I Have Hope

In the 7th grade, I was a pimply-faced 12-year-old. My breakout that year was bad, and my mom didn’t allow make-up. As I tried desperately to be a cool girl, I remember overhearing a guy call me “pizza face.” I wanted the world to open up and swallow me as I stood there in the hallway. It didn’t seem fair I had to keep walking and sit through math class feeling like the ugliest and most worthless person on the planet. That’s probably the day we learned fractions, hence why I still can’t understand them.

At 28, my acne has cleared up, and my outer shell has hardened a bit. I still don’t understand fractions, and I blame the mean boy for that, who I pray is somewhere with a beer gut in his mom’s basement. Actually, I take that back. I hope that boy grew up and had children of his own. Maybe a daughter who he would do anything for, or a son who is his little buddy. Seeing pain on either of their faces would cause pain of his own, I know it. I’m the same way.

And, so, I hope this now-grown-up boy teaches his children that each child in their class deserves a kind word. Whether they come across another child with unfortunate acne, or maybe clothes that seem a little big as a result of hand-me-downs. I hope he teaches them to smile at the little boy in the wheelchair at the end of their table, or offer to hold the door for the child who walks in the class with his leg braces on.

I hope he can teach them to be mindful for the kids who have a harder time exercising patience, or for the kid who has trouble making decisions. I plan on teaching my children that. It’s just important as reading, or math, or learning to tie your shoe. The little girl with the bald head from chemo still needs a buddy to sit with at lunch… and the little boy with the small hand might be a little self conscious himself.

Parents of special needs babies live in fear of them growing into special needs kids. Babies don’t need acceptance and validation from anyone but their parents, and they usually, hopefully, have that in abundance. We wrap them in our arms, like a cocoon, and tell them they’re beautiful, they’re brave, they’re strong, and courageous. They’re our inspiration. Their smile brings tears to our eyes and a puts a flutter in our heart.

But, they’re growing. They’re always growing, and we eventually will feel their fingertips slip from our hand, and we will be left holding only hope. Continue reading

When Later Never Comes

We’ve all had those days. They start off with a rainy morning, so, of course, the dog leaves mud all over the floor after you let him back in. Add that to the honey from last night’s chicken nuggets, and you find yourself mopping before 8 a.m., while telling your daughter you’ll let her help you feed the fish later.

The toddler runs off to play in her room/ruin all your make up, and you change the baby’s diaper after his morning bottle and into play clothes. You start working on tummy time (guiltily remembering you didn’t do near enough yesterday!) when the doorbell rings. It’s just the UPS guy, but the doorbell caused the dog to act like someone burned him with a hot poker, and barked like he was dying, which terrified the baby and set him off on a 20 minute crying spree.

Trying to calm him down while also pulling the package on the doorstep inside without it getting too wet is impossible, so he has to lay on the floor while you duck out, hoping no one sees you in a t-shirt from high school and your polka dot pajama bottoms.

Your daughter chooses that moment to ask you to play horses with her. She’s dolled up in her best dress, which you were sure you put away somewhere she couldn’t reach. You tell her you’ll play later, all the while pulling the dress off, and finding her something safer (see: machine washable) to play in. Continue reading

Hug Another Mother, Today.

I used to think my opinion mattered. In my sheltered, inexperienced mind, pre-kids, I would judge other parents. My face rarely revealed my disgust or shock or annoyance, but those were common emotions as I observed the tiny children I came across in public, even those of my friends. How could they be doing such a terrible job; it seemed so easy! Wipe the child’s nose when it runs– simple! Tell them no when they asks for french fries, and order applesauce instead. Why was that so hard? I was bewildered by parents who made it seem like such a struggle to keep kids on the right track. Laziness, I assumed. Inattentive parenting.

I was better than that. I would be better than that. I had a long list of things I would “never” do as a parent, and an equally as long list of things I would “always” do. Doing the right thing, the best thing, would always be a clear decision, a choice between black or white. I would always choose the best path, regardless of its ease.

And, then, I became a mom, and my memories came back to bite me in my smug behind. Parenting is hard. Not because we are lazy, or inattentive, or confused on which decision is the best decision, but because there are so many decisions to make! Picking my battles is imperative to keeping my sanity, though the times we go with the easier battles causes guilt to form a small ball in our stomachs. Did we do it right? Was that age appropriate? Will she hate us for this? Are we doing what’s best for her? Bite sized guilt meals, thanks. Continue reading

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.

My Unconventional Gratitude

This Thanksgiving, I’m grateful for so many things: my health, my family, and the life we live are a given. Those are the old Thanksgiving standbys.

But, this year, I wanted to create this list, and get it down, out where everyone can see, because my gratitude is so deep this year, deeper than I ever thought possible. I am a completely different person than I was last year; my heart, soul and mind were altered over the course of the last 12 months. I understand more, and at the same time, have become more unsure about so much.

This change in me, though, has caused me to reflect more fully on what I am actually thankful for, rather than just arbitrarily brush this holiday off. I realize my life is as full and happy as it is because of some very specific things that I never imagined I would need to articulate.

First, my Jackson. He is here, he is with us. A year ago, when I was five months pregnant, being grateful for his birth would have crossed my mind, but it wouldn’t hold the weight that it does now. He is here against overwhelming odds. So much wrong, and yet, so much right at the same time. He has the strongest soul I’ve ever seen in such a little guy, and I’m so happy each day I open my eyes to find him a part of my life.

Dr. Erez, the man who touched Jackson’s heart with his human hands, worked his beautiful magic, and then sewed him up like a talented seamstress, leaving him with the most gorgeous and faint scar ever seen on an infant. This man will have my gratitude for the rest of my life, every time I see Jackson breathe, and witness his pink, perfect skin– a testament to his heart working as it should.

The artificial gadgets that function like human parts, without which my son wouldn’t be alive. The inventor of the patch that was used to close the hole in his heart, and the creator of the g-button that sits in my son’s stomach. As afraid as I was of these things, I have grown to love them. They keep him alive, and they let him enjoy life.

Facebook is a part of my list this year, too. The advice, encouragement, and sympathy from the parents of kids just like Jackson has been nothing short of a saving grace as we grappled with each new diagnosis, and held our breaths through each new procedure. Support systems don’t have to be face-to-face, I’ve learned.

My spirited, stubborn, resilient daughter winds up this list. She is always on my list, but this year I’m more in awe of her than ever. She didn’t escape the summer without a little scarring, and is a little more clingy, but she holds nothing against us, and absolutely nothing against her brother. She adores him; worrying and alerting me when he cries, laughing when he laughs, and screaming, “SAY MAMA!” in his face to help him learn to speak, in a much harsher version of me. She is already the best big sister, and I couldn’t be more proud.

These things are added to my original list…

My family, who has let me cry and scream and rail, using them as scapegoats. Thanks for loving me through this time in my life I didn’t think would ever get better.

My husband, who couldn’t be a better dad if he wanted to, and is a better husband than I sometimes deserve. Thanks for all the mornings you let me sleep in, and always cleaning the kitchen when it needs to be done, and taking over the sweeping and mopping responsibilities when you realized it was just not my thing. Thanks for loving our kids so much that it pushes you to the point of pain. We’ve been at that point too much this year.

My Thanksgiving list is long, unconventional, and needed to be written. I doubt (I hope) I’ll ever have a Thanksgiving that requires so much reflection again.

#grateful

Edited To Add:

Jackson’s amazing physical and speech therapists, who have both talked me off an emotional edge when I get too far ahead of myself regarding Jackson’s progress. Their positive, uplifting attitudes about how well he’s doing, how well Sydney is doing, and how well we are functioning as a family after this summer has calmed me down more than once. Thank you, Meagan and Natalie, we are grateful for you!

A Little Reprieve

So, my last post was a little, well, dark and depressing. Thankfully, I have better news this time.

After the monstrosity that was his genetics appointment, the next day the neurologist basically scoffed at the Moebius Syndrome diagnosis. He said a 7th nerve palsy (which Jack has) cannot be the only basis for diagnosis. As it is a neurological syndrome, I am gonna go with the neurologists opinion. So, WOO!

And, Jack’s physical therapist was even more shocked at the swallow study results, and the insinuation of the speech pathologist that he may never eat. The kid is 6-months-old; kinda young to start making major declarative statements like that. So, we’re going to ignore it, try another swallow study in March, because I want him to be able to eat birthday cake at his one year party in April.

Now, as for me, for starters, the nodule is 100% benign. BENIGN. So many tears. And, probably some rough words and discipline for the X-ray tech’s who divulged information about me that they were not supposed to share. Yes, I received three apologetic and remorseful calls from base administration. Good. The nitwits need to learn what they can and can’t say, because they never know when they might scare someone into thinking for an entire week that she might have lung cancer.

In my head I was writing letters for every major event in Jack and Sydney’s life so that they would have something from me during those important moments, like high school graduation, or their wedding day, or a Tuesday. I was going to do a lot of writing if I was dying.

I was also trying feverishly to come up with the next Harry Potter, so, if they couldn’t have their mom, they could at least have their mom’s royalties.

But, since it’s benign, they’ll have to be content with being poor.

What else, what else… um, Christmas is up at my house, including the house lights. The tree is being decorated tomorrow.

Shitty summer + cancer scare = IN YOUR FACE HOLIDAY CHEER.

❤ Hope everyone is having a lovely November.