Wednesday, January 21, 2015

Miles Back Home

Just keep posting pictures of that boy. 

I couldn't have guessed that such a simple text would in hindsight mean so much. 

We had been talking all week while he lay in a hospital bed. He sent me a breathing tube selfie and I ribbed back, "Try to get some sleep with that thing on your face." 

It was our normal banter and I never wanted to believe it would end. We laughed and we joked. We occasionally took the serious route.  

Can I do anything from here?

Just keep posting pictures of that boy.

And then it was over.

Perhaps I did know that these seemingly basic interludes would one day take on greater meaning. Somewhere deep down I must have, because for the past two years I have been unwittingly creating a virtual memory vault filled with texts, photos, and voicemails that I could never bring myself to erase. 

Bayard Winslow Kennett II - aka Chip (Chippewa as I liked to call him) - was one of the greatest people I have ever known. I met him at the ripe old age of 22, back when we both lived in Washington, DC and worked on Capitol Hill. Every week day was spent IMing back and forth about the best bars in town and every weekend was spent exploring them.

I've written about Chip and his beautiful wife, Sheila, before in my post Get on Board. Team Kennett - as their family of four has come to be known - have been an inspiration to so many as they focused on being present and grateful after Chip's 2012 diagnosis of Stage IV lung cancer.

The above words were our last correspondence just hours before he passed away.

We were in frequent contact and texting had for years been our method of choice. But we were friends before texting was a thing. Before we had spouses and children and Subarus to talk about - before our families transformed our lives from a hazy pastel into a blinding rainbow. 

Long ago - before early morning chemotherapy took the place of late night cocktails - we were just two young kids trying to find our way.

We spent our early years together in Washington. An instant friendship created by mutual acquaintances and job proximity, but strengthened by a genuine like and respect for one another. We explored the city and made lots of new friends and stupid mistakes. We were young and a bit reckless, which was perfect because it was that exact time in life when you are supposed to be young and a bit reckless. I trusted him and and relished our friendship and knew that he was truly one of the good ones. He always had his friends' best interests at heart.

And so, when he called me late one Saturday night in 2004 to come meet a group of his college friends who recently moved to town, I didn't hesitate to drop what I was doing and head to a dirty karaoke bar to meet the man I would one day marry.

Hours afterward, I would find myself in a car with Patrick, Chip, and his new love interest, Sheila - four people oblivious to the fact we would be brought together years down the road over a double cancer diagnosis. We laughed when Patrick asked for my number and I haughtily replied that "he could find it if he really wanted it." 

When Patrick called me two hours later at 1:00 in the morning, it was Chip who had written my number across his arm twice in large, drunken scrawl.  

The years went on and Patrick and I became engaged as did Chip and Sheila. We moved and married. They married and stayed. We both had two children - each set born within months of each other. 

We still kept in touch - I saw Chip every year when I visited DC. And in the interim, we sporadically texted and emailed and had the occasional phone call. We discussed important things like Sonic, kid's birthday parties, and what amazing spousal choices we had made (he took credit for both). We waxed poetic. Joked about our past and wondered if our kids would be as idiotic as we were. (They would be, we decided. But, they would also turn out pretty awesome.)

He would often send emails with subject lines like "Girl, Where You At?" Photos of his kids with captions that read, "Look what I made" and "Check out these cheeks!" And texts the day before my babies were born that said, "kick some ass tomorrow." 

When Reid was diagnosed with Down syndrome, instead of acting weird, Chip started calling him "my man" and "my boy." And when Reid was recovering in the CICU after open heart surgery, he often checked in, asking, "hows my little buddy doing?"

But on Sunday, October 28, 2012, I received a text I never expected: 

Hey babe, sorry to do this over text, but I wanted to be the one who told you. I was told on Friday that I have cancer. It is in a bunch of places but I'm going to beat it. Getting old is fucking hard work.

It was followed by an hour-long phone call, a few tears, and the first of many Chip Kennett power talks that I knew even then were as much for him as they were for me. Sheila was 35 weeks pregnant with their second child. Chip was told he was dying. I can never, EVER imagine what that must have been like for them. I didn't have the right words, but I did what I could. I knew I could pray and send support but, more importantly, I could laugh and cuss and make jokes. Because that's what we did and that's what he needed from me. So we kept in better touch and we laughed and wondered when our conversations started including all these adult words like Down syndrome and congenital heart defect and CANCER and also when the hell did we become so old and so responsible for shit?!? We often talked about bad news and Befores and Afters and how you can just wake up one day and right there staring you in the face is a choice you never wanted to make. How you can feel sorry for yourself or you can pull on your big kid pants and go out there and kick some ass.

We preferred to kick some ass.

So when we received our cancer news just a year after his, I knew that Chip would not know exactly what to say, but that he would still give me just what I needed. He would pray and send support and laugh and cuss and make jokes. He was one of the first people I told and he was along for the entire ride.

Me: So, this is crazy, Chippewa. You know that before and after? That line in the sand? Well, here's one more to add to the list. Reid was diagnosed with leukemia yesterday. Nothing to do or even say, but I feel better with you and Sheila adding us to your prayers and knowing he has a buddy to fight this thing with.

Him: Oh babe, I wish I could do something to shoulder what you are feeling. I have been aimlessly pushing Joe around Whole Foods for the past 15 minutes. He thinks his dad is friggin' losing it.

Me: You're gonna get home and have nothing but chips and Sheila's gonna be like, "Where are the milk and eggs I asked for?"

Him: Shit! I literally forgot the milk.

Me: Told ya.

Him: I may order Reid a t-shirt that says WTF on the front of it.

It was the perfect correspondence.

He always knew just what to say, even when he thought he didn't. He ALWAYS put others first and excelled in loving those around him in a unique and special way. Chip had friends all over the world and went out of his way to make time for every one of them.

When I spoke to Sheila this week, we marveled at how he was so good at so many things, but the thing he was the best at was loving. He was just so good at loving.

He loved a lot. He was full of the stuff. He loved the Patriots and the Red Sox. He loved Amazon and hugs and cold beer and ranch dressing and BLTs (crispy bacon, white toast, thankyouverymuch). He loved politics and Washington and music and dancing. He loved New Hampshire (Live Free or Die!) and Colby College and traveling. For a brief time period, he loved car bras. He loved Garth Brooks and Zac Brown Band and he could jam to Taylor Swift's 1989 album like a 12-year old girl. 

The only two things I'm aware of that he ever hated were the NY Yankees and the zoo. Which sounds all awful and "I hate puppies and babies" but he has a pretty good reason for it, so I let it slide.

He loved God and his friends and he loved his life. But what he really loved most was Sheila and Joe and Crosby. There are very few men who are brave enough to love the way Chip did (although I am proud to put Patrick in that same category). Chip always put his family first. ALWAYS. They were his first thought when he woke up and his last prayer before he went to sleep. He was a wonderful daddy and husband.

He walked alongside Sheila and lead those around him by example. He was faithful and strong and brave and taught us all about being present and grateful. He showed everyone around him how to be compassionate and vulnerable and live a meaningful life. He and Sheila didn't just sit there thinking about doing. THEY DID.

Chip gave me many gifts - my husband being chief among them. But the gift of getting to know Sheila and finding in her a like-minded, strong-voiced, soul-sister of a woman, is also hard to beat. Her strength and sense of humor have inspired me and I know that none of us will ever truly understand how she became the living, breathing answer to that eternal "how do you do it?" question, except that she just DID. She is still doing it and will continue to move ever-forward with a fortitude, grace and humility that is indeed very rare in our world. When I asked her permission to write this tribute to Chip, she responded "Of course!" and thanked me. What an incredible woman.

Last Tuesday, when I asked Chip how Sheila was doing, his response was, "She is Sheila. She is putting her head down and doing what needs to get done…and looking great while doing it. You know the type."

I watched those two deftly handle life and I thirstily and eagerly soaked up the lessons they unknowingly bestowed onto me and all those with whom they came in contact. They visited us in Memphis just weeks after Reid's diagnosis and their direct approach and can't-lose attitude got us through the following six months.

Chip had an amazing habit of sending me notes at the exact moment I needed them. Little reminders that we have to keep moving forward even when want to curl up in a ball and let life dump on us.

Buddy, we clearly have buckets of dirt being thrown on us right now and sometimes the only move we have is to keep moving forward.  Like you, I found myself asking what is the point or why a few times over the past week. Every time, I quickly realize that is a fruitless exercise and I put my head down and keep going forward. Due to the circumstances we find ourselves in, that is often the only move we have, and I have discovered that it is a perfectly acceptable move. 

Or

We did some good praying for you guys this morning. In fact, Crosby prayed so hard I had to take her outside because she was disrupting the service.

He would often just ask:

How's the kicking ass going? or 
You need to bitch about anything? or 
How's my partner in crime doing today? or 
How's shit? or
Talk to me, goose.

And before one of their respective chemo rounds, there might have been a "let's blast shit" or "veins can be a real bitch."

There are hundreds of them. Words between friends that might have otherwise been lost forever. And in these few days that have passed since we lost Chip, I'm so grateful that I never took them for granted. I'm so glad they are here and that Chip is writing this blog post with me with his kind and gentle and hilarious words.

He had moments of anxiety and fear and sadness, but even in the end, he always deflected concerns from himself and focused on others. He had a soft spot for Reid and always turned his own pain into tenderness for my son. One of the last times I saw Chip, he felt ill from chemo. He had a gray pallor, was nauseous and had a consistent cough. He said he felt pretty bad, but that was ChipSpeak for feeling AWFUL. He would never complain too much and even when it became incredibly painful, he would say things like, "I always think of my little buddy when I feel like this. I just don't know how he did it when he couldn't even tell you how bad he felt. What a hero."

And when Reid went into remission and our battle was over, but Team Kennett's was just gearing up, he never felt bitter or resentful or anything but joyful for our great news. We videotaped Reid's "No Mo' Chemo" party and Chip texted me immediately saying, "That video is just about the best damn thing I have ever seen. That confetti kind of messed with my little man, though."

He always wanted the best for us and never stopped asking about #14 (his pet name for Pat from their college football days), Elle and, of course, Reid. He loved seeing our pictures on Instagram, so on the last day of his life - in his last words to me - it was fitting that his only request of me was to,"Keep posting pictures of that boy."

I don't remember when, but somewhere along our friendship, I confided in Chip that in the months after Reid was diagnosed with Down syndrome, I would drive around aimlessly - crying and worrying and listening to Zac Brown Band's Highway 20 Ride. A song that was written about someone else's little boy, but that made me wonder about the one in my belly whom I felt I didn't know and in all honesty feared a little bit. 

It's one of those songs that has a specific meaning but can be easily transmuted to bring significance to a variety of trials and tribulations. 


I ride east every other Friday but if I had it my way
The day would not be wasted on this drive
I want so bad to hold you
Son, there's things I haven't told you…

So I'll drive
And I think about my life
And wonder why, then I slowly die inside…
…and I count the days and the miles back home to you 
on the Highway 20 ride

...so when you drive 
And the years go flying by
I hope you smile
If I ever cross your mind 
It was the pleasure of my life
And I cherished every time
And my whole world 
It begins and ends with you
On that Highway 20 ride

It was cathartic for me and I don't know why I told Chip about it, but he understood and believed in the power of music and I remember it making perfect sense to him. And from then on, every time he heard that song, he would send me a text that simply said, "Highway 20 Ride" or "Heard me some Highway 20 Ride." A simple acknowledgement about something deeper than ourselves - those moments that we cannot avoid, when all we can do is just press the gas and drive straight through to the other side.

And so now - in this very moment - I am sitting in an airport after driving three hours along Interstate 20 listening to that song on repeat. I write this as I wait to board a plane to DC, where I will end one hell of a ride by attending Chippewa's memorial service.  

This morning, as I listened and drove, I thought about my little boy and how much has changed in the two and a half years since he was in my belly. I smiled at the realization that I was on the other side of a battle I didn't even know I was capable of fighting and I cried at the irony of spending those long, hard months just waiting for things to change - waiting for my life to begin again and constantly wondering why, why, why - only to realize that my whole world began long ago when Chip introduced me to Patrick. And that it grew larger and larger as Elle and Reid came along. It was there all along and there was plenty of room for everything - the good and the bad and the in between.

And I thought about Chip and his whole world - how his too began and ended with his family. I thought about Sheila and their little girl and precious boy and how he always counted the miles back home to them. I cried and tried not to wonder why, why, why. I thought about how fast the years have flown by and I smiled through my tears as it all crossed my mind - proud to have known Chip and call him a friend. Proud to have made it to the other side in no small part because of him. It was truly the pleasure of my life and I cherished every time.

Chip once told me, "Have the courage to live. Anyone can die."

And that's exactly what he did. He lived a courageous, honorable, loving, kind and compassionate life. He lived a life that I will spend my lifetime trying to mimic. He had bad days, but he was mostly present and grateful because he knew that we are not ever promised tomorrow. He knew how important it is to live big and love loud. He knew how to do the right thing and make a real difference in this world. He knew how to have a good time and take on everything he encountered with purpose.

As Sheila so eloquently told me this week, "He would be so f-ing pissed that he died!"

Even in his death, his words and spirit live on. And because of the equal spirit of his wife and the legacy he has passed on to his children, Chip will never die - he will always be alive and well in those who knew him.

And so, I'm boarding this plane and heading back to where it all began. I miss him very much already but I will keep pushing forward. I will continue to follow his lead. 

And I'll keep posting pictures of my boy. 




2003

2003

2004

2004 "Don't Stop Believin'"

2005

2006 "Pour Some Sugar on Me"

2006

2007 "Dirt of Your Shoulder"

2009

2013

2013

2014

2014


Give 'em hell up there, Chippewa. I love you, buddy.
post signature

Thursday, January 8, 2015

Write Away


They say if you want to be a writer, then you have to write.

I've been thinking about this notion a lot lately. I've been telling Patrick that I have this overwhelming need to get it all on paper.

To get back to the page and soothe my soul with some good, old-fashioned word therapy.

I am not foolish enough to believe that I'm actually a writer. Although if you believe my resume, I earned a degree in journalism back when that was a legitimate option for a major, and subsequently received several years' worth of paychecks where my main job requirement was to write (albeit incredibly boring tripe). But still, it barely paid the bills.

Before dipping my toes into the "real" writing world, I spent an inordinate amount of my teens and early twenties writing sappy, overwrought, angsty, apologetic letters to ex-boyfriends. 

One time I wrote a 25-page, kick-ass paper on Toni Morrison's Beloved and would love to know where that is so I can go back and pat myself on the back for a job well done.

I recently ran into my sixth grade creative writing teacher and she remembered me well from the cloying poetry and exaggerated short stories that I earnestly turned in each week.

And as far back as 7-years old, I remember writing down every single curse word I'd ever heard and tucking the list safely and discreetly under my pillow each night while I slept. Our housekeeper found it once and threatened to tell my mom (it was some juicy, only-hear-it-on-the-school-bus stuff), so I had to be more cautious about my prose moving forward.

The point is, I've always loved to cuss. 

And write.

So, as often as I walk away, I just keep coming back. I've spent the last six months in deep contemplation and found myself right where I always leave off - yearning to get it all down. 

My new year's resolution - if you want to call it that - is to live a more purposeful life. For me, that means doing things that have meaning and true connectedness, instead of just going through the motions and constantly falling into the same predictable, habitual patterns.

I'm an overly-organized control freak (a bad combo) and it can be difficult for me to begin an endeavor without being one million percent prepared. I'm a little ritualistic about starting new things and everything has to be just so. 

(Thus the new blog layout - "Oh, I'm going to blog again? Well then I must revamp EVERYTHING!") 

It's a troublesome way to be and something I would like to genuinely work on changing for the future. Afterall, if you spend your whole life preparing, there is no time left for actually DOING. 

The last three years have been a spiritual journey of sorts - aided in part by prayer, meditation, Pema Chodron, and my recent discovery of kombucha - and led in full by JC himself. I am not a super-religious person, but I am a super faithful one, and I truly believe that God's got it all worked out if we will only abide. 

The problem is that we want things to be EASY. And we want to be happy and joyful and calm all the time. When things are going well, we don't mind giving the credit to Jesus or whomever we happen to believe in. But, when things start going bad - like when your kid gets cancer - those are the times we stop listening. We shut down and we conjure up a billion crazy thoughts and we FREAK OUT and we don't realize that if we can just be still and listen, then the answers will come.

So, I've been practicing stillness and calmness. I've been working on trying to connect with others even when it's hard and I don't want to. When I just want to go into a rage spiral and throw things and blame everyone else but myself. 

Part of my plan to better abide and listen and grow involves a lot less technology. We're turing off the TVs and the iPads and the iPhones. Every other day - whenever we're all together - we are going without. And on the days inbetween, we can just stick our noses in a screen and zone out and ignore each other all day. I'm all for a 50 percent success rate!

Another part of my plan is focusing on being present with everyone around me - especially my family - and to take care of my mind the same way I take care of my body.

And, so, in the brief interludes of calm and stillness that I've had so far, I kept hearing the same thing over and over again.

Write. Write. WRITE.

I briefly wondered if writing about me, me, ME could actually be purposeful or if it's really just incredibly vain. For a second I thought that I should probably rework my resolution to something along the lines of, "Stop thinking you're so awesome."

But then, I thought about it some more, and realized that it's not coming from a selfish place - it's coming from a deep desire to be accessible. To put myself out there and connect to this world and the people in it. 

I've met so many people over the past two years, and I am humbled and grateful that many of them have contacted me through this blog. A few of them have dealt with a cancer diagnosis, but most of them reached out to me after a Down syndrome diagnosis - this blog was one of the places they found while furiously Googling for answers.

In my last post, I wrote that I blog just for me. But, that simply isn't true. I do get a lot of personal fulfillment from writing, but that's just one piece of the puzzle. I think it was easier to pretend that I write only for me so that I had a layer of protection if anyone disagreed with what I had to say. Putting yourself out there can be very liberating, but it can also be very terrifying. Sometimes it makes you feel better to caveat it or cushion it in some way.

But now I know it's not about whether people agree with me or even like me. And it's not about validation. It's about being completely honest and seeing where sparks fly and connections happen.

It's about being kind and compassionate and living a meaningful life; finding my way and teaming up with others for the ride. 

A few months ago, I entered an essay contest - the winner would secure a spot at a writer's retreat in Ojai, California. It was a kind of random thing for me to do, and it came about after a moment of quiet listening. Of hearing Him say, "DO IT."

So I did it. I spoke honestly about my desire to start writing again. Part of my essay went something like this:

I hate that we are always polishing ourselves up when we're really just raw and flawed. I am no more deserving of winning a spot at this retreat than anyone else because we ALL have a story to tell. We all have our own truth.

My truth is that Down syndrome and heart defects and leukemia once terrified me. But how can I be afraid when I look at my own son?

Right now, I'm figuring out how to reconcile unequivocal joy with crushing pain. How to balance my growing inability to relate to the minutiae of life now that I've seen the bigger picture. But the REAL truth is that I'm okay. I am guarded and I am vulnerable - I am weak and I am strong. I am finding my new voice and I've realized that sometimes we need to shout out loud. And sometimes the most important things are best left unspoken. 

I was truly floored when I received an email inviting me to the retreat. But I honestly can't think of a better way to start 2015 than strengthening my voice and reigniting my love of writing with a group of women who appreciate the power of putting it all on paper.

I hope we can all find whatever it is that is meaningful to us and just DO IT. There is certainly no time like the present.

post signature
Site Meter