As you might imagine I tend to visit a few preemie websites (OK, probably more than a few).. Not as much as when Eliza was younger or when I was in the hospital for several weeks waiting for her inevitable very early birth seven years ago, but I still pop on to some of them now.
There seems to be a recurrent theme on a lot of websites about preemie parents who "wouldn't change a thing" about their journey which resulted in their child's premature birth. This sentiment is often declared in the same breath in which these same parents are seeking help, guidance or maybe just a listening ear about their child's delays, medical issues and their own anxieties about what the future will hold.
I will unabashedly admit that I do not understand the sentiment that a parent "wouldn't change a thing" about their child's journey through Preemieville. Really? You really wouldn't do anything to have stayed pregnant a little longer, have your child need one less day on a ventilator, one less infection, one less transfusion, one less procedure, one less evaluation, one less therapy session, one less accommodation on her IEP? Really?
Now some will say that this would mean I would want to change Eliza or who she is. Of course I don't want to change my child. Eliza is a delightful, loving, beautiful, funny child who is more tenacious than most adults I know.
And of course I think she is "perfect" as I am sure most parents believe their children are.
But if I could change the past to take away just one day of Eliza's pain or suffering I would do it in a minute.
I can't imagine what it would be like to be in your shoes and any other preemie mom's shoes, but I love this post, and I always appreciate your honesty and directness, and I find it hard to believe that any parent (preemie or not) wouldn't change a thing. A great post, as always.
ReplyDeleteHmmm I think I'm guilty of this one. But I think it because that, if I wish Jessica's prematurity I probably wish her twin sister away too. And I can't quite bring myself to do that. I suppose I view their prematurity as a 'part' of them. Not that a part that I would have wished for but, still, given that I can't change the past it is an inevitable fact of J's existence and her sister's, sadly very brief, life.
ReplyDeleteBut if I could have had the treatments and procedures and tests for her, I would have done. If I could gift with undamaged vocal cords and clearer speech, with the ability to use the toilet, to take away those strange long pauses when she seems to be elsewhere I would. In a heartbeat.
But I can't. And I did, would she be the child that I know? I don't know. An unanswerable question I suppose.
Thank you for such an interesting post and I will certainly reflect further on this before I let that phrase trip flippantly out of my mouth again.
Beautifully said.
ReplyDeleteAnn, thank you for saying. I don't get it either - ever. Any good mother loves her child more than her own life, even when the child has the most severe disabilities. But when I hear those moms say they wouldn't change a thing, they wouldn't want their child any other way, I'm ALWAYS perplexed.
ReplyDeleteHuh? I mean, I'm not suggesting they'd want another child - I know they want the child they have, of course. But do they really mean they wouldn't want their child to have zero disabilities?
I say it's BS, 100%. It's a coping mechanism - no more, no less.
Otherwise, why engage in therapies, why try to improve their disabilities?
And if any mother were given a magic pill to give their child the ability to walk, talk, see, run, reason, express, eat - fixing something that child couldn't previously do, they'd do it in a heartbeat.
YES! I was just thinking this exact thing. Wondering, am I the only one?! Of course I love my micropreemie (now 3 and a half) more than I ever thought I could love anyone, but I would NEVER say, I wouldn't change a thing. I would change most things actually -- I'd be pregnant for more than four months, he'd be without a brain bleed, he wouldn't have to work SO hard to have done all the things that come so easily to term babies, and I'd take away his probable autism. Maybe it makes me selfish....but I think it's total BS that saying goodbye to our own dreams and the dreams for our baby is something as easy as "I've learned so much I wouldn't change a thing!." Thanks for the opportunity to vent!
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