Come What May

It was a cold, gray, January day.  All of the other kids were in school as it was a Thursday, but Kid A had checked herself out early.  It was her 18th birthday, so she could do that now.  She climbed into her newly-leased electric car and turned on her iPod.  The passionate and emotional voices of Ewan McGregor and Nicole Kidman spilled from the sound system.  The words blasted her ears and bombarded her heart.  The song lasted the exact length of time it took her to drive from parking lot to parking lot.  She took it as a sign, like a cardinal at the window or unexplained feathers.

Sheepdog and I arrived together.  We held hands as we walked into the waiting room.  I noticed a giant eel slithering inside a 75-gallon fish tank before I even saw Kid A in the corner.  The building smelled faintly of rubbing alcohol and burning things.  We all hugged and walked over to meet with her guy.  She gave him a piece of paper that had been folded and unfolded and looked at so many times that it had the worn feel of soft leather.  They spoke to one another in the language of creative people.  Then he scanned her paper into the computer and pulled it up on the big screen.  A lone sob escaped from my throat before I could pull it back.

Seeing his familiar handwriting up there, larger than life, I was caught completely off guard.  But seeing it a few hours later, permanently inked onto the slight wrist of my oldest child, it actually felt good.  After all she had seen and experienced and lived through the past few years, it felt right.  Well, as right as a tattoo can possibly be.

"I will love you until my dying day."

“I will love you until my dying day.”

His life story will always be a part of hers.  He left his mark on her heart.  Now his handwriting is marked on her forever as well.

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

Today is the first anniversary of Braden’s death.  One whole year has gone by.  An entire year of holidays, and birthdays, and Mondays.  One whole year passed of experiences, and change, and growth.  One whole year of the regular and mundane too.  One whole year of memories made without Braden.  I feel like that is one of the worst parts.

I have thought of him so much over the past year.  Sometimes I think of him intentionally, like when I plant flowers in his memory.  I talk to him as I’m doing the work, updating him with new funny stories as well as the regular day-to-day stuff that’s been going on.  And when these plants inevitably die, I think of him again because I know he is playing a twisted joke on me.  All of my other plants thrive.  It’s just the ones that I tell him are “his” that end up brown and crispy.  I like to think that Braden enjoys our conversations so much that he is just making sure that I’ll keep checking in with him.  So I guess I’ll keep buying him new plants.  And I’m good with that.

Other times he pops into my consciousness accidentally, like when I recently came across the milk shake recipe for cancer patients that I used to make for him when his stomach could tolerate them.  It was made with protein powder and coffee and chocolate sauce and Haagen-Dazs ice cream.  It always made me so happy when he would finish one, because he was losing so much weight and what else packs on the pounds but the best ice cream on the planet?  I also find him popping into my head when I’m listening to music in the car, wondering if he got to hear that really great song before he died.  Or was he around for that game?  Or did he get to see that movie?  Or look at that blood moon?  As more and more time passes, the answer is almost always ‘no.’  Not while he was here with us on earth.

So, to officially and reverently mark the passage of one whole year without Braden, Sheepdog and the kids and I went on a short hike up the Indian Seats Trail at Sawnee Mountain this past Sunday.  When we reached the top, we found some rocks off the beaten path and we sat together as a family.  We overlooked the valley below and Sheepdog said some nice words and reminded us that Braden is happy and healthy now and we shouldn’t ask for anything more than that.  He also reminded us to be thankful for our own health and happiness and to make each day mean something.  Some of us spoke about happy memories and fun times with Braden.  Some of us weren’t able to speak at all.

There was a placard up by the Indian Seats that said mountaintops are considered sacred by Native Americans because they bring us closer to Father Sky.  I don’t know about that, but I certainly felt closer to my God and to Braden that day.  It was sacred and it was good.  Well, as good as it can be when somebody is taken away before we are ready for it.

Wish me luck for tomorrow… come what may.

Braden’s Memorial – Part One

Before Braden passed away last week he was doing the unthinkable… planning parts of his own memorial service.  He wanted to make some of the decisions so that no one else would have to.  He said it felt surreal, but he did it with an unbelievable calmness and sense of purpose.  I am still amazed.

When he asked Kid A and I to speak, we both yelled out “F*ck” in unison.  Now, I sometimes curse like an Eagles fan in a sports bar, but Kid A is not really the type, so it was kind of sweet that we both had the exact same reaction to his request.  Nevertheless, we told Braden that we were honored that he wanted us to do it and we would try our very best.

Last week was a whirlwind of tears and heartbreak and sadness for all of us.  My biggest concern was that neither Kid A nor myself would be able to make words come out of our mouths that would be loud or coherent enough to be heard over our crying.  And it is less than glamorous to have snot bubbles when you are speaking in front of a bunch of people.  But we still wanted to say something meaningful that gave honor to Braden’s memory, so we tried to make a plan.

Little did I know that Kid A’s plan involved practicing full stage makeup on the morning of the service for her part as the wolf in her ballet studio’s production of Peter and the Wolf, which is happening next weekend.  Two hours before we were leaving she came out of her room looking like this:

What are YOU wearing to the memorial service?

Fortunately, the black makeup all washed off.  When we got to the service we tried not to talk to anybody who might set us off crying.  We tried not to look at the happy pictures of Braden on the screen or leaning on the easel.  We didn’t read the Fitzgerald quote about courage on the back of the memory card that was perfectly suited for Braden.  But we listened as the guitarist played the music he loved.  And we sat in the high school auditorium seats and smiled and cried along with everyone else as his Grandad, Walt, his godmother, Lisa, and his friends, Jared, Emily, and Chris all spoke beautifully and from their hearts.  And then we stood up and walked to the podium together.

Kid A broke the tension by telling everyone that when Braden asked her to speak, she said, “F, no!”  Yes, my daughter pseudo-cursed at her ex-boyfriend’s memorial service and I could not have been more proud.  It was charming and fitting and Braden surely laughed a big belly laugh when he heard it.  Then she read a short passage that she wrote about Braden going off to college.  It was incredibly perfect for his memorial service, even though she wrote it months before he was diagnosed.  She was calm and composed and she got through the whole thing.  I asked her if it would be okay if I shared it here because it is so beautiful, and she said yes…

There once was a bird, brown – the color of hickory wood and milk
chocolate and worn leather, with wings too big for its body. It sang songs at
early hours of the morning and late at night, but never after sunrise, when
the other birds would join in. This brown bird liked to feel like it was the
only one up in the trees, the only one on the block, the only one on the
whole earth, when it sang.
It lived in the branches that rattled against our bedroom window
come summer nights, storms crashing through the sky like clockwork and
gone as quickly as they appeared. We would wake up every time it began to
sing, and though it wasn’t the prettiest birdsong we’d heard by any means,
something about what it projected had meaning, and we all knew we were
meant to listen. The brown bird sang to us about love and loss and
heartache and missing and empathy and pure joy, and about excitement
and fear and safety and comfort and family and friendship.
His big wings would have made another bird look out of proportion,
but they suited the brown bird just fine. He wouldn’t have been himself
without them, because besides singing, that bird loved to fly. He’d be gone
for days at a time, and the sticky summer air was empty without his song.
The night before a long trip, he would sing to us about all the places he’d be
going, and about how he was really just biding time in the branches outside
our window. Soon he’d leave for good. The next morning, a flash of
caramel in the waking sky would be our goodbye.
One spring, the brown bird sang for us one last time. The song wasn’t
sad, but it brought tears to our eyes. We had that bird on borrowed time,
and he had taught us about life, but we couldn’t hold him back any longer.
We listened to him sing through the night, and when the sun came up he
held a final note and was off.
We all loved that brown bird, and he loved us, but his wings were too
big for his body and they were made that way so he could fly away.
 

Then it was my turn to speak, so I wiped away my snot bubbles and held on to the podium with both hands.  Next time, I will share with you what I said to honor Braden.  Until then,

Wish me luck for tomorrow…

Remembering Braden

You know the feeling when something bad is coming and the thought of it makes you really sad?  It is called anticipatory grief.  When you are experiencing anticipatory grief, you do everything that you can to prepare yourself, and you begin to think that you will be able to handle the bad thing when it comes.  Except that when the bad thing actually happens, you feel like you got punched in the face and then kicked in the stomach, over and over and over again.  In reality, there is no way to be prepared at all.

I had a dream early this morning that I was falling down a deep hole.  I dropped and dropped for what seemed like miles, clawing at the dirt as I flew down desperately trying to get purchase on the wall.  After a very long time, I hit the ground.  In my dream, I screamed from the utter and complete agony.  My bones were broken and my head was throbbing and spinning.  I hurt so very much all over.  And then I woke up.

But that was when the pain became really intense.  Because I remembered that Braden was gone.

Braden Dean Smith died peacefully at home in the early hours of Monday, May 13, 2013, surrounded by his family.  His fourteen-month long fight with leukemia had left his body and mind exhausted and worn, far beyond his mere nineteen years.  He tackled his illness with bravery and intensity, but the disease was simply insurmountable in the end.  He is survived by his mother, Stacy, and his father, Steve, as well as five younger brothers and sisters… Chloe, Maddie, Cameron, Rachel and Eric.  He is also loved by countless family members and friends who consider ourselves so lucky to have had him in our lives.

I am so very grateful that Braden is no longer suffering, even while we are left behind to suffer in his absence.

Braden was exceptional.  He had book and street smarts.  He was athletic.  He was funny.  He was passionate… about sports and politics and religion.  And he was also compassionate and caring and forgiving.  He was a great friend and a doting boyfriend.  He wanted to go to college and get married and have a family.  He wanted the good life.

But even when he was in the middle of the hardest battle he would ever fight, he was always looking out for those around him.  He was kind enough to indulge my anticipatory grief and go to lunch a few times with me over the last few weeks.  We talked about everything and nothing, fears and regrets, hopes and dreams.  It was inspiring to me and those conversations, as well as many others we had together, are memories I will always cherish.

I am so very sad right now.  My sadness comes in waves.  I am sad for the profound loss that his family is enduring.  A mother and father lost a son.  Siblings lost their big brother.  My daughter lost her first true love.  I am sad that a young man with so much potential had to suffer and die before his life ever really got started.  I am sad over the loss of my friend.  My grief is no longer anticipatory… it is here.

I know that it is healthy and normal to be sad and to grieve, especially over the loss of someone so young.  There is no rule book or guide to follow, but it is very important to seek counseling or fellowship immediately following the death of a loved one.  Fortunately, we have each other to lean on, confide in, reminisce with.  We need to remember Braden, talk about him, share stories about him.  It will help us and it will make Braden happy when we reach out and help each other.  Do it to honor him.

These pictures are from one of my favorite days with our whole family, including Braden, after he had been diagnosed and had gone through a transplant.  He was getting his energy back and it was a nice day, so we went over to Webb Bridge Park to play on the playground and throw around the football.  It was pure and happy and good.  Remembering that day will always make me smile.

It will not bring him back, but it will keep him eternally alive in our hearts and our memories.

I sure do miss you already, Kid.  Until we meet again…

Wish me luck for tomorrow…

The Other Shoe

There is an old tale about a weary traveller who stayed for some time at an inn. His room was just below that of a man who worked nights. When that man would come back to the inn after his shift was completed, he would ready himself for bed, starting with the absentminded removal of one shoe. It fell to the floor with a loud thud, waking the sleeping traveller below. Having been startled, the traveller would wait for the other shoe to drop before he would allow himself to fall back into deep slumber. But the upstairs man had remembered by then that there was someone sleeping below him, so he carefully removed his other shoe and placed it on the ground with nary a sound. Eventually the frustrated and impatient traveller would yell out, “For goodness’ sake, would you just drop the other shoe already!?!”

Years ago I was awoken by the “thump” of a falling shoe. It is a long story – one not meant to be told right now – but know my sincerity when I say that I surely didn’t expect to contemplate a bare foot just then. I was distracted with the day-to-day of working and mommy-ing and daughter-ing and sister-ing and wife-ing and house-running that I did not see the signs. Sometimes you just don’t. The shoe just falls.

Afterwards, I felt uneasy. Other things in my life suffered neglect because I was always watching and waiting for that other shoe to drop. But life doesn’t always happen in the way you hope or plan or will it to. Some things happen without rhyme or reason or logic or order. I learned to focus again over time, without always looking over my shoulder for a black cloud or a bad sign or some warning for some unnamed, unknown thing that may or may not ever happen to me. Day by day I slowly moved on and I began to participate instead of just letting life happen to me.

In my mind, the greatest thing about being a human being is what you can learn from relationships and what you can learn from experiences. Not just your own, either, but yours, mine and theirs too. If you truly open your heart and mind to people and adventures then you can learn all sorts of things that have the potential to help you evolve. I’m certainly not always successful, but I do try to pay attention to the lessons that are presented to me along my way.

One of the things I have figured out is that many shoes will likely fall throughout my life. Some I will anticipate, but others will startle me out of a deep sleep. And when they do, I will continue to try to face each challenge with strength and courage and, of course, humor.

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

He was getting stronger and healthier. He was gaining weight and an appetite. He was running and biking. His freckles came back out. His hair started to grow back. He could drive again. He was throwing around the idea of starting college in January because the doctors said it might be an option.

Kid A with Braden before Homecoming in October

Then, last Wednesday, another shoe just dropped. Braden’s leukemia came back.

He started chemotherapy on Monday. We will celebrate his nineteenth birthday next week.

It is scary and uncertain and my instinct is to wait and listen for the other shoe to drop before I can go back to sleep. I want to hit stuff and I want throw things and I want to curl up in the fetal position and cry. I physically ache for Braden and his mom and dad and sisters and brothers. It hurts so very much to watch as Kid A lives out this experience. I want to yell out, “Just drop the other shoe already!” And I will.

But I (hope that I have) learned which behaviors are effective and which ones are futile, so I will go back to being strong and believing and praying and having courage. I will do my best to uplift him and his family and, of course, Kid A, as they ride this crazy roller coaster of cancer. And this time I will remind myself that not all shoes come in pairs. Or I will remember that sometimes the upstairs man will lay them down with nary a sound.

Here’s hoping that life’s shoes will be more pretty Louboutins than ugly rubber boots, but I will make room in my closet for all of them.

Wish me luck for tomorrow…

What’s Up? Nothing Much… Got Leukemia.

Last summer Kid A began dating a boy she had become friends with at school.  She told me all of these nice things about him first (too good to be true?) and then she broke the news to me that he was going to be a senior and was almost 18-years old (she was 15 and starting her sophomore year at the time).  Immediately I had a flashback to my high school days and being asked out by older boys while wearing my catholic school girl uniform (it was mandatory; I wasn’t just being all slutty) and the warning sirens went off in my head.  But knowing very well what happens when you tell a teenage girl that she can not do something, I decided to take a different tack.  I told Kid A that it was fine that they dated, as long as she brought him to our house so we could get to know him.  So she did.  A lot.

It turns out that Kid A was right about the boyfriend being a great kid.  He is smart, witty, a little bit sarcastic, a lot cynical, well-read, comfortable around adults, and he has street smarts too (he lived in Washington, D.C. with his dad for a while).  He was on the cross country team at school and he held a part-time job waiting tables at a restaurant.  Plus, he listens to good rock music and not that odd, hipster stuff by Lights or Meg & Dia.  He is just the right amount of scared of Sheepdog and he is always respectful of our family and our rules.  He plays with Kids B – E and he rarely seems to get sick of them (I don’t get it because I get sick of them all the time).  Most importantly, he is very respectful and sweet to our daughter.

So time has passed and they go out on dates and hang out here and talk and text and have continued to build their relationship.  They have had mostly ups, but they’ve experienced some downs too.  It is pretty amazing to watch both of them handling a high school relationship with such maturity.

Then last Thursday, the boyfriend (although technically he is now her manfriend, as he turned 18 last November) was admitted into the hospital for suspected epiglottitis (an inflammation of the epiglottis, which is the flap that covers the windpipe during swallowing).  While there, his doctors ran a bunch of tests.  By Friday he was in the ICU, where he was diagnosed with leukemia.  He was then transferred to the Bone Marrow Transplant Unit.  He shaved his head on Monday and started chemotherapy Tuesday afternoon.  It has been a whirlwind.  I really can’t believe it has only been a week since his diagnosis.

I am in shock.  Sad.  Scared.  Heartbroken.  Worried.  Angry.  Frustrated because I have no control.  Studying to learn more about the medicine.  Yearning to make it all better.

Stupid cancer.

Then I look at him.  I am in awe of his strength, even in his vulnerable moments.  My heavy heart gets a little bit lighter every time I hear him make a joke or laugh about his disease, because it takes a very strong person to laugh in the face of adversity.  Everyone knows it’s not really funny, but what else is supposed to take down the elephant in the room that makes its presence known every few seconds with a click-click as the poison gets pumped directly into his heart.  Kids should never have to contemplate their own mortality.  Sarcastic optimism really is the best medicine in my book.  That’s how you face down a monster.

News of Manfriend’s leukemia is now starting to reach people in the community.  He’s getting a ton of friend requests from people on Facebook.  He gets texts and phone calls and cards and visitors and cancer presents (DVDs, video games, hats, warm socks… all excellent gifts) every day.  People want to reach out and show their support and let him and his family know that they care and they want to help.

Some people know all too well what this disease can do to people’s lives.  But others have been lucky enough to never have been touched by the clammy hand of cancer themselves.  It is most interesting to see how people act around someone who is sick.  Some say or write just the right things.  Some are extra nice.  Some do the nervous talking thing.  Some are cautious.  Some are the same as they ever were.  Manfriend seems to be responding to everyone with a natural extension of his already sardonic teenage personality and I think it is going to serve him very well through the inevitable ups and downs of his recovery.

A friend came by the unit to see him the other day.  When he knocked and entered the room he saw his sick friend wearing a gown, lying in a hospital bed, hooked up to tubes and monitors and machines.  Seeming to gloss over the unmistakable, the friend simply asked, “What’s up?”

Ever the smart-aleck, Manfriend responded, “Nothing much… got leukemia.”

Yeah, I think he’s doing just fine.

Wish me luck for tomorrow (and please keep the manfriend and his family in your prayers)…