Tuesday, December 17, 2013

Who I Be

I've been trying to figure out a way to explain what this whole experience has been like.

Which is difficult in and of itself, because each day is totally different. 

Different routine, different emotions, different levels of exhaustion. 

Always exhausted. Just some days more than others.

I could tell you the specifics of our situation, but it'd be kind of a boring read.

Especially since I'm in a particularly crappy mood right now and I don't want to bum you out.

But if I were to tell you about our experience, it would be all like:

We live in a 400-square foot apartment, where Elle and I share a bed and Pat sleeps on the living room floor because there has not been one night yet that both kids have managed to sleep through the night. And when one starts yelling like a banshee, the other one gets going, and honestly, I'd rather shack up with a 3-year old than deal with them yodeling back and forth in their shared room each night.

I would tell you that most of our days are spent administering medicines, changing dressings, going to the hospital, having therapies, and attempting to do all of the other normal small child things. Feeding, bathing, playing, cleaning, chasing.

It amazes me how I can slap on some blue medical gloves and administer an intravenous antibiotic like I've been doing it my whole life, but low and behold, sometimes I forget to give the kids dinner. 

This is especially true when Patrick is back in Shreveport for work, which he is starting to be more and more often.

The rest of our time is spent doing Lord knows what because Lord knows we can't do anything at all.

We are confined to our glorified dorm room day and night because Reid is not allowed in public. 

Or outside much. 

Or anywhere really, except for the most crowded place in Memphis, which happens to be St. Jude.

If I were to tell you about our experience thus far, I would complain about the fact that I left my home and my family and my friends and my dog and my bed and my freshly planted flowers in one day's time and I've yet to return.

I would go into detail about our lack of schedule or structure and how that's hard for a mama but it's really hard for a bebé. And that it causes sweet, displaced, confused little girls to ask early and often, "Mama can we please go home? I miss my family and my school and my room."

I could tell you that it's heartbreaking to say no. And that I cry every time we have to send her to my mother's because she has a little cough. And well, we just can't risk a little cough.

And who wants to hear about our days and nights in the hospital and how helpless it feels to watch Reid get hooked up to multiple IVs, where the only place he has to play is a hospital bed? And how he's such a trooper, but ultimately he gets tired and exhausted and sick from the continual discomfort of chemo?

And the fact that the only thing more elusive than a good night's sleep is a meal that doesn't consist of pizza?

And it would just make you sad if you knew how much I fear for my baby boy and his health and how guilty I feel for thinking all of those things I just wrote because, honestly and truly, his health is all that matters, and I'll live in a box if that's what it takes.

But I don't want to live in a box.

See, that's the thing. Somewhere along the line I got it in my head that I had to Be.

I had to Be smart. I had to Be pretty. I had to Be funny. I had to Be stoic. Give perfect advice. Have it all together. 

I had to Be a great mom. A perfect wife.

And then. I had to Be a special needs mom. A heart defect mom.

A Cancer Mom.

And what does all if that mean anyway? Who the hell wants to Be A Cancer Mom?

Since Reid was born, I've been realizing that I was so focused on the have-to-bes that I was never focused on the what-bes.

And when you are uninformed and oblivious to how life works, thinking ahead and trying to be perfect seems like a really grand idea. But in reality, all it does is set you up for failure. 

Because you can't plan for things like cancer. And even if you could, why would you want to? 

It wouldn't be anything like you planned anyway. 

So, it's better to Be in the present. To feel what you feel. To accept who you are at that moment.

To say, yeah, I'd live in a box on the street to help my kid, but I hope I don't have to. 

Cause that would suck. 

I constantly have to remind myself of that because in times like this I often fall into those old traps of having to Be. 

I have to remember to stop rushing around. To stop trying to Be everything to everyone, because that always ends in a disaster. 

I have to tell myself that I'm doing a good enough job. And that there's no manual on how to handle this stuff. 

Easier said than done, but sometimes I just have to remember to Be ME.

Whatever that is today. Sad, happy or anything in between. 

There are a lot of times when I'm witty and effervescent and super-duper, awesomely positive!

But lately there are equally as many times that I'm pissed off about living in a tiny ass apartment with no DirecTV.

I hate that I don't have my 
king-sized Sleep Number bed and my 9-year old pug to help me sleep at night. I especially hate that I don't have my comfy husband there to spoon.

(Look, I'm well aware that this isn't Darfur and that I should slap myself for missing a king-sized Sleep Number bed. But, I'm just being honest.)

And I really, really hate that it's the holidays and that it doesn't feel like it at all. For two years in a row.

I hate that I feel like my kids are getting swindled out of the experience even though, yeah, yeah, yeah, Christmas is about who you're with, not where you are.

I haven't even listened to one Kenny and Dolly song this year.

I hate that we are basically held hostage. That I can't think of any other situation where you are literally and unexpectedly ripped out of your home and thrown into an unfamiliar, scary situation. 

Except for jail. And listen, Pat still carries around my bail money in case I ever wind up there.

I hate that just six weeks in, a lot of the phone calls have stopped. And that I'm left to wonder if everyone is just too busy doing all of the wonderful, fun, holiday things that we don't get to do like having snowball fights or cuddling puppies by the fire or baking homemade sugar cookies while wearing really beautiful, really expensive cashmere sweaters.

Or do they just feel like they don't want to bother us because we're super busy Having Cancer?

I know it's the latter. And I know it's the thought that counts, but truthfully, not calling is way worse than "bothering" us.

But one of the things I hate most is that I feel like I can't be a good mom to both of my children right now. That I can't meet their needs properly.

Because I can't cure cancer and I can't adequately explain to a 3-year old this shitstorm of a situation we're in.

And I hate that Reid has been through hell and back during his short fifteen months of life.

But the thing I hate more than anything is that people might think of him as this sick child. A baby who, as one person said to me the other day, has been dealt a bad hand in life.

I hate a lot of things about our situation.

And I'm owning them today. 

But there has NEVER been a day that I thought my child has been dealt a bad hand in life. 

Yes. I wish that we were at home with two healthy and happy children, peacefully sleeping in their own beds. 

I wish that my mind would stay calm instead of whirring with a thousand different emotions all at once. 

Sometimes I also wish that I was tanner or taller or that I interrupted less and listened more.

A lot of times I wish that I was on the beach somewhere drinking micheladas.

And I definitely wish that I didn't have these two inches of roots growing out of my head. And God Bless Us, we could all use a haircut, even Reid, but I don't care because I'm letting him keep very single scraggly, thinning, perfect hair he has left.

I would change many a thing right now if I could.

But you know what?

Those are just things. Circumstances. Moments in time.

And they do not make Reid's life a bad deal in ANY way.

What I really wish is that everyone in the world could meet Reid. He is handling cancer like a boss.

He has more energy now than he ever has. The chemo gets him down, but then he's right back up.

(That's the thing about pediatric cancer. The kids are just being kids, while the adults are having full-blown panic attacks in the hospital bathroom.)

Reid is a perfect example of what it's like to be your imperfect self.

And there is so much beauty in that.

We are an imperfect family.

But we are us.

I am ME.

I am a wife and a mom and a friend and a daughter and a sister and sometimes I'm funny and sometimes I'm nice and sometimes I'm mean (especially every morning when I wake up) and I am most definitely never tan. And I may be stressed and tired and forget to feed my kids, but I love them. And if you ever get a pass on feeding your kids, it's probably gonna be when youre living in a 12x12 room, spending most of your days administering cancer-fighting drugs to your baby. (
And frankly, I'm the best nurse without a degree that you've ever seen.)

I may hate the situation I'm in, but I still have to figure out how to fight for my family. Even when I don't have the strength.

Even when things get tough and I forget who I am. Or I stupidly try to be someone I'm not.

Some Super Hero Cancer Mom or whatever.

We don't need to do things better. We don't always have to try and Be something or someone or somewhere. 
We don't have to pretend that we are okay with our circumstances.

We just need each other. Even if it's in the solitary confinement we now call home.

Because we're perfectly imperfect together. 

And besides, it isn't the hand youre dealt. It's how you play the game.

And we always have our game face on.

Thursday, December 5, 2013

The Road Less Traveled

After I wrote the last post, I felt a little of my bruising start to heal.

Words are cathartic for me. Expressing my feelings openly and honestly has always helped me through tough times. Although, there have been plenty of moments when I've not known how to channel my feelings properly.

Sometimes I'm like a volcano -- everything just spills out and makes a mess.

Some people cry. Some get depressed. Some ignore the problem altogether.

I get mad.

As I've gotten older, I understand better what my anger means. I understand that it's ok to feel that way, because it's just how I manifest my emotions.

But, I try deal with it in more productive ways. Like writing.

Sure, I still have a thermonuclear meltdown every now and then, but they are few and far between.

The exception being this past month. In the last four weeks, I've had temper tantrums that put Miss Elle's to shame.

She'll watch me with those wide eyes, and you can just tell she's thinking, "So THAT'S how it's done."

No sweetie, it's not. Mommy has been a bad, BAD example.

Mommy is not 3-years old. Mommy should not act like it.

Lord, sometimes I wish I was. But, no. I'm an adult and I have all of this responsibility, so that type of behavior isn't exactly sustainable.

Anyway, I spent the first few weeks here being very angry. Mad. Fighting. Talking about how unfair it all is.

But, I'm hoping I put most of that behind me. I know I'll still have my moments. I don't think you can go through something like this and not have incredibly deep emotion over it. But, I'm trying to focus my energy on what's important instead.

Patrick said something that I found to be incredibly poignant. He very kindly said to me, "If you keep focusing on the past and all that we left behind, then you'll be unable to focus on the present and all that is ahead. We have to get our son well. That is all that matters. We are still a family. We are still us. We are in this together and it doesn't matter where we are. We have a job to do it, and we can't do it without you."

Well, damn. I knew I kept him around for something. Pretty sure it's because he always keeps me in line.

So, excuse me for being a jerk. Diapers off, big girl panties on. Let's do this thing.

And here we are, Day 27.

I can't believe it's only been 27 days. It seems like a lifetime.

Tomorrow will mark the one year anniversary of Reid's open heart surgery.

I keep thinking about that day for several reasons. Mainly, because I am just so proud of my little boy and how strong he is. I wanted to have a big party on Friday night for him.

(There's always next year, right?)

But, I also keep thinking about perception and change. That's a huge theme on this blog, because that's a huge theme in my life.

Last year on this exact date, I was crippled by the idea that my 10-week old was about to have such a major operation. And that after the surgery was complete, we'd still have to tackle the Down syndrome piece.

And tackle it, we did. We knocked down all of those obstacles and kept cruising.

I honestly thought I had a my life figured out. I experienced some incredible things and learned some amazing life lessons.


I guess I had more lessons to learn.

Cause we met another roadblock on our journey.

And, I'm trying really hard to understand it all. To figure out what it is that God wants me to do in this situation.

Maybe I didn't listen hard enough last time?

Maybe I got too confident? Too comfortable with my new perspective?

Maybe I didn't get the right message?

I don't know.

And I want to know. I want so desperately to understand what this is about.

What am I missing here? What is it that I need to do?

I want to do the right thing. I want to make a difference. I want to be there for my son. I want to continue to change for the better.

I don't want to mess this up. I don't want to stall out from fear or anger.

So here's what I've come up with so far.

I don't need to know everything. I don't have to understand. I may never know what this is all about.

And that's ok.

I don't have to know the reason behind something in order to do the right thing and make a difference.

I don't have to have all of the answers all of the time. I just have to take it all in and let the lessons flow. Allow the people that I meet along this journey to make a difference in my life. I need to be still and let others teach me for once, instead of always being the one trying to teach.

When you walk the halls of St. Jude, you see some things that you can't unsee.

Very, very sick children. Tired, worn-down parents. Tears. Vomiting. Scars. Bald heads. Pale faces.


Love. Happiness. Joy.

It's all there. Sometimes you have to look past the masks and the beanie hats to see it. But it's there.

When you have a sick child, you realize that every day is a gift. That all of the stuff that you were worried about before doesn't matter anymore.

Your perspective is so completely different, because you are experiencing a very real fear. This isn't a cold. This isn't teething. This is life or death.

And there is always the unspoken pain. What if my child doesn't survive?

No one talks about that, because that's not an option. It's unfathomable. You have to put your head down and you have to push through and you have to fight.

You can't get bogged down in the what-ifs.

People always tell me I'm so strong. And that's nice. But, I'm no stronger than any other parent going through this.

People wonder how we do it.

And the answer is, you just do. It's your child. You'll do anything. Not to sound like a Nike ad, but you freaking JUST DO IT.

I learned that last year when we went on our roller coaster ride.

Maybe God does give his biggest battles to his strongest soldiers. I'm told cliches like that all the time.

But, I don't know.

I think it's more about the love that a parent has for a child. And the fact that you will do anything.

ANYTHING to take care of your babies.

I didn't know what we were in for when I became pregnant with Reid. If you would have told me my life would turn out this way, I wouldn't have believed you.

I would never have believed that it was possible to endure so much.

Reid may not be the boy that I envisioned when he was brand-new in my belly. This life may be different than the one I daydreamed about in years past.

But, I wouldn't change it. Because it is SO much more than what I imagined.

Reid is my teacher.

He is everything I want to be.

He is everything that anyone could hope to be.

He has been here a mere four weeks, and the nurses already fight over who is going to take care of him.

He will vomit because he is sick from chemo and then clap.

He will cuddle the very person that just stuck him with a needle.

He will spend his uncomfortable, sleepless nights babbling and practicing his Downward Dog.

He will refuse to eat but attempt to play.

He will wake up from anesthesia with a smile.

That doesn't mean that he likes any of this. Far from it. He gets frustrated. He cries and yells and screams. He gets mad. He gets angry. (Lord knows he comes by it naturally.)

He hurts.

But he lives his life day to day.

And Every. Single. Day.

He forgives.

He takes what they throw at him and he hits it out of the park.

So. I look at him. And I look at all of the other kids going the same thing. And I know that there is nothing in the world for me to be angry over.

Because if anyone has the right to be angry, it's them.

But there they are. Everyday. Making a choice to be happy.

They are heading down this very long, very difficult road and they are facing each battle head-on. They know that these obstacles are just that. Roadblocks on an otherwise wonderful path.

Maybe it's the Road Less Traveled, but they get what most people don't: It's not the destination. It's how you navigate your journey that matters.

So, I'm going to try to navigate mine accordingly. I may crash and burn along the way. But if I follow Reid's lead, I know I'll make it to the finish line.

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