(no subject)

[lollardfish]

It's been over a week since Nicholas was born and we're all doing well. There are inumberable moments of tremendous joy - he was a little chilly after a sponge bath so I held him on my chest, under my bathrobe, and we cuddled until Mamma was ready to nurse. His little fingers played with my chest hair and he tried to figure out why my chest was so much less useful than his mother's. There are a few moments, still, of sadness. Shannon, of course, is dealing with the fun of post-partum hormones, which can't make it any easier. But both of us still encounter grief. We grieve for the loss of something that we only imagined, we worry about the future, and when needed we take turns being strong. I suspect these emotions may never completely fade, and that's alright. They don't stand between our love for our son, or our determination to make sure the world is as beautiful a place as he thinks it is. I still, however, cannot really listen to the song that Kurt wrote for Nicholas. Looking back at your comments from those first few days also make me tear up. Overall, though, having our healthy, happy, sweet, boy with us overrides everything else.

I've now been doing some reading, mostly following links left to us by some of you in comments. I find This .pdf from the UK Down's Syndrome Association to be good. There's still so much information to absorb.

At home, Nicholas has begun to adapt very well. Nursing has become relatively easy once again (for the last 24 hours. We'll see what the next one's bring). Nursing means less gas, happier mama, happier baby, daddy gets to sleep, it's better for everyone (although I missed my 3-5 feeding last night, I enjoyed the sleep). I have to get back to work now, too, so a little more sleep can lead to a lot more productivity. For a while yet, Daddy needs to bring home the bacon, so I better get to it.

We're more or less happy to receive visitors from friends now, but please understand that we are still not highly functional. Call or email directly, suggest a time when you might come over, and if you can please bring some prepared food for our freezer (preferably in portions. Huge vats of frozen stuff are less useful than three dinner's worth in three separate freezable containers). If you smoke, please change into something not laden with toxins before you come over.

Thanks to everyone for everything.

Comments

[pied-piper70.livejournal.com]

But both of us still encounter grief.

This emotion I know well...And I am incredibly impressed that you have the honesty to acknowledge it and yet are still able to find the joy that is already there...That is the key...Truly...

I will call soonish then and we can see when would be a good time to drop by...It doesn't need long...Highly functional is not a necessity...really...

I love our new baby Nicholas!

[mizzlaurajean.livejournal.com]

I know when I was reading up on Downs to try and get an idea of what that would mean for Nico and you guys and the rest of us friends & family, I was struck by the idea that just as with any child it's impossible to predict what challenges they will face and what they will excell at. For me that helped put things into prespective and worry a little less in the immediate sense of things. I liked the one thing I read which might have been that British PDF that says a child with Downs is your baby first and formost. All we can do for now is love and nurture him and cross all those bridges when we reach them. When I start to worry thats what I tell myself. And we will be there to cross all those bridges with you guys!

I'm relieved he's home and healthy.

[lollardfish.livejournal.com]

Great. I'd love to see you.

[dreamshark.livejournal.com]

Thanks for posting the song - it's beautiful. And such a nice, bouncy tune. I predict it will be a song that Nico asks you (and Kurt) to sing over and over in a couple more years!

That UK pamphlet is terrific. I like the way it starts out by acknowledging that you may not be quite ready to read this yet, but asks you to keep it handy and give it a chance when you're ready. Lots of info, too. More, I think, than you usually see in comparable pamphlets in American doctors' offices.

Speaking of cultural differences, I got a chuckle out of the warning not to let baby get cold, and urging parents to keep the baby's room at least 65 degrees (translating to Fahrenheit). I can't imagine any attentive American parent letting their baby's room get below 68.

It really sounds like Nico is right at the top of the curve for a Downs baby, and a lovely baby overall. FYI, it sounds like Shannon and Nico are doing quite a bit better than the average new mom and baby at getting established with breast-feeding. It's surprisingly hard to get it right for something that's supposed to be instinctive. There may be other hurdles, but it sounds like the problems that Downs babies sometimes have with nursing isn't much of a factor for Nico. If there are problems down the line, La Leche League is a good resource.

[lollardfish.livejournal.com]

Health Partners seems to have some very good lactation clinics. We went to one yesterday and she offered a tiny, tiny, change in "angle of entry" that definitely helped.

Our thermostat is hovering around 70. I fear our heating bill. :)

[dreamshark.livejournal.com]

Lactation clinics. Wow. They didn't have such things 25 years ago. I'm happy to hear that at least one Health Maintenance Organization is willing to actually put some resources into helping parents maintain health.

"Our thermostat is hovering around 70." Yeah, ours too. But now you know that your doing it for your own comfort, not Nico's. ;-)

[lollardfish.livejournal.com]

Actually, the OB who visited us said between 68-72 depending on his temperature (which I take about once a day). Down's Syndrome can cause babies to have difficulty heating themselves, and Nico did have such difficulty initially. Not lately though.

[mizzlaurajean.livejournal.com]

Ours is 72 and sometimes I bump it for a temporary warm up. There are a few things I've decided I really don't care about teh cost even when I don't ahve the funds being warm at home is one of them. Plus I like quality t.p. Life is too short to suffer in your home.


Besides it's Mn they can't turn off your heat :)

[cakmpls.livejournal.com]

You feel what you feel. There isn't any formula that everyone is supposed to follow. I'm glad that you feel comfortable enough with us to tell us what's going on.

I don't think I know you well enough to be one of the early visitors, but if you want to email
cak hyphen edit at comcast dot net
and tell me your snail mail address, I would like to send you something.

For what it's worth.

[chasophonic.livejournal.com]

I have been following your new adventure as I can. Getting the new semester underway and other bits of life haven't given me much time lately. I have wanted to say something beyond congratulations, which never seems enough. Any comments, advise, observations or purposed wisdom I might think to extend, I have shot down myself with an imagined "you don't know," response. In any case you have been much on my mind.

What I do know is what it means to be Dad. I have enjoyed immensely your accounts of discovering fatherhood. I know well that feeling of the little guy snuggling down with you. Utterly amazing! Everyone goes and still there he is, yours more than anything else has ever been before.

I know also from what I have seen here in LJ, that your village is ready to raise your child with you.

I have been Dad for a few days short of 37 years. I don't know that I was ready for it then, but three kids, eleven grand kids and working with countless students (who grow ever younger) has given me a paternal perspective that shades most of my view of the world. I have been quite taken by the openness and attitude that both of you have shared here on the news of Nicholas having Down Syndrome. I love the icon. I know we aren't close (I don't do close very easily), but I do count you as a friend. As a friend I am pleased for you both. But beyond that, from that paternal perspective, I have to say I am proud of you as well.

Re: For what it's worth.

[lollardfish.livejournal.com]

Thanks Chas. That all means a lot. Those damn students do keep getting younger, huh ...

It's a damn good village.

[madtruk.livejournal.com]

I read OB as QB. I'm an addict.

[creidylad.livejournal.com]

This is a wonderful post. As the parent of a special needs child, I do understand that strange, oftn infuriating conflict of joy and mourning all too well. I am so glad that little Nico has you and his mother as parents -- it sounds as if he couldn't have picked a better home or community to be born into.

[lollardfish.livejournal.com]

Means a lot coming from you. It'll be hard to leave this community, too.

Re: For what it's worth.

[mizzlaurajean.livejournal.com]

Damn it Chas! You just made me cry.


Though I suspect on 500 mg of estrogen that its not terribly hard to do.

[minnehaha.livejournal.com]

And thank you for the update.

B [at JFK, on my way to LHR]

[minnehaha.livejournal.com]

We've been meaning to talk to you about that....

B