Takes Me Back

Music always takes you back. It takes you back to your first date, your first kiss. High school. Prom, the summer. It reminds you of years and seasons, moments. Events. Minutes, seconds and whole days. 

I watched the first two seasons of Orange is the New Black while Jack was in the hospital. I was hooked, like everyone else, because it’s addicting. Today, season three came out, and I have been dying to start it. 

Only, when I did, I found myself with tears streaming down my cheeks, and a large ball of anxiety suddenly in my stomach. It takes me back to those lonely, terrifying nights in the hospital with my baby, as I rocked him and watched him sleep. He and I shared a lot of Netflix time, but OITNB was the only show I watched 100% in those hideous pastel rooms. 

The theme song is haunting as it is, and for it to bring back the memories it does… well, I wasn’t expecting the deluge. 

Yet, as I was crying, I looked over at my beautiful, happy, just-got-his-first-tooth, big boy sleeping, and it’s amazing how much different he is from the last time I heard the opening song. 

“Taking steps is easy, standing still is hard.” — “You’ve Got Time” by Regina Spektor

Regina was wrong, because all of the steps he’s made in his progress are the result of incredibly hard work. Nothing easy about it. 

My mind will never remove the association between that very difficult time in our lives and this show, but every time I watch it, I get to smile and be proud of how far he’s come. 

The tears are worth it. 

I See You Staring…

I see you staring.

My kids are super gorgeous, I know. They have those cheesy baby smiles and are a perfect blend of me and my husband — my daughter inheriting my blue eyes and my husband’s sandy blonde hair, and my son sporting my dark hair and my husband’s deep brown irises.

Their manners are above reproach, as well. That’s not to say my daughter’s threenager attitude doesn’t pop out sometimes or my son’s 1-year-old confusion of the world doesn’t cause some tantrums, but on the whole, they are happy, sweet kids.

Though, I know you’re not staring because they are over-the-top adorable to look at or because you’ve never seen such darling manners in kids this tiny.

You’re looking at my son’s tiny hand, aren’t you? Or perhaps you see us hooking a tube to a device on his stomach. Or you’ve noticed how one of his eyes never blinks.

More…

My Mini Vacation

The kids’ clothes had all been washed, folded and packed carefully away in their lime green shared suitcase. I had loaded a bag full of toys, beloved stuffed animals, and favorite spoons as well; the things kids have to have every day, but you don’t think about it until you’re taking inventory on what to send when they stay the night at grandma’s. 

I pulled one more grocery brown bag out of the cabinet; just a few odds and ends. I meticulously arranged four cans of formula at the bottom of the bag. On top, I counted eight 500 mL feeding bags, and two extension tubes which connected the bags to Jack’s gastric feeding button. I also added a roll of medical tape, and some gauze, as well as a Foley catheter. My mom already had an extra button at her house, for emergencies.
 
Walking down the hall, I called for my mom to meet me in the foyer, and pulled out the catheter. “Okay, if he pulls out his button, you need to put some KY Jelly on the end of this, and put it into his stoma to keep the hole from closing.” My mom looked at me wearily.

 

“It won’t hurt him, we just want to prevent him from needing surgery to re-insert his button if the hole closes up,” I told her. Though, I knew if it happened, she’d be a wreck, just as I would be. So far, *knock on wood*, Jack hasn’t pulled out his button in the nine months he’s had it. Mom could handle the bags, and the feeding pump, and hooking him up, and cleaning everything, but all of that requires the button to stay put.
 
She walked back to the guest room to get the rest of her stuff, and I rocked back on my heels beside the bag of medical supplies. Medical supplies. My 10-month-old son was going to spend a few days with his grandparents, and to do that, he needed to have a bag of medical supplies accompany him. Ridiculous. I couldn’t control the tears as they fell from my eyes, still surprised at how annoyed and angry I was at the situation. Regardless of how amazing, happy and content Jack is, the extra obstacles to meet his needs that other kids don’t have continue to prevent me from being the carefree mom I was when his sister was that small.
 
After triple-checking to make sure anything they could possibly need or want was packed, I waved goodbye as my mom’s SUV rolled out of sight. I walked back into my suddenly very quiet and empty house– the first time I had been without my kids in over a year. Sinking into the couch, I felt myself beginning to panic. I had the sudden urge to call my mom and demand she turn around and bring the two people I cared most for in this world back, right then!
 
But, I just cried. I already missed them, and was out-of-my-mind with worry about my parents handling Jackson’s needs all by themselves without me to offer assistance or takeover. However, I was looking forward to a break. A glorious break where I wasn’t clocking the time between feeds and rinsing out extension tubes, and worrying if I have time to get his last feed in, on top of all of the care and attention that comes with a 3-year-old girl (FYI: SO MUCH!).
 
For three days, I did whatever I wanted. I tanned. I shopped. I worked out. I got a pedicure. My husband and I actually saw a movie in the theater (Kingsman– we loved it!). We had dinner together without having to rush, or worry if the toddler was dropping food on the floor, or if Jack was going to be cranky. We hung out together at night without having to stop for bath time, or for bedtime routines, or to put toys away. We drank beers together late and talked, not having to worry that one of us needed to stay sober.
 

It was wonderfully freeing and absolute agony all at once. I forgot how much easier it was, and how selfish you could be when there was only your spouse to think about.
 
I also realized how empty my life would be without them.
 
At the end of my mini vacation, I pulled into my parents’ driveway after the two hour trip, and saw all four of them waiting on the porch for me, my toddler so giddy with excitement, she couldn’t keep a single part of her body still. I opened my door, and heard her sweet voice, “MOMMYMOMMYMOMMYMOMMY!” as she jumped into my arms for a hug.
 
It doesn’t get better than that.
 
Jack looked at me like he hadn’t seen me in years, and it felt amazing to have him back in my arms!
 

Bottom line: I need a little break every now and then, but it is beyond a shadow of a doubt that they are what make my life worth living. Oh, and my parents are completely capable of handling Jackson and anything he may need, and I need to stop being a worry-wart. Thanks, mom and dad, Justin and I more than enjoyed the alone time, and we love knowing they were in such good hands! 

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

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!

Checking In

Things have been pretty normal in the Engel house, lately.

Two kids is way harder than people make it out to be; at least, two kids SO YOUNG, which is why that was not the plan. Wouldn’t trade Jack for the world, but I wish he had come about a year and a half later.

He had a pulmonologist check-up last week, who said he looks fabulous. The heavy breathing and congestion-sounds due to his tracheo-bronchiolmalacia (floppy airway) should subside by at least 15 months, if not sooner. 😀

We have a swallow study for him coming up on November 10, and we will be experimenting with solids! We have been practicing using a spoon (with nothing on it), just so when the day comes, he’s not like, “Whoa, okay, weird metal thing in my mouth, covered with goopy, runny, gross stuff. Yeah, no. Spitting this junk out.” That won’t help us, so we’re trying to at least get him accustomed to the spoon.

Swallow study day will be a big day.

Other than that, life is normal (yay!). He still gets speech and physical therapy each once a week, but it’s such a short session, it’s barely noticeable. At most, it’s good motivation for me to do more than just “pick up” the house.

Sydney’s potty-training is going absolutely, positively NOWHERE. The kid asks to wear a diaper, even when we buy her the cutest underwear that SHE picks out (Despicable Me minions and Hello Kitty, for the record). She is perfectly content to sit in her own grossness until we practically drag her to the diaper area. They say kids will tell you when they’re ready… I just hope it’s before high school. Such a stubborn girl!

I’m still writing, Justin is just working. I made him watch Breaking Dawn Part II the other night (just to torture him), so now I have to watch True Blood (his vampire obsession). I’m impatiently waiting for next summer when I can delve back into House of Cards and Orange is the New Black.

That’s us, in a nutshell!

Boring, normal, mundane, run-of-the-mill, middle class lives.

It’s wonderful! ❤