Sunday, June 26, 2011

One year ends, another begins

A year ago today I was staring at a white board in the labor and delivery room, staring at the date a nurse had written in black marker.

Was that going to be the day?, I wondered. Was that going to be what I would write a million times? Was that how I was going to respond time after time throughout the years whenever anyone asked me their birthday?

The date looked so innocuous on the board like that. It was hard to believe the weight of weeks of worrying and striving to just make it a little longer would finally be felled by that day. That day, the day that I had waited for anxiously, was finally here. I was frightened, but also relieved.

I loathe myself for that relief. I didn't know then what I know now. I didn't know that Malachi would suffer his whole life because his birthday came too early. At that time, the prematurity was just an abstraction. Some time in the NICU, the docs said, but they would be OK. We were two weeks passed the really dangerous time for premature babies.

But even though I didn't know for sure like I do now, I remember the near-constant anxiety, the vague fear that hung in a cloud around me. Even now, as I write this, I can feel the creeping anxiety returning. My bones hurt. My stomach is sour. My heart is pounding. Tears come unbidden to my eyes.

I still haven't fully processed what happened to me and my children last spring and summer. I thought I would be able to do it now, a year later, but it's still too hard. How do I find the time to sit down and probe the darkest pain I have ever known? Where is that spot on the to do list and how much time should I schedule for it in between playdates and chores?

It's so much easier to ignore the pain and instead to turn to celebrations. A year. We made it, little tomatoes. There were so many times when I wondered.

We know so much more now about Malachi. Many of our deepest fears have been laid to rest — no grande mal seizures, probably no wheelchair, probably average intelligence (this is what we believe; doctors have promised us none of this). But there is so much we don't know. What will he act like? What will he be able to do? What won't he be able to do? So much is still unanswered.

And as we close this first year of their lives, we also come closer to the end of our private affair. Nobody expects a baby to do anything or be any certain way. Jerky, uncoordinated movements, drooling, the inability to stand or walk — all of these things are expected and even cute when it comes in baby form. Soon, it will no longer be expected, no longer be cute. The waitress who makes fun of him for being rather vacant and the store clerk who says his drooping head makes him look "sleepy" soon won't dare to say the same things.

I dread the day when I look into the eyes of a stranger commenting on my twins and catch the glint of recognition that something isn't quite right with one of them. I'm terrified of the moment I see a smile from another mom falter when she realizes her joke about my son's behavior is in bad taste because, no, actually, he can't sit up on his own.

But it's coming. Oh yes, it's coming. By this time next year, it will be obvious to anyone that Malachi has problems. By this time next year, we will finally have a real look at what his cerebral palsy will be, how it will affect his daily life.

Time marches on. Even through the endless days of bed rest and the horrific pain of labor and the even more endless days in the NICU, time marches on.

So we rejoice in the passage of time and we ignore the bumps and bruises it gave us as it went passed. We celebrate, because it beats the alternative.

Happy birthday, my precious miracles.

You don't know how much I wish it could have been a different day.


Malachi, hours after birth.

Jaden, hours after birth

8 comments:

  1. When that day arrives... Malachi will know he is blessed with a strong, loving mother. Only she could have written the beautiful story I read today. He is here to teach them... and he is not alone, nor are you.

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  2. Happy Birthday! Oh, and you will get by without too many comments for another year or two - more likely they will think they're not twins, and I'm not sure which is worse. Hugs!

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  3. Yes, I know what you mean! It's a part of my daily life now. I take the two of them out and people look really confused and then cautiously ask if they're twins, to which I respond with a "yes". And then it gets kind of awkward from there, although I've been trying out different tactics to prevent or diffuse the awkwardness. One of them, I've picked up from other blogs, is to just not look people in the eye, to stop looking around self consciously to see if someone is staring. To just go about my life as if nothing is wrong in the world--I picked this tip up from other blogs. I suspect by the time my twins are two, nobody will even ask whether they are twins anymore because their differences will be so amazingly vast (they already are).

    By the way, that's gotta be so hard to think that you made it two weeks past the danger zone to find out something had, indeed, gone dangerously wrong. I think it's similar to how my husband and I were so relieved when we realized that Andrew didn't have any brain bleeds or anything. His brain was premature but very nice for the first month of life, even! We thought that we were neurologically in the clear. And then, b'ah, infection hits and it all went down hill from there.

    Love your blog! :)

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  4. Stacie: Thank you, that's so beautiful.

    Fischer: Thanks! It's good to hear from someone who's walked this path.

    EarlyBirdies: Yes, I've often heard that how you act about it is how other people will react. If you act like it's normal, they will too. It's just so hard to not feel like everyone is staring at you.
    And yes, it was enormously hard, especially with spending 10 weeks in fear and then finally relief that things were going to be OK. That first week we even had a neonatologist say that she fully expected us to be able to take home two healthy boys in a few weeks. I am still grateful to this day that she gave me a week without worry... the eye of the storm.

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  5. Anonymous1:55 PM

    Shasta, on a different blog, I found a donation button and tried to donate. It kept insisting that "because I have a paypal account" I can't use a different credit card. I tried two different credit cards, but it kept saying the same thing. But I don't have a paypal account! I've never had one. So what is going on?! Clues? Have others had this problem? Has it been solved?

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  6. Hello Anonymous, I don't know who you are or how to get in touch with you, but yes, donations are gladly accepted through the PayPal button. It sounds like you are having trouble with this though. See if you can find a "log out" button in case someone else has signed in? Otherwise, you can e-mail me directly and I can give you our mailing address. That way PayPal doesn't get a fraction of it anyway. Thank you, whoever you are!

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  7. Anonymous4:40 PM

    Darn! I tried to copy the address of the news video I just saw today (10-27-11), so you'd pull it up if you haven't already seen it. Found it on msnbc.com about Twins Wrongly Diagnosed with Cerebral Palsy. Turned out to be some kind of L-Dopa disorder instead, which is miraculously treatable with medicine. I know; I know... keep dreaming. But what a wonderful dream!

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  8. Hey there Anonymous,

    Thanks for taking the time to do that. A treatable hormone condition sounds awesome, but Malachi did in fact have brain damage as documented by an ultrasound. Too bad. :(

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