The Wonder of Thumbs.

“In the absence of any other proof, the thumb alone would convince me of God’s existence.”

– Isaac Newton

At times, Hunter will stick his little thumb up in front of his face and move it around. Up and down, side to side. Then he will look at me and giggle. I then offer him my thumb, and we marvel at the wonder that is our thumbs.

Tonight is December 31, 2018.

We are closing the year that my son was born. The year that I first held him in my arms. The year of every single one of his firsts so far. His first cry. His first breath of air. His first smile and first laugh. His first seizure.

I can say with all honesty that this has been the best year of my life so far.

I can also honestly say that this has been the year that I have faced more emotional turmoil than I ever have. But out of that emotional turmoil, I have grown so strong. I have gained every bit of strength that God has offered me. I have received more love than I could have ever imagined. I have learned the meaning of brokenness, and I have learned the meaning of hope.

I have learned what it means to let God go before me.

I have learned what it means to trust.

What will this next year entail?

What new adventures will we encounter?

I lie here now, baby curled up sleeping in my lap. There is one hour left of this year.

Though I am happy to close the book that is 2018, I am thankful for this past year.

And I am so thankful for this next year.

Thumbs up, 2019. I am very, very ready for you.

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Waves of purpose.

I. Am. Exhausted.

But I am also on fire. I have this burning passion to help as many families as possible who are going through this battle.

This last week in the hospital with Hunter was harder physically than ever before. I’m not sure why. But I have barely been able to keep my eyes open since I’ve been home. I think when he was younger he slept better there. Now, he kept waking up and looking at me and saying “MAMAAAA” with his little fists balled up and a red face. Before, it didn’t feel like he truly communicated with me. NOW? It’s an unending communication train. He understands when I choose to do something before tending to him. He understands when I walk away and he can’t follow. He understands we aren’t at home. The nurse that discharged him gave him a shot, and when she came back in the room he looked at her and said “BOOOO” with his bottom lip out.

He’s not a baby anymore. He’s like a tiny little human with wants and needs and definitely demands.

So I think that’s why I’m more tired.

But people. I have NEVER been so supported.

Two mothers who I didn’t previously know connected with me and came to visit. I was floored. One brought me a delicious mocha, and one brought Hunter a Christmas gift.

One told me with tears in her eyes,

“As someone who has been there I am here to tell you that things will be okay. Everything is going to be okay.”

This. Is. My. New. Purpose.

I used to get attached to plans. I used to think I had one purpose. As life goes, I realize that purposes can be like waves. They begin, crash, and roll back. A new one then comes crashing in. As my life slowly moved away from working in foster care to addiction, I had a hard time accepting it. And then when hunter was born I had to quit my job to be with him, and I had a hard time accepting it.

But I didn’t realize that I was moving into my new purpose.

And I no longer have a hard time accepting it.

I am so excited.

And I am on fire.

Bring on the wave. I’m ready.

Sensodyne for the soul.

Ive added up the amount of nights hunter has spent in the hospital and doctor offices vs at home.

It’s close to three months total, out of nine.

In that time, I have experienced support from people I know and people I don’t know. An overwhelming amount of love that I want to spend the rest of my life pouring back over others who are going through this battle.

That love has been shown in different ways – but for the most part with words.

Some of those words have actually left me wondering, “wait was that meant to sound the way it did?”

This post is actually about what not to say to someone with a child who has epilepsy and infantile spasms. Even with good intention these things don’t feel good to hear.

“It’s not that big of a deal.”

Okay. Maybe you have experienced this battle and for you it didn’t feel like that big of a deal. But for me, it does. And for many of us, it does.

“It’s not the end of the world.”

Okay. It may not end his life. But it also could. (SUDEP). It’s also gut wrenching to experience and see your child experience. I can’t speak for anyone but myself, however when I hear this, I hear “get over it, it’s a paper cut.” Every parent with a child who suffers from IS is aware that “it could always be worse.” That may spark feelings of thankfulness – but it also doesn’t change the situation. It absolutely could be worse. Thank God that it’s not. But it isn’t easy.

I don’t say this to complain.

To be honest I am used to most of this. I had to cut one of my favorite outfits of his tonight to fit over his IV. I used to cringe. Now I just say “hey Darrell can you grab your knife and cut this?” With out holding it out and staring at it trying to remember what Hunter looked like in it when it had two full arms.

But I’m just not the person who can get used to my baby suffering. I don’t know anyone who is.

“It’s just a seizure.”

Darrel has nearly lost his life to seizures. Hunter has been in that boat too. It’s never just a seizure. Regardless of severity, regardless of frequency. Regardless of how automatic our behavioral response as the family has become. It feels impossible for me to understand putting the word “just” in front of “a seizure.”

I think a lot of this stems from lack of education and awareness.

Again, I can only speak for myself and for my family. But it’s been on my heart since the first time someone said these things to me and I’m glad that I’m taking this opportunity to share.

A light spirit.

There is a guilt (at least for me) that comes with having a child who frequents the hospital.

It isn’t necessary and it isn’t warranted, but I just didn’t see this as my baby’s first year. The way he looks me right in my eyes and tells me with his soul, “mama why is this happening again?” Guts me.

It’s like a hand reaching in through my chest and squeezing my heart and lungs with a sandpaper fist.

What I can say though is that this is the first time I was able to tell myself “it’s not about you.” – and actually live that out.

I hardly remember the worst part of today. Usually I dread it. I ruminate on the thought of how hard it will for him when they prep his IV and wrap his head. But this time, I chose to focus on keeping my spirit light. I chose to smile, and kiss him, and sing, and haul a thousand pound bag of toys, and cuddle, and like I said, let my spirit be light.

This connection with my child is unlike anything I have experienced. And I believe his spirit can feel when mine is burdened.

So Lord, take this burden. I have a job to do.

And guilt, take a damn hike.

There is a ghost here.

What is it like to love someone with epilepsy?

When I was about 9 years old, my friends dad let us watch a very scary movie. And I slept in the closet that night. In fact, something about that movie stuck with me, and I didn’t sleep on my back again for some reason until I was close to maybe…twenty years old? Yeah. About that time.

It’s a bit of an extreme reaction to a movie. I had seen scary before. But I hadn’t seen it like this. When I would fall asleep, I would put the covers over my face and let one ear stick out. In my little mind, I was more protected that way but could also hear any ghosts lurking in the corners. It was silent, even when it was hot, the room felt cold. Every creak made me wonder, “is that a ghost?”

I don’t do that anymore. I actually like scary movies now. Go figure.

But when I do fall asleep, I have Darrel to my right and I have hunter in his crib to my left. And I lie on my back and stare at the ceiling.

“Is the bed shaking?”

Yeah, but it’s the dog getting comfortable.

“Did Hunter just make a noise?”

Yeah but he’s just turning over.

You see, I’m still afraid of ghosts. But not like the ones that used to scare me. Now it’s the ghosts of seizures. No matter how much peace I meditate on before lying down, I still in a sense have the covers over my face with one ear out. Always, always waiting for that moment when Darrel or hunter starts to have a seizure.

For me, loving someone with epilepsy is like living with a ghost. You can’t always see it but you know it’s there. It doesn’t always attack but it always haunts.

There is a ghost here.

But we put up one hell of a fight now, don’t we?

Kisses.

I have too many words in my head to not write right now.

And I’m really exhausted so this might be way too much information.

Who was I before my little nugget was here?

I was ok.

I lived for me, that’s for sure. I definitely thought I knew where my life was going. Most of the time. Sometimes I made ridiculous decisions, hurt people, hurt myself, helped people, helped myself – I spent a lot of time wondering when the hell my pre-frontal cortex was going to kick in and clean up the messes i often made.

I had a lot of loss in my life. When I lost my dad, and then my best friend passed away exactly one month later, I think I started a whole new journey that I didn’t realize I was on. I was searching for a puzzle piece, believing that God was filling the void I had, but living desperately clinging to whoever would extend a kind hand. And then literally wiggling myself out of every tight space I forced them into leaving them there because somewhere in my heart I guess I figured if I left first it would hurt less.

And I even clung to Darrel when I met him. Thank God for that though. The past two years with him (I know it seems like longer right) have been the biggest learning experience of my life. Learning what love actually is. Learning how to trust. Learning how to let go of his hand knowing he’ll still be right next to me. Learning how to care for someone when they are sick- and learning to accept someone’s care when I need it. Learning how to not hurt someone and not accept someone hurting me. (But also learning how to forgive and ask for forgiveness when I inevitably mess up). Learning boundaries and also how to connect.

And I know he’s learned the same things.

We were very different people when we first fell in love. And this journey with him is incredible. Hear me when I say – I LOVE loving him. I love knowing that we have been through WAY too much – and we still look each other in the eyes and say “I choose you, yesterday, today, and always.” And I love knowing that he’s not in a tight space that I forced him in to. Some days I forget to even talk to him all day. (Shocker I KNOW). And he’s busy at work – and suddenly it’s 10 pm and we see each other and can genuinely say, “I missed you today.”

I don’t know if anyone can relate, but I never let anyone or myself have that freedom before.

We have taught each other so much.

And when we found out about Hunter we were scared. I think a lot of people had little faith, and a lot of hope. I know I did.

I remember one night when I was pregnant, I went to my mom and I cried.

“Mom there’s going to be another human who literally depends on me for everything. I can’t even depend on myself for everything.”

It was the middle of the night, so she groggily replied,

“You’re going to do it. Bottom line. You just will. And the first time he kisses you on the cheek, you’ll pause, and know why you’re doing it.”

Ugh. You guys. She was right. (Obviously, because she’s super mom and is actually always right but don’t tell her).

I had no idea this is what it would be like though. I had no idea that every single night I would sleep with my head at the foot of the bed because it’s closer to his crib.

I had no idea that I would be frequently using the sentence “hold on I’m just getting your booger’s…they’re so close just sit still.”

I had no idea that I would be quitting my job because he needed me.

I had no idea that I would go shopping and literally not once look at the women’s clothing section or make up aisle. I have zero interest in anything for me. If I have a gift card or coupon, someone’s getting a teether or some diapers. And it ain’t me.

I had no idea what it was like to care this deeply for someone. And to genuinely want to do the right things in life because HE deserves it. I know, I deserve it too- but other than Gods creation, my greatest identity is Hunters mom.

And I’m not desperately seeking someone to suffocate. I’m just living each day with my true puzzle piece and his daddy.

Sometimes I feel inadequate. And I realized that’s not based on how I actually feel about myself. That’s based on how I feel about Hunter. Of course I feel inadequate. Because he deserves absolutely everything and who can do everything?

Only God.

So I pray each night that God fills in my gaps. With Him, I am adequate. With Him, I am everything this perfect baby deserves.

I hope you read this and think to yourself too, that with Him, you are adequate. Because you are. Let Him fill in your gaps.

Trust me, he’s pretty good at it.

And Hunter grabs my face and licks it all the time. I count those as kisses. And yes mom, I get why I do this. And why I will always, always do this.

Again.

This post is current. I don’t even have the energy to post all the details of the last six months.

Eventually I will.

But tonight hunter is just past 7 months old and he is back in the hospital. Yesterday I couldn’t wake him from his nap.

I don’t ever want that again. I don’t ever want to put my hands on my baby’s chest and rattle him and yell his name and get no response.

But here we are. They have an EEG on his head. They have an apnea monitor on his chest.

And I am 100% sure even more than I ever have been that he is the reason I was born. He is the love of my life. The reason I breathe. The center of my soul.

I have traumatic details to share, but this post is going to take a different direction.

Let’s talk the good.

We got here in time.

Because of Mickie’s Miracles, every time Hunter has issues I know he is in the hands of the best of the best.

This hospital is nothing like the first one we were sent to. This hospital lets me hold him. Let’s me feed him. Let’s me sleep next to him. Let’s me shower. The nurses smile and giggle with him. The spiritual counselor comes and prays for him. The nurses remember him. (One even said he’s her favorite, don’t tell).

Last time we were here, I was so frazzled that I dropped my phone and shattered the screen beyond repair. So I have been using a really slow old one that I have been so thankful for. But for some reason the second we got here this time it just decided it was done working. So tonight my friend BRANDI BECKER (caps for emphasis girl) drove all the way here to give me an iPhone. I can’t even fathom. I don’t have to worry.

Darrel’s cousin and his wife have visited and prayed both days. My mom has been here holding hunter during the worst moments. (And they get really bad). Darrel has come both days.

Kristie has texted and FaceTimed us. Hunter smiles from ear to ear when he sees her.

My sister sent me a loving text this morning.

Tonight I got to hold hunter in my lap and watch mrs. doubtfire with him. I told him all about how I used to watch it with my daddy. He giggled at the right times. I’m telling you he’s a genius.

I don’t know, this is all so horrible. BUT THERE IS SO MUCH GOOD. I don’t feel like sharing the horrible this time.

My only request is that you fervently pray for comfort for Hunter. Pray that he feels as loved as I feel right now. Pray that even though this is terrifying and uncomfortable and painful, that there will always be something sufficient enough to soothe him. Pray that his little body be mighty.

Pray that they continue to stop his seizures.

Pray for the awareness of pediatric epilepsy. Pray for the funding for Mickie’s Miracles.

PRAY TO END EPILEPSY.

Pray a prayer of thankfulness in advance for all God will do.