Monday, September 10, 2007

Twenty-one percent

Ian is finally off of oxygen and is breathing room air. "Twenty-one percent", as they say in hospital lingo, which is what we all breath. We're still not sure if that means coming home this week, but that is what we're hoping for. All the trips to the hospital has been a bit taxing, especially for Silvi. I'm back at work today. It's hard. I know that most people don't know what to say. I don't. I just can't stand to hear about how "happy" Down Syndrome children are, or about "God's perfect plan", etc. I just want to sit next to Ian and read to him. It's safer there. I don't want to face the real world; the looks of pity; the endless suggestions for "maximizing Ian's potential;" the "extra special gift" that Ian has for us. That all may be true. I'm just not there yet.

I wish that Annie, Silvi, Ian and I could crawl into one of those inflatable bouncy castles and hide from the world.

11 comments:

rebecca said...

Ah yes, those famous stereotypes, um no not comforting at all. I completely understand. The problem is that people, even in their best intentions, just don't know what to say. It isn't because they mean to sound redundant, or even offensive, but they often insert their foot in their mouth before ever realizing how it feels hearing this sort of thing.

I remember once when my little Miss E still had a ng tube in her nose and the visiting nurses came once a week to change it. One afternoon one of the nurses picked her up gleefully announcing, "these babies they are just so musical". I wasn't in the best mood and didn't like the notion of my child as a french horn or a violin so I said, "really how?" with a sarcastic tone in my voice. She didn't get it, and went on to discuss her thoughts about how.

Ack. It isn't comforting at all to hear all those really positive mushy sort of comforting thoughts when you have a baby in the hospital struggling since his or her entry into the world.

It gets better. Soon you will learn how to tone out those annoyances. Soon the sheer joy and beauty of your child's life will far surpass any naïve remarks others care to share with you. You and your wife have just embarked on a new journey, there will be ups and downs, highs and lows, and all the middle ground in between just as there is in any new experience.

Give yourself some time. I know it's hard. I've been there, but it does get better...I promise it does.

Just enjoy that baby. Don’t worry about the other stuff now. In time, you will be amazed at how much you will learn in such a short period. You and your wife will be amazing advocates in no time.

I’m glad to hear he is doing well with his oxygen sats.

Hooray for Ian!

Leah said...

It's a long road, no doubt about it. You're right, there will be stares, but they will be stares of "Omg, look at that adorable kid!"

The only looks of "pity" that you will get will be from those who don't "get" what a joy your child is.

I don't know about the always happy thing. My daughter Angela is 11 (www.gardenofeagan.blogspot.com) and she knows every swear word in the book. In fact, she just got sent to her room for calling me a b****. I would love to see that "happy all the time" part of the syndrome. Really, I would.

What I do see is a kid who can read others better than anyone I know. I see a kid with an amazing sense of humor. I see a tween who is torn between playing with her dolls and flirting with the cute boy in her class.

It takes time to get over the fact that the child you expected didn't arrived. You just got thrown into a club who's membership you didn't sign up for, and in fact didn't want. You're grappling with the fact you have to do this and you really don't want to. That isn't fair play for God to do that, is it? Just give you something like this to deal with that you didn't want?

Time....it's a matter of time. Hang in there. Remember, he was Ian before he took his first breath. He's the same baby you talked to through the walls of your wife's belly. He carried with him a secret, one that you weren't ready for but he knew all along. I don't know if you believe in God or not, but remember that God knew of Ian's existence before he was ever conceived. He was created for reasons not yet known to you and me. But I can tell you this...one of those reasons is to change you. You can feel it already, can't you? You're not the same person you were 10 minutes before he was born. Look in your heart and soul. What has changed? You might not be able to see or feel the change yet (but you're an intelligent person, I bet you can.) but in time you will.

I had to go through a change myself recently. I didn't know I needed changing. (well...I probably did, but I ignored it.) The change was painful and traumatic,and it included nightmares for a couple of weeks. It was necesarry, for without the change I couldn't grow. I couldn't do the things He has planned for me. I just wish I was included in on the decision of weather or not I needed the change.

Hugs....

Tara Marie said...

All I can say Tom is 'Welcome to Holland'. I know it is cliche, but for me, it was the perfect metaphor to latch onto when I was pregnant with my daughter and we had 'soft markers' for Down syndrome. My husband is a pilot and flies around the world.....so for us, this was just a new destination on our life map.

I began blogging about our life with our daughter...in fact, as a way to share with the world the 'normalcy of difference'.......yes, our life with our daughter is 'different', but it is also 'normal' at the same time.

We never had scary medical challenges in the beginning, so I can only imagine how much difficult it makes for things at this time....so all I can do is offer your sweet little guy lots of positive thoughts and prayers that he gets stronger so he can be home with you as soon as he can.

I am book marking blog as I so look forward to watching your little guy grow and blossom and fill your hearts and homes with more...much, much more than you could have ever imagined.


Peace, Tara Marie Momma to Emma Sage and her siblings

anne said...

I'm so happy to have found your blog.

My name is Anne and I have three children, three-year-old Archie and two-year-old twins, Kit and Jack. Archie has Down syndrome.

I just wanted to write you to tell you that I know how difficult it is for you right now. Everything seems bleak, and it feels as if life as you have always known it has ended. Just hang in there. It will get better. I promise you that it will.

I was listening to my husband talking on the telephone last night to someone from long ago, to someone who didn't even know we have children. Somehow he ended up mentioning that Archie has Down syndrome.

And then my husband said one of the greatest things I've ever heard him say. He said, "Kids like Archie see the world from a different perspective than we do. And when you hang around them long enough you start to see the world that way, too. And let me tell you that the world is a better place through Archie's eyes than it is through my own."

I know that sounds trite and contrived, but it really is true.

Ignore what makes you uncomfortable and enjoy Ian. He has opened an entirely new world to you and I feel privledged to welcome you and him.

Take care,
Anne
http://www.archiesroom.com

Jeff said...

Brother Tom;

Congratulations on the birth of Ian, he is one good looking little dude.

Welcome to the Fraternity you never planned to join. Some of the wonderful ladies that have posted to you know me so I don't have to hold back.

You are going thru alot right now my friend and that is ok. You are going to have good days and not so good days. When Nash was born we too found out for the first time a few hours after he was born that he had Down syndrome....what a shock that was....talk about hitting my big ass arcoss the head with a dose of reality I had never had. I knew nothing about ds at the time...all I knew was I was holding the most beautiful thing I had ever seen in my arms and he was perfect in every way and still is.

It's ok to be happy one minute and pissed off at the world the next. Let it out....I always felt I had to show a strong side around everyone so I usually let it out in the truck on the way back and forth to the hospital. People probably say me driving and wondered who the hell I was cussing out....but it helped.

Today I do not know who or what I would be if I had not travelled down this road. About 6 years ago now I met six other men for dinner, did not know any of them when I arrived but we all had one thing in common, we all where dads to kids with Down syndrome. Today our DADS group (Dads Appreciating (you have to hate it for a bit before you appreciate it)Down Syndrome) has groups in 12 states and 4 countries and when you are ready I will hook you up to our email loop...but that will come later.

For now take your time, love Ian and your family...the rest will happen when you are ready.

When you get time come on over to my blog. You can read my stuff and ask questions and you will see a few other dads that post on my blog and you can then check out theirs.

Hang in there and know there are many of us that understand...we get it.

Peace.

Nicole said...

Tom

I just had to join in with my friends from the T21 world to tell you CONGRATS! Don't listen to the people who don't know, but do listen to us. :)

Like the others have said you are in for one wonderful journey! I look forward to getting to know your family, and especially Ian. He is a cutie!

Nicole ~ Mom to 4 girls, the 2nd who has T21

Princess Morgan said...

Tom,

It takes time, but you'll get there. In fact, you will find yourself trying not to laugh when you hear the cliched platitudes that people seem to think we need to hear (the same people who feel they need to say how "articulate" a guy like Tiki Barber or Barack Obama is). Hang in there.

Gregg (Princess Morgan's Dad)

Michelle said...

I just have to chime in with Welcome and Congratulations too! We've all been there - wondered why we were chosen, what extra we had to offer. And you know - still don't have the answers to that. And that's ok. But I love my son and wouldn't want him any other way - he is who who is and who his is is wonderful!
Welcome to the world, baby Ian, Welcome!!!

Kim Ayres said...

Hi Tom,

First of all, congratulations on the birth of your son!

I know exactly how you feel about people going on about "happy" DS kids.

The reason it's so damn irritating is that it puts the DS first, and thereby pigeonhole's your son. It says there is a condition, DS, and then there is your son.

The truth is you have a son who is as individual as any other child. He happens to have DS, but that is a secondary thing, like having blonde hair or short legs - it certainly doesn't define who Ian is or who he will be. It is an aspect of him, not the primary description of him.

You're a philosopher, so you know the power of language. To call him a Down's child is to define him in a way that makes the DS all encompassing. Your son is a child who has DS, which is something very different.

I came over to your blog because Rebecca (your first commenter on this entry) suggested you might appreciate a bit of support from another father who has a child with DS. I felt a bit wary because I know how irritating it can be to feel like you've joined a "Down's Club"

You haven't.

However, there are some people out there who have been through the same kind of feelings you're going through and have survived. You are welcome to draw on our experiences if you wish.

When my daughter, Meg, was born and we discovered she had DS, my first reaction was to want to hold her tight and tell the world to F*** off. I wanted to protect her from a hostile place that would condemn her from the start.

It's a natural, parental reaction. The fact that you feel that way means you're a good father - your instinct it to protect your son, not abandon him.

My guess is that in order to protect and support Ian, you will want to find out more about what DS means, and its implications.

There is a wealth of info out there on the net, and there are parents who have been through what you have. You may find some you have a lot in common with and others you have virtually nothing in common with.

I was interested to find out you have a background in philosophy (my major), turn 40 next year (I turned 40 last year), don't spank your children as a form of discipline (I never have either) and that you're setting up your own business (I set up my first business, coincidentally, the year my daughter was born).

If you want to talk, offload, rant, discuss or ask anything, then don't hesitate.

Feel free to visit my own blog (Rambling of the Bearded One), or if you'd like to chat privately, my email can be found on my profile.

From one father to another, my thoughts are with you.

Dylan (and Kristy) said...

Hi Tom,

Congrats on the birth of your beautiful son.

Kristy
Aka Dylan and Jonah's Mom

http://dylanupdate.blogspot.com

Archie said...

Tom,
Congratulations! People may never know what to say, but your responses to them will get better and better as time goes on. Feel free to check out Lili's blog at your leisure. It took me about two years to feel like talking to people about DS, now I'm ripe for a conversation on anything.
People will only pity you if you let them. All you have to do is be Ian's dad and others will follow your lead. I say, go find one of those castles for a while, spend some good family time. After a while it gets really hard to sleep in those things with everybody scrooching around...
You already see through the down syndrome, and that will be everyone else's cue that Ian is a little baby boy who happens to have down syndrome.
Again, congrats from another dad. Let me know if you need anything.