I have not had fingers to keyboard in quite a while. Action packed few weeks - some good, some requires more perspective before I can articulate the brighter sides...
Among these things is that Addie's sweet life has been further complicated by the uncovering of possible additional conditions. Though she feels no different today than she did yesterday, a few more fragile platters just got stacked onto the heap my husband and I are trying to balance along with everything else. I realize I am tired of one thing and one thing only: making decisions, weighing options, hedging bets... I would love to go a week without a single monumental decision to make on Addie's behalf.
In a doctor's waiting room, tired and resigned to watching my kids play with the germy toys there before hearing another professional opinion, I found an old notebook in my diaper bag (disguised as a huge purse). The first page was dated 4/14/07. Spring - hope, new beginnings and whatnot. I imagined I'd find a few spring thoughts in it to warm me up this cold late fall day, maybe shore up my attitude a bit. But instead I found words for my exact current November state of mind:
She is at the top of the ladder, both pleased with herself and oblivious at the same time. She doesn't look down, nor from side to side. She does not notice the bright lights against the red and white stripes. Her eyes are slits, slightly rolled back. Rhythmically she throws her head back, straightening her arms, then bending her arms and rolling her chin down to her chest again and again. Her mouth is working. The chewing motion doesn't fit with the low hum she makes. The hum changes with the rocking, but the rapid chewing is at a constant faster pace than all else. What she chews is not of interest to her, just that it can be chewed for the duration without losing mass or texture. Her tiny little block feet slip slightly from side to side, but amazingly not off the rung they touch.
I grip the base of the ladder. There is no blood between my knuckle bones and the skin covering them. With my eyebrows knit and my jaw clenched tight I look more like a man than my short spikey haircut otherwise makes me look. I don't notice the lights or stripes either. My mouth also works. Be careful, Addie. Good job climbing. Can you hold on and climb down now? Don't answer me. Just do it. Spit out what's in your mouth. C'mon, Love. Come down. Cate. Stop it. You need to wait.
My voice morphs with each phrase - cheerful, hopeful, terrified, pleading, annoyed, angry. Cate is circling around me, asking for a litany of things: a snack, a story, a hug, help with homework, a moment's focus, time. She is right to expect all of those things of me and more. But in her asking, in her rapid fire, the answer she anticipates is clear. No.
My terror deepens at Cate's unintentional reminder that I could lose them both. I run through the options. If I go up the ladder it will likely slide with my additional weight. If it doesn't and I make it up, I might startle Addie and she might let go. If I keep talking she may try to respond the only way she can - in sign language with her hands. And what is in her mouth? What if she chokes? I could reach for my phone, but the ladder moves with each rock, so I cannot let go myself.
But there are people around. Watching. Just a few because we are in the smallest side ring of the circus. Most eyes rest comfortably on the main event - although it's suspenseful, the eyes already know the ending. A few watch our side show in silent expectation. Some watch furtively, checking our show against their own private ones - finding either relief or anxiety in the comparison. Others discuss my options, risks, give odds and place bets.
The music reaches no crescendo, the lights don't fade, the people don't leave, the tent isn't packed up, our show does not end.