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Archive for May, 2009

My New Normal

I hate to harp. Scratch that, I love to harp. I love to work problems over and over in my mind (or Google) until they become like a piece of driftwood that has been worried by the tides for years and years and is finally smooth and edgeless – only then can I finally discard them. But, as you know, worry doesn’t change anything. As I described a few posts ago, I have been choosing a different path. It’s my own thing: a blend of optimism -as in I have every reason to believe that Sadie will be fine and progress; an adjustment of expectations – developing much more slowly than her sister is another form of fine; needing a few years of therapy and possibly having a learning disability or other challenges is also a form of fine. Is it fine like I’m throwing a parade and princess waving from atop a float to show how awesome it is that my baby isn’t meeting her milestones? Not exactly. But it is what it is.

Many moons ago when I was pregnant with Elby, I thought the worst thing that could possibly happen would be to find out my daughter had Down syndrome. “God, how horrible! How utterly un-doable that would be,” I thought as I obsessively read Baby Center boards for people who were pregnant with Down syndrome babies or had Down syndrome children. Somehow in my mind I think there was this “perfect” experience that having a child was supposed to be. In part this might have led to my postpartum depression (okay that and my fucked up genetics – bipolar father anyone?) but it also led to a faulty belief that because Elby was “normal” everything was fine (there’s that word again, right?).

What I’m finding out is that Sadie is fine too. More than fine. She freaking adorable. And people with a child with Down syndrome? They love their children every bit as much as I love mine. They too want to eat them up and help them have the best opportunities they can. That’s obviously a different situation, one that must be filled with its own very unique heartbreak and challenges, I’m not speaking as someone whose been there. I’ve been somewhere else, but that somewhere else is just a short flight. We’re all a short flight away from something totally different. Does that even make sense?

A few days ago, I took Sadie to see her GI, Dr. Edelstein (she’s brilliant and might I add that she had twins in December and already is a skinny bitch). Dr. E thinks Sadie is doing great but sat down with me to go over everything that happened in my pregnancy (which she determined was more complicated than originally thought) and everything that’s gone on with Sadie since. She is referring me to an Endocrinologist to make sure that she is producing growth hormones and that there is no underlying hormonal issue that may be affecting her growth. Sure, I’m in.

Then she said I could also go to a neurologist and have a brain MRI because it’s very possible that Sadie was compromised of oxygen in the womb. Apparently the good news -oh yeah, you didn’t think there would be good news following that did you? – is that babies who have brain…I don’t know…shit going on? Are often able to heal and be fine. Something about the brain rewiring itself to work around the problem. I don’t really know please don’t quiz me on this. Anyway, the brain MRI could show if there’s damage.

“So, say she has damage,” I said to Dr. E. “What then?”

“Well, nothing more than you’re doing. We can’t treat it. But it would explain her delays.”

“Yeah, then no. I’m not putting my child through an MRI so that I can have it confirmed that she has delays. If it won’t change her therapy then who cares?”

YEAH, THAT WAS ME SAYING WHO CARES. If you know me, you know how awe-inspiring that really is. And I expect kuddos. Because this is about me.

“Great. I don’t think you should do the MRI either. I think she’ll be fine.”

But you see, she already is fine. She’s Sadie.

And tomorrow she gets her speech therapy evaluation. I hope the first words she learns are “suck it bitches!”

Posted by Stefanie Wilder Taylor on May 15, 2009 8:54 pmSadie38 comments  

My Babies Look Good in Hats

I’m finally going to have to accept that I have twins. And people that have twins are supposed to do dorky stuff like dress them alike and put them in coordinating hats to make sure everyone fully understands their twinness. So fine, you win. You all win. Happy now? Answer me. Are you happy you’ve turned me into someone who puts my children in situations just to exploit their cuteness and get good photo ops? I hope you’re pleased with yourself.

So this is for all you people who’ve stopped me on the street, in the mall, at the doctor to say “Are they twins?” and when I say “Yes” you don’t have the good sense to just say, “Oh how cute.” Instead you say things like, “Really?” in a tone that makes it seem like you suspect I birthed them on Mars or “But they they can’t be twins because they are such different sizes!” How am I supposed to respond to that? “You know, upon furthur inspection, maybe they aren’t twins after all. Thanks for the heads up on that! I’ve got some calls to make!”

So this is for you naysayers! My bitches look good in a hat! And they are twins despite the seven pound weight differencial. Put that in your pipe and smoke it. Now shut up and knit them a hat.

Also, if you want to read the funniest recap of Celeb Apprentice, may I suggest you go here?

Posted by Stefanie Wilder Taylor on May 12, 2009 6:43 pmTwins42 comments  

Regarding That Last Post…

Just because I’m not living in the worry of Sadie doesn’t mean that I didn’t feed her Haagen-Daaz full fat ice cream for dinner last night. Because I did. Vegetables are overrated when you weigh 17 lbs.

If you’re wondering what happened on Idol last night please go here. Also, while you’re there you can read one of the funniest recaps of Biggest Loser I’ve ever seen.

Posted by Stefanie Wilder Taylor on May 6, 2009 9:25 pmUncategorized13 comments  

Acceptance

My little Sadie. Something is switching over in me. Slowly but surely I feel more present with you rather than hovering anxiously somewhere above you constantly gauging your calorie consumption, your development, your size, your very essence.

Up until too recently you’ve been more a sum of your lack of met milestones, un-gained ounces, therapists’ concerns, doctor visits, possible syndromes.

I admit, I am a natural worrier. I’m Jewish. I was born this way. From the time my DNA was formed, I probably started worrying about being born, I’ve never been good with change.

I worried about your big sister fairly constantly when, in retrospect, there wasn’t much to worry about. With you, there’s certainly been cause for concern. You are “globally delayed” they tell me. As if they need to tell me. You need speech therapy. Isn’t that funny? You aren’t even a year and a half and you will soon be receiving speech therapy because the doctors are concerned you “have no words” yet.

My little Sadie. There is no diagnosis for you. You were an IUGR baby. That means you didn’t get the proper blood flow from your cord and you didn’t get the proper nutrients from my placenta (rather your placenta). To add insult to injury, you developed a fungal infection in your esophagus which made it painful for you to eat for your first few months. Is any of that the reason that you are well behind other babies your age? To be honest, we just don’t know. Will you eventually catch up? Like a Magic Eight Ball all signs point to yes but, we don’t know for sure.

Isn’t that the craziest thing? We. Don’t. Know. I can Google “small baby” all day -every day if I choose, take you to a developmental pediatrician or four if I choose, have you genetically tested if I’m curious. But in the end, I still won’t be able to predict your future. That thing I absolutely have the hardest time tolerating, that thing that crawls into my chest and squeezes so tight I have trouble feeling anything but fear, that thing responsible for the self protective walls going up, that thing called The Unknown, is now something I have to partner with for the long haul.

But there is plenty of positive, you are progressing and that’s the part that’s finally starting to sink in. A couple of weeks ago, your physical therapist said you may not walk for a few more months. But guess what, you started walking a week later. You walk all the time now. In fact, you love to push your twin sister who outweighs you by seven pounds around on your princess push toy. You also babble like a motherfucker. You surprise me every day.

My little Sadie. After all my vacillating we went ahead and got you the g-tube and everyone including me was hoping there would be some miracle growth spurt. But you stayed on your own special curve. As Randy would say, “You’re doing your thing, dawg.”

And I am grateful to be along for the ride. I’m grateful to be a part of your life. I’m grateful to be the mommy of a very special little girl. I’m not waiting for a miracle anymore because, as downright corny as it sounds, you are a miracle. Your grin lights up my whole world. Even more so because you were unhappy for so long. Yeah, I sound like one of those dippy ass Blue Mountain greeting cards. So sue me. I’m just learning that your difficulties make you even more amazing. Your smile is unrivaled. My favorite song is your maniacal laugh. You hate baths. You love books. You are fascinated with trying to climb into the refrigerator. You are so over vanilla Pediasure. When you open and close your hands along with my sorry rendition of Twinkle Twinkle Little Star, I feel like I won a hundred dollar scratcher lottery ticket.

This is something brand new for me, Sadie. We are both facing challenges within ourselves. And you are handling yours with aplomb. I could learn a little something from you.

My little Sadie. You are not “not on the charts.” You are uncharted territory. Waiting for me to discover.

H, if you are reading this, it sucks that sometimes it takes someone losing something/someone so precious to realize what you have. And how fragile and unpredictable it all fucking is. I dedicate this to you.

Posted by Stefanie Wilder Taylor on May 4, 2009 6:41 pmSadie49 comments  

Check it out bitches

Seriously, if you want to laugh check out www.realityroadkill.com It’s getting hit out of the park. Not just by moi.

Posted by Stefanie Wilder Taylor on May 1, 2009 2:19 amUncategorized3 comments  


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