(no subject)

[lollardfish]

I haven't written anything emotional about Nicholas in a long time, other than to express joy at the myriad little things he does. It mostly is joyful. He's eating solid food very consistently, he's laughing and playing, he's strong and curious, and really we haven't encountered any of things that we feared. Not one. He hits every milestone right on schedule and is a joy to everyone who knows him.

But I've been dealing with some complex emotions surrounding the birth of a baby boy to a friend of ours. The community, properly, is rejoicing and celebrating. The parents are so happy. Everyone is home and snuggly. And I've been feeling some jealousy. It's not a pretty emotion and is immediately followed by feelings of guilt for being such a lousy human being - but it's not being jealous in quite the way that you might think. It's not that Nicholas has Down's Syndrome and the other baby doesn't, but that the parents and friends get to experience a kind of joy that we entirely missed. There's a kind of intense joy, tinged by exhaustion, that just flows out of the pictures and postings about this new life. If you go back to the postings around last January 11th, you won't find that joy - and that's because we didn't really feel it. Our emotions were much more complex and, sadly but honestly, negative.

When Nicholas was born, days of troubled exhaustion followed. We had a sweet moment with the new baby on mama's chest, and if you ignore the medical tubes, the oxygen they were blowing on his face, and the impending sense of woe, they are sweet pictures. But within an hour or so, they had taken our son up to the special nursery, left us alone, and Shannon and I wept on each other, crying that it wasn't fair. This is not how new life should be welcomed into the world. Over the next week, it was a long battle in which sorrow and mourning gradually were defeated by our son's resolute health, incredible cuteness, and key concrete events.

First, the next day, our friends who called (minnehaha and mizzlaurajean and davidschroth) changed the dynamic by being so damn congratulatory, regardless of how un-congratulatable (not a word!) we felt. Enough people start telling you to celebrate and you start to believe it.

It also turns out that the newborn Nico was, in fact, our delightful child Nico - healthy, loving, strong, and cuter than a baby panda. When I look back on those first few days - wierdly lit through the haze of exhaustion that they were - I realize how his personality was already beginning to shine through.

And we had some clear victories. His heart, digestion, and respiration were fine. He began to breast feed within 24 hours of birth (I can't remember when, exactly, but Laura was there, and I can picture the expression of pleased shock and pain on Shannon's face when our little boy latched for the first few times). Since we had been advised that breast feeding would be a difficult, and quite possible impossible, goal - this was helpful.

Then there came some catharsis. That morning when I listened to Kurt's song for Nico, I wept on Shannon as deeply as I have ever cried. I have tears in my eyes as I write this, thinking about that moment, and I haven't been able to listen to the song since. But the acknowledgment of the sadness, perhaps, helped move me towards the joy that I should have been feeling all along.

"Should"

Knowing what I now know about my son, I should have been feeling joy. Knowing nothing, it's harder. And I think that if he had needed heart surgery, a feeding tube, had extreme hypotonia, and so forth - the joy I'd feel now, as I adjusted to the new normal, would be just as great as it is (sorry if that sentence is confusing). But still, when the new boy was born a few days ago, I felt no emotion more keenly than envy followed by guilt. And so I thought I'd write about it a bit.



In other news, in the last two nights, Nico has fallen asleep in the 8:00 hour for my mother and for a babysitter, then slept until about 6:00. This is excellent.

Comments

[smellingbottle.livejournal.com]

I don't have children, and perhaps because I don't, and don't plan to, and have no official notions that Children Are Always Unparalleled Joy, I've been the recipient of a lot of the more negative emotions of my friends towards their experiences of pregnancy, childbirth, postnatal depression, disliking their babies, and general parenting problems. I entirely appreciate how complicated and unpleasant it must feel to be helplessly envious of friends who've been able to appear to surf on an effortlessly authentic wave of post-birth joy. It's just that, in my vicarious experience through my close friends, a percentage of that kind of 'hurray - a baby!' is more official or external than authentic to the new parents - the way people automatically get damp-eyed over wedding photos which have little to do with the reality of the marriage which ensues. I suppose all I'm trying to say is that your experience of complex, often negative emotions, after Nico was born, sounds not at all atypical from what I hear of the messy, sometimes disappointing reality of having a child. I entirely admire your honesty on the subject - it's refreshing after the kind of dutiful sweetness which too often surrounds writing about having children.

I wonder whether now, looking back on other people's responses to Nico having Down's Syndrome, what kind of responses were most helpful to you? You sound as though the cheerfulness and celebratoriness of your friends was a good thing, but did part of you also want space to just be upset and not have to pretend everything was okay?

[lollardfish.livejournal.com]

That's a good question.

We needed some space to mourn, and got it. But then I think it was the honest congratulations -- people who I sensed understood that there were lots of issues ahead of us, but who wanted to see the baby, hold the baby, coo over him, congratulate us, and so forth, that really stood out. When the four aforementioned close, close, friends insisted on congratulating us, it was frustrating, because I felt so lousy. If other people, people who we didn't love so much, had tried it, I might have reacted with more hostility or rejection of their message.

So context, as ever, is really important.

But "I'm sorry" was never the right answer.

[madtruk.livejournal.com]

You have found out, once again, that you are disturbingly human.

Of course, you lose guy creds for talking about your feelings, but there you go.

I think it's very natural to want those moments. I know you're planning on more children, so you'll get them (we had a long time and several bad things in between the two, so there's that).

How's settling going?

[neugotik.livejournal.com]

It sounds like Nico is doing great & is really healthy & accomplished kid - It's understandable though that his birth was full of fear and worry of possibly complications: I'm so happy he's healthy. :D

Your writing is inspiring, and I really appreciate how it illustrates so much,about how the lows and highs of life are so intertwined.

[creidylad.livejournal.com]

This is beuatifully written, and I am in tears (not bad ones, not good ones either.)

I tried to find a post I thought I'd written years ago, about broken dolls and my daughter and my own feelings on a similar (though not identical) topic, but I can't seem to pinpoint it at the moment.

I guess the jist was that my own wrestling was that I spent a lot of time as a kid feeling like whatever I got was "less" -- my Barbie which was the same-in-box as my friend's Barbie came out of the box with a piece missing, the horse model that I got had a chipped ear, how come I had to wear glasses and so and so didn't, etc. etc., such that I internalized it very badly. Yet there I was, with the only baby out of all of my friends' with time in the NICU and developmental delays and having operations -- and here I was with another "broken doll", yet somehow this time, it iddn't matter. In my eyes and heart she was perfect. I didn't want to share this along the lines of "you should feel this too" but just to try to share a window into wrestling with similar issues. Though I know some of the above is what you guys are feeling now.

Perhaps more helpful:

One of Gwen's classmates, A, has a mom named, K. When A was born she had an annurism and almost died; her head swelled up. She spents weeks in the NICU, has had significant lifelong delays, and has a head now, as a five year old, that is bigger than most adults'. It's been a struggle. Then A's little brother, E, was born. K told me that when he went for his first post-birth physical and they told her everything was perfect and he was a healthy boy, she burst into pitiful tears. Her husband said, "What's wrong?" She answered, "It was supposed to be like this the first time."

[dreamshark.livejournal.com]

"It's not that Nicholas has Down's Syndrome and the other baby doesn't, but that the parents and friends get to experience a kind of joy that we entirely missed. There's a kind of intense joy, tinged by exhaustion, that just flows out of the pictures and postings about this new life."

I think I know what you mean. My first two pregnancies ended in miscarriage. I know that some people feel this is just like losing a child and you will grieve forever, but I'm not one of them. It was sad and stressful, but we moved on and had two lovely children. It's not something I'm still grieving about.

However, it sort of spoiled the whole "magic of pregnancy" thing for me. Instead of the happy glow of "I'm carrying a baby inside me" I just worried for 9 months. Then when thorintatge was born he had a low Apgar score at birth (inhaled something he shouldn't on the way out) so they took him away quickly, started him on antibiotics for a symptomless but worrying strep infection, and then put him under jaundice lights for way longer than seemed necessary. We spent a week in the hospital waiting to see if he'd be okay (he was fine). When we left the hospital, the last thing the doctor said to us was, "Be sure to watch for symptoms of meningitis." That kind of kicks your sense of unalloyed joy in the teeth.

It's not as big a deal as what you've had to deal with, but I've felt the same kind of peevish envy, especially of women who LOVE being pregnant, and overflow with sense of wonder all the time. I felt a little of that sense of wonder the first time I was pregant, before things started to go wrong, but never got to feel it again.

I thought I'd gotten over it all by the time ambertatge was born, but the first words out of my mouth when she emerged, bawling lustily, were not "Is it a boy or a girl?" but "Is it alive???"

[sleigh.livejournal.com]

You made tears well up in my eyes also, reading that...

Revel in the joys. Nico will give you both many, many more, I'm certain.

[cakmpls.livejournal.com]

Human. Human, human, human.

Even without knowing you and Shannon very well, I had an idea of what you might be experiencing. It isn't the same thing we've been through--the advantage of adopting kids with disabilities is that it isn't a shock, and you don't have to deal with that part of it. But there are enough similarities that I could make a guess at what you were going through. Please let me say, I think that you have done beautifully through all of this, and your honesty with yourself about your feelings is a huge part of that, IMHO.

[cakmpls.livejournal.com]

P.S. I didn't mean to use my silly Minnie icon--I'm on my bro's computer, and I have no idea what I did.

[buttonlass.livejournal.com]

We've had three or four days of actual progress on our end. This translates to this place beginning to feel like our home. I can still walk around and list off the things that aren't done or aren't right, but it's not the first thing I see when I walk into a room, and that's nice.

The next two days probably won't see much in the way of progress but then Laura Jean comes back and I bet this place is in tip top shape shortly thereafter.:)

[bellebonnesage.livejournal.com]

I worried too, and never felt any happy glow.

[bellebonnesage.livejournal.com]

I want to give you some data for that "should" category. I have two healthy children, and I never felt that joy either, during pregnancy or after their births. I love my children more than my own life, and I certainly have felt and feel joy at times interacting with them, but I never got that magic maternal bliss either. Please don't beat yourself up for what you did or don't feel -- what you do is what matters. Really. Authenticity is a crock.

[lollardfish.livejournal.com]

Right.

the thing that interests me now in my introspective way is not the lack of joy in the moment; it would have been abnormal to be fully joyful at that moment. It's the envy of other's joy in this moment.

[lollardfish.livejournal.com]

Right, K.'s response is it. Thanks.

[lollardfish.livejournal.com]

My issue, or not issue - the thing I'm thinking through - is not my feelings of trouble, sorrow, grief, and such things at Nico's birth. It's that I feel guilty about envying other's happiness.

And of course at the core is not just that, but the envy of people who get to have babies who don't have Down's Syndrome.

[jbru.livejournal.com]

Envy away. Then get over it, move on. I have a feeling that you'll have a few more of these moments as time goes on. It's not worth spending a lot of energy beating yourself up over what you feel.

Heck, I felt a little jealousy towards you guys after Nico's birth: you were getting all this attention and support. Where was mine?

Then I laughed at myself. Silly neurons. The crazy stuff they come up with sometimes.

[lollardfish.livejournal.com]

That's interesting. Thanks for sharing that. I get it. Where is yours?

[rani23.livejournal.com]

I just want you to know that I think about you guys often and wish you well and that I love seeing pictures of Nico. He looks very happy.

[jbru.livejournal.com]

I know, right? Heck, I haven't even had pie.

[lollardfish.livejournal.com]

I have some pie, but it's in Chicago.

[kalmn.livejournal.com]

you're not alone, is what i have to say here. theoretically[1], my ex and i started trying to have a baby two years before i left him. i left him two years and ten months ago. i was so envious and angry (not with you two, but with the world) when i found out you two were expecting. and so envious when he was born. a little worried[2] for the bunch of you, but so envious.

i'm working on this "other people get to have good things happen to them even if they are good things that i want and don't have" thing. which it sounds like you understand. not that i'm saying that you would rather have the other kiddo, just that if there was an option to have niko without downs you might take it.

[1] a story i am willing to tell in person or in email but not here.
[2] i think my reaction was, well, babies with downs need lots of people who love them so i think i'll make a sweater.

[lollardfish.livejournal.com]

2 is a very, very, proper reaction. :)

[bodi-kat.livejournal.com]

Let yourself feel that envy, and try not to feel too guilty about it. And then go back to revelling in the joy that is your son.

It's complicated.

None of us are without moments of envy, i think it's when we obsess over it that it becomes unhealthy.

complicated but lucky

[wema-way.livejournal.com]

I only got to meet you and Shannon and delightful Nico at B&K's anniv. party but the thing I was most struck by was how surrounded by love you all are. I have cousins with Down's and because they are older than me they were institutionalized. Not forgotten but... not there.

Nico has a fabulous community of your friends and their children and considering who all these amazing people are, he will have a life that is as full of as much richness and experiences and love as they all can share with him. Few children are so lucky in life.

Just a rambling thought for you.

Re: complicated but lucky

[lollardfish.livejournal.com]

Thanks for it. We are surrounded by love, and it's made it hard to leave Minneapolis for Chicago, though the love travels.

[mzelizabeth.livejournal.com]

mr. l-f, i think you are an amazing person. i am so proud to know you and have you as my friend. it makes me feel really extra proud to read what you have written here.

i was hiding away from the world when your son was born, but when i heard of the news, and of the information that he has Down's syndrome, the first thing i remember thinking was "thank goodness he was born to *them*!". if that makes sense...

what i felt is that Nicholas is the person he was destined to be -- and the fact that he turned out being born to you and Shannon (instead of any of the other parents in the whole world) is such a blessing. it's always seemed to work out that the people who need the most love and caring are also people who are very good at giving it. but so often it happens that they don't get the love and caring they need. when i think of the warm family of souls that make up your circle of friends i know that your son will never want for love and care.

when i did get to meet Nicholas for the first time it was at a coffee shop filled with friends, family, and music. and a light came across the face of every person who beheld him.

how long did each of us spend looking for that group of people who make us feel what it means to be Home? what would it have been like to be born into it? i wondered.

it is so good to hear you speak about your feelings of envy and guilt. who goes through a life without experiencing those?

i think of you three every day. i love you.

-e

[lollardfish.livejournal.com]

Thanks.