" word  for a day, but this favor is even simplier) Can you share my blog, or one of my Designer Gene friend's blogs (on my sidebar) to your friends? Facebook it, twitter it, Pin it, Stumble Upon it, email it. Give the opportunity for people who aren't exposed to the Down syndrome community to learn what it really is. For them to see who the people behind the diagnosis are. I made it nice and simple, all you have to do is click the share button at the top of the page or the share button on the top of my sidebar.

And if you are reading this because you came here from a friends Facebook, and you want to know more about Fiona, click HERE or HERE or HERE or visit one of the many other families I have listed on my sidebar who are example after example of the blessings that come with Down syndrome.


  1. More than happy to share your wonderful blog with my FB friends! So happy for them to meet your beautiful family, and amazing Fiona.

  2. I have a niece that has the same issue with her skin and the backs of her legs get that bad too...i hate seeing her in so much pain.

  3. Shannon,
    Thank you so much for your blog. I have 2 boys (one is 2 yrs and one is 3 months). With 3 kids, I know you must be exhausted sometimes and may not feel like writing. But, you have really helped to open my eyes, adn I really appreciate you and your family.
    I don't really care one way or the other about what your political opinion is, but you may find this interesting - the presidential candidate Rick Santorum talks about his little girl with trisomy 18. I don't know quite how I feel about whether he is 'using' her or not for his political campaign. But, when I hear him talk, I feel like he appreciates/loves/fights for his daughter like you do for yours. The video is here:
    -Lisa C

  4. Poor little fella!! I think my son has it too!

    What a cute little princess you have!

  5. That was a powerful piece -- the writing, juxtaposition of photos and Russell's quote.

    I look forward to reading more.

    I would like to send you a copy of our magazine on parenting kids with disabilities -- BLOOM. Message me your snail-mail address if you'd like to receive it --


  6. My sister-in-law is pregnant with her second and has been reading message boards recently. She is getting herself so worked up because women are going on and on about testing and what to do with the results. She is Hailey's godmother also. She told me how she wants to comment to all of them because she knows how life has been with Hailey and what a blessing she really is. She said she did comment to one and said "it isn't that big of a deal. She is your child." I won't let myself read those comments because i know how irate I would get!

  7. This is a great post. I will pray your blog reaches out there more and more because your writing is so moving. It is through ways like this we can change the world's view on Down syndrome...

    thanks for what you do for our kids.

  8. Love this post! I'm going to steal the "sharing idea" for my next post!
    Oh, and Kennedy forever has her fingers in her mouth too...guess that never changes!


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