Farmer Lee, the Problem Solver

It’s a Wednesday night. It’s my night out. One may think I’d be drinking wine somewhere with friends,  but alas, I am speaking at a farming workshop.

So, I texted my lovely husband to check in on the dramatic kid. Listen, I love her, but she is dramatic and I call it like I see it. I have no idea where she gets that. Really, no idea…

I received this photo with the caption, “I’m a problem solver.”

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Yes, Lee Gauker. You absolutely are a problem solver.

You see, our super dramatic kid cries hysterically if you leave her by herself in the room. Always. Hysterically. Like, you’d think she’s dying. If you take her in the bathroom with you and have to put her down to you-know-what, she cries. Hysterically. Like she’s dying.

This photo is taken in the bathroom. She’s in her chair. Apparently to solve her ridiculously dramatic hysterical crying, he took her into the bathroom with him, with her chair so she didn’t have to sit on the rug in the bathroom. Not on the floor. In her chair. Still able to use the bathroom.

Congratulations, Lee Gauker. You won the night! You are a problem solver.

*Claps hands slowly*

How Do You Do It, They Ask. I Don’t, I Say.

On the way back to the event we were to be at this evening, from going to Lowes to purchase a table for the farmers market – style event that I forgot a table for, I said to Lee, “I’m a freaking mess. People ask me how I keep it together. I tell them I never did! Ever!”

“If anything, it’s probably gotten better since you had a kid,” he said.

“At least I admit my shortcomings!”

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It’s true. I have always, 100%, been a hot freaking mess. I would forget my head if it wasn’t attached to me. It’s true, and I admit it to the fullest extent I can.

You see, we decided to go to this event on a whim. I let Lee decide if we went. He said we should, so I spent the weekend putting together a wholesale flyer and some stuff for a display.

We packed up Callie after work and headed to Easton. I forgot the dang table.

So, we get there, and I realize it. I call my friend, T-Hahn whom will also be attending, and he recommends Lowes since he was almost there, too. Super. We can do that.

So, we go to Lowes, and I select the 4 ft table because the 6 ft table is bigger than we need and the other tables we have are 4 ft. I check out. I’m making great time. I get to the trunk and the DANG THING DOESN’T FIT! Because our other 4 ft tables fold, and this one doesn’t. So, I have to go in, return said table, and buy the 6 ft table that will fit in the trunk. It took forever for the lady to return it because she can’t multi-task. I’m annoyed beyond belief, but retrospectively I can now see that’s extremely hypocritical of me. After all, I’m the one that forgot the dang table and how has to rush around like a crazy person.

Here I am, the crazy lady again!

We get there. We get set up. Everything is fine. My bladder is about to explode though. I find the bathroom, up 3 flights of very long, steep stairs. I got back downstairs and Lee says Callie probably  needs changed. Super.

I’m not carrying my kid up those stairs. I’m tired and sweaty from running like a crazy person and carrying stuff around, and those are steep stone stairs.

I find a little side room and put her down on the changing pad.

You know where the story is going… yes. It is. She did.

Green poop up the back. Awesome. Good thing I’ve got ample wipes, and plastic bag, and a change of clothes.

Can’t remember a dang table, but we’ve got the tools to handle this. Her shoes need washed, though. They’ll survive this, but they need a swirl in the washer. With soap. And not just a swipe of the wipe.

I also find it ironic that we went to a Buy Fresh, Buy Local event and stopped at Burger King on the way home because it was fast, we were super hungry, and we didn’t have time to eat at home before Callie’s bath and bedtime.

We ooze class. And irony. And I don’t, nor will I ever have it together. No fear, though. I’ll die trying!

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I’ve Hit Crazy, Fat Momma Cow Status and I’m Not Sorry

That’s right, livestock friends. You’ve heard it here first. Crazy, fat Momma Cow over here. Like, way bad crazy. #sorryimnotsorry

Today, when I dropped the containers of meat Step 2 baby food from my hands full of milk and coffee creamer for the 3rd time this afternoon, and the nice manager man said, “slow down. You got more things than you were planning to,” I wanted to look that man directly in the eyes and says, “sir, you have NO IDEA how right you are.”

Instead, he placed my milk on the counter, the nice associate went and got me a new container of baby food that luckily did not open or explode all over the floor, and I went and got myself a basket. After all, I could handle all of this stuff I wasn’t expecting to get. I just needed to get a basket to carry it.

So, I slowed down, gathered my things in the basket, checked out, and went home. Then, I put Mickey Mouse Clubhouse on for Callie, and poured myself a glass of dry red. Everything is fine.

Why? Why was I rushing? Why was I letting a crazy lady I was emailing with previously make me a frantic, crazy lunatic when I already was carrying so much stuff?! Seriously though?! Why do I do that to myself? Why do YOU do that to yourself? It makes us drop things and be a crazy person!

We’ve all got stuff, man. All of us. Family. Kids. Work. Life. The abundant amount of stupid or ignorant people who purposefully make our lives harder than they need to, taking our attention away from the things that matter most?! My stuff isn’t bigger than yours, and your stuff isn’t bigger than the next. We’ve all got stuff. How we chose to overcome it – that sets us apart.

Get the dang basket already. Help yourself first. And if you know someone who needs to hear it, tell them to get a dang basket.

Who knew there would be wisdom in a trip to get milk today?!

Don’t be the crazy, fat momma cow. Be the fat and happy momma cow. They have way more fun.

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Dear New Mom Jodi

Dear New Mom Jodi:

In the words of your college friends: nobody died. Look at you go, having a kid that defies odds and Mother Nature.  Life is hard right now. Get used to that. It’s not going to get easier. That’s just how life goes. The sooner you suck it up and come to terms with it, the better off you’ll be. Put on your big girl pants. You’re a new mom. To a flipping miracle.

Your baby in the NICU? She looks like ET now. But in a few months, when she gets her tracheostomy and you get sent home to pretend like you know what the hell you’re doing raising a “high maintenance” kid, she’s going to be the cutest, smiliest, happiest kid ever. You’re going to hear stories about crying, screaming kids that don’t sleep, or eat, or are cranky and miserable. You won’t know what that’s like, but you can tell them where to find the children’s suppositories in the drug store. Priorities.

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Your career working with people is going to come in handy. You will need to use those restraints, careful words, and attention to detail and memory recall when dealing with doctors, nurses, specialists, and schedulers. God knows your husband isn’t going to do that for you. And if you play your cards right? Well, you’re going to deliver your expectations once, and it will be inherently clear when those expectations haven’t been met. And you’ll earn a great deal of respect from the people who need to meet those expectations. And they know they’ll meet them or you will find someone else who will.

You have no medical background. None. But you’re willing to learn. And you’re scared to death at failing. Failing your kid. Failing yourself. That deathly fear of failure? That will get you through the most difficult times to come. You won’t fail. You’ll be fine. You may cry hysterically at work one day because the night before you gave your kid a bath and started at her feet instead of her head. You know what? Nobody died.

You’re going to quickly learn you have new priorities. You won’t even know it. You’ll be trying to make appointments for your kid, and the doctor will HAVE to see her on a certain day for a vaccine or something that will take up a ridiculous amount of time when it doesn’t need to. So that conference you wanted to go to? The one you paid $150 to attend for one whole day? Yeah, well, good thing you have a fabulous coordinator to give that registration to because you, my friend, are going to the doctor. With Cheese.

Suck it up, buttercup. You’ll be fine. Nobody died.

What Goes Through a Parent’s Mind When You Find Out Your Kid Needs a Trach.

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Hi, Friends!
It’s been a while. Sorry. Busy trying to be mom, wife, project manager, farmers market vendor… all that fun stuff. You know how I roll.

A year ago today, an ENT specialist (that’s Ear, Nose, and Throat in case you’re like me and forget medical acronyms because you work in agriculture and you’re fresh out of acronym memory) came into Callie’s room on her first full day at CHOP, after a trip to the OR (Operating Room) to tell us our daughter would, in fact, need a tracheostomy. They drew pictures and showed us pictures of why it was needed and we understood. I mean, this kid needed another 14 weeks to full grow before she was supposed to make her appearance. We were lucky beyond measure that the only thing she needed was a tracheostomy  (and a feeding tube, but that’s so minor it’s crazy). We thanked the surgeon and he left.

So, it was me, Lee, and a sedated Callie, hanging out in her NICU room at CHOP. I’m pretty sure all 3 of us at that point looked at each other in sheer horror thinking to ourselves the same thing, “how in the world are we going to do this?! We (you) are NOT qualified for this deal!”

There’s not much that enduces an extra special heaping dose of self-doubt quite like finding out your “medically fragile” kid is going to require a breathing tube through her neck and 24 hour care for a while. First, you’re a relatively new parent. You have no IDEA what you’re doing in the first place, and now you all but need a medical degree to help your kid live.

You are going to spend the next few years of your life relying on a stupid piece of velcro. A stupid piece of velcro that holds your kid’s airway open so she can breathe.

And if you think that’s scary, wait until later in life when you learn just how important that stupid piece of velcro is because you get to watch your kid turn blue. 3 different times. Before she turns one.

Let’s just agree ignorance is surely bliss at this point, shall we?

But here we are. A year later. About 15 pounds heavier. A hell of a lot smarter. A whole lot more tired. And a ridiculous amount more appreciative of a rubber tube with a metal spring in it, and a stupid piece of velcro.

I Still Firmly Believe I’m Not Qualified to be a Mom

Still following the saga of the Charmed Farm Mom fighting the insurance companies? Let me catch you up.
• Still fighting for a back up ventilator.
• Realized we need a back up feed pump and suction machine, too, that we don’t have. Need to start fighting for that.
• Supply company never notified me insurance will only cover 4 Farrell bags per month – bags that are supposed to be changed every day that relieve gastric pressure. I have a letter of medical necessity from months ago that we need them (and our surgeon says we need them). Not sure why insurance won’t cover them all of a sudden, after shipping a month’s supply previously, or why no one notified me. Guess I need to fight about that, too.

I’m really not a fighter. I’m a lover, not a fighter. But when my husband and I, and our friends and family, work each week and pay into a system that’s supposed to help people in situations like ours, and companies that I’ve had the displeasure of working with through our experience are complete and utter jerks, it’s really hard to keep my composure. Do NOT mess with my kid and her health!

I need to tell you, though, that I have felt since before conceiving this piece of cuteness kicking on the floor here beside me that I did not feel like I was qualified to have a child. And I still don’t. We need licenses to operate vehicles that drive 100 miles per hour or more, but don’t need a license to bring a child into the world?

I digress.

I mean, I cannot get myself together. I have calendars and to do lists and reminders in my phone and I’m still not in time and forget appointments. I can’t even begin to tell you how many chiropractor visits I’ve missed, and i absolutely need them! And really, this has been for YEARS, like before I had an excuse (valid or not!).

I hear a lot these days, “I don’t know how you do it.” Let me be the first to tell you I’m NOT doing IT, whatever IT is. You know what I am doing? Walking around here, playing with Callie, and praying like hell that I’m doing right by her and not screwing anything additional up along the way. So if by IT you mean skating by on the skin of your teeth, then I guess, heck yes! You bet I’m doing IT!

Don’t get me wrong. I think all mom’s have self-doubt and probably guilt. Am I doing the right things, whatever those things are? Am I raising my kid? I don’t care who is judging the crap out of me right now, but is this kid going to be ok – special needs or not? I don’t think that ever goes away. And I don’t think it ever gets less. Bigger the kids the bigger the problems, right? But gosh, for my sanity’s sake, I hope the overactive self-doubt drive I’ve got going on dies down soon.

I’m not asking for help. I’m not telling you all of this for pity, or anything. I don’t need counseling, or help, or a pep talk (I get those from Kid President!). I’m sharing this because I’m a mom. A normal, every day mom with normal, every day problems and work and life, that happens to have an adorable baby that has required 6 ER visits since she came home 3.5 months ago. I’m a mom and I want other moms to know it’s OK. You’re not alone. And we’ll vent, we’ll get over it, and we’ll move on to the next obstacle, no matter how big or small. And hopefully there will be a lot of smiles and love in between.

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And I’m pretty sure the poor girl that answers the phone at our supply company when I call prays for that, too. Her ear, and eyes from emails, probably can’t take much more.

“When Are You Going to Blog Again?” He Said. You Should Have Enough Material, He Said.

On the way home from the hospital yesterday (for the second time), Lee looks over and says, “When are you going to blog again? You should have more than enough material now.” Yeah, I do. But I don’t want to sound like a miserable human, either, and right now, that’s exactly how I feel I am. Fortunately Callie is happy, pleasant, and smiley enough for both of us. Thank you for taking one for the team, kid!

Currently, I’m sitting in the hospital PICU. It’s only Day 2. When I went to the cafeteria to grab lunch when Callie was sleeping, nothing appealed. If you’ve ever been to Lehigh Valley Hospital’s cafeteria, you know there are plenty of options and all of the food is good. So when nothing appeals anymore, you know you’ve officially spent too much time in the hospital cafeteria. It’s time for a break already.

And hopefully, we’ll get a break soon. Callie had a g tube placed in her stomach so that her tube feeds can go there instead of having a feeding tube taped to her face and hanging down her throat into her intestines (you know, because she’s got reflux and pukes, so it needs to go to her intestines and not her stomach so she can’t throw up formula and aspirate). She also had a nissen done. The surgeon takes part of the stomach and wraps it around the esophagus to prevent her from throwing up and aspirating again. Hopefully this operation will solve our feeding and reflux issues. Hopefully.

When you’re a parent, lots of people feel like they need to give you new parents “advice.” I just want to go on the record saying unless you have a “chronic kid,” please offer all of your friendly parental advice to someone else, because it’s really not helpful to us in any way, and we judge you for it. Now you know.🙂

One such piece of advice was, “oh, she’s sleeping? You should sleep, too!” While that may be really great advice for the “normal” parent, we have a chronic kid. If she didn’t have a feeding tube taped to her face, that if pulled partly out she could aspirate, yeah, I bet we could nap when she naps. You know, knowing that if she pulled her trach out somehow while we were sleeping, the vent alarms would go off so we’d wake up to that. Best idea ever, right? Yeah, there’s a reason we’re fortunate enough to having nursing 18 hours a day, and it’s not because we can’t hack parenting. So, please, unless you’re a “parent of a chronic kid,” donate your sound parenting advice elsewhere, please.

Three times since I brought up the WordPress site in my browser so I could start typing, Callie has set off alarms. She “desatted,” which means her oxygen level dropped. And by dropped, I mean she was moving around and kicking too much that the sensor didn’t pick up correctly. Machines don’t know that, though. They say, welp, I’m picking up at 86 or 81, and you’re supposed to be above 90, so I’m going to ding really loud until someone silences me, or you stop moving and stay perfectly still so I can get a good and accurate signal. Ever try to tell a squirmy almost 9 month old to stay perfectly still? What’d they say to you in return? Get a clue?

So anyway, she’s over in her crib, laying almost flat, playing with her hands. She’s having a really hard time chewing on her hands, because she has splints on her arms where her IVs are and she can’t bend her arms to get her hands to her face. So far, as long as we continue down this same path, we’ll go home Friday. Friday can’t come soon enough. Friday, we’ll go home, and lay her flat, and watch her try to roll over. And it will be glorious.

I’ve also had the opportunity today to speak with the Medicaid company about their denial of our second ventilator. Because they still say no. So I have the opportunity to get our pulminologist involved now, because we’ve got to see him now, and he’ll help us out. I don’t know what prerequisites are for working in insurance, but it must include, “ability to be an absolute jerk to others in need, not return phone calls, and otherwise be a miserable human.” If you work in insurance and this does not apply to you, let’s talk.

And, I’m trying to work. I’m trying to go back part time. And by go back part time, I mean continue working part time from home, and hopefully start getting into the office more often. And I ask myself every. single. day. how in the heck I’m going to go back to work with all of Callie’s appointments, and insurance battles, and the farmers markets, and the farm stuff, and the house stuff, and everything else that just isn’t getting done. How?!

Guess that’s material for another blog at a future date.