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.

From All Sides

Where do I even start? It’s… no. There are no words.

Wait. There are always words.

Frustrated. Discouraged. Scared. Failure. Ticking time bomb. Exasperated. Edgy.

All words used to describe my week and my emotions.

Last week I went in for mid-back X-rays due to pain I’d been having. No big deal, just wanted to make sure I didn’t have a bulging disc or something.

I didn’t. However, the radiologist saw a nodule in my lung; a 7-8 mm nodule. I’m having a CT on Wednesday.

WHAT THE EFF, MAN?!

A break. It would be nice for our family to catch one.

The punches kept on coming. Jack’s geneticist appointment went fine, except for when she added a diagnosis of Moebius Syndrome on top of everything. A mild case, but still. Look it up, it’s not pretty.

Reeling from that, but hoping for a positive result from his swallow study, we pressed on. Did he pass? No. Still aspirating everything, even thickened bananas. I couldn’t cry surrounded by three speech pathologists and a radiologist, so I shoved my tears aside.

They’re falling now.

And, we’re not even done. Tomorrow he has appointments with neurology and nephrology (kidneys). Let’s see what more bad news we can pile on.

I’m sick to my core. Panic attacks and aching deep in the pit of my stomach. I just want my kids to live happy, full lives. And, I want to be around to see it.

Stupid, STUPID week.

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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