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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!

I haven't written lately for several reasons, but mainly 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.

You can also choose happy. 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.

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.

My 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?










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 - 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!



Tuesday, March 11, 2014

Love You. Hate Them.

I wanted to take a sec to say how incredibly grateful we are for all of the love and support you've sent our way.

Every day we get texts, emails, calls, letters and gifts. Every time I post -- either here or on CaringBridge -- I get such sweet responses from so many of you.

We have received the nicest letters from complete strangers. We've heard from people that we haven't spoken to in 20 years. Each night, Reid sleeps on a quilt that was painstakingly made for him by a woman he has never even met.

These random and specific acts of kindness get us through each day. They lift us up and they make us smile.

We love hearing from you. We love reading your words. We LOVE having you visit.

There are the people who know us well -- they curse cancer or make a joke. They know that we like to laugh and keep it loose. Cancer ain't gonna hold us down.

There are the people whom we don't know at all -- they send beautiful prayers and well wishes. They know that it takes an army of faith to get through a battle like this.

Every single one of you are loved and cherished.

I told a friend the other day: Times like these show you the true spirit of others. You get this rare, unobstructed view into a person's character and learn so much about their intention. Some people literally blow you away with kindness, love and generosity. Strangers become friends. Old friends become new. Good friends become best friends. And best friends become a lifeline.

I only hope that when the time comes to return the favor, I can live up to all of you. We honestly can't wait to pay it forward -- and we promise we will.

THANK YOU.


*************************

Now that I've talked about how much I love all of you, let's talk about a few things I hate.

Call 'em whatever you want:

Microbes.
Parasites.
Spores.
Viruses.
Bacillus.
Pathogens.
Microorganisms.
Bacterium.
Protozoa.
Disease.
Grunge.
Filth.
Dirt.
Grime.
Mold.
Fungus.

They are all GERMS.

And we hate 'em.

You think cancer is the problem? Think again. All we think about are motherfricking germs.

Don't touch that! Don't go there! Don't hold that! Wash this! Sanitize that!

It's enough to make you go crazy.

Yep. Cancer sucks. I hate it. I want to eradicate it forever. No person should ever have to suffer through this horrible disease. A child should spend the day playing, not hanging out in a hospital.

But, the dang germs are an almost bigger problem.

At least for us.

With Reid's type of cancer and his specific treatment, his immunity is almost consistently at zero. He is always what is called neutropenic. That's when your absolute neutrophil count (ANC) is at about 1,000 or less. Reid hangs out below 300 most days, which is severely neutropenic. In fact, he spends weeks on end at ZERO.

Today he was 100 and everybody was pumped.

The chemo hits him hard and his numbers don't really have a chance to recover before he's hit again. It's all part of the plan.

Unfortunately, the plan means that his biggest risk at this point is infection. Bacterial, fungal, viral. It doesn't matter. They all suck.

So, we have to be vigilant and head these suckers off at the pass.

A lot of you have come to visit, so you know. A lot of you have not been allowed to visit, so you also know.

We're not talking about handwashing, people. We're talking "Are you sick? Have you coughed? Have you sneezed? Did you so much as watch a commercial about sinus medication today? Take off your shoes, scrub your hands, change your shirt, put your hair in a ponytail, sanitize your glasses, wear this mask and NO! You still can't hold him, are you absolutely insane??!?"

When Reid's counts are at zero, every precaution is taken. Elle is usually sent home. Toys are sanitized after each use. He can't go outside unless he has on a mask and a stroller cover. We can't have plants or flowers. No latex balloons. No Play-doh. (Not that he typically plays with latex balloons and Play-doh, but still. He couldn't even if he wanted to.)

A few weeks ago, we were able to go to Shreveport for a few days. I made my sister-in-law, nephews, and brother, -- my own flesh and blood --  go around the house to the backyard so that the kids could play outside. I wouldn't even let my own family in the door.

Reid can't be around an adult if they so much as have an itchy nose.

And he can't be around other kids -- period.

Sure, he might turn out to be a total weirdo. But, he'll be alive. (Hopefully, he won't turn out like our dog. We socialized her way too late, and now all she does is sleep and bark. Sometimes both at the same time.)

Anyhoo, people are pretty much off limits when he's neutropenic.

He also can't go in public. Not to a restaurant. Not to the grocery store. Not to Walgreens. Not anywhere but the four small walls of our apartment and the hospital.

He can technically go outside, but he has to wear a mask and avoid construction and crowds and plants and wind and clouds and sun and air.

Not really, but it feels like it.

We have to be extra-careful with his meds. Giving him an IV is an act of congress because he wants to grab it and kick it and basically smear germs all over the opening that leads right to his central vein. His line and dressing have to be sanitized and changed every other day.

Gloves and masks and alcohol wipes and hand sanitizer are everywhere.

And let's discuss eating, shall we?

Brother has 99 problems, and eating is definitely one.

For all you Down syndrome mamas, you know. Our kiddos have low tone or hypotonia. The low tone applies to everything, which is why physical development is often delayed. Hypotonia in the face and mouth -- combined with a different palate structure -- means that talking, eating, and drinking are more difficult.

This doesn't affect every kid with Down syndrome. Just like a typical kid, everyone has their own strengths and weaknesses. Some of Reid's buddies could be championship eaters. But, for my man, eating is probably his top developmental issue.

He is 17-months old. He is pulling up on everything, crawling, bear crawling, cruising, climbing stairs. He is attempting to stand alone, and he can take steps with the help of a toy or device.

His gross motor is amazing. He's doing so well and he works so hard. I am such a proud mama.

His fine motor and cognition are really good, too. It's hard for him to do some things, but he can sign at least ten words. He understands a lot more. He knows several animals. He points. He has a pretty good pincher grasp. He does the Itsy Bitsy Spider and Patty Cake and Peek-a-Boo. He can find your nose, eyes and mouth. He can put objects in and take them out. Like all of our kiddos, he knows how to do so much more. He WANTS to do so much more. But his little muscles work overtime and things are harder for him. He'll get it all in his own time.

But the feeding. Lord, have mercy. The feeding. This child will not feed himself. He will not give up his bottle. He will not eat solid food.

He can kind of chew, but he just doesn't feel like it, thankyouverymuch.

He can drink out of a sippy and out of a straw, but, he just doesn't feel like it, thankyouverymuch.

Heck, he can even feed himself. But, he really just does NOT feel like it, thankyouVERYmuch.

The kid is smart. Why on earth would anyone do something that they can have another person do for them instead?

He's a man of leisure and I respect that.

Anyway, I digress. We're talking about germs, not lounging ability. Point being, we've got enough feeding issues as is.

Enter the Low-Bacteria Diet.

Food carries germs. Lots of em. Food poisoning could kill Reid.

So, it's no fresh fruit. No fresh veggies. No deli meat. No eggs. No black pepper or raw spices. No leftovers. No eating out. No homemade baby food. Nothing unpasteurized. Nothing out of a container, unless it's individual-sized. Nothing can be opened for more than one hour or it's trash. On and on and on.

Basically, he can have anything that is over-processed and severely lacking in genuine sustenence, but for the love, do not give the child anything that might actually have a nutrient in it.

He also goes on a total hunger strike everytime he receives chemo and we have to kind of start from scratch each month with nasty, over-processed baby food.

It is what it is, but I sure would feel better if we could get some vitamins coursing through his little body. In the meantime, we 'll feed him what he will eat and I'll juice the hell out of some kale once we get outta here.

The ironic thing is that I was a so-called germaphobe before I knew anything about low-bacteria diets and immunosuppression.

But, this is different. Washing your hands before you eat is bush-league. Soap and water is for rookies. We're talking about Hazmat suits and full-on Lysol baths over here.

No nutrients or vitamins -- just a ton of harsh chemicals to keep us all healthy!

For now, I'm following my own advice and going with the flow. Maybe once this is all said and done, I'll let them roll around in dirt all day. They can wipe their noses with their hands and pee without washing afterward. They can sneeze and cough all over everything we own. Then, I'll clean them off with natural, organic soap and feed them a dinner of swiss chard, beets and a wheatgrass shot.

Yeah, probably not.

But we ARE going to ditch the masks.




















Wednesday, February 5, 2014

Get On Board

Today was a lot like any other day.

I was pushing Reid down the hall at St. Jude. He was peeking out from under his little mask. I was peeking out from under my baseball cap (the horrors that lie beneath).

I've made a habit of trying to acknowledge other parents. I give them a nod or a smile.

This morning, I walked past a new mom. She was scared and sad and in shock. She had her arms wrapped around the new patient binder and tears in her eyes. Her little girl was with her -- seemingly healthy with a head full of hair that has yet to fall out.

I gave her a knowing smile, but she didn't see me. She probably won't notice little things like that for a while.

But, I noticed her. And I empathized with her. Just a few short months ago, I was her. Awash in a fog of disbelief and resistance and grief. Full of despair and sadness and helplessness.

Crying in the hallway.

I wanted to reach out, but she was gone. So I cried for her instead. I kissed my baby for her. I sent her a prayer. I silently told her that it would all be ok.

I haven't written in a long time, because it's taken me awhile to figure out this new chapter in my life. I've been hard at work trying to slow down the freight train that was speeding out of control.

***

About 15 minutes ago, I wrote the words that you just read. I had just finished typing the part about the freight train and I was pondering how to put even a fraction of my thoughts onto paper. How to verbalize the shift that happens when you let go of control and let life take you where you're meant to go.

And right then, I got a text from my best friend, Monica:

Her: Did you see Sheila's post?

Me: I didn't, but I've been talking to Chip almost everyday. What'd it say?

Her: It talks about y'all!

Me: It does?

It does!

Sheila and Chip are friends from our DC days. I met Chip the first week I arrived on The Hill. We hit it off over several hundred Bud Lights and we've been tight ever since.

They're good people. We have a lot in common.

Chip and Patrick speak Red Sox. Sheila and I speak our minds.

Chip is a Yankee. Sheila is a Southern Belle.

They have a little boy that is Elle's age and a little girl that is Reid's age.

They're in The Club.

Distinguished members of a club that no one wants to join.

In fact, they pretty much run the thing. President and vice president, respectively. No election necessary.

Chip is fighting the battle of his life against Stage IV lung cancer. And he's doing one helluva job.

Sheila is his facilitator and biggest supporter. She writes about their journey on her blog, Team Kennett.

Her latest post was about us. About how hard it was for us to come to terms with this horrible thing called Cancer.

Chip was one of the first people I told when Reid was diagnosed. I wanted him to know he had a partner in crime.

They came to visit about two weeks after we got to Memphis -- I was still in that perma-blur like the woman I saw today.

I remember laying our hearts out on the table. I remember talking about how the proverbial train had left the station without me. 

Sheila speaks to that moment better than I ever could. When I read her words tonight, it was almost like I was reading about someone else's life.

Except that I wasn't.

I thought about what a sad chapter it is in our story -- the early days here in Memphis when all we wanted was for everything to be the way it was.

It got me thinking about all of our sad chapters. Lord knows we've had our fair share.

But, we've had wonderful chapters, too. And when you put them all together it makes a pretty amazing book.

Like us, The Kennetts have one heck of a story. They know all about that line in the sand and understand that the train can go off the track at any second. They know when to hold on and when to let go. They teach us so much. Go read Sheila's beautiful words and support our friends on their own crazy ride.

Anyway. It's not a coincidence that I started writing this post today. That I got that text. That Sheila and I touch on the same themes when we write about our lives.

We're just two mamas. Two wives. Trying to answer the question we get asked the most:

How do you do it?

And the answer is always the same:

You just do.

You stop resisting. You stop resenting.

You accept. You surrender.

You help each other along.

You ride the train until you have to transfer to another one. And when you're told there's a new route, you get out the map. You adjust. Find your way. 

When we first got to Memphis, all I kept thinking was whywhywhywhywhywhywhywhywhwywhy.

Once again, why us?

I wanted OFF the train.

I knew a thousand people, and I didn't know one person whose child had cancer. (Sound familiar?)

Every other mom I knew was minding their own business. Dropping off the kids, picking them up. Making dinner. Worrying over bedtimes and temper tantrums and potty training.

Why couldn't I be one of them? Why couldn't we just be a normal family like everyone else?

In a flash, we seemingly had nothing. No home, no clothes, no dog, no family, no friends, no security, no comfort.

No Sleep Number bed. No Breville juicer. No homemade peanut butter cups.

(Sheila got one part wrong -- I did bring along my Obagi Skincare line. The important things, people.) 

No beautiful backyard with the five oak trees that I curse every year for dropping 40 tons of shit onto our lawn, but oh man, what I would give to watch Pat rake it all up now.

All we had to our name was fear, sadness, and another pamphlet with another unremarkable title: Your Child and Acute Myeloid Leukemia.

I was a complete train wreck -- pun intended.

These days, I'm feeling good.

I'm still exhausted. Sometimes I'm so tired that I feel numb.

But, mostly, I'm the old me.

A lot has changed. I'm sitting comfortably in a king-sized bed with my pug snoring loudly at my feet.

We left St. Jude housing for a larger apartment. There are no visiting hours here. No room checks. No one asking me why I get so many boxes from Amazon. (I mean, do I even need to dignify that question with a response? Because Amazon is The. Best. Thing. Ever. And sometimes you find yourself in a situation where you have to have organic coconut flakes delivered to your house rightthissecond or you will simply just die.)

Some things you have to accept. Some things you have to change.

Unfortunately, we are currently a family divided. For a long while, we were mostly together. Pat was going back and forth and my mom was helping with the kids. But for the past few weeks, Patrick and Elle have been in Shreveport while Reid and I stay in Memphis. Elle has a direct connection to germs at preschool, and we have to do everything in our power to keep Reid healthy. Pat has to work, so he's there with her. We'll eventually switch off and bring Elle back and forth. It was a hard decision, but it's actually working out quite well for right now.

We miss them. And they miss us.

We've had family in and out. I have a group of girlfriends coming up this weekend to help me drink some wine.

I have only taken one real break. But it was to the beach with Monica, and it was extremely cathartic.

Memphis is becoming more like home. St. Jude is becoming more like family.

Sure, I'd love to be in my real home right now.

But, I'm no longer fighting. I no longer dream of Shreveport every second of every day. (Insert joke here.)

I don't spend all my time thinking about how to survive until this is over. If all we did was survive this life, then we wouldn't be living.

Instead, I work a lot at being grateful. I try to let things go. I try to stay focused and present. I read and I think and I do everything in my power to keep Reid healthy. The days are long and sometimes they really suck. But, I FaceTime my babies in Shreveport and we share even the smallest parts of our day. I tell Elle that I miss her more than I ever knew I could miss another person. I blow her 10,000 kisses through the phone. I tell Pat how much I love him. I wait for them to come back to me. We're making it work the best way we know how.

It's hard, but it's the ride we're currently on. And the route changes everyday. Sometimes every hour.

But I no longer ask why?

Because I know the answer.

Why not?

I am not immune to suffering. To sadness. To veering off track.

No one is. Not even an innocent little baby. It seems unfair, but there are no answers to why.

Why does my son have leukemia?

Why does my wonderful friend, Chip -- who introduced me to my husband, by the way -- have terminal cancer?

Why couldn't that mama I saw this morning walk her daughter into a classroom instead of an exam room?

Why can't we all have 2.5 perfect children and a labrador and a white picket fence?

I used to wonder why I was the only person I knew who had a child with cancer. With Down syndrome. With a heart defect.

But, I don't wonder that anymore. Because now I know that God gives you what He gives you.

You can accept it as a gift, or throw it all away.

He gave me my sweet girl and my baby boy.

And now I know a ton of people who were given beautiful children just like Reid.

Kids with cancer. Down syndrome. Heart defects.

In fact, here at St. Jude, we've gotten to know two other little ones with the trifecta. They're also both from Louisiana, if that doesn't blow your mind.

I've met people who have children with Cerebral palsy. Treacher Collins syndrome. Cystic Fibrosis. Lymphoma. Brain tumors. Blood disorders.

People I would have never otherwise known. People with amazing stories.

When I meet these people and I hear their stories and I see their children, I connect with them deeply. We all know a secret that is hard to put into words. We all cry silent tears at seemingly inappropriate times. We are always thinking of our children when that happens.

We know that life can be hard. It can be heartbreaking. But from heartbreak comes indescribable joy.

Joy so big that sometimes you think it will overwhelm you.

Sometimes instead of asking why, I wonder how it was possible to live so long without knowing all that I now know.

How did I live my whole life before Reid and not know that there are trains everywhere careening off the tracks? Trains that seem lost, but are quite possibly heading exactly where they need to go?

Before Reid, I'd never met a person with a true disability. Never had first-hand experience with cancer.

I couldn't fathom that my child would end up even in the NICU. And that seeing him there -- so small and so fragile -- would break me into a million pieces.

I never thought that the surgery to repair his heart would leave mine torn in two.

And it never once occurred to me that I would see him sick again. That watching him suffer through leukemia and chemotherapy would create a hole so big, that at first I wouldn't know how to survive it all. 

I eventually learned that I could begin to put the pieces back together. I could fill that hole little by little with faith, love, understanding, patience and acceptance. Both of our hearts would mend, but not without scars. 

I realized that having a child is not about Perfect Pregnancy! Perfect Delivery! Perfect Baby! Perfect Family! Perfect Pictures!

I wish that were the case for everyone and I'm grateful that it is for so many people.

But, for many of us, that's not reality. We don't get to abide by the the fallacy that everyone else clings to -- as long as he's healthy! 

Because, what if your child isn't healthy? What if s/he is one of the hundreds of children born everyday with a birth defect or genetic disorder or degenerative disease or neurodevelopmental delays? Or one of the millions more that will receive a diagnosis later in life?

Did I ever truly believe that an unhealthy child means less or isn't as much of a gift as a one that is healthy?

Before Reid, I didn't think about the millions of parents who spend each night praying for their children to be well. The ones who pray for just one more day.

Every morning some parent, somewhere, hands their baby over for chemotherapy or open-heart surgery or a bone marrow transplant or brain tumor removal or cranio-facial restructuring. And when they do, they wonder deep-down inside if that's the last time they'll ever see their child alive.

I never once thought about all the parents who spend months and years of their lives at hospitals -- doing whatever they have to do to get their child well. The ones who hold their children tight through daily blood draws and painful procedures and the horrible side effects of medicine.

I certainly never knew that I would be one of them.

Before Reid, I never knew what it felt like to sit in a room and get bad news.

I had no idea that it was possible to live your life in a hospital room, trying to delicately balance the care of your family, even though you rarely have your entire family in the same state.

I didn't know that I would worry just as much, if not more, about the well-being of my little girl. She may be healthy, but her needs are just as important.

I didn't know that I would stress so much about Reid's development and cognition and spend enormous amounts of time making sure he doesn't get behind. Whatever behind means at this point.

And oh Lord. I really didn't know that I would collect his hair strand by strand as it fell out from chemo and save it in a ziplock bag because I can't bear to throw it away.

That I would perfect the way I hold his head while he's anesthetized -- holding it just right, so that it doesn't fall backward when the drugs finally kick in.

That I could sing The Itsy Bitsy Spider for hours on end, if it means keeping him calm enough to be poked and prodded "just one more time today."

I didn't know that I could survive for months on no sleep, crappy cafeteria BLTs and adrenaline.

That I would spend so many nights in a hospital room that I would one day lose count.

I didn't know that I could get up every morning and smile and laugh and have a thousand conversations with a thousand different doctors and actually have the wherewithal to comprehend what they are all saying. (Thank you, Starbucks.)

I didn't know that I could do it.

But I can. And I am.

Every day, every hour, someone gets bad news. Way worse news than we've ever gotten. And it's not just cancer. People go through so much in this thing called life.

Unfortunately, lots of people get run over. But the ones who are along for the ride always end up right where they need to be. Even if they don't know where they're heading.

We're on board for wherever life may take us. And in the meantime, we'll try to love harder and forgive faster. To laugh quicker and live slower. We'll enjoy all the things we took for granted before. The house and the dog and the family and the friends. The hairstylist.

We'll pray for all of the people that can't go home. For all the mamas who rock their babies to sleep each night in a hospital room.

And for all the sick daddies who teach their children by example. Who so expertly maneuver this ride called Life.

We'll reach out. We'll help them through.

And then. The four of us will make it home. We'll sit under those big oak trees and reflect on our story while we wait for the next train to come.

(Only this time it better be the freaking Orient Express.)




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