50 Things I Didn’t Know Last Year

The me who celebrated the arrival of 2014, is not the same me who will be welcoming 2015. I have changed, and I know so much more now.

Thank you for following me, for reading my blog, for keeping up with my kids and my family, and for caring about us. I have loved writing my feelings and seeing them resonate with other families. I plan to keep writing, if you plan to keep reading.

And, now, the 50 things I have learned over the last 12 months…

50. What a g-button was, or how to use it, or that it’s not that big of a deal.

49. How amazingly strong and resilient my daughter, Sydney, is. She amazes me.

48. What terrible, awful beds those plastic couches at the hospital make.

47. That Moebius Syndrome, Poland Syndrome, or VACTERL existed.

46. That a cystic kidney was the least of our worries.

45. That Jack had such a tough road ahead of him.

44. That we had such a tough road ahead of us.

43. How much I would cherish those moments I spent rocking Jack in the dark, quiet hospital at night. Continue reading

How To Be The Voice Of Your Special Needs Child

My child’s doctor never tells me what’s next. I tell him. Or her. Or them. Or, if I’ve fired them from his case, the new set of “them.”

They don’t dictate what happens to him, because they didn’t carry him, love him before his first breath, spend hours in pain trying to birth him, or spend days, weeks and months in even more pain worrying about him.

The first month of trying to figure “everything” out, I nodded ferociously and said very little when the barrage of specialist came raining down on our sad little mint-colored NICU room. These are highly specialized, important, well-educated physicians, my head told me. They know what they’re doing.

It became disgustingly obvious that was not the case. And, the more I was repulsed by their lack of attentiveness and eagerness to help my son in a timely manner, the angrier and more frustrated I became. “First, do no harm,” includes being ignored while hospitalized. Continue reading

A Worthy Pause

A semicolon joins two sentences, two complete, related thoughts, together. They could have stood on their own as sentences with a period in between, but the emphasis that a semicolon lends to a sentence can’t be matched; it’s commanding.

It also represents a spot where the author could have ended his thought, his paragraph, the story… but chose to go on. “No, this isn’t the end,” he might’ve mused, mulling his choices over. “There’s more, there’s still more to be said.”

A semicolon is a symbol of moving forward, of pressing through, of choosing to go on. It’s a metaphor for life; we all need to take pause now and then, and a semicolon does that for the written word. The story is coming at you with veracity, and the semicolon brings you up short to catch your breath. The story isn’t over, and the world still may be crashing down, but a pause can save you.

And then, you must choose to go on.

This summer was a semicolon; it is the metaphor of my life, in that everything I have lived through prior to May 11, 2014 was the first sentence, and everything after August 9, 2014 is the second. My childhood, my adolescence, my wedding day, my husband’s deployments, the birth of our daughter is spun into the most breathtakingly beautiful and complex sentence because it is complete on its own. If my life had ended there, it would have been respectable. Short, but respectable. I had lived, I had learned, I had loved, and I had created a beautiful legacy to leave behind with blonde hair and blue eyes.

But, life didn’t end; there was no period. It paused, instead. For three months we paused, waiting to begin our second sentence. Waiting to fill it with whatever came next.

The wait was agonizing, because there was no end date. We couldn’t just take a breath and start; sometimes, I couldn’t breathe at all. The act of pulling air in made my heart ache from the helplessness. Days and weeks no longer mattered. Time didn’t matter.

Not until August 9 did time begin existing again.

On August 9, we could finally exhale and move on from our semicolon. We began our second sentence, shakily, but whole. All the pieces that had been in limbo during the pause were put back together, and we began our second sentence with our second addition: our son, who fought so long and hard during the pause to take his first real breath.

The semicolon has long been my favorite punctuation. I enjoy knowing how to use it, to pop it into place and watch it sit snugly, anchoring its neighbors together.

It has so much meaning to me, and it reminds me to go on. Always go on. Live a life of semicolons, pausing at times to catch your breath, or assess the gravity of a situation.

But, then always go on.

It was only fitting, then, that it be included in my first tattoo, and the only tattoo I will ever get. It took me 27 years to decide if I wanted a tattoo, and I’m grateful I waited and adorned my body with words that mean something in my heart.

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This summer will never be forgotten; it changed me, inexplicably, as a mother, as a wife, as a writer, and as a human. My pause will stay with me forever, and we will continue to go on, creating the second sentence and completing our lives.

No More Echoes

I was 19 when I moved out of my parents’ three bedroom home. The house was stuffed full of our life; there was no emptiness, anywhere. The garage was overflowing with Christmas decorations and discarded softball gear. My room was jam packed with the memories of high school on the walls: mums, pictures, movie ticket stubs; books could be found spilling out of the closet, and stacked on top of any flat surface. My sister’s room was a tween’s dream with its Easter-egg-purple walls and green stripes, and silly posters hung with colorful tacks. The living room with its oversized furniture filled the space, even with the raised ceiling. The kitchen was stocked with every single gadget a cook could ever want, and a pan or bowl of every conceivable size.

I moved from that house with no echoes to my own three bedroom house in Oklahoma, 160 miles away. When the movers brought our boxes in, I was puzzled by the amount. We were going to live with so little things? How?

Getting married so quickly, so unexpectedly, and so young meant we had no wedding gifts. Actually, I believe very little of our friends and family knew we were married at all. It was a rapid, sudden, explosive departure from my former life with my former name, into an incredibly strange, and somehow empty world.

Our long living room was populated with an end table at the far end, and a 19-inch television perched on it… our entertainment center. Five feet back was a day bed, made up to look like a couch, since we didn’t have one. On either side of the couch were two plastic lawn chairs, a little faded from the sun… our seating area.

In the kitchen, we had a total of four cups, two dish towels, a microwave, and a coffee maker.

The dining room was our makeshift “office,” as we had no table or chairs to dine on. A desk sat against one wall with our computer and printer; for weeks we would spend our evenings together at the desk, laughing at funny things on the Internet and marveling that we we had actually done something so huge and different.

In our bedroom, the master bedroom (what was I doing in a master bedroom at 19?! It felt surreal), was a full-size bed, and a set of broken dresser drawers.

That’s it. That was the extent of our possessions. There were echoes in every square inch of that house.

The remaining two bedroom were completely vacant. We had no furniture or use for them at all. The closets eventually became designated for military uniforms, just to make things easier, but they weren’t needed.

For four years, I kept those doors shut, not wanting to cool or heat them for no reason. We slowly accumulated things, and those rooms became overflow, but never organized or seen as anything specific. Just extra emptiness.

Then, on a cold January day, after a three minute wait and two little lines, just like that, one of the rooms had a purpose. It was to be painted and decorated and organized and used. It was going to belong to a tiny someone.

After our tiny someone joined us, we were moving again, to a new three bedroom house in a different town. This time, the packing took a bit longer, and the amount of boxes that showed up in the new house in the new town seemed unreal. Surely our household items hadn’t multiplied this much?

A year or two passed, and we still had the one room that was never a destination, because there was no reason to go in… until the three minute wait yielded two more lines. The painting and the decorating began again.

Because of the gradual progression, I hadn’t thought about it until tonight. It has been over eight years ago that I stepped foot into that first house full of echoes. The house where we had spread out our meager things, trying to make them appear bigger than they were.

Now, this house, right now, has no echoes. Our lives spill out of each room, like my childhood spilled out of my parents’. My daughter and her sunny, yellow room and its gobs of toys. My son’s room with its slate gray walls and the wooden alphabet above the crib, and baby clothes at every turn. Our room with our individual end tables by the side of the bed, and our closets overflowing, a new, unbroken dresser, and a mounted television. Our living room with our own oversized furniture, and the kid toys tucked into every corner. The dining room with our massive table: always a sitting place for random objects. The kitchen–my kitchen–which now holds every kitchen gadget, bowl or pan that I will ever need.

I walk down the hall at night and look at the closed doors that seal off my children’s rooms as they sleep. It takes me back to the echo house, and the closed doors of the rooms that had no purpose. How much has changed in so little time! These closed doors make me smile, for behind them are pieces of my heart and soul. These doors hold two of the most important things that keep me bound to this earth; that give me a reason to care about the world.

I smile each night as I pass these doors. The doors and rooms with a purpose, a use. I whisper, “Goodnight,” to my children, to the rooms, and to myself.

There is no echo, for every space has been filled with our life.

Hindsight is 20/20

A post I had written for a parenting website while I was pregnant with Jackson has been republished on the website’s social media page. It talked about me being disappointed with having a boy, when I first found out, and then my heart shattering into a million pieces when I found out, five second later, that there was a problem with his kidney (oh, gee, no, not his kidney! Heck. I’d love to have that back as our only worry).

I’d like for anyone who ends up here by clicking my bio link (THANKS, and share anything you find interesting!) to read this piece I wrote not too long ago, about gender not mattering, and what it takes to realize that’s true. If I were to get pregnant again (SO. NOT. HAPPENING.) I would revert to my coined, “It doesn’t matter,” phrase.

Take a read.