(no subject)

[lollardfish]

"Did you have any genetic testing done?"
"I'm not sure. I know Health Partners did a lot of tests, but we weren't told anything."
"Well, he has a number of characteristics indicative of Down's Syndrome."

From that moment, life has changed a lot. Sure, every parent's life changes when their child is born, but those words at that moment (perhaps two minutes after birth), broke me for a few moments. I thought horrible thoughts - adoption, abortion, will the child live, if he doesn't, will it be easier, what does it mean for him, what does it mean for me - truly horrible thoughts. Then I had to tell his mother.

It's really not welcome to Holland. Holland may be where we are at now, or at least where we are going, but at that moment, it was a lot more like Hell. But since then, things have been getting better and better, seemingly by the hour.



When I look at my baby, all I see is my beautiful son, not a syndrome. It helps that he essentially has no symptoms. I guess I can see a little almond shape in the eyes. He rarely cries (although more and more), typical of children with this condition. His heart, we now know, is fully normal. He eats very well, nurses even, and is putting on weight. He tracks objects with his eyes, bats at the monkey, giraffe, and parrot hanging from his gymini (a play mat with toys that hang down). He lifts up his head and rolls to the 45 degree angle from time to time. We may find him susceptible to respiratory infections, slow to develop mentally and physically, and bearing features that mark him as different in our society - but right now, if the nurses, doctors, and the chromosome test hadn't confirmed trisomy-21, we wouldn't know that my darling boy has more chromosomes than you do. We wouldn't know.

But he does.

I really don't cry anymore, although that was an early challenge for me - learning to cry. Men, well, me anyway, just don't cry in our culture, and boy did I need to. Shannon and I sobbed on each other in the hospital once everyone had left shortly after delivery (it might have been 2 hours, who knows really). I cried when I went to the internet in the family waiting room to post my locked birth announcement. I cried as I thought more terrible thoughts - maybe Bruce won't want to be his godfather. I should let him off the hook. Shannon said, "I never want to speak to any of our friends again, ever." I cried. I mostly tried to be stable and strong whenever we were together after that, though I wept on her chest as I heard Kurt's song for the first time, at 6 AM, trying to get ourselves together to make it to the hospital to feed him at 7 (on, I think, the third day of his life?). I still haven't really heard the song. I tried to play it this morning, but still couldn't. I hope that passes someday.

But here's the thing, my son is sleeping (snoring cutely) on my chest as I write this, and there are no tears. Not because I need to be strong for him, but because there's just nothing to cry about.

On the second day of Nicholas' life, Bruce, Karen, Laura Jean, and David all came to the hospital at various points. They brought cake, prosecco, cards, and presents (plush Cthulhu comes to mind). They said congratulations a lot. They all said how beautiful he is (which he is). This was really a moment where my vision shifted, shifted from seeing my child as a bundle of potential symptoms and fears, to being just my beautiful baby boy.

Ok, there are the tears.

I'm never going to forget that moment when the midwife, a wonderful woman, looked at me with such empathy and uttered her terrible sentence. There are worse sentences uttered in hospitals, far worse. A lot of them involve death, and those come with the heavy burden of an imminent ending. This one brings with it the different burden of a life, hopefully a long one. Things change in your head when you hear something like that, when someone tells you that whatever hopes, dreams, visions, ideas, realities in which you thought you were living, it's all changed. Fortunately, it turns out that Shannon is strong, our friends are strong, I'm finding my own strength.

Best of all, Nicholas is strong enough to carry us all.

Except for right now, when his bottom is dirty, he's waking, and probably needs to eat.

Comments

[madtruk.livejournal.com]

We cried for you. We cried for all the reasons you mentioned and two of our own, boy & girl. We were told at one point that our girl was at risk for Downs. I can remember those feelings, those first terrible thoughts, but in the end we went ahead. She's got one less chromosone than your son. It takes someone elses moment to remind us, sometimes, of how very close we all come to Holland and places much worse than that.

Say Boise.

You're doing fine-you've only mentioned bowel movements twice online.

[lollardfish.livejournal.com]

I didn't know that. Something on the ultrasound? Did you do the amniocentisis too?

[madtruk.livejournal.com]

Hopefully Cmajor will weigh in-she's got the memory more firmly in mind. Because of all the issues that went on before, she was constantly being tested during the pregnancies between the boy (Cb) and (during) the (Cg)girl.

I know we didn't do amnio for fear of the damage it could cause.

I just made up Cmajor, Cb, and Cg's new nicknames. If they stick, I will be happy. It's the little things, really. Sides, 'the boy' is getting old. He needs a name ;-).

[minnehaha.livejournal.com]

I thought that was their LJ names.

K.

[madtruk.livejournal.com]

Right, that's what I meant to write...

[minnehaha.livejournal.com]

What are you people talking about?

B

Still proud

[chasophonic.livejournal.com]

In my previous post I spoke of things I wanted to say but couldn't "know".

You felt the things I thought you might. You're learning the things I saw that you would. You are recognizing a strength that I spotted straight away in you're earliest posts after Nicholas' birth.

I'm smiling for you.
See you Friday

[saracura.livejournal.com]

I definitely felt your tears in those early posts, and I cried as well. You were on the forefront of my mind for those early days. There came a time in the first few days that I could tell that feelings were changing and love was overwhelming you both. That was so beautiful of you to share that with us all. Thank you for sharing your struggle with us! It's hard to know how we "other" people with respond when those dark thoughts try to overtake your mind, saying that you are now marked somehow and maybe unloveable (that's what my dark thoughts say sometimes). But it has really just made you more accessable and you can see how much love you really do have in your wonderful life.

Nicholas

[markiv1111.livejournal.com]

The sympathy of one who has never had a child of his own (which I haven't) may be meaningless to you, but I felt this sympathy from very early on. The thing to remember is that Down's syndrome kids are people too, with as much individual variation as all the rest of us. And also note that one Spike McPhee, who at least used to be (and perhaps still is) a Boston bookstore owner, is a Down's syndrome human being who nonetheless has normal intelligence, though Louie says his housekeeping is appalling. Meanwhile, everything you've said about Nico makes him sound like just a wonderful baby, and there is a *lot* of precedent for wonderful babies becoming wonderful adults. Hang in there and keep us posted.

Nate

Re: Nicholas

[lollardfish.livejournal.com]

Thanks Nate. No sympathy or empathy is meaningless.

By the way, I really prefer (not for politically correct reasons) a baby with down's syndrome (rather than a down's syndrome baby). It's exactly as you say, he's just a baby, but with a syndrome. The syndrome doesn't govern.

Thanks for your kind words, and I will keep writing about our experiences.

Re: Nicholas

[alisgray.livejournal.com]

My brother's housekeeping is nothing to write home about either. But I still like 'im. Mostly. Nearly entirely.

[minnehaha.livejournal.com]

It felt like someone dropped a grenade into our corner of the world.

But this is exactly the sort of thing that makes our species different. Nicholas forces us all to demonstrate our humanity.

B

Gah

[bodi-kat.livejournal.com]

Thank you, so very much, for posting this. "Touching" isn't an adequate word here; this was very beautiful.

From the initial shock and grief to the now overwhelming love you both feel for him, it's all good.

Would it surprise you to learn that most parents grieve when the "real" baby is born and replaces the image they had in their heads? Granted, their surprise is a great deal less than what yours was, but while yours was on a greater scale, it's not really out of normal.

And the tears are going here, too, TYVM.

Be well, all of you. i feel very honoured to know you and Shannon & look forward to getting to know your son, too.

Re: Gah

[lollardfish.livejournal.com]

That's interesting about most parents.

[mmagidow.livejournal.com]

What bodi kat said. I am so proud and honored that you feel comfortable sharing your deep innermost feelings about the birth of your beautiful boy with me. I am privileged to know both of you and hope that you are able to stay in the Twin Cities and Nico's village of birth for a long time.

[mizzlaurajean.livejournal.com]

You really know how to make a girl cry. It doens't help I'm on so much estrogen. I have many thoughts here but haven't got time to share them now.

[lollardfish.livejournal.com]

You don't have to share there here, we know (I think).

[mia-mcdavid.livejournal.com]

When you've counted on Italy all your life, and particularly preparing for the trip, that moment when you discover you're not going ain't no picnic . . .

I thought horrible thoughts - adoption, abortion, will the child live, if he doesn't, will it be easier, what does it mean for him, what does it mean for me - truly horrible thoughts.

My oldest will always, always struggle; my youngest will be a burden to society all his life. Sometimes I would think that a quick trip through the sleeping household with a knife could save a lot of anguish.

Just sayin', is all . . .

"sleeping household with knife"

[mizzlaurajean.livejournal.com]

trading one anguish for another does not save us from it.

Re: "sleeping household with knife"

[mia-mcdavid.livejournal.com]

This is a true thing. I'm just pointing out that, when the pain is great, anyone can think the most ghastly things.

[cakmpls.livejournal.com]

Thank you for trusting us, to tell us this so openly and honestly. As I said early on, I don't know you and Shannon very well, but it looks to me as if you have all the personal resources needed to be wonderful parents for Nico.

[madtruk.livejournal.com]

Thanks for sharing this. I didn't spend much time on LJ til Nico showed up. Kurt and I were in shock when we saw your announcement, but when Laura Jean posted somthing about wanting to see the baby, for some reason I just got this feeling that everything will be OK, this community is gonna love this baby!

RE Kurt's comments about Cg. From the point I nearly died 12/02 till Cg was born healthy 5/04 was a horror (and a really long story). I think it's probably a good thing that you and Shannon didn't have a clue about Nico's DS. I'm glad that Shannon got to enjoy a happy pregnancy with no more than the usual concerns. Since I had to go to a high risk OB with Cg they spent lots of time and money and testing to try to find something wrong with her. It seemed every week there was some new syndrome or disorder that she may have. I became numb to it after awhile and didn't even let myself get too attached to the pregnancy. Now it just makes me laugh, all the testing they did (not amnio) and in the end it really doesn't matter, you get the kid you get and you love them.

C

[lollardfish.livejournal.com]

Hi Carrie! It's been nice seeing you in LJ-land.

I didn't know that about your second pregnancy (other than the "almost died" part, which obviously I knew about).

I think Cora's disorder is called "intense cuteness."

[buttonlass.livejournal.com]

I agree with David on all points. I really like the part where you've been borrowing Kurt's LJ.

[madtruk.livejournal.com]

Let's be clear about this:

I'm the one who found the cool Dot icon for my spiffy wife...

...and who says this is my only blog ;-).

[lollardfish.livejournal.com]

Thank you!