spasms of the heart

as a parent of a child with a disability, you tell yourself frequently a few self-soothing maxims:

1. you are doing the best you can.
2. you can't change what is.
3. it isn't your fault.
4. everything is going to be allright.
5. appreciate the little things every day.

at least those are the things my husband and i frequently tell ourselves.

when emma turned 1 year recently, we had the occassion to take stock. we looked back to a year past and all that has transpired.

the tremendous growth in emma physically, emotionally, and cognitively. she is so curious now. she is so gregarious and engaged.

she has gone from needing support to roll from side to side, to support to sit up, to support to stand up now - gone from needing mommy and daddy and grandmommy and auntie and uncle and a team of therapists to make those things so.  And while she hasn't yet mastered crawling, she is starting to climb from sitting to knees to pulling up to stand.

she has gone from needing tubes to breath to gasping in full, deep breaths when she is thrilled or when wind blows in her hair.

and, much to my husband's great chagrin, she has graduated from the oh-so-cozy and cute sleep sack to sleeping with her favorite blanket.

these are our profound joys.

yet, looking back over the past year we also have to chide ourselves a bit for being sometimes more optimistic than we thought could ever be possible for two such stubborn realists (or idealists? who knows).

we honestly believed that when emma kept resting her thumb on the side of her cheek when we fed her that it was "on standby" awaiting the completion of her bottle to move oh-so-quickly into its rightful position in her mouth.

but, alas, we were wrong.

it was in fact her communication to us that she was in pain. her own sign language we never taught her, but that she used to say HEY! Mom! Dad! It hurts.

once we realized, of course, she was wisked off to the doctor and then given antibiotics for ear infections and ultimately fitted with ear tubes.

more recently, we believed emma was thrilled to eat. overjoyed so much so that she would clench her fists and jaw and make herself rigid. so much so that she ate and then wore herself out and rested her head on the table quite a bit. so much so that her little tongue has been quivering ever more frequently.

yet, once again, it appears we may have been wrong.

and so emma now has an EEG scheduled and follow-up with a neurologist.

perhaps we wanted to see the normalcy in this behavior. perhaps we are naive parents. perhaps we just don't know much about kids. not sure.

and, to be clear, emma never suffered from our momentary summoning of normalcy - we noticed these behaviors and quickly reported them to her doctors in a matter of days, not weeks or months.

still, though, it's hard not to look at yourself and say:

1. you need to do better.
2. you should always seek to improve what is.
3. some things are your fault.
4. sometimes, best intentions or aspirations aside, everything can't be all right.

and even though all of this is true, you still need to

5. appreciate the little things every day like when she moves from sit, to knees, to stand, and then tries to creep alongside the couch, while giggling with joy, as she heads toward her ultimate goal: 

dadadadadadada.