6

When I was 6, my biggest concerns were, getting to ride in the back seat of the bus, if there were Dunkaroos, and if I could sleep overnight at my cousin’s house. To me, these were the big things. These were the things I thought about, among others, now minor and of little value to me.

What my own 6-year-olds biggest concerns are, are far more painful, anxiety inducing, and serious. Topics that no one wants to address, no one wants to recognize as actual legit concerns, and something that many would push under a rug, shrug aside, and avoid discussing.

Except I have to.

On December 10, my daughter, in a journal full of all things unicorns, pink ice cream cones, and all things happy, drew a picture of her brother in a hospital bed.

It reads, “My brother will have surgery soon. I am worried.” A beautifully accurate drawing. One she could not have fabricated with her tiny 6-year-old mind. One that most children wouldn’t understand if they looked at it. One many adults would also question.

But my 6-year-old, she has lived it. She’s been living it for over 3 years. She has watched her brother in and out of hospital beds, with lines and needles coming from all parts of his body, with cuts, scars, bloody openings, oxygen, and everything else that comes with congenital heart disease.

A few days ago, she came upstairs fairly pale. I asked her if she was ok (this was prior to my knowledge of this drawings existence). She said yes, with a cold sullen look. I asked her again what was going on. “I’m worried about Charlie having surgery.”

Well ya know what babe, so am I.

She asked me if it had been scheduled yet. I told her it hadn’t and that as soon as I knew we would talk about it. I had already been proactive in getting her some materials from the hospital to start preparing her for the inevitable surgery.

And for days she has held this, we’ve discussed it. She’s acted out, she’s been upset, she’s been having anxiety attacks. And this morning, she visited with her friend Rachel. When I was called in to discuss their visit, she said, “don’t tell her.”

Now what could my daughter possibly not want to share with me? There is nothing I don’t want her to be comfortable discussing with me. We talked about a few of the typical things. And then she said, “Rachel can tell you.”

What was it she didn’t want to share? What could a 6-year-old possibly be hiding that was so scary for her to tell her own mom? Well, her real and legitimate fear, of her brother dying.

In the visit, I acknowledged it as a real concern. Slightly caught off guard that this is the thought she’s been holding onto so tightly. The secret she hasn’t felt comfortable enough to share out loud. Was she trying to pretend it wasn’t real? Was she trying to wish it away? Was she trying to protect me?

I don’t know. The truth is, it took her an entire month since that drawing to gain the courage to even say it out loud to someone. That someone, wasn’t me.

My first action was to let her teacher know there was this concern before I returned her to a full day of learning. What a way to start a Monday, she’s freakin 6!

I’ve mulled on this all day. Ran through my brain the best way to approach it. How do I address something that is so raw and so very real? The risk that comes with every surgery. Something…something that even I don’t want to say out loud. Something that only I can hold in the teeny, tiny, part of my brain I’ve shoved it into, because once it surfaces, it fucking hurts. It rips at your very soul and continuously burns in your chest at the very thought. And now, I’m not only worried about the reality of her concern, but the reality of her having to deal with its poison sitting in her young mind.

Tomorrow, tomorrow is the day we may actually get some answers. Tomorrow could lead us forward, or it could hold us in the same pattern of waiting, the same anxiety game we’ve been playing. “When will surgery be?”

Tonight, I dropped her off at my aunts for the night to play with her cousin and have a sleep over, a safe place. 4am is just too early to trade her off before we head to his appointment, so she needed to spend the night. And she was a hot mess, and at this point, I am completely helpless to fixing that. I hug her over and over again, and then, I have to just trust that she can handle this for tonight. She is my child after all, she can do this.

But, how do you match a 6-year-old hot mess? Well, you turn into one yourself. I got home and I sat on the deck, because to heck if I’m going to worry the 3 year old inside, and then with the tears. ALL. THE. TEARS. I felt them stream down my face, warm as they came out, and slowly turning cold on my cheeks. They dripped onto my chest, as I continuously wiped the after math from my face. And then, as always, I picked myself up. Because no matter what happens, we have to do this.

This, this is our reality. A painful, real possibility, I pray to God I never actually have to physically deal with. Those moms that have, those moms are pretty damn amazing.

I still don’t have the words for that 6-year-old. I don’t know that there could ever be words that could buffer, or mend, or stop that feeling, that very real fear. The only thing I can offer her is to pray. Pray often. Pray long. Pray hard. That’s it.

And dear God, if someone can find me some Dunkaroos, my 6-year old-self would be forever grateful.

It’s Something You Grow From

Over the last week I have found myself noticing the small things. Things that may seem small to those doing them, but to the one person they are making the difference for, those things are huge.

On Wednesday, I was uneasy, I was worried, and I just knew that something was not ok. It started with the simple gesture of my work mama requesting that I keep her posted after Charlie’s appointment. A last minute appointment that had me all kinds of on edge. That gesture comes easily for her, she says it to me often, “let me know when you get home” in the thick of a snow storm, “let me know how your presentation goes” when she knows I’ve been planning for days, and that simple hug that I deny more often than not, but is always available on the off chance I wish to request it, which I did.

The next gesture came from Charlie’s dear PCA. That girl has been such a blessing to not only our children, but to me. She instantly offered to accompany me to his appointment. I don’t know that I’ve ever wanted someone to be at his appointment, to just offer moral support, and help me control his crazy. But that day, I needed that back up, I needed the sense of ease that she offers, and I was willing to accept her help. That day, my anxiety needed her.

And following that appointment, I had my mom. My mom waited in the waiting room while Charlie went into his appointment, following which she went to pick up Mya. And when I got home and got that phone call that Charlie needed to be admitted to the hospital the night before Thanksgiving, I needed my mom. Now I know that for my mom, that’s what it is, it’s simply being my mom. But to me, she was there in a moment when my PTSD enraged, and I was on the edge of falling apart. She laid out clothes for Charlie, she cleaned up what she could, she took Mya to a safe and comfortable place, and she held me as I sunk into her, full of tears.

And though not all of you will understand this, being told, “Got the P man on it.”, by a kind soul, I appreciated the shit out of that gesture.

In the hospital, we received what I would consider exceptional care. I can honestly say that not once was I frustrated, annoyed, or irritated with the quality and general caring and compassion that was shown to Charlie or our family. In a time that was challenging for us, what we needed from the hospital staff, was exactly what we received. Simple for them, their job maybe, but for me, displayed a level of understanding and excellence that was beneficial in keeping me calm and in control.

And Joe, as minimal as it maybe was, walked to Midtown Global Market to get me Taco Cat. If you know me, you know I love me some Taco Cat, and that is food that touches my soul.

On Thanksgiving morning, no less, I received the second of two calls from Charlie’s primary doctor while he was hospitalized. I don’t know that I could ever explain to that sweet man the role he plays in our lives. He may not always have the answers for my complex child, but he never pretends to, he seeks out answers, he never stops trying, he never stops caring, he never thinks I’m crazy, and he always checks in, always. Even on Thanksgiving.

The moment I realized how much all of these small gestures were adding up, was when I walked down the hall to warm up my left over Taco Cat for my Thanksgiving Dinner. As I walked the hall with my plate of reheated food, I noticed two doctors and a nurse practitioner walking in the hall, with their Tupperware containers that they had just warmed up their Thanksgiving dinner in. I wasn’t the only one spending my Thanksgiving the non traditional way. They were all missing dinner with their families, instead, they were spending it with mine. A tradition we have carried on 3 of 4 years now.

Do you know the impact that your phone calls, texts, and messages have on me? You all comment so frequently that you aren’t sure how we do this. Well, you play a big part in that, every time I get a notification that someone is praying for Charlie or thinking of our family, it keeps us going. Knowing that we will always have that support and that outpouring of love for Charlie, those small gestures mean a lot. And this past week, again, you reminded us of that. Thank you.

Upon our Thanksgiving afternoon discharge, we surprised the afternoon nappers. We were greeted with hugs, smiles, questions, and love. Oh, and cheesecake and wine, can’t forget the important details.

On Friday, Charlie and I headed off to the cities with anticipation. We were given the disappointing news we expected, and then some. And in typical Charlie fan fashion, you shared your love and encouragement. My sister, in her own chaos took time to check how I was doing. My friends extended their non-judgmental hearts to me. And my Mama tribe, they came to show by letting me be real, unfiltered, and showing up with hot chocolate Rumchata.

Saturday, I reached out to a friend who was going through some anxiety of her own. The conversation only brought our souls closer together. And in that conversation, I grew. She said to me, “I have a lot of healing to do around Peyton. Working on it. Know that praying for you and Little Man helps me SO much.”

The thing is, these experiences, these pains, they are not something you heal from. You grow from them, you evolve. You can’t be expected to heal from a pain like that of hers, losing her son. Especially if one has trouble healing from the pain of giving up their “normal” child for one with a broken heart. I’m not passed that. I’m not going to stop wishing some things were different or easier for him. But I’m going to let what he has to offer grow me and help me become who I’m suppose to be. Because, he is exactly who he is suppose to be.

So in those days, in those moments when I should be feeling pain, I should be feeling sadness, I do. But then, I allow those bad feelings, the ones I hide, I allow them to evolve. They become the small signs in the hallway, the gestures from friends, and they appear in the most chaotic, excited, life loving little boy you’ll ever meet.

From among the small things, the big things are made.

Unexpected

Unexpected. That’s it. That’s the word I’ve been searching for but couldn’t place. It just as well have been your middle name, maybe even your first.

Your very existence was unexpected. And every moment since has been unexpected. Wether it be a disaster or a blessing. Every one, bringing its own uniqueness, that has become you.

The other day I watched you on the sidewalk. I talked you through how to draw a sun, you named the colors as you went, and then you took each piece of chalk, walked to a new spot, and placed each one perfectly in a row. Constantly looking for my approval of your masterpiece. I was amazed by you that day. Thinking how amazing it is that you start preschool soon. Equally terrified to let you venture somewhere new without your security blanket stand-in, aka Mama, along.

I tried to put into words what was so amazing. But I couldn’t. Because it wasn’t any one thing. It was everything. It’s everything about you that I never expected, that unexpectedly sneaks up, and catches me off guard.

You are so unexpectedly you. The boy I wasn’t sure you would ever have the chance to be. You lead me on fast chases through the store, the park, the backyard, the clinic, well pretty much every where. You strike with your Tietel Tornado in split seconds of time, that leave horrific destruction for days, sometimes weeks at a time. You soften the blow with gentle kisses and tight squeezing hugs. You count to 13 and recite your ABCs with ease. Your night time prayers to Jesus are the sweetest sound. You impress everyone when you rattle off your birthday, and you can now spell your last name flawlessly. You crank out a ball better than your sister. And your left handed pitch is going places. Your Houdini moves as of late are proving quite impressive and equally terrifying, the nurses thought your skills as an infant were stellar.

You are never what anyone expects, neither good nor bad. When they look at you, they see a little boy. That’s all. They wouldn’t expect the unexpected from you. They wouldn’t expect that in your medical file lie a pile of issues and concerns. They wouldn’t expect that your medication list is over 20 long. They wouldn’t expect that on your chest is a long scar, and not from one, but three open heart surgeries. Even the x-ray tech doesn’t expect to find pieces of metal inside your body (I still don’t tell them until after they get all excited and worried about it). They wouldn’t expect that in that giant binder I carry around, is your life. They wouldn’t expect that you recently received “disability certification”. You are the definition of not defining a book by its cover. The cover is impressive, what’s inside is something you’d never expect.

You are the unexpected.

Inside that cover is a little boy who fights very hard to be a little boy. The only routine in your life, revolves around medical procedures. When something unexpected happens to you, you roll with it. Your book is being written with never ending suspense, thrills, drama, and love. It’s one of those books that takes a twist in every chapter and never ends how you expect it to. Those are the best kind.

I will expect however, that you continue to teach me how to live without expectations. Other than that, I will expect nothing but the unexpected from you, and your insane ability to melt me with a single smile or silly face.

Remember that New Car Seat?

Have I ever told you how much I love vomit in my car? No? Well, apparently I forgot to tell Charlie that it is, in fact, NOT, a favorite thing of mine.

Last night I came home to a child with a blazing fever. Okay, so what’s new? Give the Tylenol, retake the temp, get some rest. The boy wouldn’t go to bed til midnight! Mylanta, I also must have neglected to inform him that we needed to be up by 5am, to get ready for his appointment. My bad.

Once he was out, he was out, for a whopping 5 hours…luckily someone has a chauffeur while they sleep in the car, the entire drive. Not sure why you’d want to sleep through my concert? But whatever I guess, the show must go on.

Appointment time! We’ve waited 2 months for this appointment, we want results, we need some insight. Charlie cooperates 110%. We leave feeling optimistic, minus the ear infection, which I already assumed was the issue from last night.

The next appointment for the day isn’t for a few hours, bam, impromptu trip to the zoo on this gorgeous day! GPS, show me the way…

Enter the voice of Charlie’s Asthma (if you’ve never heard it, picture the devil on your shoulder, with a raspy voice, and an evil laugh like Cruella). “Oh, are we going through a tunnel surrounded by traffic? There’s no way your mom can pull over? This sounds like a solid time to attack you, make you lose your breath, and cause you to vomit profusely. Yep, just like that. Oh, wait, a little more. Oh, are you upset now. Oh, and your mom handed you the vomit tray now. My work here is done.”

Seriously, seriously? Again? In the car? Stuck in traffic? AGAIN?!

So the Zoo is out, GPS reroute me to Target please…

And right when I feel that God is completely using me to his own humor (I like to amuse people so why not.) The glimmer of light flickers on in my brain…

There is a benefit to friends, who spend equally as much time as you, in the cities for appointments. Often those days collide. And when you are most desperately in need of a car seat you don’t have to buy, they come to your aid as they arrive for appointments.

“I’m in Bloomington, meet you in the parking ramp.” Hallelujah!

Next call, ring ring. “Children’s Psychology.”

“Yeah, we are suppose to come at one. But my son just threw up in my car. So,I’m gonna go with we have to cancel.” I’ve only been waiting a month for that appointment…no big deal (eye roll 10x).

Now, you feel like this story is over. Oh, it’s not. Now we have to take out vomit covered child, the NEW car seat from the last time he threw up (that is now, equally soiled in a whole lot of Nasty), and son of a bitch… Remember when I set aside the leather seats for low miles and less cost? Yeah, me too, it’s pretty painful right now. As I’m scrubbing out my cloth seat.

Oh and my child is stripping on the roof of the parking ramp, because his clothes are icky, and apparently I’m not the octopus Mom he needs at this moment. So, I guess we’re doing this RIGHT now. Fortunately, following, he decided to “drive” my car, while I cleaned the rest.

Courtney to the Rescue! A little manipulation of placement, shove Mya’s seat to the back, where it looked like it should easily slide between the ceiling and the seat, oh it didn’t. Because why would it? Click here, tighten there, wallah! Insert child. “Here, why don’t you just hold the vomit tray this time.”

Are you laughing? Do you not carry vomit trays in your car? Hmm, didn’t realize how weird that was. One day, when you don’t have one, and you need one, you’ll remember this, and wish you were in my car, where there are vomit trays.

Oh, look at that, someone gets two more hours of sleep while his chauffeur drives.

And we’re back to town. Seriously it’s only 12:30? This is currently in competition for the longest day ever.

Hit the pharmacy. Where customer drive through etiquette was not on point, clearly they do not come here often…amateurs. Stellar pharmacy service, as per usual. Charlie downed two suckers while he waited for his new prescription to be filled. Everyone’s happy, because Charlie’s happy. Man that kid and his infectiousness. The good kind, not all of his nasty…

Almost done, promise.

Home sweet home. Or not, because now is when I have to actually dismantle the car seat and clean it. Remember when I had to put the car seat together in the Target parking lot? A little shoving, wiggling, sitting on it? Well let me tell you, that dismantling, was no easy chore either (face palm).

Ok, that one is done. Now, the original seat, was never put back together. Remember I left that one to Joe to clean up? Yeah, that’s painful too.

So the cloth is clean because it went in the wash machine…but guess what didn’t get scrubbed?

What is as disgusting as fresh vomit? The dry vomit in the cracks of the buckles and existed on the straps from almost 2 months ago. (Cringe.) Lysoled that baby like a boss.

When your friend knows you do everything #likeaboss, even clean vomit, the get you this to remind you.

Now, this has only solidified why I do things myself OR it was a well played effort on Joe’s part to get out of ever being asked to do that job again. Remember, Joe doesn’t do vomit. He gags, a lot.

Now, what have we learned from this experience?

1. Instead of thinking to bring and extra seat and not doing it, I will keep 2 car seats in the vehicle on ALL trips out of town.

2. I have already hit up Amazon Prime for a rubber seat protector for under Charlie’s car seat.

3. Remembering to pack baby wipes last night was an intelligent plan.

4. Carrying Lysol wipes on hand at all times IS a necessity and should be continued.

5. Choose the correct friends so you don’t have to buy new car seats every month.

6. Find a solid car detailer, push for insurance to cover car detailing, and until then, I will be accepting donations to have my vehicle detailed. 😉

You can choose to let the storm take you under, or you can choose to become it. ~#iwearredforcharlie

Shit Happened Alright

Well let me tell you, when I wore my “Make Shit Happen” shirt, the things to come, are not quite the type of “shit”, I imagined.

None the less, all the shit happened. All of it.

Let’s start with this morning. Started off as a quiet and enjoyable surprise for Mya. I took her to get her favorite Maple Bacon Roll. (My favorite too.) Then I got her to school, where I surprised her by staying for her Field Trip to the MLC Play. (It was great by the way.)

Oh, that’s where the shit started to happen. Towards the end of the show, Mya’s sweatshirt slipped between the chair. I went to reach for it, and a wack. Right on my noggin. Instant swelling and headache, some light coloring as of now. Seriously.

Honestly, was I surprised? Pretty much, nope. Let me just go about my day with a self induced concussion. And if that doesn’t perfectly explain my life. (Face Palm)

Fast forward to picking up Charlie for his appointment. Getting out of town currently is a shit show in itself. At least from where we live, to where daycare is located, to the actual exit, on the complete opposite end of town. I underestimated the amount of time this would take and felt late most the drive.

I realized I wasn’t late, until I was. We hit the cities stoppage of road construction, that wasn’t even started yet, but blocked off. That seriously, DID. NOT. MOVE. This is not usually a problem we run into getting to appointments on this route. But why not get stopped with 13 minutes to park and run through 3 buildings and 2 sky ways, with 2 exits to go until you even get to that point. Seems totally doable while carrying a toddler who’s still half asleep. NOT.

We made it 5 minutes late. Which obviously meant we never stopped to use the bathroom. I was forcing myself to hold it. But ya know, 5 minutes in, Charlie couldn’t anymore. So off we went. We came back. And give it another 15 or so, guess who has to poop? Oh look, more shit. (See what I did there.) It has been, historically, without fail, that during this appointment, Charlie has to poop. Every. Single. Time.

We finish up the appointment and we head on our way. He asks to watch TV while I drive, I pull out the iPad and pop on Netflix for him. He wants to pick himself. 3 different times! Fine, whatever. You deserve Netflix and Chill time just like everyone else.

We get just to where we want to merge onto 169, when he starts to have an asthma attack. I’m literally trapped between all lanes of traffic and I can not get to him. The one brilliant thing I did was remove the iPad from his lap. Wait for it…

He continues to cough. I rub his leg and he sadly cries, “I want you Mommy.” And I want so badly to give him his inhaler, hold him, unbuckle him, anything. But I am not anywhere near the side of the road to pull over. And then, were you waiting for it? He proceeds to vomit. All. Over. Himself.

Shit. I still am in no place to pull over. But Lord knows this Mama can find an exit for a Target. Because clearly the child needs to be changed. The car seat can not survive another hour and a half home. And we are both mortified at the smell now smoldering in the back seat. Well Hello Target.

In the Target parking lot, I proceed to undress my child. What we have for extras is a pair of shorts, well good thing the snow has stopped, because that’s what you’re going to wear. I change his t-shirt. And off we go for a new car seat. And an extra change of clothes, incase, Lord help me, we are met with this epic disaster for a second time on the way home.

Alright so we go up a step in sizes. Not going to waste money I already feel I’m wasting on the same size seat. This one is meant for toddlers and fits his height and weight. On sale, bonus.

Get to the parking lot. I stick him in the front seat for a moment. I proceed to pull the bag off of the new car seat. Throw the vomit covered one in it, clothes, wipes, everything, into the back. There is vomit, on my seat. And the leather seat option I compromised on is now obviously painful. Well here, let me just use a baby wipe, they solve all problems.

Ok, so the new car seat comes in two pieces. How hard can this be. I’ve installed tons of car seats in my day. Well, it’s hard. Especially when you are fuming in a Target parking lot, smelling vomit, and there is wind. Oh, and your toddler is trying to help and has hopped into the back seat, after attempting to drive the car.

Now that I’ve basically sat and jumped on these two pieces, I think they’re together. How can this even be safe? Who invents this insanity? Whatever, on with getting it in the car. I have small arms, normally this is easy peasy. Well let me tell you, I could not reach even half my hand to slip that seat belt through the back. I now find myself wishing I was Captain Hook, the hook would’ve fit in the damn seat. Anyways, after some finagling we are in. We are secure, on our way.

Oh, but that is not the end. We will now be forced to freeze the entire way home. Because, if you turn off the air you will inevitably die from the smell. Yes, I tested it. We had to stop and get out for air.

And this was the day, shit happened.

I Got Up

You needed to go to the bathroom. Something you believe, only I, the great and all powerful queen of potty time, am able to help you with. So I got up.

I helped with your pants. I put your special Paw Patrol chair on the toilet. I lifted you on. And I sat down.

I heard you grunting. I asked if you were pooping. You said, “no, I went pee”. Then I heard you stumble off the toilet, as you do every time. There was fumbling. Dad tried to help and you slammed the door in his face, while saying, “leave me alone!” He is not the great and all powerful queen of potty time, so he can’t help.

Within seconds you yelled, “mommy help me”. So I got up.

You insisted you needed a bath because you pooped. (Even though you told me 15 seconds earlier that you didn’t.) I told you no (dude it’s 9:45pm) and wiped your butt. You cried when I asked you to put your clothes on. A task you then insisted on doing yourself. So I sat down.

Seconds later you cried for me. So I got up.

You were sitting on the bathroom floor, a hot mess now. (I am also the queen of hot messes.) I asked how you got shit on the rug, for the 3rd time this week. I swear it wasn’t there 10 seconds ago. I rolled up the rug, checked your underwear that you also had poop on, and I threw them down the laundry shoot in your room. While there, I grabbed you more underwear. I asked you to put on jammies. You said no and insisted on your clothes again. Refusing my help. I left you to it. And I sat down.

Shortly after, I heard you bang your head on the floor as you got upset. I got up.

You couldn’t get your underwear on. I slid them on you. One tiny leg at a time. And I sat down.

You came from the bathroom now, clothes in hand. They were inside out and backwards. You were frustrated. You handed them to me and now you admitted you needed my help. I am also the great and all powerful mommy queen of getting dressed. So I got up.

I arranged your clothes and I put them on you. Even though I still felt you should put on your jammies. I choose my battles, and that wasn’t one I wanted to fight. I save most of my fighting battles for our night time rendezvous at 1, 2, 3, and well all the a.m. times. Because I am also the nocturnal mommy queen. And then I sat down.

Much past your bed time now, whatever time that might actually be. Lord knows you don’t have a real one. You asked for a snack. I said no. (Dude it’s after 10pm.) And you cried.

But this time, you got up. You crawled your tiny, little body of tears, onto my lap. And you sat down. Folding warmly into my body, like only my child could. You gave me soft, gentle kisses. Over and over kisses. And within seconds you fell asleep. Heavily breathing on my chest. In and out. Comfortable and safe. In the securest of places. I am most importantly, Mommy Queen of whatever the opposite of separation anxiety is. I am your go to, I am your safe place. I am Mommy.

And that, is why I got up. That is why, I will always get up.

I hate running…

I hate running. I can’t catch my breath, my asthma kicks in, and I have to use my inhaler a lot. My knees usually hurt for a solid week following a 5k. And not that simple, cramping pain- full, debilitating, I look like a 90 year old, pain (even my grandma walks better). Which usually kicks in about half way through every 5k.

To be honest, I was that kid in school that had the doctor’s note to get out of running. It irritated the cartilage in my chest. And I struggled to breathe the whole time. So I didn’t run the mile. Because I had convinced myself it hurt too much and I couldn’t do it.

I went for a run today. Actually, I set a personal record tonight for my mile, by 31 seconds. A mile that for years, I told myself I couldn’t do. I told myself was too hard. Was too painful. Was impossible.

Two years ago, I started running. It wasn’t pretty, it wasn’t fast, 95% of the time it wasn’t even running. I do it pushing two kids in a stroller, a seemingly impossible task for me, a non runner. To this day it still isn’t very pretty.

So why the hell do I put myself through that? Why do I do something that’s painful, that takes strenuous effort? Effort I once refused to give.

When Charlie was diagnosed, I was beside myself. I asked questions, but didn’t always understand. I was in shock. I didn’t know how we could ever get through this. I didn’t know how we would deal with this. How we would move on. I thought of what we were giving up. We were losing a “normal” child, and getting one we weren’t prepared for. Or one we thought we weren’t prepared for. I thought that was painful for me.

And then I proceeded to watch HIM go through three unscheduled open heart surgeries. I watched HIM vomit around a breathing tube. I watched HIM learn how to breathe on his own again. I watched HIM withdraw from narcotics and swim like Nemo, levitating off of his hospital bed in agony. I watched HIM get poked and cut and irritated. I watched HIM get infections. I watched HIM in congestive heart failure. I watched HIM as his lungs filled with blood. I watched HIM as he fought to live. There was no doctor’s note to get him out of it.

I watched HIM gather his strength. I watched HIM fight. I watched HIM learn to persevere. I watch HIM win.

I started running for something bigger than me. I started running to raise awareness. I started running for a little boy (and way too many like him) that has done everything that seemed impossible. That has faced everything that was too hard. That has run marathons day after day while lying in a hospital bed. For a little boy whose chest truly has been irritated to the largest extent. A little boy who spends several of his days and nights unable to breathe and truly can’t catch his breath. A little boy who runs anyways, with no signs of slowing down.

Running has become something so much more than just running.

I hate running.

I love Charlie.

Perspective. Patience. Perseverance.

Well, here it is. The tail end of 4 months. The 4 months that changed the course of my life forever. Those 4 months bring repeat and new feelings, every year, for the same 4 month span. And every year, I struggle with how to acknowledge them, how to deal with them, how to embrace them.

What am I suppose to feel? How do I respond? Here’s the thing, I DO NOT do feelings. They make me feel awkward and it’s often easier not to acknowledge them at all.

What’s healthy coping? What’s not? I may never figure out the right answer for this, as each time presents itself differently.

Most often as I try to figure out what I’m suppose to be feeling or how I’m suppose to respond, I feel judgement. For a long while I worried about the outside world and their response to how I “cope”. Now my response to that is, “go ahead, judge me.” If you can figure out how to battle a day in my life and stay on your feet, walk the line straight, and be everyone’s everything, while trying to be your own everything, be my guest. I’m pretty damn exhausted.

But don’t you ever think I’m not happy. What I have learned through the last 4 months of feeling battling is that I need to be happy. I need to do things for myself. Things that reach towards my goals (these are ever changing and big things are coming). I need to be everyone’s everything, but to do that, I need to be my own everything first. How to balance is the tricky part. And I’ve never been very graceful.

Two years ago, I sent my baby with his surgeon for the third time, in under 4 months, for open heart surgery. A surgery that his surgeon had never done. A surgery that they hadn’t seen in his hospital. I told the surgeon “I trust you.” Knowing that I had put the pressure on him, as he went off to do something new, INSIDE OF MY CHILD!

I shut off my feelings for the day, I wasn’t sure how else to survive, so numb felt appropriate. I waited seven and a half hours that day. I endured negative reports. I was told it was tense. His surgeon was frustrated. They had to make three separate attempts. All of these putting him more at risk. All of these making his odds worse, then and for his future. All of it less than reassuring. How did I feel? I asked for them to take a picture of his heart so I could see it. (This may be one of those unhealthy coping things.)

I sat in a room with my parents and my husband. People that I should’ve felt comfortable to talk to. However, knowing that the feelings I had over the past 4 months could not be understood. I could say them, but no one could feel them like I did. I lived them, every day, every hour, every minute, every second, of those 4 months. I didn’t realize at the time, that I’d continue to live them every day, in different forms, for the rest of my life. I didn’t realize what post traumatic stress really felt like. I didn’t realize the tiny, ridiculous things, that would trigger emotions. Emotions I’m often not prepared to have, at the moment they decide I need to have them.

There were a couple strangers in the waiting room that day. I was annoyed at the new waiting room set up, it left very little privacy, during a very difficult time. Particularly annoyed at the lady who felt the need to eat her burger in the chair, directly under the TV, and engage us in conversation, while she could’ve at least sat on the other side of the divider. Later that afternoon, on the other side of the divider (where she was suppose to be), sat another stranger.

I wish, that that day, I would’ve known I could talk to her. That of all the people in that tense room, with the awkward feelings, she understood. That she would always understand. She wouldn’t judge how I deal with the feelings I don’t admit I have. She wouldn’t judge my ever changing coping mechanisms, healthy or not. She would embrace me, all of the good and bad parts, because she understood. I wish that day that I would’ve known, she’d become my person. And I’d love her just the same, because I understand.

Two years ago today, we sat in a waiting room as strangers. Today we average 20 minutes worth of Voxer messages, 10 gifs, 15 emojis, and unknown amounts of texts on the daily. Today we acknowledge this 2 year anniversary together. A day neither of us will ever forget, but a day that we can now go through together.

I would never expect anyone to understand. You can’t. Heck, some days I can’t. But please, keep your judgment. We’re trying. I’m trying. It’s a process, it’s a life change. The struggle is real. With every season comes new battles, with every step forward, there seems to be more steps backwards. My unacknowledged feelings have come a long way. Most days you best believe I’m moving that mountain. But some days, I’m just trying to keep my son above water, even if I’m drowning. Most and some use to be flipped in those sentences.

Perspective.

Patience.

Perseverance.

A Ticking Time Bomb

There’s really no good way to explain the feelings surrounding today. Maybe something like your heart being squished and blown back up. Trying to grasp at air. A hard painful brick sitting right on your chest as you painfully fight to get it off.

Vivid memories of your child helpless in a hospital bed. Sending him with a surgeon for a way to close to the last time, second time. Knowing the risks of surgeries so close together. Unsure of what would come back to you. If he’d come back to you. Unsure of the outcomes. Just unsure. Leaving every bit of trust in God because there’s no way you could go this alone.

Open Heart Surgery Two, a painful, trying stay. A stay that ended with a piece of metal where a heart valve is suppose to be. A clicking sound coming from an infant’s chest. My infant’s chest.

And at the time a promise of two to seven years before another valve. A valve that would end up with a rare external leak and cause a third surgery. But at the time two to seven years felt good. Well today as we have eliminated those first two years, it feels terrifying. Two years went so quickly in the chaos that we have grown accustomed to. How quickly will the next five or less go?

Two years left in the blink of an eye. Leaving us at zero. Zero to five. A ticking time bomb. Not that at any point in time a heart warrior can’t change the game plan. We know Charlie did with that third go. But to feel zero. To say zero. There’s not even a day between now and zero. It’s just ZERO.

Every day is closer and closer to that click needing to be replaced. Every next appointment could be the bomb dropping appointment.

That next surgery could go fantastic. Or it could go like the first three and be painful and long. Bringing more issues for Charlie. Breaking apart our family. Throwing our current batch of chaos into a hurricane.

The location of his valve puts him at risk of needing a pacemaker every time it’s touched. We already know this is a viable possibility in his future. Just another wrench to throw in the plan. His heart tissue is scarred. His fibers were weak before. What if they haven’t improved? What if a new valve won’t attach well? What if… The what ifs of a future surgery are lingering thoughts, always. And today those thoughts are intensified. Zero.

A day that brings feelings I try so hard to guard myself from. I block them with knowledge and sarcasm. I’ve learned this about myself. They hurt, so I stop them. But I can’t. Today, I just can’t.

Zero. Zero. Zero.

A ticking time bomb.

“But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father.” Mark 13:32

Some Traditions are Made to be Broken

“Hurt my butt.” “Oh, I tooted.” “Mommy f***, Daddy f***, owwww.” “There’s Jesus!”

All of these are phrases you would have heard Charlie throwing out there had you been in our Thanksgiving church service tonight. In his defense he was trying to say “fox”, but it’s just a word he can’t get out yet, and it’s a wolf book he was talking about. (Insert hand palm here.)

He ran the pew back and forth. He used a Kleenex to clean off every Bible and Hymnal. He cleaned the “table” (pew). He even cleaned the nice lady at the end of the pews purse and shoe. (Again hand palm.)

The nice lady continuously smiled through out the service and engaged him as he offered her pretend food that he pretended to grab from her purse. (You guys this kid!)

I sat laughing hysterically like an immature child. I’d frequently make eye contact with my cousin four pews ahead of us who could hear Charlie and not stop laughing. I felt the thoughts of those around me burning into me. “Great parenting there.” “Make him be quiet.” Are things I imagined them saying. And the eyes of my former principle staring at me. The judgements I imagined them having for us. (And maybe, truly they weren’t. But the mind gets to you quickly.)

In my head I was replying to them all, “I’m not even sorry. Not one little bit. I’m just so damn happy he’s in this pew making the loudest noises and dropping one liners like nobodies business. Two years ago he was in a hospital bed fighting for his life, as he was in heart failure and his lungs filled with blood. I almost lost him and he was intubated for his first Thanksgiving. And last year at this time we were in an ambulance on our way to the hospital again, because he was lethargic. And again, we spent Thanksgiving in the hospital. So forgive me as I allow my child to yell in the pew, run back and forth, and feed people imaginary food he stole from them. Because you know what, God clearly has a fantastic sense of humor. And I wouldn’t trade this highly embarrassing church service for 5 million dollars right now.”

I may not have gotten much directly from that church service. I was completely distracted by my highly amusing child. But part of the Thanksgiving prayer did resonate with me, “For the ability to be thankful for the hardship in our lives: We ask strength that only you can give, O Holy Spirit.”

Two years ago at 2 a.m., as many of you know, I was in a room crying as I waited to find out if my child was going to survive the night. Last year I was in an ambulance as I typed out my words and held my limp baby. Both of these days occurring from the 22 to 23 of November. That’s just our day. So today I waited in anxiety. I waited for that moment. When he got a cough on Sunday night I had instant panic. The thoughts of going to the hospital for a third year in a row consumed me. The tightness in my chest grew. So as I approach 2 a.m. on the 23rd and I’m no where near anything medically related, I am Thankful.

Thanksgiving happens to fall directly on our dates this year, ironic. And while we love our hospital family dearly. I am thankful that some traditions are made to be broken.

Happy Thanksgiving from #iwearredforcharlie.

And now, it’s 2 a.m.