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Saturday, June 6, 2009

Oh, the Places We Have Been

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Today is the third anniversary of the night that we showed up in Labor & Delivery with Sharon 4 centimeters dilated and 90% effaced at 23 weeks, even.

The intervening 3 years have taught us so much. Some of these lessons have been good ones, some have been hard ones, and others have been just downright ugly. I think that it's safe to say that Sharon and I have both emerged from this experience changed people---better in some respects, shell-shocked in other respects, and different in all respects.

So, what lessons have we learned and what makes these lessons so important?

First of all, we've learned to appreciate the small things in life in a way that we probably would not have had we not experienced the trauma of extremely premature birth, the loss of a child, and the ongoing issues that Hallie experiences. We take nothing for granted around here. For parents of typical children, it's easy to overlook the small milestones (and sometimes even the bigger ones) because no one really expects anything to go wrong in the developmental process. We, on the other hand, celebrate it all, and all of the milestones we celebrate are hard-won by Hallie, who is by far the strongest and most capable little girl I know. That she successfully negotiated an obstacle course that consisted of six sequential steps (she had to climb up a ramp, jump off, go up and down a set of steps, straddle a bolster, crawl through a tunnel, and jump ten times on the trampoline) at OT the other day with minimal prompting after being shown it once was a major victory for her. That she walked into Home Depot the other day with Sharon to purchase yet another trash can after ours had been stolen for the third time from in front of our house (this time whoever snatched it actually emptied the bags out of trash out of it...I hope they enjoy the lingering diaper smell and that it serves as a constant reminder of their crime) and queried, "Oscar, Oscar, where are you?" is a major victory for us. Hallie teaching herself the rules of tag when she's only seen the game played once (this week, she began running over to us, tapping us, saying "tag you're it," and running away) is a major victory for us. Hallie eating a slice of bacon is a major victory for us. Hallie engaging in pretend play is a major victory for us. And having conversations with Hallie--real conversations about the stuff in which she is interested---well, that one is priceless.

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Some parents of typically-developing children have scoffed at us (to our face or behind our backs) for celebrating some of the things that Hallie has done. Some of them have even gone so far as to tell us that they don't think she's actually making any progress at all. Indeed, quite the opposite is true. Indeed, Hallie's progress over the past five months, and most significantly over the past six weeks, has been nothing short of remarkable. As Aunt Laura, one of the wisest women in our lives, put it recently, "Never underestimate Hallie."

And that brings us to one of the ugly lessons we've learned: that watching how people treat our child tells us an awful lot about who they are and provides us with important feedback that determines whether we would like these people to remain in our lives.

Back in the old days, before Hallie turned two, a lot of folks were sitting around waiting for her to catch up. This is not their fault: the notion that preemies catch up by age two has been so popularized by doctors, nurses, the media, and other parents, that I'm sure that it was hard not to buy into that particular fantasy. Sharon and I did, probably, on some level, too. But then Hallie turned two and still was not caught up (heck, who am I kidding? At age two she said no words and ate no foods). And by two and a half, it seemed like she was falling further and further behind. In the eyes of some people, Hallie shifted status from the preemie-who-was-going-to-catch-up-by-two to the globally developmentally delayed kid (since I am sure that most of these folks are far too PC to use the "R" word to our faces) who is not good enough to go to the right schools or play with typically developing peers. Rather than see Hallie as a kid, and one who is making remarkable progress, they see her as a condition (and I suspect as a condition that might be catching).

So, in the spirit of not sweating the small stuff, we've also come to embrace the idea of not sweating the small-minded. Hallie is a remarkable kid who has gone through more in her short life than most people will ever experience. She's in the middle of a developmental growth spurt at this point and the people whom we love and who love her are finding it amazing to watch how much she is growing on the cusp of turning three. Will she be caught up by 3.5? Who knows, and honestly, that's besides the point. The point is that we are enjoying her and celebrating her where she is right now and not just waiting for her to get to the next stage.

Another lesson we've learned is that special needs parenting is hard. It is much harder than earning a BArch and a PhD combined, and it's also much more worthwhile than any other academic or professional achievement either of us has attained in our lives. But it does take its toll. Along the way, and particularly during the really difficult period between Hallie's first birthday and late into this spring, when we were dealing, at various points, with non-stop vomiting, an intractable speech delay that summoned in us fears of apraxia, the opening up of the developmental gap, anxieties about autism and Hallie's IEP, and the like, we were not the best friends in the world to some of the people who DO care about her and about us. Now that things have attained a new normal in our lives, Sharon and I are going to make an effort to be better friends to those people in our lives who matter and have fallen away.

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terri c said...

You know, I looked at the photos in this post and was struck by how different Hallie looks even from a few months ago. I can't put words to it, I'm sure it is at least in part eye contact, but she is just so PRESENT in these photos; so much spunk and spirit there, whereas earlier in her life her expression sometimes looked to me as if she were either anxious, or "somewhere else." To me there's been a huge change, but what do I know? I think she is terrific in any case.

Lindsey: Mama of Andrew, Adam, and Ally said...

Beautifully said!! Hallie, you are an amazing little girl!

Anonymous said...

I so agree with your post!
Special needs parenting is hard and can be so isolating at times and more rewarding and frustrating than anything I have ever done.

Chris & AnnMarie said...

Yeah for Hallie! What a beautiful girl and an inspiration to all!

art-sweet said...

I am so furious, on your behalf and on Hallie's, that anyone would seek to discount her achievements. I read always, and don't always get around to commenting, but I am always grateful to you for sharing your world, your worries, and your wonderful spunky little girl(s).

Rock on Hallie!

BusyLizzyMom said...

She is making huge leaps and gains, eating, less vomiting (I love it)and talking were probabley things that a year ago you never would have imagined. Like you we notice each little new thing that ELizabeth does and I know we get scoffed at for making a big deal and for spending so much time with her. Oh well I will never be faulted for not paying attention to her.
We too have lost many friends on our journey and it has been painful but we also have some friendships that are stronger and that we never take for granted.

Sarah Furlough said...

What amazing Mommies you have, Miss Hallie! How lucky are you to have 2 smart, loving and beautiful ladies to lead you through this world!

Abby & Sharon, if not having a preemie, and not going through the heartache meant we didn't celebrate each victory (no matter how small it may seem, to others), then I wouldn't trade what we've been through for the world. Our losses, and our gains (as parents of extraordinary children) make us appreciate every hard-fought battle. So really, how lucky are we?!?!

BTW, Laura is so right, never underestimate the Amazing Hallie! What a miracle, what a gift!

Heidi said...

Hallie (and her family) never cease to amaze me. :) I love the photo of Lea giving her big sister kisses, the peek at Hallie's expression is sweet.

Happy Birthday!! I look forward to pictures...

Anne said...

Being the parent of a micro preemie/special needs child has caused me to make some tough decisions about the people I welcome into our lives.

People who I thought would be supportive have sadly been downright fearful it seems of Eliza's special needs, as if it were catching somehow. I likewise have been surprised by people who I least expected to be supportive becoming some of Eliza's greatest champions.

The former group will lose out by not getting to know a wonderful little girl.

Jo said...

Great post. I love the idea of "not sweating the small-minded."

I think Hallie is doing incredible. Full sentences, eating, pretending...that's incredible.

Good job Hallie! And good job mommies!

Vicki said...

I registered just so I could leave this comment.

I am a 56-year-old grandma who started reading blogs a couple of years ago during my daughter's pregnancy with my first grandchild. She has already had grandchild #2 and is too busy to do much reading of blogs, but I, on the other hand, have become a devoted follower of several blogs. Yours is one of my favorites. Your writing skill is only exceeded by your parenting skills! When I see that you have a new post on your blog, I am so pleased. I feel like I am reading a note from a friend. I love the way you write!

I cannot tell you how much I have learned from your blog. Until two years ago, I knew absolutely zero about premature birth and the challenges that it presents. I was one of those who thought that premature infants always "caught up".

I may as well also admit that I knew absolutely zero about same sex parenting, and for some reason, thought that it was somehow "different" from parenting as I knew it. I know, I stupid was that. What can I say....I'm 56 years old and from West Virginia ! : ) I am not embarrassed to admit my prejudice and hope that you will not be offended. (From what I can tell about your personality from your writing, I know you will not be, but I don't want to offend other readers.)

Just assume that everyone who makes an "ignorant" comment is just that -- ignorant -- and that simply getting to observe a little bit of Hallie's life is just so enlightening and gratifying in so many ways.

You are probably not particularly interested in serving as a teacher to others, but by living your life and blogging about Hallie's, you certainly are.

I'm starting to babble here...
But, I do want to say that Hallie is a LUCKY girl with parents like you and Sharon. (I don't even know your name! ha! What kind of a blog reader am I??)

Vicki in Tennessee

Michele said...

I just got done reading your post...I am crying my eyes out. My husband and I are going through the exact same thing with Kenny. He was born at 23 weeks, lost his twin and is now really behind. He isnt walking, not talking...just yelling ahhhhh and stuff, cant eat any solids because he throws everything up, wont wear his hearing aids, bangs his head on the ground to the point of giving himself bruises, the constant breathing treatments...2x a day, everyday...we're tired. I sometimes want to give up but then he crawls over to me and smiles...OMG...I just love him. He beat the odds, he is here. His twin is right by him(in spirit) and helping him through the tough times (I am hoping). We dont know what tomorrow will hold for us, so thank you for opening my eyes and just enjoy what is right here, right now.
Your Hallie and our Kenny are true heroes and miracles and will show the world!
You both are awesome parents!