Catching my daughter's vision

Amy painted this, of the Jesus who has visited her thrice, for my office at work 

Everything is focused in, fine detail, microscopic, onto this image she portrayed to me, her yellow-haired Jesus with the blue clothes and the glowing feet; her angel with spiky orange hair and the wings that don't fly and whole face that smiles. I dream of it, down to the cross-hatch of the linen of those blue clothes, to the strands of that yellow hair, to the burnt-umber orange of the angel's coif. It passes through my prayers as I beg for no more seizures, beg peace for a nervous system taught and tripping. I try to focus on that image hard as I battle with her skinny little stubborn frame at every meal time, hours of battle for just a few bites. I show her a video of a child getting a feeding tube placed, the gagging, the vomiting, the red-faced crying and begging. I make her smell formula, which isn't even as nasty as tube-feeds. This is what you'll have to eat, I say, if you won't eat food. With the seizures come the texture aversions and the difficulty coordinating chewing and swallowing. Finally last night we give in and make milk-toast soaked in the broth from the pot roast, and spoon the gelatinous mixture into her mouth through her tears, and I am at the glowing feet of that Jesus deep inside myself, praying, beseeching, weeping without weeping with my face.

This is what you do to fight for a child. It comes up on you like a storm blown in sudden from the northeast. You are in the sunshine of the last rays of summer one minute, and the next all the old familiar sounds of the storm howl around you - the tears, the eyes that won't track, the bumping into walls, the pooping in the pants, the can't-swallow-anything. I call the neurologist and he isn't there and I think it will be impossible to go two more days like this even though we've gone months like this before. The nurse asks for her weight, and I walk into the bathroom and weigh her, all her clothes on, and find she is only 1 pound heavier than she was 9 months ago, and I am on my knees by the scale, thank goodness. How hard have we worked for that 1 pound. How helpless I feel at that moment as the nurse repeats back the weights to me, and asks me to check again. How can she have outgrown her dosage of medication if she hasn't grown? I ask. The nurse has no answer. Wait for the neurologist, she says. He'll have a plan. For just a few minutes on the phone, she is the angel, for she has heard the hard-edged grief/anger/fear in the voices of a million parents and she knows I don't ever want my child to seize again. She can't do anything more to stop the next seizure than I can, only just speak in that soothing voice, assure me there will be a PLAN.

So I focus. On the threads of the blue cloth. On the glow of the steadfast feet. On the broad shoulders that carry the load I cannot. Come, Lord Jesus, come...not just to her, to us. Carry us home.

Written on Lisa-Jo's prompt, "Focus"