He Will Rock You

Oh my sweet, crazy, little Charlie,

A week ago, I found myself sitting on the front steps thinking, “how in the world are you going to be four next week? Four. 4! You’re going to be 4!” And those happy little tears of joy, they came right along with those thoughts.

The following day, I found myself sitting in on a panel, sharing your story. Almost four years worth of your story. Projecting your hells and your victories, to a room of strangers. And every person in that room listened with “Awwws” and “ohhhs” as I shared. None of them fully being able to understand the pain and triumph those hells and victories hold for us.

Sometimes, I let my brain forget all of the hells, it’s rare, but it happens. Like yesterday, when you played for your biggest audience yet at your birthday party.

That was gold, and my heart, for that small bit of time, let all of those hells take a back seat.

And this morning, when you added your metal touch and screamed “blood on your face, sick disgrace” as you jammed out to We Will Rock You, all I could think was, “boy you’ve rocked the shit out of a lot of things.”

The truth is, for you, getting to 4 wasn’t easy. We’ve gone to battle. Time and time again.

I’ve handed you to a surgeon, knowing what could happen, knowing the odds, praying for miracles as I let you go. And every time, you rocked it. I’ve watched your sats drop as you became lifeless, trying to catch your breath, fading into the night, but you weren’t done rocking. I’ve listed to you scream as I held you down for procedures. I can still picture every detail of your tiny body withdrawing from narcotics, as you just kept swimming. I’ve lived in a hospital with you, protected from the outside world, when all we needed was each other (and all the medical staff). We’ve celebrated holidays with hospital staff and enjoyed visits from hospital Santa. I’ve carried you flailing to and from appointments, when your PTSD was winning. There are countless days and nights we’ve spent hooked up to machines to watch your breathing. I lost track of the ambulance rides we’ve taken and the amount of ER visits we’ve made. You have never stopped rocking it. I’ve watched them shock your heart, as your tiny body jumped off the bed, again, a hell no one should ever have to endure, and you continued to rock. There is not one moment of those hells that I can’t recall. Burned painfully in my brain, images, smells, sounds and all, they have made you strong.

There is also not one victory I can forget. I remember the saving words the doctors said to me. I remember walking back into your room after I thought that was it, and the weight that lifted when they told me you were stable.

I’ve held you for hours as you slept, because I was your security blanket, and that made everything better.

I’ve fed you as you learned to eat, and relearned, and relearned some more.

I’ve cheered you on as you finally began to roll, and then crawl, and then walk, and then terrorize everything in sight.

I’ve watched you start to dance and perform for audiences.

I’ve watched you slug a ball at three years old, farther than some six year olds.

I’ve left you at the door to preschool, ready to learn and explore.

I’ve listened to you talk to doctors, check yourself in at appointments, and talk to others about your experiences.

I’ve watched you rough house with your siblings, punch your sister in the face, and join in the chaos, like every little boy does.

I’ve watched you be a little shit, more times than one would think is possible. Then flash your shit grin to try and escape your demise.

I’ve watched you love. You love with all of that little broken heart, as if it was never broken at all. You give the best hugs. And you’ve mastered the super kiss.

I have watched you live. You live every day as it comes. For all it is. Not worrying about what is to come. I hope and pray you always do that. I’ll handle the worrying enough for us both.

I’ve watched you become four. A number that still seems so unimaginable to me.

I want you to know, no, I need you to know, that you are a rockstar. You are more than I could have ever asked for. Your chaos inducing, life altering craziness, it changed me. It changed everything, in the scariest, most amazing way. And on your 4th birthday (that still can’t be right), I need to tell you thank you. Thank you for making me do things I don’t want to, thank you for scaring the living shit out of me, time and time again, thank you for insisting that I have patience (in so many many ways), thank you for forcing me to be better, thank you for trusting me, and thank you for letting me be your mommy.

You just continue to rock, I’ll always be two steps behind.

With all of my love,


Something About an Elephant

I’d like to start with my apologies for my absence. Life seems to be quite consuming as the children grow, and my priorities are in order. With them forever remaining at the top.

Today however, I have some feelings to share. If you wouldn’t mind, we’re going to go 6-years back in time.

I woke up to a feverish babe. Not like slightly feverish, like this child had been pulled straight out of hell. With no sign or reason for this, I rushed to the Emergency Department.

There was no use questioning me, by now we’d been there so many times only the Lord really knew the count. The ED staff knew our names, they knew his medical status, and they immediately began his routines.

Pneumonia? Maybe it’s pneumonia. They checked the X-Ray. They cultured his blood. They cultured his urine. Then they put us in an ambulance, again. On our way to our second home.

The nurses in the hallway waved and smiled as he was admitted straight to the cardiac unit this time. He was a local celebrity.

Now connected to all of his wires and IVs, they began antibiotics for the unknown.

He was getting sicker by the minute.

They found a blood infection in his broviac line. The line coming from his chest.

The worst part came later. It wasn’t just contained to that line, it was in all of the blood. In his entire body.

He was septic.

I was scared. Which is the biggest understatement you’ll read to date. Let’s try again.

I was out of my mind terrified.

If you’d been there 6-years ago. You would’ve complimented me for how well I was handling everything. Told me “I just don’t know how you do it.” You would’ve seen me calm and collected. And I was.

I could mask my feelings of terror and sadness beautifully. Now some of you won’t believe this part, but even my frustration was pretty minimal on the outside.

I was numb. I had trapped in and shut off any pipeline that could present outward emotion. I was inwardly preparing my defenses.

Turns out, while I was busy turning off pipe lines, my body was making some core memories. Like the ones in Disney’s Inside Out. Except I didn’t have a pink, cotton candy elephant in an outdated suit and a wagon to help me access those.

I just had me. And me wasn’t touching it.

Me now however, has a lot of things to feel about that.

Turns out, opening those pipes back up isn’t as controllable as one would like. Imagine it something like turning on the garden hose. You forget that the sprayer setting is on jet. So you quickly try to turn it to sprinkler and end up at flood before you can make it back around a couple times to the right setting?

By then the water has shot off the house a couple of times, sprayed dirt into your face, and you’re soaked in water and there’s really nothing you can do but finish the task at hand. The next time you try again, and again, and again, for as many times as it takes. And maybe, just maybe, one of these times- you’ll show that PTSD who has gained control of the sprayer.

One morning, waking up to a core memory won’t feel like a stab to the heart. Today wasn’t that day, but the pink elephant is telling me we’re going to get there.

If Ever Murdered or Kidnapped

You know that meme, the one that says, “If I’m ever murdered or kidnapped, please don’t make up lies about me.” (If you don’t- go find it.)

This meme makes me laugh, unnecessarily hard actually. I find it extremely relatable. Upon growing older, despite my sweet daughter’s insistence that I’m 23 or 28, or anything under 30, I’ve been taking a lot of time to reflect.

Here’s how I imagine mine goes:

Her smile did not light up a room. It was often uncertain if her smile even existed. Upon meeting her, you questioned your status immediately. If you made it through the screening process, you would learn, there was a smile hidden there. If you wanted to see it, you had to earn it.

Her mouth, it was pirate worthy. Her filter broke the day she learned her child’s heart was broken. That was the day she learned everyone had feelings, and sometimes they need expressing.

She learned feelings needed expressing. However, it would take her years to learn how you do that the right way. She did not do emotions. They made her feel weak and uncomfortable.

She feared failure, failure in any capacity it came. Parenting. Friendship. Marriage. Work. Life. She failed often, or at least she always felt like she did.

She was difficult. In communicating. In compromising. In changing. In existing.


If it was important to her. You knew it. She was an advocate for everything she held value in. And she held value in a lot.

She believed in the good of others. She believed that progress was always possible. She believed that everyone deserved a chance, or several. Even, when those chances personally hurt her. She believed in people.


If she loved you, you knew she loved you. She gave everything in her. Everything. All of it. She didn’t know the word no. If you needed her, whatever it was for, it mattered more than her.

“Why did they make me like this?”

“Why did they make me like this?”

There it was, the bomb had been dropped in front of me. The detonator was seconds from going off. I could tell by the quivering lip and the tears that were seconds from bursting out. It was now up to me to disarm it.

I was helpless to it.

This bomb did not stand alone. It was fused together with the one that has been sitting inside of me. Only mine, was programmed to detonate merely seconds after the other was dropped in front of me.

Those seconds however, they seemed like several minutes as I tried to remember what the disarming code was. I’ve been working on this for just over 5 years. I knew the day would come I’d have to utilize it. But in those long, painful seconds, none of the codes felt right.

And just like that, before I could finish thinking, both bombs went off simultaneously. The strong boy in front of me, with the quivering lip, who had been fighting so hard to keep it together as he asked his question, he burst. And so did I.

We sat snuggled in my bed under blankets, perfectly intertwined, just as our bombs had been. We have always had a way of speaking without speaking in moments like these. Although this time felt very different. He felt bigger, well, older, he is Charlie size after all. He was old enough to notice he was different. And now, he had asked me that long awaited question. One that he wanted an answer to. I thought I had a good couples years left until I’d need to have perfected the answers to it. But, Charlie has always been his own keeper of time.

While I held him tight, I tried to make sense of all of the versions of all of the answers I had run through my head.

“Because I grew you wrong,” is my anxiety’s personal favorite. It seemed to be the answer every other time I tried to come up with an answer.

“Because you’re a special boy and you’re meant to make a difference.”-my logical brain.

“No, it’s because you grew him wrong.”- anxiety brain.

“Because. . .” -logical brain taking a go again, because this weeping boy is still waiting for some form of answer. There is only so long the tight hugging is going to be enough.

“Stop, no…it’s because you grew him wrong.”- anxiety brain is sure a treat ain’t she.

We go back and forth several more times. As I held a little boy, his lip quivering, continuously trying not to cry. Trying to be brave.

And then out loud, because blurting things out is the only thing that stops my anxiety brain, came the only answer that felt right, “because God DOES NOT make mistakes. God made you exactly who and how you are suppose to be.”

The passage I chose for my Charlie tattoo before he was even born reads, “I praise you, because I am fearfully and wonderfully made.” Psalm 139:14 (NIV). And the one I have used so often, every day since, “Before I formed you in the womb I knew you, before you were born I set you apart.” Jeremiah 1:5(NIV)

And then he slept.

And I cried, as I sat in a place of, “what actually just happened?”

The wreckage stabbed at my heart, and pieces kept interrupting my thoughts. I wanted badly for silence. Maybe I should’ve handled it better. Maybe I should’ve kept my strong game going. But I couldn’t. He had big emotions, and this time, this time they were destined to meet mine.

This time, that painful bomb that we had both been housing for 5 years, it went off. Neither of us knew how to stop it, neither of us had the code ready. And I imagine there are many big questions to come, questions we will continuously not have the answers for. Feelings we won’t be able to contain. Moments that will leave us more confused then when we entered them. And for that my sweet Charlie, I am sorry.

But I promise you, God & I will be there for all of those moments. We will figure them out together. I do believe those are the moments meant to change us. In those moments, we are meant to learn, and we are meant to grow. Just as we have been doing since the day you were diagnosed.

On this Sunday morning, with the sun shining so brightly on his blonde bed head, his eyes glistening, I asked Charlie, “why were you made like this?”

“Because God does not make mistakes!”

Kindergarten, Ready or Not!

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11 

Jeremiah 29:11 is the bible verse that was chosen for the school year. A reassuring and promising verse at that. And it is with that thought at the forefront of my mind, that I attempted to prepare myself for Charlie’s first day of Kindergarten. Not just the first day of Kindergarten for my imunocompromised, asthmatic, broken hearted child, who can’t stop putting his hands in his mouth; but the first day of Kindergarten, plus the laundry list, plus a freakin’ pandemic, for my child who can’t stop putting his hands in his mouth.

Lord, give me strength, and then some.

At 6:10am I opened Charlie’s bedroom door, his eyes shot right open before I had a chance to speak or turn on a light. I hugged him and asked if he was ready for his first day of Kindergarten! -I have never seen that boy get dressed and ready to leave the house so quickly in his entire life!

He was so anxious he declined breakfast, as I insisted he needed to have at least something. He repeatedly asked to go. He sat ready with his backpack in anticipation that Mya and I would be ready sooner than later. He was ready. I was not.img_2218

We embarked on the 40 minute drive to school- which allowed for asking, “are we there yet?” at least 20 times… It also gave opening to flashbacks…

I went back to that very first night in the hospital, the one when my world seemed to be caving in around me in that Cardiovascular Intensive Care room. Charlie lying hooked up to IVs, monitors, and the nurse in the maroon scrubs standing across the hospital crib from me, trying to keep me sane. I had a lot of thoughts that night. They began with things as simple as, “Why him?” and moved rapidly to, “how will he develop?”, “will he go to school?”, “will he live a normal life?”, “will he live at all?” How real those feelings were. How scary those thoughts were. And how much I continued to question them, for months as we lived in and out of the hospital for weeks at a time. How much I’ve questioned them every time he gets sick.

From the backseat my painfully deep thought was interrupted with, “Mom can I go into school by myself?” Going straight for the gut today eh bud? With a lump in my throat, as I tried to swallow that hospital room image, I replied, “No buddy, this is your first day of Kindergarten. But it’s not for you, it’s for me. As your Mom, I have earned the right to walk you into Kindergarten on your first day of school.”

Mya heard the lump in my throat, that refused to go down, “are you crying?”

“Yes,” I sighed, as I held back what I could. “There was a time I didn’t know if I would ever get to see Charlie go to school. There were times I wasn’t sure if we would ever have Charlie. Today is a really big deal.”

Damn that lump.

“I know Mom, maybe we should change the subject.” -If that girl only knew how sweet her heart is in those moments.

Charlie lightened the conversation with, “I didn’t know I would be so happy on this day!img_2225

-If only he knew how much his zest for life impacted those around him, and me. His smile filled his face ear to ear that entire drive. He was glowing, he was excited, he was ready. I was not.

None the less, time to take that sweet little human to school. We parked further away, and he slipped his tiny little hand right into mine as we walked- he rarely does this anymore. We took our obligatory first day of school pictures outside, his teacher had prepared some cute kindergarten signage, and then we masked up, sanitized (Thanks Rona), and walked into school.


Charlie’s always wonderful, very excited, Kindergarten teacher was ready to receive him when we got to his locker. Because of his img_2230complex medical history, we were graciously able to handpick the teacher we felt best to work with him. I’ve given her the run down. She’s read, printed, and asked questions about the letter from the Immunologist. She’s viewed the asthma action plan. She knows where his metal pieces are in his body. She knows about the blood thinner. She’s asked the hard questions. She’s aware he sleeps whenever he dang well pleases. She’s put a plan in place to keep his fingers from his little mouth. And I can guarantee you that she’s prayed for every kid in that classroom as she prepares to share Jesus, ABC’s, and 123’s with them.

I squeezed his tiny, definitely not Kindergarten sized body as hard as I could. Slipped our masks down and gave him a big embarrassing Mama kiss. He was off to Kindergarten without a second look. He was ready. I was not.

I walked back through those double doors, tears swelling up in my eyelids. I held my eyes open as big as I could as I passed children and parents going to school. And when no one was looking, I closed my eyes and I let those tears come. And they came and they came. They came out of joy, thanks, and praise to God that I was able to walk him into Kindergarten.

And then, I cried for my friends, the ones who didn’t get to walk their babies into Kindergarten, they don’t get first days of Kindergarten. They are experiencing the things my nightmares are made of. And that is one hell of a lump to swallow.

How was your first day of Kindergarten?! “It was Beary good!” You could hear the thrill in his voice. He rambled on about the bear hunt, he blurted out the friends in his class from last year, and he shared with excitement the new friends he had made. His teacher sent me a photo of his beaming smile at recess. img_2241And the lump that seemed so big in the morning, it took it’s place back in the “hidden feelings” section of my mind.

And we did it. Well, I did it. Charlie was ready the whole time.

Charlie has always been ready.

“Rock and Roll!”


Photo Credit: VanessaLyn Photograph and Design

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11

Lose, Learn, Win (with respect)

I played again today. It’s been over 4 years. Some things, some things are just harder than others to pick back up again. Some things are harder to start again with someone that’s not the same someone. But it was time. So I bought a board, the closest I could get to looking just like the one I learned on (I did damn good).

And I taught Charlie.

Learning the game.

I taught Charlie the game we loved to play most. He got frustrated. He cheated. A lot. I got frustrated. He told me I cheated. We got frustrated. We kept playing. And it was just like I was sitting there 25 years ago, when Papa taught me.

We’d spend hours playing Chinese Checkers, he in the chair, me on the floor, with the board placed on the rolling foot stool between us. Which was basically just hours of endless defeat for me. He was never easy on me and he never let me win. What he did, was he taught me how to learn. I had to play to learn, I had to try to learn, and I had to be willing to be defeated. Over and over and over again. Because he was damn good.

And one day, many years later. Many defeats past. I won.

In my small little heart, beating Papa was when I knew I had arrived. Strike up the band, get my crown, the queen has taken the throne.

And for Papa, that was a proud moment. I can still see the smile on his face. He taught me to learn. He taught me to lose gracefully. He taught me to learn some more. And with that he taught me to win.

As I was teaching Charlie, he asked several times with hope, “am I winning?”

“No bud. But you’re not going to win. You’re learning. I’m teaching you how to play and you’re going to lose a lot first. But you’re just learning. The day you beat me, that’s when you know you’re good. I’m the “Papa” you now have to beat.”

In your little life, it’s my responsibility to teach you how to lose, in all of the ways Papa taught me. And how to lose often. Because you will lose often.

You can’t cheat your way across the board. You can’t double jump your marble without following the lines. And you can’t move the marble at the top of the pyramid straight to the bottom row.

What you are to young to realize and what I was to young to realize then, is that while we are being defeated, while we are learning how to lose with dignity and grace, we are learning how to win with respect. Through all of those endless games of defeat, we are winning.

I didn’t win all those years ago because he let me. I didn’t win because I cheated. I won, because I took the time to learn how. And when I could’ve accepted my defeat and quit. I kept learning. Because I wanted to win and I wanted to earn it.

I never thought that one day, I would be sitting at the counter trying to teach a child, much like myself, a game passed down by family tradition, when those memories would flood back in. I never thought that one day, I would be the “Papa” to beat.

So I played again today. With a new someone. A someone who needs me to teach him all of the somethings Papa taught me. And while I teach him to lose, he’s learning the valuable lesson, of how to earn that win and the respect that goes with it.

Thanks for Asking

In the last couple of months, I’ve started any number of posts. And I’ve stopped every one. I have drafts of drafts and revisions and updates and nothing seemed to be what I wanted. Nothing what I thought worthy of sharing. Nothing I finished. But I’m a blogger, so something had to come out eventually…

I wanted to be honest, I wanted to ask you to withhold your judgments on something you know nothing about, I wanted to let you know how okay I am, I wanted you to know how ok my children are, I wanted you to know the answers to the questions you keep asking. But you never asked me.

So I didn’t share.

At the end of the day, the answers you seek so desperately, even though they are none of your damn business, are never going to be the right ones. Because even with them, you’ve made your judgment.

I wanted to tell you that your judgments hold no value. And then that felt like you’d think they did. The ridiculousness of the human mind astounds me.

I hope that the versions of me you’ve decided upon in your head, are good ones. Maybe, I’m the heroic mom who made the difficult move, in the best interests of her children. Maybe, I’m the woman who left behind emotional disaster, and you’re proud of me for doing the hard thing. Maybe, you really don’t give a shit (this is my favorite version of me that you’ve made up.) Or maybe, your version of me isn’t good. Maybe, your version of me is the one you drew up in your head, with the answers to the questions, you never asked me.

I’m ok with all of that.

I don’t need you to be.

I need me to be.

And you know what version of me is my ultimate fav? The real one. Have you met her? She’s god damn amazing AF!

I can tell you, that I’m ashamed for how I judged others in my situation. And I’m sorry. I can tell you that I never knew any of the feelings they had. I can tell you that I never understood why they would put their children through that. I can tell you that I have learned. I can tell you that I will never again judge anyone in that situation. And I can tell you, that what you think is going on, is not.

Not that you asked me.

But, thanks for asking.

Pink Hangers

One of the most beautiful souls I know, and I have the privilege to call a fellow Mama Bear, brought this story to me tonight. With all of its love and straight up realness, it needed to be shared. And supporting my tribe, that is something I’ll do in a hot second.

From the beautiful soul of Megan:

“Pink hangers….

I was in the middle of doing respite foster care for a 4 year old girl and a 3 month old baby boy recently. With two one year olds of my own, I had 4 kids under 4 living in my home. I was less than put together at this point.

My in-laws had taken my girls for the night so we could have some form of “rest” (sleep through the night, not bathing 4 children at the same time, actually getting to eat supper, take your pick…) and the night was going very well.

My hubby was rocking the baby and watching the news and I was putting my girls’ laundry away. I grabbed their hangers to hang their clothes and the 4 year old was in the room listening to music. She looked and said what’s those things. I replied they are hangers to hang your clothes on. She said yeah but they’re pink, they make pink ones of those? I said yes sweetie they come in all kinds of colors. She ends the conversation with oh I’ve never had pretty pink hangers like that before.

Consider my world ROCKED. To her these were not JUST hangers.

They were PINK hangers.

Now, I don’t know the back story of this girls family situation, nor does it matter. What matters here is that with that comment, this girl knocked me down to a level so low that I looked up to her. So low that I had never even considered that my girls wouldn’t have pink hangers, they’re girls right? Obviously you get pink hangers to hang their clothes. But to her, one, we had hangers. And two they were pink.

I stood there for a minute. And she carried on with her music and dancing. And then I walked out to the kitchen to help make supper and told my husband the story. All the while still thinking it’s just a hanger but to her it’s so much more. It’s someone who is there to hang up your clothes and cares enough to care that you want pink hangers not just plain hangers or no hangers.

So- I marched right back into that room. I said sweetie where are your clothes you picked out for school tomorrow? She handed them to me. I said pick out a hanger. She grabbed that pink hanger and I hung those clothes right up on there.

And you guys- the smile that came across that girls face, my heart almost couldn’t take it.

It’s more than just a hanger.”


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.