Thursday, December 29, 2011

My Little Pirate

I told you I'm reading this book called Momma Zen (which I highly recommend) and I've been dog-earing pages that I want to revisit. One page includes the quote "I still have troubles. They're just not a problem." It's in a chapter about acceptance and how everything is just as it should be and would be just fine if not for our critical commentary. It suggests we "practice acceptance on yourself so you can be kinder with your child. Practice nonjudgmental awareness of your life so you can save your loved ones from the cruelty of your own impossible standards and your hard-hearted disappointment. Practice greater faith and lesser is full of fits and starts. Some things are easy; some are not. Some things go and some things stop. Do your work; then set it down. There are no failures. Forgive and forget yourself." (page 41)

This chapter resonated with me because I know that I focus too much on my troubles and make them into problems, and I so admire the few people I know who seem to take everything in stride and with a good attitude. I do have impossible standards. And I never, never set my "work" down. And I make everything "work." And Milo, Michael and I--and pretty much everyone else that crosses my path--all suffer for it.

But take heart--awareness brings with it the possibility of change. Today I was home sick with Milo. The nanny is off this week, and I had taken time off as well, with visions of spending more joyful, work-free time with Milo in the aftermath of the hectic holidays. Instead, we stayed in bed until 1:30 in the afternoon. And then took another nap or two later in the day.

And every time I woke up, I thought of the presents strewn about the kitchen, mixed in with the dirty dishes. And the growing mound of laundry that needs doing. And how I had planned a fun outing with Milo and I was wasting my time off from work.

And then I stopped.

And I thought about how much my body needs sleep, and how much my son needs my comfort. And how much pleasure it brings me to cuddle with my son. Halfway between him and sleep is a wonderful, peaceful place to be. And so I lingered there and let the rest melt away.

And the dishes didn't get done, and neither did the laundry or the groceries or the outing. But if the point was to spend time with Milo, then everything worked out just the way I wanted it to.

But I can't pretend I'm not sitting here wishing that my house was clean. Because it would really make me feel better if it was. But I'm going to try really, really hard to focus on what matters this year and learn to let go a little bit.

I've been really struggling with Milo's eye condition, which is as of now still undiagnosed other than being farsighted. I was hoping that I wouldn't pass along my eye condition to Milo, but it does have a genetic component. Oh how much trouble my eyes were growing up. The coke bottle thick glasses that made me look every bit the dork that I am. The crossed eyes that elicited so much teasing. The self-consciousness that still prevents me from looking people in the eye...which also prevents me from remembering their name, which only leads to further self-consciousness. And the photos. I, the lover of keepsakes and photo shoots, can not take a good picture to save my life. One eye is always drifting off, and that's the only thing I ever see in the photo. Honestly, it kills me. I love pictures more than anyone! I just don't want to keep any that showcase my wandering eye.

And I sure don't want my son to go through all of that.

I had an eye doctor who was always so amazed at the amount of reading I do, given my condition. Most people without binocular vision apparently don't love to read because it's so much work for their brain to translate the images coming in from the eyes. It gives them headaches and fatigue. But reading has always been my refuge. I'm worried it somehow won't work that way for Milo. And I want it to. Because I credit my love of reading with most of my success in life.

So obviously I turned out okay. And I know that, of all the things your kid could be burdened with, this is not that big a deal. But then again--it's his EYES! You only get one set.

So I was especially paranoid about his eyes, and we started noticing them turning in pretty early, but everyone said all newborns' eyes do that, so we waited. But then at five months, my best friend gently commented that she had noticed too. It was getting more pronounced and consistent. I took Milo back to the pediatrician and she agreed we should have it looked at. In my time of need I turned to google, of course, to find that Children's Hospital Boston has a national reputation for pediatric ophthalmology...and an office ten minutes from my house. What luck! We got an appointment with a lovely man who took Milo's face in both hands and exclaimed how cute he was. I immediately liked him. He dilated Milo's eyes, and found that he was farsighted, so he prescribed three months of glasses and patching before we talk about surgery. To be honest, I was ready to leap to the surgery. Because I don't want my son's eyes to be crossed. I don't want him to look less than perfect. How's that for pressure to place on a six month old? What kind of mom am I? I had read that the surgery had the best chance of being successful if done before a year, because the brain is making neural pathways or some mumbo jumbo, and I know in my heart he'll need the surgery, so I'd rather do it sooner than later so it has the most chance of being successful.

Perhaps unsurprisingly, they don't rush to slice open an infant's eyes. So we're patching Milo's right eye for 1-2 hours a day and he wears glasses daily, all day. I was so worried this would strain our relationship, as I imagined we'd fight Milo all day to keep the glasses on. I felt so bad because the day he was supposed to start wearing him he slept past the time I had to leave for work and the nanny had to put them on for the first time.

But she sent me a picture later that morning with a text that said he tried to take them off for about ten minutes, and then just moved on. That's my baby.

The patching is much the same. Milo hates having the patch put on, but once I get it in place, he lets himself be easily distracted and moves on to something interesting. Some days it irritates him more than others, and then we take it off after an hour or try again later.

We have yet to take him out with the patch on though. We time it around when we can be home playing with him. The nanny, I'm afraid to confess, is braver than we. Perhaps because it's not her kid. She brazenly takes walks with Pirate Milo and I both love and hate her for it. What is wrong with me? I've dared myself to talk about it with anyone and everyone because there's no shame in this. And everyone seems to know someone who has patched. (and lived.) But talking about it is one thing. Talking about it while my kid is right there for strangers to gawk at is another.

I'm working myself up to it.

The glasses are so much easier. They are "normal" enough, and truth be told, he is even cuter in glasses. Everyone says so. Except they don't seem to do much for the eye turn, which is just as pronounced.

I recently had an eye exam of my own, and I spoke with my doctor--who specializes in strabismus and vision therapy--about Milo. I was surprised to find him adamantly against the surgery I am in such a rush to get Milo signed up for. He says there is absolutely no research that says it's effective. That maybe it helps cosmetically in a temporary way but that many people need multiple surgeries and it does not create binocular vision. He said that vision therapy is much more likely to be effective, only it's never prescribed because it's not billable and insurance doesn't cover it. I cautiously asked about the cost...around $140 a pop, every few weeks, possibly for a few years. He also suggested taping over the middle part of both lenses in Milo's eyeglasses, forcing him to use both eyes all the time (whereas the patching only requires him to use one eye for a few hours a day.)

I hate myself for cringing at the thought of that kind of commitment. I think back to the allergy shots I had weekly for four years as a kid. They sucked for me, sure, but I had no where else to be. My poor mother, though...the scheduling havoc that must have caused! No wonder so many families opt for the one time surgery with the cosmetic results that are covered by insurance. It's not only more affordable, but also more convenient. Fast results! I want instant gratification where my baby's eyes are concerned. (And everywhere else, if I'm being honest.)

So he suggested I have my old eye doctor, who I had a longer relationship with, check Milo out. It turns out she is actually pretty famous because one of her adult patients recently wrote a book Fixing My Gaze about gaining binocular vision as an adult through vision therapy with this eye doctor. I had no idea! But she's only an hour and a half away and I trusted her (perhaps in no small part because she acted like I was a little bit of a miracle with my persistent love of reading) and so today I called and got Milo an appointment for a second opinion with her.

I had asked my pediatrician if I should be getting a second opinion and she had seemed at a loss. Many parents would, she conceded...but I had gone to Children's for the first opinion, and they're considered the best of the best. So now I have no idea what I'll do if my old eye doctor agrees with my new eye doctor that the surgery is pointless. How do you know who to trust?

I do know that I won't blink at spending the money (and time! ouch) on years of vision therapy for Milo. I read an article by the author of the Fixing My Gaze book about what it was like to see in 3D for the first time. I'll never get to know that, but I want my son to. I want him to look people confidently in the eye as he shakes their hand, and I want him to stand straight and proud in photos.

And that means that I have to consciously stop "hiding" his turned-in eye. I need to be okay with taking him out in public wearing an adhesive patch over one eye. I certainly don't want to be sending him some kind of subliminal messages that he should be ashamed of his eyes.

I didn't even realize how much I was until all this happened. I was so upset at the eye doctor's office that day. Michael let me spend hundreds of dollars on two pairs of eye glasses for Milo because I didn't like the ugly "safe" rubbery ones and wanted to get Milo the cute, metal frames instead. Despite the fact that once he starts crawling, he might be smushing metal frames into his face on a regular basis. Mommy of the year, here I come. Vain much? I can't help it. I want my baby to be as cute and perfect to the outside world as he is to me. I have no idea why I care so much what everyone else thinks about him, I really don't. All I know is that I couldn't stop crying that day and I didn't even know why. The whole episode just triggered such an intense, deep-seated emotional reaction in me.

And while I was explaining the whole thing to my current eye doctor, he looked me straight in the eye and told me Milo was not imperfect. And my heart lurched a little. I explained that I didn't want Milo to have the experiences I had. And he looked me in the eye again and told me I wasn't imperfect.

But the truth is, I think I am. I like to think I've come to terms with it, and most days it doesn't bother me at all. I've turned out just fine, after all, and I'd be happy as a clam if Milo finds the success and happiness I've found in life. But then there are days where I see myself in a photo and cringe too.

So the lesson in this must be somehow related to finding a deeper level of acceptance of my own eyes, so that I can offer that level of acceptance and kindness to my son, so that he can grow up feeling just as "normal" as the next kid.

After all..."we all have troubles. They're just not a problem anymore."

So I'm striving for that...not letting the troubles be a problem. Which means soon my fiercely-loved pirate and I will be hitting the streets, looking people right in the eye, and offering a cheery "ahoy, matey!"

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