Wednesday, November 21, 2007

Sleep on it

I got out of bed around 11pm last night because I was in a rage. I turned on my laptop with the intent of writing the most spectacular of rants on my blog, but decided against it at the last minute.

It had to do with people's comments about Ian again. I know that it's quite natural to be so sensitive to how my little guy is perceived by everyone in these early days, but I've got to tell you, I wanted to smash a chair against the wall last night.

Take a breath, Tom. Those feelings are starting to rise up again as I write here.

I know it's hard for people to say the right thing, and that, in fact, there really is no "right thing" to say about all the feelings that are swirling around like a flushed toilet full of ... water.

Like the nurse who told me that Ian can never ride on rollercoasters because his neck muscles can't hack it. That's true, but did she have to tell me that two minutes after Ian was born and diagnosed with DS!? I mean, Ian still has blood all over him, Annie is being sewn up and you're handing me my son and telling me not to let him ride rollercoasters!?

That's actually pretty funny. Now.

But that's not what I got worked up about. It was just this little off-the-cuff remark about there being no disabilities in heaven. That sent me over the edge for some reason. I just wanted to tear apart the house and yell, "Ian is alive and here and yes he has a disability but don't talk about how wonderful it's going to be for him when he's dead because he's very much alive and he's smiling and trying to talk and I love him and I hope there are no insensitive people in heaven because if there are then I'm going to kill them and then I'll be kicked out of heaven with a one way ticket straight to hell!"

I'm glad I slept on it.

But you know what, I said some pretty stupid things when my niece died. I had to apologize to my sister for the weakness of my words, for wanting to say things that would ultimately make me feel better and back in control of the world. I'm trying to learn to give people the benefit of the doubt, even when I want to hide and rage and throw a tantrum that would make Silvi proud.

I'm anticipating the day when I don't fly off the handle so often. It's only been two-and-a-half months. (Is that all? I feel like I've lived ten lifetimes in these past weeks.) And I'm also looking forward to the day when all I have to write about is how bored I am at my job or tell you about the flat tire I got on the way home last Friday night and ripped my jeans jumping over a fence.

I miss being bored some days. Nah, I don't.


Leah said...

And by the way, tell that nurse she's flat out wrong! Angela is a roller coaster junkie! (it's kids who have AAI that can't ride, and it has nothing to do with their muscles, but their spine!)

Anonymous said...

Stupid, stupid thing to say, Nursie. Let's all put HER on the highest roller coaster in the world and hope it collapses halfway through the ride!

How do we know there are no "disabilities" in heaven? What we so arrogantly call "disability" may be the norm in the next life. Are we so arrogant as to not even consider that the new body in heaven (if there is such a place) will not be a body that has an extra chromosome in each cell? And some people think God is a white Caucasian!

Anonymous said...

There's that 'ol Baptist mentality for you. thanks!

Anonymous said...

Hey, Tom. I'm waiting for your "most spectacular of rants...."

Go ahead, vent. Make my day. Honesty is like boiling liquid gold: too hot to handle, but very, very valuable.


bella said...

Rant away!
I get it though, about how you want to let it all out and then want to be able to hold the whole of things, like people's positive intentions, and I still am figuring out what I am comfortable putting out there on my blog and how to tell the truth and respect my own privacy, ect. . .
people do say stupid things, ignorant things, mean things, ill advised things, unkind things, thoughtless things. I know I have done it with everyone else.
What I hear in your words resonates with me, though our lives and experiences are different. That though you can be unhappy about something, though it can be a shock and not what you wanted, it is an insult to assume that life or a person is a "problem", something in need of a cure or fix, that it/we are broken. So much well intentioned "healing" treats people as if they are fundamentally a mistake instead of life just happening.
Well, enough of my own rant. :)
As always, I appreciate your honesty.

Elbog said...

Resistance is futile. You will be assimilated.
You are soooooo far ahead of where I was at 2 1/2 mos. You have glimmers of wisdom that took me years to grasp. Yes yes yes it is so much about what others are dealing with inside themselves when they say those inane things to you.
I was wondering about Heaven and Emma, once. I wondered if I'd recognize her when I saw her (assuming the best for me, lol), with her 'perfected' self and all. Instantly, it occurred to me that it was more likely that she wouldn't recognize me.
Did you know that many Native American tribes thought that T21 kids were divine entities sent to Earth?
Be pissed. You're percolating, under pressure.
And my Emma is a roller-coaster obsessed fiend.

Emily said...

Oh Tom, I Know! The comments drive me bonkers! It's uncanny how those of us who have gone through this "experience" have so many similar grievances.

When my daughter was 1 day old, the doctor made it a point to tell me that she won't be able to play contact sports (darn, I was hoping she would make the NFL!) And SOOOO many times have I heard the "well at least you know that she will go straight to the highest level of Heaven (Mormon speak- although we are not LDS, we live in Utah and everyone assumes that you are). Gack. Well, if that is true, what the hell makes you think that we will even be joining her there?

I have found that as the months go by, it is getting somewhat easier to chalk most of the comments up to ignorance, and even laugh at some of them!

I SO want to read your rant!

Michelle said... Im gonna hafta tell Ciarra she cant ride rollercoasters!! (Must've been imagining Space Mountain 4 times in a the FRONT seat!) ;)

Um...Im not a looney, honest. BUT...I kinda am of the thought that MAYBE Heaven is actually populated by kids with T21 more than by anyone else...that just maybe they are the enlightened ones who we should emulate. Very little malice, pure hearts, gentleness, love comin out the ears....of course that all adds to that OTHER DS myth...that "they" are all so..."LOVABLE AND SWEET"...which they arent...always...but usually.

Tom, rant away, you are among friends and fellow screamers.

God is Great Beauty Salon said...

The sad thing is, I guess, that those comments will keep on following you. But I guess, as you wrote, you will learn how to deal with them, even though you (or Ian or anyone else) shouldn't have to.

This morning, at work, I went down to the corner shop. The owner asked me how I was, and then: "And how are your children today?". The five people with Down Syndrome that I work for, he meant. Just one problem: They are between 35 and 45 years old! Older than me, that is...

Sad to hear about what the nurse said. Sometimes us human beings just don't think. A bit curious though, how could she know so early that Ian's neck muscles are to weak for roller coasters? Because she can't have based it on the fact that Ian has Down Syndrome?

Take care! Hang in there! And great pictures above of both your kids.

Kim Ayres said...

Sitting in the corner, nodding with empathy

Mother said...

My stepfather said he had a dream of Penn in heaven, and he had nothing wrong with him. It still bothers me, when people talk to me about this next little perfect angel and say things like, "I hope it's healthy." Hmmm....what is the definition of healthy in your book? Normal? Penn was perfect and he was healthy. This world made him unhealthy. I am sorry someone mentioned to you what your son would be like in Heaven. There is no place for that in the land of the living. I wondered what Penn would be like in Heaven. I think he will be T21, God sent me that angel, and I can't imagine He would change the angel when he went back to heaven. Remember, ALWAYS get second opinions, and never just go with the flow of what doctors say. I know you mentioned four doctors, but are they all with the same group? Anyway, you're a smart guy, so I am sure you know what I just said, without me saying it. I continue to pray for Ian. 2.5 months does feel like a lifetime!! It's really amazing. Tanya

Tricia said...

I've got 11 months active DS duty and I am still flying off the handle here and there. But guess what? I still have my plain ol' boring days too! And as much as I may complain, they're purty good.

And that nurse? *Karate CHOP!*

Tricia said...

I've got 11 months active DS duty and I am still flying off the handle here and there. But guess what? I still have my plain ol' boring days too! And as much as I may complain, they're purty good.

And that nurse? *Karate CHOP!*

Tom said...

Leah: I love rollercoasters, so that's god news. My wife on the other hand...

Anonymous: Wait, God isn't white!? :)

Anon #2: Not a Baptist, this time...

Peter: I'm sure the say of the super rant will come.

Isabel: Boy, if people treated me based on all the my "mistakes". Great "rant."

Elbog: Guess I'll make the Borg proud. Maybe I'm "ahead" in a few areas, but am sure "behind" in many more. Next time I'm in San Diego we'll have to head over to Mission beach for a ride on a few rollercoasters.

Emily: Wait, you live in Utah and you're not LDS?! :) Here's to the day when I can laugh most of other people's lack of sensitivity away. And keep reading; I'm sure that rant will appear one day.

Michelle: Annie and I were laughing about the nurses rollercoaster comment again yesterday, "Aww, no rollercoasters? And we were going to stop at the Mall of America for a ride on the way home from Ian's heart surgery." And just for the record, I think we're all just a little bit looney. :)

GIGBS: Unfortunately, I know the comments will be there the rest of our lives. Just this morning at a coffee shop I had to cringe at some comments made by our waitress. Oh well..
And some of the other parents say rollercoasters are no big deal; we'll see. Got a few years until that's a hurdle to cross.

Tanya: Thanks for reminding me about the second opinions.. I've thought of you often. Hope life is.. well, that it is.

Tricia: When I get to 11 months out, I plan to have it all together.

Um, not!

Tom said...

Kim: Appreciate it...

Shannon **Gabi's Mom** said...

Okay Tom, I am in year 8 and still get pretty perturbed. I can tell you it certainly makes me feel better to see a Dad experiencing these things. My husband is always blaming my feelings on being a woman and a mom.

Anonymous said...

joining Kim, nodding my head too.


Tom said...

Shannon: I imagine many guys may feel like I do when faced with similar circumstances, but they all express it in their own ways. My just happens to be through writing...

Rebecca: Thanks