Wednesday, June 25, 2014

Choose Happy

Only two months have passed since I last posted, but it feels simultaneously like many years and a few short days.

Everything is different but everything is gloriously the same - hello, Sleep Number bed!

(Y'all. I know I talk about this bed a lot, but, you really don't understand. I can't live without it. Ok, obviously I can. But, I don't want to ever again.)

I haven't written lately for several reasons, the first being that I was kinda busy.

The second being that I once promised myself I would never put "Blog" on my to-do list. I write primarily for me. So much of our lives we give over to someone else and this is just for me - a space where I can put it down and let it go. I do choose to make it public - sharing and connecting with others is a huge part of this journey. But it doesn't make it any less mine.

All of that said, the main reason I haven't written is because I haven't known what to write. The swirly whirly in my brain has yet to make it into cohesive thoughts. I haven't had a moment to breathe, much less blog.

How do you put onto paper the most monumental experience of your life? How do you take the biggest, most life-altering THING you've ever known and weave the highs and the lows and the fear and the joy into one simple story?

How do you mourn and celebrate; process and move forward all at once?

How do you catch up with friends and get into a routine and rejoin the real world when all you want to do is stop and rest and heal?

How do you stay quiet when you feel like shouting from the rooftops, "Thank you, God!!!?"

I don't know.

If you read the blog, you know our story. I'm not going to rehash it for the thousandth time. Ok, maybe just a little hash - our son was diagnosed with AML leukemia last November, and has bravely endured aggressive chemo, torturous side effects, and night after night in the hospital.

Time literally stood still for seven months, and we are so incredibly grateful to say that his battle is over. He is in remission! We were given the good word from St. Jude on May 30, and have been back in Shreveport for three weeks. It has been beyond amazing to be home. Everything is better than I ever remembered it. I love doing the mundane. I love doing nothing at all.

Reid and Elle are doing well. Elle is, in fact, doing better than ever. She has all of her people home and she is happy. She is sleeping well and playing hard. She has grown exponentially this past year. And I'm not talking about the growth chart.

Reid is doing great, too. He is having some adjustment issues, though.

He's been feeling kind of meh. I think it's a combo of recouping from the chemo and getting several teeth at once (they were all stunted from the medicines). He's having separation anxiety. Lots of things scare him (but, to be fair, he's never really experienced life before). Despite that, he is full of attitude and has been letting us know he's in charge. He's been throwing things and yelling and refusing to eat and breaking pretty much everything I own. So, basically, just a normal toddler. The docs call it Adjustment Disorder. Mama has a less-nice name for the A part.

We have, of course, been given all of the probabilities and stats about relapse (the chances exist, but are low). We will be going back to St. Jude regularly for the next 18 years. But, I choose not to think about all that.

So, where do we go from here? That's the question I've been asking myself over and over again.

You can't see the things we've seen, hear the things we've heard, meet the people we've met, fear the way we've feared and love the way we've loved without everything changing. You don't just come home and get back in the carpool line like nothing ever happened.

Ok, you get back in the carpool line, but you know what's up this time.

There are so many thoughts and emotions and lessons to process. I'm still in the midst of doing that and I'll probably be doing it for the rest of my life. I may never figure out everything that happened these past two years. And that's ok.

Because this is what I do know. What I have learned: No matter what happens in life, we all have a choice.

We can be miserable, play the victim, and feel sorry for ourselves. OR. We can pull on our big girl panties and get out there and do something with this one and only life we've been given. We can quit looking back and look straight into that bright future.

I read somewhere once that "You can find it funny or you can find it frustrating." As a mama that finds pretty much everything involving tiny humans frustrating, this really resonated with me.

I wrote that quote on sticky notes and slapped it all over my house. Now I try to find it all funny because I know firsthand that it could be so much worse.

You can also choose to be happy. My friend Eloise at The Southard Diaries has spoken about this a lot lately.

And I'm right there with her. Happy is a choice that I make over and over and over again. Some days it's a difficult choice. Some days I choose from a host of different emotions -- it's something that I am actively practicing.

But most days I'm choosing Happy.

The past two years have been insane -- awful in so many ways. We've been run down and run over.

But they have been wonderful, too. They've made me exactly who I am meant to be today. A better mom and a better wife. And hopefully once I get some much-needed rest, they will have made me a better friend and daughter and sister and advocate.

(OMG, I know that I still haven't written thank you notes for all the nice things y'all did for us this past year, but that doesn't make me a bad person does it?!? Surely if married people get a year, cancer people can have two? Pretty please?)

I've said this before, but at least twice a week I'm asked, "How did you do it?" And I always say, "You just do."

It's such a strange inquiry to me.

Like, what else was I going to do? Just bail out and go to Cabo? What would YOU do?

Is this the life I would have chosen? Parts of it, absolutely not. Hell no. I would never choose to watch my child suffer. To endure such mental and emotional and physical pain. To lay in bed and wonder if he will survive the night. I would never choose to be separated from my daughter or live apart from my husband. I wouldn't choose to feel all alone in my tiny bubble. Separated from friends and family -- both physically and emotionally -- because as much as they love us, they really just don't understand.

But the rest of it? I would choose it over and over and over again.

I would choose to go through a few hard times to get to infinite good ones. I would surround myself with illness and disability, so that I can challenge my own supposed "abilities." I would let people who are assumed to be "less than" teach me that they are more than most people I have ever met.

I would choose to have my little world rocked so that I can open my eyes to the much bigger World out there.

And above all, I'd choose Patrick and Elle and Reid -- just exactly as they are. They have given me everything I have in this life.

Sometimes after the old howdoyoudoit question, I get a follow-up about prescription pills and therapists. Surely, I wouldn't have this perspective without the help of both? Look. I would never knock either of those things -- they can be incredibly helpful and have saved many people I love. I've even used them in my past life. But the thought of popping anything other than a melatonin hasn't crossed my mind in years. And a shrink wouldn't be able to keep up with this brain.

This is my life. I want to feel it and live it and be totally present. Whether it's good or bad (Lord, please help it to be good from here on out), I want I want to get on board and ride that train whichever way it's going.

Sometimes that makes the lows lower. But it also makes the highs SO incredibly high.

Either way, I got this. And, I CHOOSE HAPPY.

I choose to take all of that awful and give it back in the form of good. I don't exactly know how I'm going to do that yet. But, I'm determined to figure it out.

The other thing I've realized, and this has been the hardest thing for me, is that none of this -- NONE of it -- is about me. I can't stop horrible diseases. Or genetic disorders. Or my kid from breaking every. single. object in my house.

I can't cure cancer or change the fact that Reid has Down syndrome. I can't make him walk or talk before he's ready. I can't change the fact that Elle had to come second for seven long months.

I can't break every stereotype and eliminate all ignorance. But, I can try. I can choose to be happy and go out there and chip away at my own little piece of the world. And maybe someone will listen. Maybe they'll take something from our experience and use it to change their own little piece of the world.

If you're on Instagram, you can check out a project I recently started called @pleaseseetherealme.

It's a place to raise awareness and alter perceptions. A place where people will realize that the supposed underdogs of this world are actually the heroes. And that we all have a lot to learn from them. It's not fancy -- I still haven't figured out my exact format. But it's something. (If you or anyone you know would like to be featured, just contact me!)

My next big plan is to rest and get back my strength. I'm going to read a lot of books and enjoy a lazy summer with my babies.

I'm going to choose Happy.

And then, when I'm ready, I'm going to take on this Big Ol' World.

Won't you join us?

Home Sweet Home!

 Last few weeks at St. Jude

Thursday, April 10, 2014

The Finish Line

One hundred percent of you will probably disagree, but I'm an introvert at heart.

Sure, I love to talk. I'm very social. I love seeing my friends and I LOVE telling stories.

I've been known to dance on a stage. And on a bar. And I may or may not have done a crowd-induced keg stand or two in my previous life.

Nowadays, my social interactions are more low-key. I love dates with Patrick - he is my best friend and I cherish time alone with him. I love hanging out with the kids and spending time as a family. I consider drinking coffee with girlfriends one of life's greatest pleasures. I could sit around for hours just chatting. I love to go on group trips. I like to give advice and happen to specialize in solving all of life's problems over a glass bottle of wine. I enjoy advocating for special needs and discussing pediatric cancer. I've even been asked by St. Jude to do some public speaking and help with fundraising.

All of those things make me happy. Other people are a huge part of my life. 

But, I recharge and reinvigorate when I'm alone.

The older I get, the more I cherish moments completely and solely to myself. I like to write and read and think and meditate. I like to breathe and focus and have a few minutes of Zen before the chaos resumes.

I guess the proper term for me would be an ambivert. I love being alone, but I also love my people.

So, it's safe to say that the situation I'm in does not lend itself well to my ambivert-ness.

I'm never alone, because I'm with a (really cute) 20-pound dude every second of the day. As I mentioned in my last post, we can't go anywhere or do anything. Unless of course it's leukemia-related. Which, as fun as it is -- and trust me, it's a BLAST -- just isn't the same as say, going outdoors or being allowed into public buildings. 

So, we either sit around the apartment or we sit around the hospital. We try to be creative with our time, but mama isn't feeling too inspired these days. We're getting a little sick of each other to be honest. Pardon the pun.

In addition to my rousing personal life, I have zero social life in Memphis. Unless you count doctors and nurses as friends. Which, I try not to, because a friendship would really get in the way of me ordering them around and asking 450 million questions every week. 

I've been lucky to have friends and family come in and keep me company. But, we're usually pretty busy with all things Cancer, and before I know it, we're saying goodbye.

I have seen my husband probably a total of a month and a half since November, and almost none of it has been quality time. The four of us have been together as a family even less.

All that to say, I'm pretty run down. 

I find myself feeling lonely, but I would give anything to be ALONE. 

It's quite the ironic predicament. 

The days are getting harder even though they are getting fewer. 

I tell myself that this is almost over. That we are thisclose to being a family again. 

So close to going home. To being free from chemotherapy and doctors and hospitals and medicine and horrible side effects. Free from low-immunity and central lines and IV's and leukemia and all of the fears and concerns that come along with it.

That soon we will be able to go outside and to the grocery store and to the playground. That we will be able to see friends and go out to dinner and over to other people's homes. That Reid will be able to take baths and sleep without pain meds and eat real food. That he will have the freedom and the energy to learn how to walk and talk and do all of the things toddlers are supposed to be doing. That he'll soon be able to play with other children and -- more importantly -- with his own sister. 

I remind myself that we will be so grateful when this is all done and our little boy is healed. That we will be a family again. We'll play and travel and throw parties and have friends over. We'll wake up each morning and go to sleep each night without spending hours and hours of time each day devoted to this horrible disease. 

But, in a way, being close to the end makes it more difficult.

Pat likens it to a marathon -- not that I would know. When you're on Mile 22, you just want to give up. You're exhausted and worn out and you could just collapse at any minute. (And frankly, you wouldn't care. Because at least you could rest that way.)

The end seems lightyears away. And even though you know you will feel like a champion when it's over, you just don't know how you're going to make it to the finish line. 

Some days I feel as though I will absolutely lose it. I feel like I can't administer one more IV or pin him down for one more dressing change. I can't see any more blood or vomit or tears. I feel like I will scream if I hear another half-assed answer from one of his doctors. If I stay indoors for one more second or go one more day without seeing my husband and daughter, I will simply explode. 

I really don't know how we're going to make it some days. 

But, I know that we will. 

We just have to find the strength and follow our instincts. 

And my instincts are telling me that I need a break. So today, I'm packing my bags and heading home to Shreveport for a while.

I'm going to spend the weekend with friends and family. I'm going to laugh and dance and watch my little brother marry a woman we all adore.

I'm going to spend time with my daughter and have coffee with friends and go out to dinner any night I see fit.

I'm going to recharge and rest and read and have a few glorious hours alone each day while Elle is in school.

I'm going to celebrate my little girl's fourth birthday and give her the rainbows she's been asking for. If anyone deserves a rainbow, it's The Divine Miss Elle. 

I'm going to let Patrick and my mom take the reigns in Memphis -- they can do the Cancer thang for a while.

And after I rest for a bit, I'm going to come back to Memphis and finish this race.

I know I won't be alone. I'll have my friends, my family, and one very strong, very capable little boy to guide me.

And when we finally reach the end, it will be the most amazing victory. 

A finish line and a starting point all in one.  

A couple of pics from our St. Jude photo session!