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Thursday, March 06, 2008

Premature Reflections

For some reason, I can't seem to be able to start this post.

I've written and erased several beginnings.

I find it very difficult to write about prematurity.

There was a great post at Purgatory a few weeks ago and LIW wrote: "I have a tendency that my therapist, Susan, knows all too well, to downplay what I have been through. The thinking goes: 'if I survived/accomplished/endured it, then it couldn't have been THAT bad, which means that ANYONE could do it and probably do it better'."

We survived it. We got through the delivery and the NICU and the afterwards and we just closed the book on speech therapy, the last reminder that we know of their prematurity beyond their small stature. Therefore, the answer in my world too is that it must not have been THAT bad. Because, looking through the blogosphere, it is quite easy to find stories where it has been worse. And therefore, not that bad becomes further and further diminished with each other story until it becomes a speck. You begin asking yourself, what's the big deal. Why am I so bothered by those early pictures? It certainly could have been worse therefore, it falls into the category of "not that bad." And if it is not that bad, it is okay. And if it's okay, then it can certainly also be considered good. And if it is good, there isn't a problem at all, is there?

I'm not sure if this pattern of thinking is a defense mechanism or guilt.

I am very drawn to reading about stories similar to my own and feel a definite kinship with other parents of premature twins. I recent read a book called Tiny Toes, which is actually written by a fellow blogger, Kelly Damron. It chronicles her journey from choosing a clinic for treatments to IVF to bedrest to premature birth and life beyond with premature twins. Arcing over the story are depression, marital woes, and strain with her in-laws.

And it's hard not place yourself into the story when she shares this slice of her life so honestly and poignantly. She leaves no emotion unturned, admitting to her own foibles and pointing out the mistakes made that lead to larger issues later on. I was struck in the story by the way she reflected on moments, sat with them. Made the reader sit with them as well. And didn't brush off the experience as not that important, not that bad.

In another week or so, I'm going to begin fundraising again for March of Dimes (though, hey, feel free to jump in now). We do the walk each year with the ChickieNob and Wolvog. It's partly for the March of Dimes but it's partly to not forget or minimize their birth. I think it's important that they walk in it or ride their Big Wheels. It's the same impulse that makes us go to the NICU reunion each year. It's partly for the doctors to see how big they've gotten and it's partly so we don't forget how small they started. It's good to move on, but it's good to look backwards too. We don't have the worst story and we don't have the best story, but we have a story that drives us to connect with other parents of premature children and to raise money and awareness for prematurity.

I am currently building my webpage for the event; trying to decide what to write. I know it is only up for a short amount of time--there is only two months until the walk. But it feels so important too. As do all the people who donate or participate in the walk. And I'm finding it difficult to write that page too.


Cathy said...

I often feel guilty being upset about my situation.

My boys weren't *that* premature. They weren't *that* small. They weren't in NICU *that* long. It's not *so* bad I couldn't hold them until 8 hours after their birth. We *only* have 2-3 appointments per week. They now think maybe there won't be terrible lasting effects. Lots of people have it worse.

I mean, I have two living children, and no losses. What's to complain about?

It's hard to not be upset though, when so much of the general population has it better and they don't even know it.

Good luck with your fundraising. I'm sure you'll write the perfect page, as always.

katd said...

I'm doing the walk, too!!! This year, it feels so much more important. After worrying about Lily being born too eary or too small or too deeply impacted by possible drug or alcohol exposure, these little babies mean so much more to me.

So many women in our community, especially lately, have suffered such tremendous loss. It does make me feel guilty not only for having it so "easy" but for now being on the other side of things parenting Lily.

Good luck with your fundraising! Do you do anything special to raise money? As a first timer, I'm up for any suggestions:)

KLTTX said...

My dh and I do the walk every year as well. We've raised about $5,000 over the last two years and are pretty proud of that accomplishment.

My ds was also born premature at 31weeks. For a really long time I beat myself up over it - at first I couldn't get pregnant, then I couldn't stay pregnant and when he needed it the most, I couldn't breastfeed (no milk). He is perfectly healthy now and it is so easy to think it wasn't that bad, so many people have it worse and feel guilty for being so upset about it.

Good luck with your fundraising!

Jess said...

I love how involved you are with prematurity. As a preemie myself and with Ava, who was also a preemie (though at 35w and over 6 lb) a pretty healthy preemie I love the March of Dimes and their committment to the littlest babies.

Good luck!!

annacyclopedia said...

This post is right on, and it really resonates with me, although I have no experience with premature babies, or any babies of my own for that matter. But the impluse to minimize my own experience runs through so many parts of my life, and it causes so much pain. Not too long ago, I was really struggling in my marriage - not communicating enough about our infertility or the options we have to deal with it - and feeling really alone. I was sharing some of this with my mother and said, "If things between us are this bad now, what's going to happen to our marriage when something *really* bad happens?" In her wisdom, she pointed out that this *is* really bad, this is one of the hardest things I'll have to go through in my marriage. And it just struck me how I don't honour this experience for how painful and exhausting and demanding it is. In doing that, I can't recognize my own suffering in the midst of it all. And that makes me feel more alone than anything, cause I'm not even with myself.

SarahSews said...

Thanks for this post Mel, it made me feel normal again. I've been struggling to make the worry go away lately, especially since everything looks so darn good. But my IF heart just won't let me. I need to just acknowledge the fear and let it be without feeling so guilty about it. I have reason to worry and nothing but a live healthy baby in July can change that.

soul-quest said...

Both my children were born at 36 weeks, 2.5 kgs. Both were in Neo-natal for around a week each. It was the worst thing that I EVER went through. To have (with my first born) your new-born perfect baby taken OUT of your arms and taken to Neo-Natal ICU, one minute 'perfect' and the next, tubes and machines and beeps. With my second born I held never got to hold her, they just took her straight away.

Ofcourse it was not 'so' bad, ofcourse we got through it, Thank G-d, I still cannot look at those early pics of either of them, that SMELL comes back into the pit of my stomach. Not just the disinfectant, but the actual taste of FEAR.

I 'downplay' both experiences now, and I think it is just a built-in coping mechanism.


littleangelkisses said...

Oh Mel, there are times when you read my mind....

Boo was born at 31 weeks. I had a condition where in less than 5 minutes, if my water had broken, he would have died. Over 3 years later, he's perfect.

But the NICU time was hard, harder than I can describe.

And now as I deal with secondary IF, I feel guilty because I know how lucky I was the first time.

Kelly said...

Mel, thank you for your kind words about my book. I think it is
important for us to remember that our journey's were difficult and
it's okay to carry some pain with us forever, even if we push it aside eventually and say "it wasn't that bad." We know that it was, but when we are blessed with a child after infertility, we cannot help but feel grateful for the gifts we've been given no matter how difficult it may have been.

Good luck with your fund raising, we already started doing so here in AZ. Right now my husband is kicking my butt!

Just as infertility becomes a part of us, so does prematurity. Thanks
for not forgetting and raising money for a great cause!

JuliaS said...

Even now, 11+ years after the first and almost 8 after the second - just thinking about those NICU days I start to shake. The nurses always remarked how "calm" I was the whole time through the NICU storm. They didn't know that two months after we got to bring her home, I completely broke down and sobbed for almost 48 hours straight just because I came across the folder they had given us - it all just came pouring out. I had held it in that long - thinking as many have also expressed, that it wasn't that bad, that to be upset would someone mean I was ungrateful. The follow up ROP appointments were always ripe fodder for another crying jag. I don't think I really started feeling "recovered" from the experience until the day my dd not only proved she had caught up, but exceeded expectations developmentally by saying one of her first complete sentences "I a Princess!" shortly after she started walking. Those first 18 months had been tough - constantly sick, constantly worried. She turned the corner with that one sentence and is now an amazingly bright, beautiful and talented young girl. She just took off and hasn't looked back since!

It's so funny that you found the NICU101 spot and posted it as a bookmark worthy site. I just found, linked to it on my blog and bookmarked that very same spot the night before your post appeared on it! I suppose I could say something about great minds . . . :0)

loribeth said...

I think you're right that it's a self-protective thing. I also think that because other people truly have no idea of what we've experienced & don't give us the recognition we deserve, we absorb the message that we're supposed to buck up & get on with it. Even when people say stuff like, "Oh my God, I can't imagine, I could never survive if something like that happened to me," I find myself thinking, "Well, I'm still here, so either it wasn't that bad (or there's something lacking in me)." Sometimes I can't let myself think too deeply about what happened to us and what I'm missing out on, or I think it would crush me.

B said...

It's a funny thing belonging to the infertile community cause in a way, it's a community we all want to be out of. I mean who would choose this?

The support I find here is..... i can almost mean this literally...... is LIFE support, but it is almost impossible to not compare your own story to others and make an assessment of better or worse. To diminish either your own pain or someone elses..... to resent others who equate what seems like a small trial to what seems like your own enormous one. I struggle hugely with that and have not the grace, wisdom or inclusivity that you seem to have. I find it hard to let the pain of others be equal to mine.

You walk a difficult path with sure feet Mel. I hope you honour your own experience in the way you do others.

love B

Bea said...

Good to see you doing the walk again. You will be reminding us again closer to the date, won't you?