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I’ve got your Down syndrome Awareness RIGHT HERE.

So…it’s October. It’s Down syndrome awareness month. Yeah, I know you think that happened in March, but that was just Down syndrome awareness DAY. I know people counted down to it the whole month, but still, October is our month. It’s also breast cancer awareness month, (I’m not capitalizing anything tonight, folks, because shifting sucks), it’s also bully awareness, cyber security awareness, and domestic violence awareness.

Which is interesting because it’s also Octoberfest.

I used to get in on the whole Down syndrome awareness shebang. It’s good stuff. There are great blogs to be read and much to learn. I just don’t have it in me right now. Maybe I will in a week or two, we’ll see. But for now, I’m not all that in love with Down syndrome.

{GASP! Did I just say that?! Yup.}

I feel like in the Down syndrome communities and elsewhere, that we constrain ourselves to only project a beauty, a joy, a love of all things Down syndrome. In our fight for acceptance, I feel like we’ve pushed the pendulum too far the other way. We’ve only spoken about how great Down syndrome is, and how great our kids are, and then get mad when people imply that our kids are all angels. We’ve perpetuated that myth and many others. The truth is, it’s not all fun and games. In fact, it’s really REALLY hard. I have a hard time feeling like I can only speak of Down syndrome in the brightest of lights. I have a hard time when people think I don’t love my daughter as much as my other kids, or as much as they love their child with Down syndrome, because I say it’s hard from time to time. Sugarcoating disability doesn’t help Abby get the services she needs. It doesn’t help people understand that she’s an individual with her own likes, loves, hates and rage.  And it certainly doesn’t help me come to terms with the reality that we’re faced with.

Down syndrome beauty

 

My reality with Abby’s Down syndrome is very different than the realities of other families with the same diagnosis.

I’m in no way saying that people who write positively about Down syndrome are lying or sugarcoating.  I’m saying that if I only wrote glowing reviews of that third chromosome, I would be leaving out the substance of our day to day lives.  I would be whitewashing the truth.

The truth is, having a child (or two) with a disability is hard. I can say that and know that it doesn’t negate for a second how much I love my children. I’d do it all again. In a heartbeat (that still has the most adorable murmur). Abby has taught me a new form of happiness. She’s brought a richness to my life- both in the good and the hard times. I hope to one day be like my friend, Holly. Her status today was this: “I haven’t said anything for Down Syndrome Awareness Month, because I have nothing to say. Brooke is just another member of our family who happens to need extra help on her life journey…we wouldn’t change her for the world.” That to me, is acceptance.

12 thoughts on “I’ve got your Down syndrome Awareness RIGHT HERE.

  1. I love this post and understand it deeply as the mother to a child with autism. A new form of happiness that looks totally different than anyone else, but every day surely ain’t rosey.

  2. Seems like special needs/disability communities have a hard time finding the balance between defending the worth of our loved ones/selves and remembering that we, as advocacy groups, exist for a reason — because those with special needs/disabilities and their families DO struggle and DO need extra consideration/accommodations/awareness. It’s like this in the autism community as well. Autism advocates quite naturally want to remind typicals about the value of those who think differently. But the very real differences in the lives of those who are severely disabled by autism and those who are independently functioning are trivialized. We end up with these extremes of “Rah rah!” and “Down with autism!”. The truth is always somewhere in the middle. Disabilities do suck in some ways. But the people who have them don’t. And the people who don’t have them who can’t act with a little humanity suck too. There’s not a damn thing wrong with saying that. I’m going to say one of those phrases that sometimes annoys people – Abby is lucky to have you. But not because she isn’t as deserving of a great mom as any other child. It’s because she has such an extraordinary example of conscience and bravery to guide her through a life that has a few more challenges than most. You’re doing a great job with your kids, Lexi. And your voice in the special needs community is important and needed. Thanks for saying what needs to be said. 🙂

  3. It’s actually Spina Bifida Awareness Month too. Sheesh– the month of October has overbooked itself!

    I am so with you on this. We can celebrate the people we love who have disabilities, but celebrating the disability itself isn’t always what we’re in the mood for. I find it interesting because each specific disability has its own community and we vary so much in how we talk about it. In the SB world, parents regularly talk about “hating” SB or say things like “Take that, SB!!” when their kids have a breakthrough– I don’t hear many people talking about SB as a blessing and I think if they did I would have a very tough time matching their enthusiasm.

    For SB Awareness Month I took questions on my blog and plan to answer them (if I can get 10 minutes peace at home!) throughout the month. Someone asked “if you could have your son but without Spina Bifida, would you?” And I’m going to have to say yes. Without a second thought– yes. Because it would be dishonest to say anything else.

    Thank you for your honesty here and for talking about the fullness of life with disability– not just the shiny parts.

    1. I’m with you. I call that question “The Impossible Question.” First off, you can’t. You can’t go back. Then if you answer ‘no’ it seems like you want your child to have this disability. If you say ‘yes’ (and that’s my honest answer, too) they will say that you don’t love and accept your child.

      I still stick with honesty though.

  4. Yes. So much yes.

    Side note: October 2nd was World CP Awareness Day but CP month is March. Guess we mixed it up with the DS folks.

    I like this post very much. Very much indeed.

    You wrote about awareness without writing about awareness. Sneaky or brilliant? I say both.

  5. I love your honesty! Ds ( or any other disability ) is not always rainbows and unicorns. I’m glad you are brave enough to put it out there. My daughter is 10 and has Ds, quite frankly she’s a brat and strong willed, I wouldn’t change her for the world but it does make some days a struggle!

  6. Got 1/4 of the way through your post before I abandoned it and felt the need to respond. The only thing I HATE more than Down syndrome is autism. There, I said it. As a non-famous blogger, as someone who means NOTHING to either community, I still have the luxury of speaking my mind without receiving a mountain of criticism.

    You don’t know who I am. Why? Because if this was high school, you’re the head cheerleader with the quarterback boyfriend. I’M the girl in Telecommunications who runs the teleprompter for the morning announcements. But, that doesn’t change the fact that I have a son with both Down syndrome and autism. And now, an anomoly of Chromosome 4 that no geneticist has ever seen before. (Lucky us!)

    I don’t care about Down Syndrome Month. I don’t care about Down Syndrome Day. All I care about is getting through the day. I’m sick of my son being ‘an anomoly that, in the history of the world, they’ve never seen before.’ I don’t remember signing up for this. And yet, here we are! I love my son beyond belief, which is the reason that he sees world-renowned specialists, but I don’t need a Down Syndrome Month. Please, I LIVE IT EVERY DAY!!! And it ain’t pretty. And if I hear another person say “Ohhhhh, but they’re so happy!” . . . Yeah, you know the deal. So yeah, lucky us. I’m just soooo grateful that my son has Hashimoto’s Thyroiditis, Celiac Disease, constant constipation, an increased risk of Alzheimer’s. It’s AWESOME. “Wouldn’t trade it for the world!”, right? Isn’t that what we’re SUPPOSED to say?

  7. I work with some kids with Down syndrome right now, which I know is definitely not the same thing as parenting, but what I’m saying is, I can certainly see that it is challenging, and even sucky sometimes. I know every kid is different, but I’ve also known A LOT of kids with Down syndrome who are very stubborn and can be just as difficult as they are sweet… plus Down syndrome comes with it’s own set of physical and medical problems to be aware of and deal with. Probably people want to blog and talk about how awesome it is, to counteract other people thinking that it is so hard. It is sort of like, how, I can talk about what an asshole my brother can be, but punch out anyone else who talks badly about him!

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