I was looking back over some of my posts, and was surprised at how it felt to see my entry for the day before Ian was born. It's just a little video I threw together with some pictures of Silvi.
But what I felt, was, I feel like a horrible dad for even thinking it, but I wanted to feel that way again. You know? Back when things were... "normal."
I don't want an extra chromosome, a "little angel", a "gift from God". I don't want to be a part of a special community. I want to blend in, like everyone else.
And I don't want to have to reassert the fact that I love Ian. Of course I love him... he's my little guy.
Sorry. It's hitting me a bit hard this week. I think I need a trip somewhere sunny.
[Updated: It's an hour later. I should have mentioned that I wrote this post after watching videos on YouTube and being bombarded by juvenile attempts at being funny at the expense of others, like this video. I know, I know. Don't watch them. Too late.]
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I don't know if you read "Meagans Got 47" blog, written by a friend of mine, but I commented to one of her posts about "If there was a magic pill to cure DS, would you do it?"
I would love to be the parent that says I love everything about Down Syndrome. Don't get me wrong, I love Angela to death. She IS my life. I love her DIFFERENTLY than my 4 other kids. But man, if that little pill became available, and it could take away all that Angela has to go through, you can bet I'd be giving it to her!
There are days when I just want that typical 11 year old girl that doesn't need mom to help her navigate some of the social issues that most 11 year olds have down by now. Actually, there are LOTS of days like that.
If Angela didn't have Down Syndrome ever in her life, I certainly wouldn't be who I am today, but I can safely say that I'd like to be done learning some of these lessons. Clearly God has other plans, but some days...man...I wish he'd consult me first.
Tom,
I "found you" on Downsyn, and have been sneaking peeks when I can. You know, it is early yet, and this will pass. It isnt something anyone would hope was thrown their way, unless they were adopting intentionally. It sucks sometimes. But you know what? Feeling like you dont like DS is NOT the same as not liking your CHILD. Not trying to sound mushy or philosophical, but your baby isnt DS he is your son. Seperate from the DS. My daughter is 9, and there are days still, even now, that I wonder what she would be like without it. But now I know that there has been far more good than bad on this journey. You will be ok, I promise. But allow yourself your feelings. You dont have to be a cheerleader for DS, just yet. Go through your motions, and then when you come out the other side, it will feel natural, you will know that it isnt contrived or put on, but comes from the heart, way down deep. But you arent there yet, and thats ok. I think the ones who are most honest about their feelings early on are the ones who end up most staunchly "ok". You will be ok. I promise.
Oh, I know how you feel! I remember how desperately I wanted to feel normal again in the beginning, whatever that was anyway.
But I can tell you that it's gotten easier as Archie's aged. Some days I feel like the most normal person in the world, more normal in fact that people who have normal kids, and normal lives, and normal worries, and normal dreams. But I admit, too, that there are days Archie's diagnosis bothers me still. But those days are few and far between. And I promise one day you'll get here, too.
It looms, sometimes. I had to hit the brakes, on the way home from work today, slid a little bit. Didn't hit the guy in front, shook it off, pulled into the driveway ten minutes later. It could have been different. It could have changed my life.
Our lives have been changed by an act of mitosis, a microscopic act. It's still hard to fathom. It's ok to be pissed, you should be. I recommend it. It means you're feeling the way you should be. Didn't say 'normal'. That's going to be a shifting concept for a while, still is for me.
Some days, ya gotta just do. Time is on your side. Has time changed for you, at all, in this? It just may. Stay Tuned. Stay Honest. At least you were never gonna be the parent of one of those youtube wonders of nature. The world is a rainbow.
Tough Stuff.
Unlike Leah, I really think I wouldn't give Gabi the "magic pill" because I do believe her Down syndrome makes up part of who she is. I love her just the way she is. This of course does not mean you shouldn't have the feelings you do. It's natural to have regrets over something we thought, said or did once or twice back when. I remember the couple days that we had to discuss abortion. Man that's a hard memory to deal with. Although, I don't think I would have done it due to past experiences we did discuss it. It hurts to even think about that.
And as far as the insensitive videos go, I try to keep this in mind. Kids can be really mean, and it doesn't take Down syndrome to make them that way. Kids or adults will always find something in everyone to pick on. For example: my oldest child used to get teased almost daily when he was younger about his weight. Poor kid had terrible asthma and had to be on steriods so often that he really got round. I guarentee you can find You tube videos where countless amounts of people make fun of fat people. Mean people will be mean. And many of them probably don't even think of it as being mean.
Okay, enough rambling from me. I hope that helps.
Yes, DS is part of what makes my daughter who she is. Without the extra chromosome she would not have experienced the things she has. But, she also would not have had 25 major surgeries by the time she was 10 years old either. She would not have spent months in the hospital. She would not feel pain every day of her life (because unfortunately for Angela, she has a lot of physical every day.) If I could give her a pill TODAY, to make life from TODAY onward peffectly typical like it is for her friends at school, absolutely, in a heartbeat, I would do it. If she were the kid with DS who was lucky enough to not have major health issues, I might feel differently.
No you don't have to reassert that you love your son. You don't have to justify him to anyone.
Stop being a part of the Down's Club for a moment and take Ian skateboarding.
Besides - it's your move in Scrabble.
Oh Leah, By no means was I trying to critisize your view and I am sorry it sounded that way. I was just giving my viewpoint. My daughter also had to expeience surgery, but only once. I sympathize with your situation and I apologize for any grief I have caused you. I can certainly understand that point of view, but I was talking about character. I think the very way my Gabi acts and lives has partly to do with her chromosomes. And, I am also I true believer that God made her perfectly just as He wanted her to be. Sometimes, we are put through trials in life to make make us stronger. While it is okay for you to choose this make-believe "magic pill" it is also okay for me to choose not to have it. If that makes any sense. Let's not forget this is only a "what if" scenario. Again, my apologies to you.
(Tom- I have sent this in an email back to Leah, but i also wanted to post it here since I feel I owed Leah a public apology. It wasn't my intentions to sound attacking of her view.)
Leah: I've thought about the "pill" thing, but it's a tough one for me. Understandably. If someone asks, I'm not ready to answer that question I guess... Anyway, based on your blog, everyone can certainly see your love for Angela.
Michelle: Thanks for the thoughtful answer. Some days I have a hard time imagining what being 9 yrs old will look like for Ian. Nice to hear from someone who's been there.
Anne: Here's to that day.. and I appreciate the encouragement.
Elbog: Somedays I feel like I hit the brakes but slammed into the 18-wheeler in front of me with my little Neon.
As far as time changing, I'm having a hard time getting anything done at work, if that counts.
Carole: Few words often speak loudest... thanks, Carole.
Shannon: I read the post you referred to a bit ago; that was courageous to write. Thanks for sharing it.
What's that bumper sticker? "Mean people suck" I think I'll have to get one. Thanks for the kind words.
Kim: Ian's already calling me a wannabe skater...
Leah and Shannon: Thanks for being honest and discussing these things in public; I'm sure I will have many such discussions in the future.
Take care.
Shannon: No hard feelings, only interesting conversation!
I won't say I understand or know. Because I don't.
This I do know. I am ever so grateful for your honesty.
Working with people with DS, it's so easy to sometimes be judgmental towards certain kinds of parents and parenting.
Reading this blog, and the comments on it, is a great reminder of how lucky I am to have the job that I have, but that I also do not have a clue about what it's like to be a parent to a child with DS.
Thanks Tom for your blog, and thanks to the rest of you for your comments.
Me too.
I have tortured myself far too many times by googling every derogatory word for DS that I could come up with, or looking for videos, just to see what terrible things were out there. I do it secretly, when my husband is in bed. I wonder if he has ever gone to type something into google and after typing "Re--" come up with some of the sites in my history. What would he think? What would someone else think? In the middle of the night the other night I got up to google an old cartoon from the 80s that I grew up on and haven't thought of in years because it dawned on me that one of the characters (a decidedly unintelligent overweight cat) was named Mongo. I wondered if this was a derogatory term. If this was intentional.
Sometimes I feel like I have to see all the awful stuff so I am aware. So it doesn't one day totally stop me in my tracks.
And other days. It's not remotely a big deal
Laurie: Good to know there are others who feel that way.
Tricia: I was reading and watching everything on DS until I finally just had to quit and do something else. Then I go back and look again... hate getting tugged in so many directions.
Annie (my wife) is just the opposite, does not want to know. I think we balance each other out.
Or I just drive her nuts..
GIGBS: I would love to hear more about your work... Glad that reading these posts are a positive thing for you.
Isabel: Thanks.
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