“We don’t see things as they are, we see them as we are.” ~ Anais Nin

Yesterday, it must have been that so many of you saw the question I asked and photo I posted and said, “duh, Shannon, that’s obviously the moon.” For those that played along, thanks for humoring me, and if you really think about the conversation that happened here in this photo between Q and KSP, the question is real, and worth pondering, if only for a moment. Why can’t the moon be a ball instead of the moon? Why is it that the ancient Germans decided that “moon” should be the term for the thing in the sky than shines down on us each and every night, rather than a ball, or a circle or a sphere or some other word like loon (derived from ancient Roman Luna).? So really if we are all honest, Q is not wrong in his designation of the moon as a ball of matter that migrates around us day after day he just sees things a bit differently and doesn’t call it the moon. Q doesn’t know it’s the moon, so he sees the thing in sky as he is, as a ball.

For the past week, I have been battling myself internally about just this very topic, how to see things. In October, I will have been blogging for 6 months so you will have missed the past 3 terms of 6 months timeframes that I have gone through a down spells in the week leading up to E and Q’s developmental check ups with the high-risk pediatric clinic. Also in October, the babies will celebrate their 2nd birthday. A huge milestone by so many counts but as with so many legs on this journey, each milestone brings beauty and some sadness. As the babies get older, the differences and discrepancies between E and Q developmentally become more significant and apparent to both me and everyone else. In the early days, people would ask if they were twins and then E would smile her bright and so very cheerful smile and people wouldn’t know or think to ask any more questions. Now, as Q runs around and talks and gets into everything possible, E sits and smiles her radiant smile, but she does not and cannot do any of those things. Around people we know and who know our story, this is ok because they know what she does do and can do is such amazing progress from the place where she started this journey. But to those who do not know us, the situation presents awkward answers to questions and awkward tension for the other folks not knowing what to say which ends up being, well, awkward. Awkward and sad.

My heart hurts and tears run down my face even as I type this, as these occasions are so much more frequent these days and so with Wednesday’s appointment looming I have the familiar sense of dread of walking into the room and having the doctors and therapists look at both Q and E and point out everything that is wrong. The other sad part is that this our normal. Intellectually, I am now prepared for these conversations as I know enough now to know that a standardized test is not always the best assessment of a person’s capabilities (just ask my SAT score:)), that this is a snapshot in time , and that there are many stops between where you come from and where you going and how you get there is really a path that is your own, so it cannot be measured by numbers and formulas but by moments of progress and how you see things. The good news is that while I will undoubtedly leave this appointment saddened by spending 2 hours talking about where the kids should be, I will also be buoyed by the knowledge that Q is doing amazing and E has made such great strides even as of late. She has been sleeping in her crib rather than a chair for over a week, she has started eating some soft solid food and just today she tried so very hard to vocalize and copy the speech therapist as she played an “ahhh choo!” game. E’s sounds only came out as little squeaks and grunts but trying was a huge step that according to the numbers would never be recognized but for my heart seeing things as they are, I was so moved and happy for she is moving forward.

So this Wednesday, as I buckle the babies into their car seats and give them and me a pep talk on our way to the hospital, I will try to remind myself that this is our normal and that only I can see these things as we are, as a family, and not as a number and not as an assessment and not as they “should be.” I don’t know how things will go for E, and I will always struggle with having to push her so hard to help her, but I know that we will do the best we can as a family to see the moon as a ball if we need to to keep ourselves motivated and inspired to make each day ‘ournewfavoriteday’. If there is anything you need to see as a ball instead of what everyone else calls it, the moon to make today ‘yournewfavoriteday,’ please feel free to share it here and don’t forget tonight as the sun sets to look at the ball in sky and be grateful for today just as you see it.