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Long awaited exhale

standard May 12, 2014 15 responses

That day, that evening really, when our lives were irrevocably altered, I was hyper aware that everything was changing.

Sometimes change takes you by surprise, sometimes you have to look back to try to pinpoint the exact moment. You sift through the memories, the events until you can say “There, right there, that’s when it all changed.”

That night though, I watched it change. I knew nothing would ever be the same, and I was desperately focused on making sure that the children would never, ever be able to pinpoint that day as the day their lives were altered. A part of me hoped that they’d never even notice the change, that the transition from normal to not might be subtle enough from their point of views that there never would be a “before” and “after” in their minds. But, having lived through major medical upheavals pretty much my entire life, I wasn’t delusional enough to truly believe it.

That night though, that one night, I could control.

We got the call from M’s doctor while we were out to dinner with the kids, getting ready to take them to a pajama event at the local church. They were eating at one of those pretend “healthy” buffet restaurants and we were just watching them, assuming we’d be headed to dinner with our friends as soon as we’d dropped them off.

Then I looked at my phone. I had three missed calls. (Those places are noisy.) M had two. All the same number.

Our eyes met over the children’s oblivious heads. Fear shone back at me.

“He has a brain tumor.” I thought, as his phone rang again and he stumbled away from the table to take the call in the relative silence of the parking lot. “They only call like that, frantically, after hours on a Friday evening, if it’s something really, really bad.”

In my mind brain tumor was as bad as it got.

Cancer was as bad as it got.

That almost makes me laugh today.

I wiped the fear from my face. Stopped my hand from straying to my own phone. Forced myself to focus on the kids and their cheery chatter. M didn’t come back into the restaurant, so I put a last spoonful of peas into Little L’s mouth, helped C wipe Mac&Cheese sauce from her face, and gathered their things.

We found him, pale faced and wild eyed, standing by our car. Even without knowing what was wrong, I knew our evening was toast.

“How about, instead of the pajama party, we go home, watch a movie and paint our nails!” I said to the two little faces starting to dart back and forth between his deathly pale face and mine. The girls focused on me, skeptical. It sounded like a trick. It felt like a trick. But it was clearly too good not to believe.

“In front of da TV?” C asked tentatively.


They agreed with glee, instantly forgetting their planned evening of fun with their friends, and clambered into their seats. I buckled them both in and closed the door. Only then did I let myself make eye contact with M.

He murmured the doctors’ hypothesized diagnosis and the world as I knew it shifted on its axis.

I could have guessed a million things, this wouldn’t have been on the list. At the time I lived blissfully unawares of the sheer number of people affected by auto-immune disorders, of the sheer number of auto-immune disorders in existence. Neither of us had any clue.

A storm of questions and fears exploded in my head, but I held on to the only thing that felt solid and real. I held on to the fact that I had to make everything normal for the kids. Make this seem like a fun, special evening, not a disastrously life altering one.

We went home. Decided to watch Ponyo for the first time. I painted their tiny nails. I held them both tight. M took a long walk so he could call the many medical professionals in his family. And I surreptitiously tried to Google what the doctor had said.

I grew to loathe that movie. It became their all time favorite. They watched it over, and over, and over again that summer, and every time I was thrown back into that surreal evening where I tried to maintain normalcy for my girls for as long as I possibly could.

In the movie, there’s a huge flood, the waters overtake the town while terrifying prehistoric animals swim up from the depths of the ocean to swim among the people. That’s what that year felt like. Overwhelming fear sweeping over us while new and increasingly terrifying things lunged at us as we tried to tread water and stay alive.

We survived that flood. The girls thrived despite all the upheavals, all the changes. In the end it molded them as much as it did us, but it didn’t break any of us. In fact, I thought we’d managed to incorporate all the changes, that we’d been able to rebuild and move on, our lives different, but still good.

And then, last Tuesday, the doctor declared M to be almost fully healed, to be in maintenance mode rather than repair mode. And I let out a breath that I hadn’t realized I’ve been holding since that night way back in March of 2011.

As that pent up breath escaped from me, I saw M’s shoulders relax fully for the first time since that night. Saw fear that I no longer even noticed lurking in his face fade away. And I felt my lungs fill fully with air for the first time in years.

It’s still an auto-immune disorder. It’ll never fully go away. But it released some of its grip on our lives. Lives that might not be as irrevocably altered as I once feared.

M and Little L at the beach

****** A few back-story posts for those who haven’t had the good fortune to be following this blog for the last 3 years: His Strength Lies in His Vulnerability

Fast Paced Movie Sequence

Hearkening Back

Driving All Day Long 

Musings on a Challenging Year

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