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.

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! ❤