Why Three Bites of Baby Food Changed My Life

Here in the United States, and in most countries around the world, food plays a dominant role in our gatherings. Even leaving out major holidays like Thanksgiving, Christmas and Easter, food defines many of our activities.

Having friends over to watch the big game? Wings, chips and dip, nachos– those are “sports gathering” food.

Planning a baby shower? Sherbet and Sprite punch, dinner mints, and individual sandwiches are usually served.

On birthdays we eat cake. On the Fourth of July we eat hot dogs and hamburgers. We have Taco Tuesday nights with friends, and you can get half price off your pizza if your hometown baseball team scored seven or more runs in their last game. Many parents will even recommend M&Ms as an effective treat to entice toddlers to potty train. 

Food is not just something we eat to live. It defines a lot of our activities; heck, even eating certain foods can trigger nostalgia to hit you like a ton of bricks. Suddenly, you’re back in your grandmother’s kitchen eating salmon croquettes for the first time. 
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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.

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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! 

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.