Monday, February 27, 2012

Watching Her Sleep

One of my favorite parts of vacation is always the "family bed." If you've been reading my blog for long, you know that Sammie B slept with us from when she was about 1 until she was 2 and that the transition to her own bed was very, very hard (for me!). There's just something about having her right there, sleeping next to me, that is so, so soothing. I love the idea of falling asleep with my most favorite people at the end of the day (though I know sleeping in her own room is more developmentally appropriate at this time in her life!). Anyway, on our trip to Florida, there were a few nights where me, B, Sammie B AND Mia all slept in one bed. Besides the (slight) claustrophobia, it was my heaven. For real.

But one night, I just laid there watching Sammie B sleep -- with her two donkeys (which she sleeps with every night) and an apple (which she insisted go to bed with her that night), and the tears started flowing. While my little family slept all around me, I laid there, and I cried.

I cried because that night at dinner, B's great aunt asked me (in front of Sammie) "she doesn't walk yet?" (I nonchalantly said, "she does with assistance!"), but then she went on . . . "does she understand when you talk to her?" and "will she be able to read?"

Now, I get it. I do. I get why she asked, but I wish she wouldn't have. I just said "yep!" and moved on, and fought the urge (as I do in those situations) to go into detail about her various developmental evaluations or to start listing all that she knows. All that she understands. That she can count to twenty in English, ten in Spanish, recognizes almost all her letters, knows the alphabet, and has nearly every one of her story books memorized. That sometimes, I don't even think she's listening, yet she remembers details that blow me away. The thing is, even if she didn't know all that stuff, even if she didn't "understand," she'd still be our magical Sammie B. But the reason that question rocks me to my core is that I know that that wasn't the first and won't be the last time my girl is underestimated. That someone has assumed or will assume she doesn't "get" something.

I cried because I know the world may not always see her for what she knows and what she CAN do, but instead for the things she can't do.

I cried because a few nights before that, we met another family in the ice cream shop by our house, and I caught the mom staring at Sammie B's leg braces. I cried because I'm starting to notice those looks, those stares more often.

I cried because the world isn't always a nice one and I can't pave an easy path for her, and that makes me feel powerless.

I cried because in so many ways, she is just like every other three-year old girl. She loves jokes. She loves to giggle. She loves the park. She loves swimming and playing in the sand. She thinks her dada is the funniest man alive. She loves to dance (especially with her dada). She loves Dora, and Strawberry Shortcake and Minnie Mouse. She doesn't like naps or bedtime or brushing her teeth. She's stubborn and says "no" to anything B or I (or her therapists) suggest that wasn't her idea first. Typical in so many ways, yet I worry that the world will see the "atypical" about her first. And that just sucks.

I cried because what (so far) seems to be "typical" development is unfolding in front of us (with Mia) and sometimes, it stings. Sometimes, I can't help but think, "Sam had to work so hard to do x, y or z," and it feels a little bittersweet to watch those same things just happen. And I feel guilty having those thoughts. I WANT to let each girl's journey be their own, and I thank my dear friend K for her sage advice -- I can't fall into the "why didn't it come this easy to Sam," or "Sam *should* be doing x," thinking because then, I won't be able to enjoy either of the girls to the fullest. Instead, each of them is who they are. Who they are meant to be. Sammie B is Sammie B, and Mia is Mia, each with their own journeys and destinies that only they can reveal. Each of them equally awesome, neither of their journeys are any "less than" or "more than" simply because their "cant's" and "cans" may differ. (Oh so thankful for the dear friends, like K, that I've made, friends I wouldn't have if it weren't for Sammie B's unique journey).

I cried because lately Sammie B is having an even harder time focusing her eyes, and that also just stinks. Stinks. I don't want her to have to work so hard for that. We've made an appointment with Super Doctor (our pediatric neuro-ophthamologist) and I fear that another surgery will be required. I also fear (even more so) that he'll say another surgery won't do anything and that there's nothing we can do but "wait and see." I don't want to "wait and see." I want seeing to be easy for my girl. I cried because I watch her struggling with her eyes. Trying to make her eye muscles cooperate, then blinking to help herself. And she doesn't have the words to tell me what's going on exactly. I recently talked to a woman at a party who had similar vision issues all her life. She said she remembers in school that she often saw two of the things on the blackboard, or the words on the blackboard moved, and she didn't know that others didn't see that. She didn't have a way of explaining it to her parents because she didn't know it wasn't "normal." I cried because I so want to be able to understand the complexities of Sammie B's vision.

I cried because if another surgery is on the horizon, I don't know how I'll explain that to her. When the first surgery was done, she was only 10 months old, so we didn't need to explain. I cried because the last year or so that we really took "off" from testing has been so very, very freeing but we've just learned of a new specialist (in movement disorders) that B and I both immediately knew we needed to see (there are only a few in the country and one just moved to LA, getting an appointment will take some time, but we'd like to see him). I cried because, well, the doctor's appointments fuel so, so much fear and anxiety in me. Paralyzing fear.

I cried because we have a neurology appointment coming up and I've been compiling my list of questions and even videoed some of Sam's movements I want to talk to the neurologist about. I cried because I hate that list, I hated making that video and because I realize how bad we've been about videoing the magical things in our lives (mostly because I hate being on camera) but now we somehow have the "doctor, what do you think about this?" video. I can't wait until that appointment is behind us, and I will delete that video and move forward, trying to be better about videoing the magical moments.

I cried because she was constipated much of our trip to Florida and she sobbed when she finally *had* to go (doing that takes muscles too, so for a low-tone kid, constipation is a fact of life). I actually held her while she cried, while B and I both calmly tried to tell her "Sammie, you just gotta let it out sweetheart," to which she kept sobbing and saying "no, no, no, IN!" That may seem funny, but again, I just want SOMETHING to be easy for my girl. And, I hate that she must struggle with such simple things. I hate that the poor child has spent so much of her little life constipated that she sobs at the thought of letting it out . . . I cried for what this -- the fact that she's so traumatized by doing that -- means for potty training.

I cried because she is the sweetest, kindest, most loving and gentle little girl I know and yet, she struggles. And I wish it weren't so.

I cried because I love her more intensely than I ever knew possible and the pain of not being able to pave an easy path for her just knocks me over sometimes.

I cried because laying there with her donkeys and her apples, she looked like (as she is) a slice of perfection. Perfection.


Erica said...

you are one special mama, you know that?
and I am going to make a prediction-when we meet in person, we are both going to burst into tears!

Gina said...

This post is amazing. Just like you and Sammie. I adore it.