Good Ju-Ju, please — UPDATED

Dear readers, 

Please thing good thoughts, today! Jack is going in for a swallow study, and it would be AMAZING for it to show how much progress his speech and physical therapists believe he’s made. 

I’m trying not to get my hopes up, but he has been eating so good the last seven months, I will be crushed if they say he shouldn’t be eating. My stomach is in furious knots right now. 

I will update after his appointment at 2:30!

Update:

It went WONDERFULLY! He was cleared to eat everything above Stage 2 baby food, which includes Stage 3, and all manner of table food! We are also clear to start practicing honey-consistency liquids, and will have another swallow study in six months to see his progress. But, I am BEYOND happy, because the fact that he can eat table foods means we can actually start weaning him off the button and formula, because his calories can come from actual food! We will have to give him water via tube because it’s too thin for him to handle right now, but this is still 10 GIANT STEPS forward. I am so proud and happy, and will be on cloud nine for DAYS. 😎😎😎

— Jack and Rachel

Deep Breaths

Dear Me-From-A-Year-Ago,

Stop, right now, and take a deep breath. I know how wrong things seem right now. You want to revel in the blissful euphoria that comes after having a baby, like you did with Sydney. Unfortunately, you’re too scared. I know. It doesn’t feel right, he doesn’t feel right. Something is wrong, but you don’t know exactly what. You’re right. You are going to need every last ounce of your patience, your strength and courage to get through the next three months. 
Yes. Three. Full. Months. On May 11, right after Sarah’s graduation party, you will take Jack to the ER, where he will be picked up by a Cook’s Children’s plane, and taken away. 
I know that’s shocking. I know you’re wondering how bad it is if they need to keep him that long. I know you’ll be aching to hold your 15-day-old baby in your arms, without the dizzying array of wires that accompany him already. I know he looks weak, and fragile, and he has you wondering if something really awful is going to happen. 
It doesn’t. At least, not the soul-crushing, bleak tragedy you’re imagining. Awful things will happen, and these three months will scar you and change you like you never thought possible. Even now, a year later, thinking about the days we spent waiting for answers and solutions, fighting with doctors, feeling the loss of control from our lives, feeling the days slipping by us with no sign of an end… it brings me to tears. 
You will feel lost and scared. You will eventually stop trusting anyone to tell you the truth. You will feel like a nuisance to the medical staff, even when you try your hardest to make those days comfortable and home-like for Jackson– providing his own clothes to wear, and his own linen for the bed. You will have an ache in your heart that refuses to leave, and it will be the worst pain you have ever felt in your life. 
Rock Jackson. Look into his eyes. You’re there for him. When you argue with the doctors, when you make your demands known, when you force them to listen you, you’re doing it for Jackson. Be strong. Confrontation is not easy for you, but if ever there was a time to face that fear, it’s now. 
Be his advocate. You and Justin are the only ones who can, and he’s going to need both of you. Fight for heart surgery, because, trust me, IT MAKES IT ALL BETTER. 
Yes. Everything. Less than two weeks after surgery, he will be home. So fight for it. Demand it. 
But, most of all, know this:
He turns out perfect. I’m serious. He’s here with me, a year later, and he’s thriving. He’s happy. He’s smiling and laughing. Sydney is his favorite person, and he and Oliver have a sweet boy-and-his-dog relationship already. Go figure. He eats food, and waves bye-bye, and uses his little hand to pick up his pacifier, and pull your hair. And you have changed more pee diapers than ever before, evidence that his one kidney is a rockstar. He’s FINE. 
So, deep breaths. Today is May 11, and he will be discharged on August 9. You will spend those days rocking him and talking to him, binge watching A LOT of Netflix, and eating your feelings in the cafeteria. Go ahead, eat, we’ll take care of our sad pounds later (still in progress, of course, I’m not a miracle worker). 
   

 

Kiss on Jack, love on him, and know you’ll both be just fine. Hang in there, mom.

Happy Birthday, son. 

Happy first birthday, Jackson.

  

After six hours of induced labor, and an emergency c-section, the sound of your cry sent relief rushing through every cell of my body. When the doctor popped your round little head over the curtain, and I took in your full head of dark hair (which you have somehow managed to maintain!), it was instant love. I was so grateful you were here, and so excited to see what new joy my life would now hold, now that you were in it.

But, and you’ve heard this story before, mere moments after we celebrated your arrival, the medical scares started coming. And they would keep coming and keep coming, until I thought we would never be able to crawl out of the deep hole we found ourselves.

  

  
  
You, however, were amazing. You took your surgeries in stride, always recovering so well, and bouncing back. When we finally strong-armed a surgeon into giving you heart surgery, you said, “Okay! I’m done! Let’s get out of here,” and 12 days later, I carried you out of that hospital.
  

Today is bittersweet for me, because I will always remember those first few moments and the following days, and remember how scared I was, how scared everyone was. We didn’t know what to expect. You were so tiny, so fragile. So sick.


The wonderful thing about those sad memories is how amazing you look now in comparison. It’s hard to imagine how afraid we were when we see what a chunky, happy, giggly baby you have become!

  

  
  
  
Your smile is not the biggest smile in the room, but it’s the most perfect. It tells me how much you love me, and how you love your sister even more! It tells me one of your favorite things is letting the puppy kiss your face. And it pops up so quickly when you hear the voice of Mickey Mouse; your whole face lights up.
  

  
  
The first four months of your life were slower than any other I have ever experienced. The next eight flew by in the blink of an eye. Where did the time go?! Suddenly, you’re turning one, and are apparently now labeled a “toddler.” I hate that, and refuse to call you that. You are my last baby, and so you will ALWAYS be the baby. Tough break, kid.
  

  
  
I love, love, love you Jackson, more than you could ever possibly understand. You completed our family, little boy!
  

Mine

I’ve seen both my parents walk the stage for their Bachelor degrees, and later watched my mom walk for her Masters. I walked for my own Bachelor’s. I survived three of my husband’s deployments alone. I watched him thrive in his military career. I have seen my work published in places that were once a dream.

And, yet, I have never been more proud of anything in my entire life, as I am watching my kids grow and conquer their next milestone.

No matter what I do with the rest of my life, whether I go on to write a zillion best sellers or not, the best thing I will have ever done is give the world Jackson and Sydney. My own world is a better place just having them in it. Just watching Jack sleep makes my heart twist and fizzle and jump because he’s mine! He’s so beautiful and sweet and strong and brave, and he’s mine! And, my Sydney, she is so kind and loving and adventurous and fearless, and she’s mine!

These gifts I have created and nurtured and cherished and loved will do amazing things one day. I know this, because just by existing they bring a smile to my face. Who knows what they can do for the world?

Taking a Rain Check on Valentine’s Day

Last week, my husband asked me what I wanted to do for Valentine’s Day, and I looked at him, my eyes full of need, and whispered, “Take a nap.” He laughed, I laughed, and together, we decided the only thing to do was cancel Valentine’s Day.

Yep.

Not forever, but possibly, at least until the youngest is potty trained and can sleep through the night. That’s where people lose me when they tell me I have to keep the romance alive in my marriage after kids. Are you kidding? I’m working to keep myself alive and two tiny children who depend on me for everything. I don’t have time to worry about keeping romance alive, too!

Romance to me is when my husband comes home from work and immediately grabs the baby off my hip while I’m cooking dinner. Or when he throws some shoes on the toddler and takes her to the park for half an hour while the baby naps so I can get the house (and myself) back in order.

Seriously, nothing turns me on more.

I can’t think of anything worse than trying to dress myself up for a night out on Valentine’s Day, a.k.a. the Longest Dinner Wait of the Year. Why on earth would I want to detangle myself from my baby, only to shove myself into control top pantyhose and an itchy push-up bra and stand in high heels for a 45-minute wait at Olive Garden with every other couple in town?

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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.

The Engels: Final Addition

I wanted to come and show off some of our very first complete family pictures. This is my little family; I am nothing without them, now.

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One of Those Days

The day of Jack’s birth will never be a happy memory for me. I only remember the anxiety, nervousness, confusion, shock and fear of the future from those first 24 hours. Even the twelve days after his birth were full of fake happiness, and unease.

The three months we spent in the NICU were some of the absolute worst of my life. They didn’t have to be, either. Inept doctors and lack of communication kept him there way longer than necessary, and put Justin and I through the wringer when it came to our nerves, patience and sanity.

Fix his heart, we kept telling them. Just do the damn surgery, we pleaded. Close his holes up, we begged.

No, no, it won’t fix his problems. There’s something else, there’s got to be something else wrong.

Did they attempt to find other things? No. Not unless we pushed and pushed and advocated. I swear, the doctors must have hated us, because we didn’t let things go, and it still took three months for them to do surgery.

If you’ve read my blog from the beginning, you know all of this. You know every inch of our story, so why am I reiterating it?

Because some days, I am blown away by the fact it actually happened. I actually gave birth to a son that needed surgery. Three, actually; he went under anesthesia three times before he was three months old. I needed an emergency c-section. Me! My body was born to give birth: solid, wide and sturdy. Sydney’s birth was magical; hours afterward, I was on board to do it again. It was that pleasant.

Today is one of those days. I looked at Jackson as I changed him out of his pajamas this morning and I saw his three scars, plus his feeding tube port. I felt his tiny fingers of his smaller hand as I pulled his arm through the sleeves of his shirt. I gave birth to a son with a limb disability.

You just never think any of those things are going to happen to your baby, your child. You never think you’ll be told in a shocked voice by your husband, “There’s something wrong with his hand.”

I remember lying on the table wondering what the heck did he mean by that? What the fuck did he mean by that?! What’s wrong? Why? Why? WHY? I remember the anesthesiologist making eye contact with my doctor, and pushing what felt like a very, very heavy dose of anti-anxiety meds into my IV. Suddenly, on top of my panic, I felt like I couldn’t breathe, like someone was sitting on my chest. I was gasping for air.

If only that had been all. If only our sweet Jackson wasn’t about to spend 12 days just focusing on breathing and staying alive before anyone realized he was in distress. If only he didn’t have to spend 90 days in the hospital being a test subject for doctors who had no clue what to do, and, frankly, weren’t trying that hard to make anything better. Zero sense of urgency.

Today it just hit me again, everything we went through, and it shocked me. Again. It feels surreal, now, looking back. That was us, it did happen. I can’t believe it.

Is this some form of PTSD? It sounds completely asinine to even suggest that, knowing how many soldiers go overseas and literally watch hell unfold in front of them. That’s where real stress and trauma happen.

But, I truly do have days where I go into a funk. And, I’m angry, and it’s uncontrollable. I don’t know who to be angry at, so I take it out on others.

Today was one of those days. Thankfully, it’s over, and I can see Jackson smile and be so incredibly grateful in how far he’s come, and know he has a big future ahead of him. That his hand will only limit him in ways he lets it.

I don’t want the anger and the fear and the emotions to come back. I want them to go away, forever. I don’t want to feel the helplessness again.

Go. Away.

Why I Blog

I know now what emotion triggers me to write: insecurity. Let me demonstrate.

My first day as a newlywed 19-year-old, fresh out of her parents home, and having waved my husband of two months off to his job, in a strange house, in a strange state, what did I do? Started a blog.

The day I took out my first school loan to attend school full-time all on my own, in my name, what did I do? Blog.

What did I do when Justin deployed to Afghanistan in 2008? Started a deployment blog.

What did I do when Justin deployed to Iraq in 2009, and three days later I started a new, four-year university, already facing a lot of responsibility as an editor of the school paper– a school I had only visited once, with colleagues I had never met? Blogged.

What did I do when I found out I was finally pregnant? Blogged

When Justin deployed again? Blogged.

When we discovered Jackson had only one kidney? Blogged.

When he was admitted to the hospital? MAJORLY blogged. Apparently that was the most insecure I’ve ever been.

And, now, here we are. We’ve been home, I’ve been busy, Jackson’s been amazing, Sydney is happy, and my security has come back, hence my long hiatus.

So… can anyone guess why I’m writing today?

I’m feeling insecure.

Justin received some news about his job that makes the certainty I’ve been allowed to feel, disappear, and, I had an overwhelming urge to write, to get it out, to make this feeling GO AWAY.

It may not even be a bad thing. We don’t know yet. It will mean no deployments, so that IS a good thing. But, it could also mean distance from DFW, from Texas… and we all know how I am with that. Or, well, if you don’t know, then, I’ll just say, I am a GIANT BABY about being far from my parents. And, my parents are GIANT BABIES about being far from us, and their grandkids.

But, it might not mean that at all. It could mean we stay right where we are, or closer. It could also mean we could be anywhere.

Basically, our lives are up to the Air Force gods, and that isn’t something I’ve truly experienced. We’ve always managed to keep a pretty good handle on doing whatever we can to keep our destiny in our own hands. But, this time, we can’t.

And, it’s killing me.

Four extra years of not having to worry that Justin will deploy to some terrifying place (and with the way the world is going, there’s no guessing where he could end up) is a dream come true, so even if we end up across the country, I am grateful about that for Jackson, Sydney and myself. But, Baby Rachel, Selfish Rachel, the one who really has no desire to leave the border of Texas, is completely, 100% freaking out.

Hardcore. So, hello blog.

The Real Me

If you read my blog in its entirety, I sound like the most depressed, melancholy person on the planet.

It’s not the case, I swear!

Having Jackson in April and all the terribleness that happened this summer did cause me to have a bout of Postpartum Depression (it exists, Tom Cruise, so shut it! In the words of Rachel Green: “No uterus, no opinion.”), but usually my writing is witty, smug and subtly sarcastic.

I want to get back to that.

Not that deep, soul-bearing writing doesn’t have its place, because it absolutely does, but in my life, I would rather it not be what I’m known for. I want to be the writer that people love because of the hidden jabs in her writing, that, while don’t make you roll on the floor trying to control your bladder, make you smile as you lay in bed, right before you drop your phone on your face (you’ve done it, fess up).

I’ve bared my soul plenty this summer; it’s time to be a bit more chaste.

So, be prepared to smile a bit more, and tear up a bit less. Which is why, I will leave you with this: MY CUTIE!

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