“The only thing she’s got going for her is her looks!”
I joke because that’s my public coping mechanism. Privately, I worry and get angry and lash out. I’m no picnic to live with right now, lemme tell ya. Better yet, let my husband tell ya…
From an oral aversion that makes eating next to impossible, to physical development comparable to a six-month-old’s, to a constant and incessant battle with constipation that not only has her doubled over in pain, but also dictates limitations on foods she actually will allow in her mouth, to currently losing instead of gaining weight, our new one-year-old literally has issues from head to toe.
See? The only thing she’s got going for her really is her looks!
Listen, I know our situation may be small potatoes compared to what other kids and parents are going through, but these are our potatoes. Our whole family’s potatoes. This tiny child with the wide smile has had quite the domino effect on everyone who knows and loves her.
We have a lot of questions, and I have so much guilt. Maybe I should’ve pushed her to continue nursing when she dropped me like a bad habit. Maybe I should have enrolled her in a baby tumbling class to help her gain strength. I once saw a Russian 5-year-old lifting weights and doing flips or something; maybe we should move? Maybes, would’ve’s, could’ve’s, should’ve’s. Thinking that way just wastes time and creates ulcers, so I try not to do it, but I gotta say: I wish someone had given me a heads up about how all-consuming having a sick kid can be. I’m pretty surprised at the things that keep me awake at night. I didn’t anticipate having a kid with special needs (is that what I have? A kid with special needs?), and I certainly didn’t anticipate some of this other stuff…
10 Things I Wish I Knew About Having a Sick Kid
1. There is fury building inside me and it’s going to erupt and no one is safe. The lady in front of me steering her silver Buick to the tune of 6 miles per hour. The store clerk who didn’t smile as he accepted my money. Any and everyone. This rage is second to none. I’m not necessarily surprised at feeling angry because that’s pretty much my normal response to an abundance of stress (I’m available for children’s parties!), but the blinding, seeing-red, on-the-verge of an explosion every.single.day has really thrown me a curve ball. I function much better with a fast ball on the outside of the plate.
2. My husband and I may throw down. He asks a question, I answer, he pretends to listen, and then asks the same question six seconds later. The vacant expression on his face is there more often than not, and it could be because he’s resisting the urge to scream at me for disrespecting him and talking to him like he’s a moron. What I seem to forget is that this child also belongs to him. He also worries and has opinions, and even though I think I’m her biggest advocate (I am), he’s frantically waving his arms in the background, all “put me in, Coach!” and I’m all, “Sit down and shut up.” Who do I think I am?! But, who does he think he is? Why can’t everyone just listen to me and let me be the neurotic asshole I need to be right now? I’ll apologize later, I promise.
3. When I’m done scolding the grown man who shares my bed, I want to snuggle up to him and never leave. I can’t imagine I’m welcome in his arms after being the biggest bitch to ever bitch, so I keep my distance. Strangely enough, I’m beginning to understand how couples crave each other and maybe even conceive during times of high stress and tragedy. Then that feeling passes and I’m back to throat punch mode. I am a treat.
4. Stress has physically manifested itself in my body. I would like to thank the age spots that have popped up around my eyes in the last month, the chin acne that gets worse as the weather gets warmer, and the insomnia that plagues me at night, zapping me of energy in the morning for an all-around stellar appearance and attitude.
5. The tightrope we’ve put the older kids on is a little too narrow and wobbly. We’ve decided we don’t want to keep the baby’s health concerns from them, but how much information is too much? Unfortunately, even limiting what they know, our 4 and 5-year-olds are absorbing stress via snippets of phone conversations they overhear, and from the general chaos that has become our home. The boy has been acting out and I’ve been losing my patience. The girl has been exceptionally whiny, but unlike her brother’s reaction, instead of defying us, she’s trying to make her way back into my uterus. In fact, today she told me, “I’m going ev-wee-where you go ’cause I yove you!” Then proceeded to attach herself to my leg.
6. Most pregnant Mamas can attest to the tendency to nest right before giving birth; I’m not pregnant, but I’m obsessively nesting: cleaning books–books, you guys–rearranging furniture, frantically de-cluttering every room in the house. I’m burying myself under any project I can control. Psychologists everywhere delight.
7. Yesterday for the baby’s appointment with the Feeding and Swallowing Team, I actually fixed my hair and put on make-up. I changed my outfit 3 different times and touched up my toenail polish. At first, I didn’t understand what I was doing even while I was doing it; I just thought, “Oh, how nice to care again!” Then I realized I didn’t care about looking nice; I wanted to look capable, like I’ve got it together. I don’t. I’m hanging on by a thread, but I’ll be damned if the doctors see it. Which brings me to…
8. The judgement. I am a reasonable person; I know that the teams of doctors and specialists and therapists aren’t sitting opposite us in a small room with concrete floors passing judgement on our parenting. In fact, they commended us for recognizing a problem and for taking steps to solve it. (Side note: don’t most parents do this, get help for their kids when needed? If not, it makes me sad.) They ask a slew of questions to learn about our baby and create a holistic approach to treating her. See? I get it. That doesn’t mean I don’t replay all of my answers over in my head the second they’re out of my mouth, or wonder what’s going on in their minds when I admit, “We don’t offer solids more than once a day; it’s just so…hard.” Do they think I’m a terrible mother? Is my husband, who didn’t shave before the appointment, giving them the impression that he doesn’t care? The answers to those questions are obviously no, but also maybe yes could be.
9. The stress extends beyond the four walls of our house. My mom can’t have a conversation about the baby without tearing up, and my dad has been extra irritable lately. Even our dog has a bladder infection! Can stress cause a dog to pee all over the place? I can’t say for sure, but I’m willing to bet everyone is hanging on to the same thread as I am.
10. I never imagined I could feel guilty for feeling grateful. This is a small bump in the road of life; we’ll smooth it out and eventually get over it. Other families aren’t so lucky. Even though our bump kinda looks like a mountain with jagged rocks covering its surface right now, we’ve got this. With prayer and support and love, we’ve got this. At least that’s what I tell myself when I wake in the middle of the night.
Love you, friend. I know this is so hard on all of you, but you are such a good Mom and such a strong family. You are doing your best to give your little lady the best help possible because that’s what we do as moms–we do everything we can for our babies. xoxo
Stephanie Jankowski says
Heart you, too, pal. I appreciate you. Now come back to the ‘burgh so we can hang out!
Amy Flory - Funny Is Family says
Even when you’re writing about something that breaks my heart, you still make me laugh. I’m glad I’m seeing you very soon, because now I need a hug. Be prepared, it’ll be long, awkward, and probably sweaty. You got this, pal. Really and truly.
Stephanie Jankowski says
I can do sweaty 🙂
Thank you, friend!
Fersht – you cannot, and will not, ever be able to hit a fastball on the outside part of the plate. Second – everythjng will be just dandy we will all get through this as a family, like Tony Soprano. Thirdly – is that a word? Thirdly – perhaps I will take my niece and nephew out one of these evenings to help alleviate some of your stress. Now Id like to watch The Sopranos. “What’d you say to your mudder?”
Stephanie Jankowski says
Thank you, brudder. 🙂
And I could always hit a fastball outside and up. That was my sweet spot. So suck it.
Jessica (@jessbwatson) says
I’ve been thinking about you so often. I know going through medical stuff with your kids, especially medical stuff that it feels like no one else is going through, is so difficult. You really are doing a great job and if you can hang onto even a shred of your sense of humor, you’ll survive.
Stephanie Jankowski says
You’re incredibly sweet, Jessica, thank you. I know you’ve been through the ringer, and to have your support and kindness means a lot to me. Thanks, pal! xo
I can’t really say anything that hasn’t already ben said by these other fabulous ladies, but I do understand the overwhelming stress. I really do. I know you feel like you are drowning right now. I’m glad we get to see you in person next week and hug your face off!
Stephanie Jankowski says
Aww, thanks pal. I cannot wait for BlogU! It’s going to be a great distraction and break and YAY!!!!!!!!!!!
Camille Nones says
I can only imagine what you’re going through since I don’t have a kid yet of my own. I’m pretty sure though that I’d be going crazy if one of my kids are sick. I have a nephew, and I get so worried sick when he is sick. I’m so sure you’re doing better than you think. 🙂