Thursday, May 28, 2009

20. A New Journey Begins

Hi again everyone. I haven't posted in awhile, but there's a good reason this time, and most of you already know about it. Last weekend I launched Down Town (, a Down syndrome news and information site that I hope will grow into a huge and wonderful resource. I've been working quietly on the site for months, along with an animation that explains Down syndrome to children. I'm proud to say it's up and running nicely. It's my first real step out into the DS community, and surely Neil Armstrong never felt such exhilaration.

I haven't had all that much to write about lately. Ozzie was in the hospital briefly for some congestion/breathing issues, but you don't want to hear about that. You want observations, and I haven't had any to share for awhile. Until today.

My site has a cool feature called BlogWatch. It automatically scans other people's blogs for any new posts that mention Down syndrome. When it finds them, it feeds them right onto my site. So it's a nice snapshot of the latest DS discussions and a great way to find new DS blogs. Anyway, since Down Town launched I've been reading those posts, and today while doing that I realized something about myself.

Although most of the posts are written by parents of children with Down syndrome, many fall under an entirely different category. These are posts written by pregnant women who have just received test results that indicate they may be carrying a child with Down syndrome. This news is quite understandably terrifying and heartbreaking and stressful, and these women share it on their blogs (usually after additional tests show that the baby is just fine). Then these women and their friends and families post all kinds of comments:

Oh, what a scare we had.

It was the worst day of our lives.

Surely everything will be fine - the odds are in our favor. Not that we would have considered abortion...

These blog posts cut deep. It's just so hard to read the musings of people who are ecstatic about dodging the life I now have. Odds are, almost all of these people will have healthy babies. And they won't ever really think about Down syndrome again. They will look at my family – and my child – with pity. They will see my family and remember their little scare and they will feel relief.

I think I have handled the whole DS situation rather well. I love Ozzie, I'm happy to have him, and I don't sit and long for the child I don't have. I have never, ever been jealous of anyone else's baby. But this particular category of blog posts, the "relieved mom-to-be," causes some really rotten feelings in my gut. Not jealousy, but anger. I feel like these people have no right to even talk about this world. They haven't gone through boot camp. And I know these feelings are wrong, and I know this is something I have to work through and get past and leave behind forever. But it isn't easy.

So, to all you mothers-to-be out there who are afraid you may be carrying an Ozzie of your own, my heart goes out to you. I know your blog posts aren't even meant for my eyes. I hope your baby is healthy and perfect and beautiful. But I do have one small request. When you find out that your baby is perfect, could you please express your elation in a way that doesn't take a shit on my life? You work on that, and I'll work on my anger issues.


Visit Watch my animation. Tell your friends about my site.


Tristen said...

Hey, nice website! If you need any help with it, I'm here.

As for little Ozzie, give him a smile from me ;)

Lisa said...

Wow, I am so with you on this. Actually, I have something that hits a bit closer to home: when I was pregnant with Finn, another mom I know through my MOMS Club was also pregnant. Midway through her pregnancy, she had a routine ultrasound that showed soft markers for Ds (I think it was brain cysts). She was devastated. She had further testing done which showed her baby to be completely healthy and "normal" and I remember that she was so relieved. I didn't find out about Finn's Ds until after his birth. Now, when I run into this mom, I feel angry because I imagine (and maybe wrongly) that she must be thinking "You poor thing . . . thank goodness it wasn't me."

Michelle said...

just came across your blog and am looking forward to checking out your website.

A couple years ago I used to frequently post on a couple message boards...of course the inevitable would happen and women would go through prenatal testing and get a higher risk result and have fears and questions etc. I would chime in and do my best to reassure them life wasn't so bad w/a child w/Ds, even knowing that follow-up test would most likely not indicate Ds - and it very rarely did.

So I remember on those follow up posts when they would express elation at 'normal' test results and everything was 'fine' and baby was 'healthy' and I remember feeling like I didn't know what to post in response. Was I supposed to comment like everyone else and say 'congrats on good results!" 'congrats your baby doesn't have Ds!" "congrats everything is fine!" that felt "wrong" to me somehow - like I was saying "congrats your baby isn't like mine!" and I couldn't bring myself to do that. So most of the time I just never responded.

Sorry for the long comment, your post just reminded me of that time (I've since stopped visiting message boards) :)

Ria said...

Hi Dan! Thanks for visiting my blog.

I love my life with Matthew and I can't see it any other way. It is unfortunate that many still look upon individuals with Down syndrome and their families with pity. They just don't know. If I had not had Matthew (19 months old now), I would probably also have a hard time understanding what life is like... I don't think I'd feel pity, I just wouldn't know what to say. It's always hard to understand something when you're just a mere spectator on the outside looking in. And we can't expect them to totally understand, but we can enlighten and show those who are in the dark that individuals with Down syndrome do not need pity. They need love and respect just like everybody else.

As for parents finding out that their baby has DS either prenatally or after birth, I would like to think that we and others that have left their footprints before us can succeed in supporting them and guiding them. But we have to remember, it is their journey to take. I wrote about my initial feelings too in Another Baby After A Child With Down Syndrome on my blog.
Have a great day!
Ria from Bill and Ria

My name is Sarah said...

This is Joyce. My daughter Sarah and I reguarly blog about life as a teenager. I found your blog through Lisa and wish yuo luck with your new venture. I will add you to your blogroll.

Tara said...

I agree with Michelle. I'm on the Ds and Ds pregnancy boards on babycenter. Invariably, someone will visit the Ds board while awaiting amnio results and then post when the test comes out negative. Everyone congratulates her, etc. One of these days I'm going to post that I'm sorry...sorry that you are now condemned to a regular life, sorry that you won't experience joy and pride on such an extreme scale, sorry that you will never form relationships with the amazing people in the community of Ds, but mostly, sorry that you are so relieved that your life will in no way resemble mine...because my life is pretty dang great!

The Wizard said...

Wow everyone, these are AMAZING comments. I was almost a little worried about posting this entry. It's a little more aggressive than my other posts, and I was worried that I could sound like a real jerk. Obviously I didn't - obviously I touched a nerve with everyone. It's so wonderful to hear from all of you and to know that my experience isn't unique. Thank you all so much.


Laurie said...

I love love love your website. I have a 2 year old son with Ds and I coordinate the birth-3 Ds group in Charlotte, NC. I just forwarded your link to my group. Hoping you get lots of traffic.

Anonymous said...

I wish I had found your blog sooner! I saw it posted on Jennifer's blog, "Pinwheels". Oz is beautiful. I think you're a positive and powerful advocate for the Ds community!

Adrienne said...

I can relate to this post as well- we just had our baby boy and I found out about him having DS when I was 18 weeks. It is hard to hear these women that are so relieved to not have the life that I now have. I saw that you lived in Durham- I just moved from Wake Forest/Raleigh 7 months ago and we miss it terribly!

Anonymous said...

As a mother, I can understand a mom-to-be having that "dodged that bullet" response, as a grandmother, Ozzie's grandmother, I feel so sad that our society does not embrace every baby, no matter the disability. I know that I am preaching to the choir here, but those of us who have children have been so blessed, it just amazes me that anyone would choose to end a pregnancy just because of some sort of imperfection, be it physical or mental. I really do not know the proper response in this case, but I do know what our reality is. We have Ozzie, a darling little boy who has wonderful parents, a sister who adores him, a whole family of aunts, uncles, cousins, he is just as vital to our family as any child could ever be.

Let us all pass the word around, that just because the word has been given that a baby will not be born with a disablity, remember, an accident at any time in a child's life could cause a disabity. Now, would you love your child any less because of it? Would you want to get rid of him or her because they are no longer perfect in your eyes, or would you love and treasure them just the way they are, would you do your very best to secure their future and teach them everything they could possibly learn?

I pray that we can all reassure expectant parents and new parents with babies who have disablilites, life is still good, you still have a child with which to share your life, you will smile again. God bless all of you who have Ozzie's of your own, you may not yet realize it, but God has smiled down on you.

Amy Niblock

Chrystal said...

"When you find out that your baby is perfect, could you please express your elation in a way that doesn't take a shit on my life?"


I've seen this so many times. The "Yay!" and "Thank, God!" and "Congratulations!" and "Our baby is normal and perfect in every way."

I'm glad that things are working out the way they wanted, sure, but don't be so cocky to think that nothing can ever happen to you that's not in your perfect little plan.

BTW, my kid effin' rocks.

{/bitter rant]

Leah said...

Cool site. You've done a great job. And, since I'm just finding your blog, a belated welcome to the DS community. My daughter Angela turned 13 this morning. I can't believe it. We've been through a lot, and she is an amazing girl, and I'm a totally different person for it.

Maggie Mae said...

WOW! I must say, had we all dodged that bullet we might not be so indignant about another mother's elation. I can't say I wish my daughter who doesn't have DS had it. But, I sure wouldn't change a thing about my boys who do have it... NOT A THING! Or, they wouldn't be them. Glorious boys that they are! And, they are nothing short of remarkable, miraculous, amazing and the loves of my life. So, to all those mothers who celebrate the "no-DS" news I say, "I may not be in your Rome... But, I'm not in Holland either. I'm in paradise... This is My Eden and you can't get here from there!"

I'm a proud member of a club I didn't know I would be desperately happy to belong to.

Thanks for the honesty! Even your FAQs are accurate... a rare thing when the non-DS-blessed world reports the "facts" about Down syndrome.

Maggie Mae said...

BTW - on the topic of "perfect"... every parent who celebrates the "clean" test results should read the post on about "Normal Syndrome". you won't catch me saying there's no such thing as perfect... I have two little boys who are absolutely perfect just the way they are... extra 21st chromosome and all. But, God help all us imperfect parents.

Dawn Taulli said...

So thankful I found your website. Thank you for calling it like it really is. I'm a brand new mom to to Alex who is still in the hospital 2 months later with respiratory complications. I'm just learning about the whole DS world and learning how to handle the various questions. It is so hard to deal with the shocked look and silence when you first tell someone. I hope this gets easier!

Dawn Taulli

DownTownDan said...

Hi Dawn - sorry to hear about your situation. It does get easier, but it doesn't get easy. At least, it hasn't yet for me. But I'm still new to this whole scene. I think, with time, everyone learns to handle it.