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Friday, October 3, 2008

Adjusting (Happy Second Adjusted Birthday!)

Today is Hallie's and Olivia's should-have been second birthday. It's amazing, and a bit frightening to me, how quickly time flies. Didn't we just celebrate their actual second birthday? And can it really be four months since Hallie started talking, nearly a year since she started walking, and just shy of two years since she came home from the NICU?

October is always an emotional month around here, and it always creeps up on us. The overtly traumatic nature of June, when Sharon went into labor with the girls at 23 weeks even and had them four days later, eclipses that more subtle sorrow of October. The joy of celebrating Hallie's actual birthday--for she has unexpectedly come so far and so single-handedly demonstrates the adage that statistics have no bearing on the individual case--to some extent tempers the bittersweet nature of June, which is indelibly tainted by the sheer horror--for there is no other word--of our twins' birth and the awful roller coaster ride that ensued and the loss of our sweet Olivia Skye. We sort of forget about October all summer long, and then here it is: the day that the girls should have been born, the day that would have likely signified their auspicious start in life. Way back when, two plus years ago now, our goal was for Sharon to give birth no earlier than Labor Day. We figured that twins would come sooner than would a singleton and that 36 weeks would be term enough for them. So we were planning on an early September birth and anything after that would be icing on the cake, so to speak. Not in our wildest nightmares did we consider that the Fourth of July would look like an acceptable vantage point from where we found ourselves just over two years ago.

October does have its up sides, though. Hallie came home a week after her due date, on the 10th of October, and though she had tubes and monitor leads attached to her and though she was so small--she looked like a giant to us, but very frail to the rest of the universe; our excellent pediatrician recently admitted to us that he was quite overwhelmed by her size when he first met her--we knew that she was going to make it once she was discharged from the ICN and into our arms. And October is, in a lot of ways, Hallie's favorite month because it ends with Hallowe'en, which is apparently her favorite holiday.

We are hoping that October is a quiet month around here this year; we are almost certain that the drama of last October, when Hallie could keep almost no food down and when we were slowly losing our minds from this and from the sleep feeding that Sharon did in order to keep our girl growing, will not be repeated this year. We've learned so much about how Hallie's system works over the past year and this empirical knowledge serves us well. Our little girl is a heck of a lot happier this year than last, something that struck me quite vividly as she and I cuddled before her bedtime bottle just a bit ago. Her color is better, her mood is vastly improved, and she is developmentally a very different kid than she was on her first corrected birthday. This by no means implies that we accept that ridiculous notion that preemies are "caught up" by age 2. We still see differences between Hallie and her full-term peers, and we're still quite vigilant about making sure that she has all of the resources in the world available to her, particularly where speech and language communication are concerned. But all in all, we know we are blessed and we know we are lucky. And, for the first time in a long time, after the nice stretch of pretty smooth sailing we've experienced over the past month or two, we're feeling optimistic that we can get this food allergy thing under control and keep ahead of it.

We are also hopeful, in a guarded way, that this pregnancy will at least outlast the previous one for Sharon. Sharon will be 22 weeks tomorrow, and we're on high alert for any problems, but things have been pretty good for the past couple of weeks. We're taking it one day and one week at a time right now, and are breaking our long range goal (a full term baby) into more manageable interim milestones (like it would be nice to reach the traditional milestone for viability, which is 24 weeks, this time around, and then we'll set our sights on having a third trimester).

And finally, we are grateful, on this adjusted birthday for the things that parenting Hallie has brought to us. We've not only learned a whole heck of a lot more about the worlds of science and medicine--things that I suppose are useful, though I wouldn't have minded not knowing them--but parenting Hallie has made us better parents. We are more patient, thoughtful, and forgiving people and I think that Hallie has also taught us a lot more than we would have ever otherwise learned about not just paying lip service to accepting difference and such (for better or worse, depending on your perspective, Sharon and I are educated East Coast liberals and so the language of tolerating difference is something with which we've both grown up, more or less). Parenting Hallie has made this into a lived experience for us, and that is an unmitigated good thing. We would have raised her to be a nice kid (we hope!) and most certainly would have taught her that everyone out there is equal, regardless of their visible or invisible disabilities and differences, but I am not actually sure that we would have come into as much close and personal contact with people with disabilities and translated the abstract construct of 'accepting difference' into something that she--and we--actually live. I was just saying to Sharon tonight that, had it not been for Hallie and our concerns about her speech and language development, we would have probably been just like every one of our other friends: we would have talked about, and perhaps even taken, a Baby Signing class or two, and perhaps bought a book or two about sign, but we'd never have embarked on teaching our child--or ourselves--American Sign Language or made signing part of our daily lives. And this 'accepting difference' business is not just about accepting those who are differently abled, either; parenting Hallie has brought me into a world where I am in very constant contact and interaction with many parents whose worldviews--religious, political, spiritual, geographic, what have you--are vastly different from my own. Getting outside of my own comfortable cocoon of accepted beliefs is a good thing; I have learned to appreciate all sorts of differences -- and not just tolerate them -- as a result of being Hallie's mama. The circumstances of Hallie's and Olivia's birth still remain traumatic and awful, to be sure, and there's nothing that I would not give for their adjusted and their actual birthdays to have coincided. But in the spirit of making lemonade---and really much more than that---from lemons, the good things that we have gotten from parenting Hallie do matter and are things that I hold very dear as I reflect on Hallie and Olivia's should-have-been birthday tonight.

So even though we're no longer supposed to be adjusting Hallie's age anymore, and even though we've adjusted -- more or less -- to the new normal, I cannot help but think about all of these things tonight.
On a more mundane, but very significant note: we're now on 121 vomit free days around here, which places 150 totally within reach!


Cora said...

It still is such a bitter sweet day, isn't it? It just makes you stop and think what could have been... We totally understand your emotions, and you're right, our girls have made us much better parents. So here's to them, and their continued fight to beat the odds!

Sarah said...

Happy second-second birthday, Hallie!

I know what you mean... I find that my September is like your October.

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

What a beautifully written post. Your love for both you girls runs deep and what an amazing little girl Hallie is!

Billie said...

I just love your last paragraph about accepting differences, and seeing the world of disabilities in a new light. I feel the same way.

I also love the analogy about making lemonade. You know, I remember reading elsewhere where someone used that analogy in a negative way, kind of "accusing" micropreemie parents of "making lemonade." I always wondered what the heck else would I do? Let my lemons rot??? I'll take lemonade anyday!

Anne said...

Happy birthday (again) Hallie! I don't think any of us will ever forget these "second" birthdays.

Jake's Mommy said...

Wow, what an incredible and moving post!! Please pass along a big happy birthday from Jake to Hallie and a big hug to both you and Sharon from the two of us. Looking forward to seeing you on the 25th and helping you make more happy memories in this month of October and many more to come!

Kirsten Wood said...

You've done it again: make me cry, laugh, and think, all in one post. I feel very grateful that you are sharing so much of your journey this way. Reading it is not just a great way to keep up with your family, it's also an education, an inspiration, and a reminder always to be grateful for what we have, no matter how much we also mourn.

23wktwinsmommy said...

Beautifully written...very moving!

Mommato4miracles said...

Happy BELATED birthday Hallie!
You guys are an inspiration. And although I do not have a micropreemie, I so can sympathize with having to deal with so much more than the "typical" baby would be. And I am so thankful for my Sam, and for all he has taught me. About unconditional love, understanding, patience, and to rejoice in even the little things. We hope to one day have a count (as you do for vomiting) of diarrhea free days, maybe someday that will be in our future. What an amazing little girl you have. Beautifully written. Praying for a 30+ weeker (heck why not 40+!!!- that was my goal:-)

Sarah Furlough said...

Happy second 2nd birthday, Hallie! Thinking of you all and sending hugs your way!

Proud preemie mom said...

I both love and dread should've been birthdays. I have never posted before Abby, but visit often-and wanted you to know this was such a beautiful post. You guys have come a very long way in a year. Here's hoping fall kicks off an even better one for you, and a very long third trimester for Sharon. Best -
Liz and Luke

Laura said...

okay, i have been under a rock! your family is growing!!! how awesome is that! i will definitely be thinking of you guys and thinking and praying happy, healthy gestating thoughts for sharon.
this post is bittersweet indeed but beautiful!