A Mother’s Fight

My arms crush you with Zeus’s strength, and yet it’s but a fleeting touch.
Swirling hurricane winds would fail to rip me away.
Unearthly is this force pulling me to you.

Trembling lips wrap you with iron love, attempting to protect as much.
No fearsome beast could stand to meet my burning eyes.
How weak my arms feel flailing to catch you.

I scream, see fire, claw at the pain.
I sigh, tears fall, it starts again.

Bring on the fight, however long it may be.
A mighty force stands by your side,
For eternity.

Copyright 2013 Carrie Mamantov

Crummy week. What good is being right. Therapy.

Writing it makes it real… Don’t know whether it’s healthy therapy or teetering on depression though.

R is on her fifth seizure in 54 hours. The old pattern is back. One at night, one in the morning. Give her all day to recover, seems better, and then BAM! One right before bed. And so on. She has to have a virus. I am finally believing my mommy intuition knows best. Crappy part is there is nothing we can do to speed up the virus. So what good is being right.

Trying to make her comfortable, sleep lots, but most importantly she needs to eat! Or we will be back in hospital again…

First physical therapy session was today. Seems promising considering how simple the changes and activities are. If you or anyone you know is in OT or PT for babies, hug them. What an amazing skill they have to help a baby achieve milestones to learn and grow and stay on track!

Despite this week’s crummy start, knowing we have her regularly working with therapists who know what to look for has me feeling sooo much better.

B explains his job and other random dinner dialog

That brain is growing too fast for its own good, and ours!

Tonight at dinner D asked B what he does at work with a sincere interest in almost a grave tone. Poor Bryan looked like his father-in-law was grilling him.

The dialog was straight forward and simple and he lost interest after learning the only tool Daddy uses at work is a computer. But he did give it a few minutes of real thought.

Same night, same dinner he breaks out the, “Daddy, you’re the smartest man ever.” To which I of course confer. Seems he just needed to know computers were involved at work and then could determine his dad’s intelligence.

And then, randomly different topic, but same dinner, he is pretending to have his own conversation while the grown ups talk about R and then we hear…. “on Facebook.” The silence made him sheepishly grin like he knew something he shouldn’t. But he couldn’t tell us what it is or who told him about it. So who knows, we may be guilty. But it was a bit of shock considering he hardly listens to anything we say.

Good days, and yet…

Another great day and yet I still hold my breath. Fearful of what the dr might do if we share the good news. She is more alert and playful every day. Even clapped two blocks together, one step closer to the milestone marker for 9 months. One month behind doesn’t sound too bad.

What if Nuero reads that as a sign it is time to up the dose? Fearful this is temporary and that we are only getting our hopes up… That it will hurt more this second time if we lose her to the fog, again. Most fearful she doesn’t build back as she has slowly, even loses the fight in her.

It hurts to breath thinking about it.

But I must because we are trying to plan ahead, be prepared for the next change to have a faster way to respond and adjust. And yet, it seems so hard to know and even wrong to let myself think of what could be worse.

Short breaths. Slow breaths. And then I will hold it in again