Help

That's all he said.

No question mark. But that's what it was. Questions spilling from his soul, from that place that got split open and made raw.

How do I do this? How do I keep breathing while she's dying right in front of me? What do I do first? Last? Today? How do I make time stop? Why is this happening? Why her? Why not me? How? Why? What?

Help.

Spend every moment with her.
Accept help from everyone.
Be selfish of your time with her.
Devour it.
Everything else and everyone else can and will and should wait.
Take pictures. Videos. Record her voice.
Plan for the end.
Talk about it so you know exactly what she wants. Write it down. Write it all down. Through the tears. Write it down.


Seventeen

By the time the story hits my fingers it’s a roaring waterfall of words I cannot stop. This one is about you, looking up at him. Just before he died. It was his last race before the cancer returned. You look so small. Him, so big.

You fill doorways now. Your voice fills rooms. Your laughter fills the hearts of those who miss him and love you. Taller than even your grandfather, you are no longer a little boy looking up.

You turn seventeen this month. I am asked what you’d like for gifts, and I fight giving the answer that’s always in my heart—your father. Gift cards and games seem poor substitutes, yet that’s all you say you want. Or a sword. You’re practical like that.

I read an article yesterday about a neuroscientist’s research that showed autistics don’t lack empathy; in fact they feel more than others. They experience the world as a sensorial overload, taking in too much too soon. I cannot think of a better way to describe your sensitivity to the emotions (and information) around you, the people you love, and how you care for others. The way you just know things without ever letting on; it’s always left me dumbfounded.

You notice things so many people miss. I adore your texts telling me what you see on your daily commute. I hope I still get those no matter how old we get nor how far apart we live from one another.

Happy Birthday, bud. You truly are a gift and an amazing kid. I know teenagers get a bad rap from a lot of people, but I really do like mine. You make my world and the world in general a better place.

Love,

Mom

Silver Linings

I'm writing in my head again. I write there a lot feels like. The editing process is easier. Getting it to paper—not so much.

I'm writing about being out of people. A person I don't know, but know, but have never met, whose father I knew, but didn't know and had never met—she's recently found herself all out of people.

And that's the silver lining.

And I wonder if my own daughter, who started burying her people before you're "supposed to" will be out of people when she's still so young. And will a person she's never met be moved to wonder what it's like to be out of people.

The tears don't stop this morning. They started and won't quit. Out of people. In a city filled with so many you feel them suck your air and eat your soul. No more people.

That's her silver lining.

Why I Care So Much About HPV

Some of you might know why I started blogging nine years ago; most of you probably have no idea. Teaser: HPV was involved. And children. And death.

A brief history:
In the spring of 1996 a group of women formed a listserv for mothers with due dates in December of 1996. I joined that group along with about 250 other women around the world.

As you all know, online communities are a powerful thing. Our group dwindled in size over the years, but we still hover around 30-40 members. We've met in person many times, had reunions with our families, spa weekends with each other, attended weddings and funerals.

In early 2004 one of our moms from the group started a blog. A handful of us joined her in starting our own blogs. Two of us have remained consistently active bloggers since then. The original mom has not.

Her blog was started as part memoir and part update for those of us in the far reaches of the world who couldn't be with her as she lived out her final days with cervical cancer.

Her son and my son are the same age. They are both children who have lost parents to cancer. One of those cancers now has a vaccine. Vaccinating my children increases the odds a child won't lose a parent to cancer.

Dropping Stones

Waterproof mascara was the good idea I had heading into today. The dark eyeliner beneath was not. Sunglasses and lipstick. Why I ever stray from that simple rule is beyond me.

It turns out that holding a blow dryer pointed at your face in hopes of drying the tears as they come does nothing for your tears and horrible things for your already-dry hair. The end result is a wet, puffy face and scarecrow hair. This makes it hard to "blend" at parties.

Parties. That's what started this. Peanut had her birthday party today. Fifteen. She's turning fifteen.

And just like her past four birthdays, he's not here. And I can't do a damn thing about that. I can't resurrect him for her or for her brother or for me or for anyone. And every birthday I think it will get easier and it just doesn't. Because he's still not here to see his daughter grow up. And she's still growing up without her father who loved her so fucking much.

Fifteen. Another stone we dropped here along this mile we travel. Us without him. Us together. Us changed.

That Day: Three Years

I don't know if I'll post Thursday. It will be three years that day. Three years since the children and I and our friend gathered around Bob's bed and said goodbye.

Three years.

I can't explain that time. The three years.

one more time

I could tell you how many days it's been (1,094 as of right now), but it doesn't feel like days. And this hasn't been a completely linear journey.

I could tell you how many hours—26,256, roughly, as I can't bring myself to pull out the death certificate and do that exact math.

And it doesn't feel like the hours, either. Unless I can write a defining moment from each hour on a post-in and stick it to an enormous wall. There would be spirals of time.

And then the tracks. They aren't marked equally in hours or days.

Going

Some tracks of time have moved faster than others. Some stopped altogether. He stopped that day. Dead. Stopped. Part of me stopped that day, too. Same track. How could it not? Twenty-one years together, you're going to leave some of yourself on that track.

The rest of me started on another track, moving at my own pace—still have some of the same luggage (a carry-on, I think; added a new bag or two along the way, boy did I ever).

And the kids kept going. They kept me going. Tracks of their own, but merging in and out with mine.

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Grief is a funny thing; not stages like we've been told—it goes in circles. It wraps around itself. It repeats sometimes. It skips parts. Jumps ahead. Comes back. Asshole will drop you down. And then you won't see it for weeks, it seems. Or maybe that track runs parallel in a way that gets hidden behind the bushes once in a while so you see the scenery on other stretches life brings past.

Maybe.

But I don't know about Thursday.

I did give up predicting things three years ago; I did not, however, give up.

The sayers of nay, and oh how they say, were so wrong that day and many a day and that is okay. Fuck 'em.

It's all downhill, until you look up.

It's all downhill until you look up, you know. That's why I bought the house at the bottom; I like to be able to see where I'm headed.

Yesterday Forever Ago: The Wave

It's been almost three years since Bob died, and it feels like he was just here.

And it feels like he's been gone forever.

Every year, every day, it's different. And I miss him.

I remember in those first months after Bob died, widows and widowers more years into this journey seeming like seasoned pros to me, so wise, but they always had this thread of commonality—there remained this instant access to the raw emotion of their loss. Years out. YEARS.

It didn't matter if they were happily remarried, had remained single, or what their relationship status was, so much as it did that they had this loss and this journey and it was part of them.

It doesn't mean grief defines you in a negative way, per se—though I guess it can. But just as any tragedy can be faced with courage, losing your partner gets incorporated into who you are in some way. It's never NOT a part of you. You don't "get over it."

What I find myself doing is learning where my loss fits, how to breathe through the waves of grief—that come less often, but still do come and deserve to be honored—and what it means to have this duality of love lost and love found living together in my heart so comfortably—I never expected that would be the case, by the way (love again? Ha!)

My life feels very chaptered as I reflect, and I'm thankful for the ability to see how this next chapter holds hope, love, dreams, and possibility. I have been an incredibly fortunate woman.

And still, as this month arrived, I find myself weeping, sobbing, missing. So I make space and learn, keep learning that it's okay to need this time and this space to ride this wave.

 

Green Hills Every Time

It's April. You probably knew that. It's a hard month to forget, starting with the fools on the first, but mostly because the green makes me remember.

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It starts in March, really. And I remember driving. 

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Bob and I would wind our way through the hills to chemo, or the emergency room, or appointments, and the green would make me feel safe. 

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His initial diagnosis was in March of 2009. And that green—I hung onto it with white knuckles.

Out the Car Window

It was my meditation as we would drive our familiar route from home to Kaiser. Then home to Stanford. Then home to whichever hospital could get us in the soonest. It was my meditation to look out at those green hills at just breathe. Take pictures. Be still. And breathe.

He died three years ago this April, and I still remember driving those green hills that spring. To the airports for trips to carry me away, to the family and friends who just let us be us. 

April hills

And as I wind my way from the place we now call home, back to the ranch, I am folded into those green hills again, each year, each spring, and I remember feeling safe, and knowing I would be okay. I will be okay. I am okay.

So I apologize to the line of impatient people who couldn't understand why I was only doing 5-15 mph over the posted speed limit on my way to the ranch this afternoon when y'all were in a rush to get home from work on the backroads. You were in my Happy Place, and y'all need to breathe. In through the nose. Out through the mouth. Some day those hills might save you, too. Until then, just slow the fuck down. I've seen enough accidents on those roads to last me. Nothing is worth that kind of hurry. 

Gone. She's Gone.

And not because it was God's fucking plan as some douchecanoe felt obliged to offer up in a "comforting" comment to her husband on her blog, and not so she could now find peace with Jesus.

Cancer.

Or what do I know. I'm just a bunch of matter on a planet, but I can HONESTLY say that anybody who feels obligated to comfort someone with that sentiment doesn't understand the meaning of comfort. Doesn't understand the best place for your loved one is here. Now. That you will not feel peace for some time, so you cannot fathom your loved one's peace or lack thereof.

You just want to remember how to breathe without telling yourself if it's time to exhale or inhale and why are there only four sympathy cards on this planet that you'll be receiving in duplicate, then triplicate, and then not opening at all along with the rest of the mail.

Let's skip guessing what was planned for this occasion. I think your god will probably be okay with you offering comfort and not worrying your pretty little head about the plans. Mkay? Mkay.

Suicide Is Not Selfish: Listen To What I'm Saying

Wut?

Is dying from cancer selfish? Did my husband not try hard enough to get better from the disease that afflicted him? Did the doctors not try all of the treatments available to him to cure him? His death from cancer wasn't because he was selfish.

And someone who dies because of suicide is not selfish. Depression is a disease. It is not a choice. Treatment can be complicated. It is not a matter of willpower to just "get over it." (More than 90% of the people who die from suicide has risk factors related to depression or other mental disorder, or a substance-abuse disorder—often combined with a mental disorder.)¹

So, when I see remarks about suicide being a selfish act, I call bullshit. Loudly. 

Do the grieving have a right to be angry with the loss of their loved ones? Fuck yes! Depression, just like cancer, robs us of too many too soon

And unlike cancer, mental illness is still taboo to discuss. It's hard to find treatment. And the stigma of telling people you struggle with a mental illness will give you pause in the workplace, with friends, and with family members who don't understand that it IS a disease and not a choice, that you are not weak, that you would love nothing more than to "get over it."

When was the last time you were asked to donate to a mental health cause? How many colored ribbon magnets do you see on cars for depression or suicide? 

How many do you see for cancer? Which types? What colors? I bet you can name at least three colors and what cancers they represent, and another few ribbons for other causes, none of which relate to mental health.

Nowhere in the list of risk factors for suicide will you find selfishness. Shock. Awe. Or, just logical if you stop and think about it. 

 

If you are in a crisis and need help right away:

Call this toll-free number, available 24 hours a day, every day: 1-800-273-TALK (8255). You will reach the National Suicide Prevention Lifeline, a service available to anyone. You may call for yourself or for someone you care about. All calls are confidential.

Things That Are Just Wrong: A Short List

I have opinions. This is my blog. I am going to share them now. (If you're one of those easily offended or sensitive types, you should sit or something.)

Things that are just wrong:


  • people who don't eat the rind of good cheese—people have no idea what they're missing;

  • jockstraps that show through sheer football pants—I'm blaming you, Nike;

  • Mitt Romney thinking that the death of my late husband makes my children view themselves as entitled victims because they receive survivor benefits.


I have been incredibly quiet here on my blog about politics this presidential election, but I'm going to speak up right now. Why? This is just too personal for me.

Yes, it has been personal on many other occasions, but I have addressed those elsewhere, and I felt that was sufficient, and I would deal with that at the ballots in November.

This? It's too much.

I collected my first legitimate, taxes-paid, paycheck when I was barely old enough to sign my name in cursive. I know this because I have the Social Security card to prove it. Back in the day you didn't get your Social Security card at birth; you got it when you worked for the first time or needed it for identification. That paycheck included money withheld for Social Security. I believe I was somewhere around eight years old. I worked for my father doing inventory for a family business, counting parts, something a child could do. I earned minimum wage.

By the time I was in my teens, I worked part-time after school and longer hours in the summers, again paying into the "system." I filed my taxes every year.

When I was in my early 20s, I got married to Bob, who had also been working since he was a teenager. He too paid into Social Security and paid his taxes. We had two kids. I became a stay-at-home mom when I was pregnant with our second child, working part-time and freelance, both of us still paying taxes and contributing to Social Security.

Then Bob died of cancer.

Guess what we, as the survivors of his death are entitled to?

Life without him. Sweet benefit, huh? Yeah, my kids think so, too.

Also, after working and paying into Social Security benefits for the requisite period of time, based on a complex calculation, our family receives survivor benefits for a period of time to allow us to make up for the wages lost due to his death.

We are not lazy.

We do pay federal income tax, actually, contrary to what Mitt Romney would like you to think.

I do not expect Mitt Romney to worry about me, so it's okay that he's agreed not to. Why? Because he has no idea what it is like to be me. He has never lived in my shoes. He has no empathy for me. He would have no idea how to worry about me. I'll handle the worry. We've done just fine without him so far, thank you very much.

Now, do I feel that my family is entitled to the benefits my husband and I paid for over the years we worked? Hell yes! I would feel that way whether we had paid for those benefits through a private entity or Social Security. That's why we have Social Security. It's also why my husband and I had life insurance, which we paid for every month. Did I feel entitled to receive that benefit? Yes, I did. We paid for it.

What I would most enjoy right now is for Mitt Romney to explain to my children how it is that they are lazy, entitled, and/or victims whom he will not be worrying about because their father died of cancer. Because while I do not need him to worry about me, my children might want to know why someone who's running for president of this nation would dare to make such a bold statement about his future constituents.

My Son Is Quite Able: Riding BART

When my son was in fifth grade he was asked to leave his private school because of his disabilities. In the middle of a school day. With no warning. With no plan. Some of you will find this deplorable. Some of you will think they had a right to ask him to leave because they were a private school.

After an investigation by the Department of Justice into whether or not the school violated my son's civil rights under Title III of the American's with Disabilities Act, the case was closed without a finding.

What I do know is that today, on his first day at a school he selected, my fifteen-year-old son, is a better person for having been asked to leave that school.

Why?

That day was a turning point for our family. From the day the school sent my son home he started homeschooling.

We didn't know if it would be a temporary situation or not, but we knew it was the right thing to do for him at that time. It turned out to be the best thing we could have done to lessen the stress he was experiencing there—stress we didn't fully appreciate until he was outside the situation.

Toward the end of the lengthy and often ugly legal process with the school, before the ruling came from the DOJ, my husband was diagnosed with cancer. Since we were homeschooling, my son had the gift of spending my husband's final year of life at home with him. We had no way of knowing that was how life was going to play out, but it worked out that way, and it was a blessing. I am thankful every day that somebody perceived my son's disabilities the way they did or he would have missed that time with his father. And I am so glad his father got that time to see his son happy.

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Making the choice to defend our son's rights was a process that brought us closer together as a family. We regularly checked in with each other and with our son to make sure we wanted to continue the legal process. As soon as one person wanted to stop, we agreed we were done. Fortunately, the DOJ took over the case, and it was out of our hands. We never intended to pursue a civil case. Our goal was to make things right for other children for the future. We didn't see a civil case achieving that goal. Our daughter was an amazing witness when the DOJ came to our home to interview us. She was fiercely protective of the truth and her brother, which hasn't always been the case in their relationship—having a sibling with special needs can be stressful sometimes, but she wanted to make sure it was clear to the attorney just what had and had not happened since she was actually present in his classroom.

And today, on his first day of school, my son rode BART by himself. He also packed his own lunch, got himself dressed in the clothes that he washed, and ready for school on time. He attended his brand new school for seven and a half hours. He was calm. He was confident. He had a great day at school, and he can't wait to go back tomorrow.

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If you didn't know he had Tourette's, you'd be hard-pressed to tell. In fact, even the people who live with him have trouble spotting his very rare tics. As for the Asperger's, well, I just think of that as who he is. I don't even know that I'd be able to separate him from the things that would define his position on the spectrum, nor would I want to. After fifteen years of him being him, I am so accustomed to who he is and how he works, that I rather like his wiring. Our world needs him. Somebody else's oversight of his awesomeness on that day in October of his tenth year was so very clearly a lucky day for the rest of us. They missed out on having the opportunity to watch him grow and learn these past five years. We didn't.

Guess what, world: he is able! Very, very able. Don't let that slip past you this time or y'all might miss out on another five years of watching him in action.

 

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I love you, Bug. I wish Daddy were here to see this. He'd be so incredibly proud of you.

Teetering Or Tottering

It's getting closer. The day. I don't like that there's A Day. The Day. I don't like that there's a day that Bob died.

I don't like that it looms large on the horizon. I don't like that it carries a weight or significance greater than other days, and I can't decide if I have the power to undo that or if I should.

This will be the second trip around the sun without him. It was a different trip this time around. It was different for me. It was different for the kids. Some parts were easier. Some parts were deeper, heavier, and not what I expected. Every part was new and will always be new, I guess. It will be new because I have never done this before. I have never been a widow in Year 2, going on Year 3. Shit, I hope it will always be new. I don't want to be a young widow again. Once has been plenty. I'll settle for one version of that t-shirt.

So, I'm still trying to figure out how I want this Day to be for me and for the kids. I know I can't define it for them. I don't want to do that for them. I want it to be what they need it to be. I also want it to be what I need it to be. Hopefully, those two things will mesh together into something similar. Hopefully, I can be present enough for them and not overwhelmed by my own grief. Thankfully, I have a partner who loves us all in a way that gives us room to grieve when we need to and how we need to. We are truly blessed. He is incredibly selfless when it comes to his family, and we are his family.

Until the 18th, I'll be riding the roller coaster of not knowing, which is okay. I'm going to let my intuition guide me on this one. I have definitely learned that grieving isn't about doing what somebody else thinks we're supposed to do. And it's not about stages. If anything, it's fluid. So, I'll ride the wave and see where I end up. Maybe it will be a peaceful day; maybe I'll end up fetal on the shower floor. Whatever happens, it will be how it's supposed to be, and that's okay.

(Not OSHA Approved) #casabesttogether

Life: It's not OSHA approved.

 

Advice To The Newly Widowed: My .02

As I look back on the past nineteen months, I feel like I owe it to the newly widowed out there to share what I have learned. In no particular order, please know this:

  • Make friends with your shower floor and the car. You will cry there often. Or I did. You'll find a place. We all seem to. I still cry. I will always cry. I cry a little less now.
  • Get a lot of copies of that death certificate. Carry at least one with you everywhere you go in the first few months.
  • Learn to say no when you need a break.
  • Learn to say yes when you need help.
  • Get out of the house. I don't care if it's to go to the mailbox in your filthy sweatpants that you've been wearing for a week straight.
  • It's not too soon.
  • It's not too late.
  • You will be okay. Really.
  • The only person who knows how you should be grieving is YOU.
  • Cry when you cry.
  • Laugh when you laugh.
  • It is okay to date.
  • It is okay to not date.
  • It is okay to continue to wear your wedding band. Or not.
  • You can go through his/her things when YOU are ready.
  • People love you.
  • Some of your friends and family understand what you are going through.
  • Some of your friends and family do not understand.
  • Lean on the people who understand.
  • Grief doesn't have a timeline.
  • The holidays can be however you need them to be, look however you want them to look.
  • The holidays will be hard no matter how you change them up. They just will. Plan for this suckage.
  • You do not have to visit the cemetery. You can if you want.
  • You have permission to grieve in the way that works best for you.
  • Grief can be physically painful. I'm not sure why this gets left out of so much information. It can hurt like a mother fucker.
  • Grief can be sneaky. I have been struck down to my knees in the most inopportune places and the worst possible times. You can't prepare for it. Roll with it if you can. Know that you are not alone. Pack tissues or handkerchiefs. You will need them. Often.

For more advice on what to do in those early days, practical advice, check out this post by fellow widow, White Elephant In The Room, called A Widow's Primer. It is an excellent source of what you need to know and do in those first days, hours, months. She speaks the truth.

Mixed Bags: Grieving And Giving Thanks

This Thanksgiving was filled with so much for which I am thankful. I have an incredible family, love an amazing man, and live in a beautiful part of the world. We are healthy and our needs are few.

Yet, as with every milestone, this holiday was marked with that grey cloud of grief and what is missing. Bug excused himself to his room for bit before the pie was served because he was missing his dad. Peanut needed extra hugs and love tonight after we'd gone to bed. I had a long cry when we finally made it to bed.

I'm resolved to think that there will always be a sense that part of us isn't here. Part of our whole is missing. As much as most of my days feel normal, on these kinds of days, the hole feels marked. There is somebody missing at the table. I hate that gaping hole. I don't feel very thankful for that hole.

I do feel thankful for the children left behind who remind me how wonderful our time together was. It is an honor to be their mother and watch them become young adults.

I do feel thankful for the man who loves me now, that he cares deeply about supporting me and my children through our grief. He is a blessing I cannot even begin to explain, and I tell him every chance I get how glad I am that I found him. (I had to weed through a LOT of kayakers and campers to find him, people!)

This life of walking with one foot on each path continues. I just wish Mr. Louboutin would make the appropriate pair of shoes for the journey. One grief stiletto. One new-love stiletto. Or maybe boots. Something over-the-knee would be nice, with a zipper up the back like he used to do. Mmmm...dreams.

Day 10 & Day 11 Operation Eleanor

I did a thing. I did not write about it in a timely fashion. Oops.

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Rock Band was our family game. Bob played drums. Bug played guitar. I sang. Peanut hovered, sometimes she sang, sometimes she'd play guitar, too. It was really our way to connect with Bug. I haven't played much since Bob died. Last night, I played. We played with Bug.

Today, new fears, new challenges. First, some coffee.

Day 9: Operation Eleanor - Sit With Me

As today was nearing the end, I thought maybe there just wasn't a fear I needed to face. I ran through a list I've been keeping of brainstormed ideas and nothing piqued my interest, much less pulled at me in the way fears do.

Then I curled up in bed and tears came streaming down my cheeks and I knew where I needed to go and what I needed to do. I climbed back out of bed and headed to the living room, curled up in Bob's La-Z-Boy chair and watched stand-up on Comedy Central with Bug. I needed to sit there, in Bob's chair. I needed to be in that space with my son. I needed to sit in the quiet of the night, just the two of us. As much as I would have rather stayed tucked into my bed, wrapped in my boyfriend's arms, crying, that wasn't going to get me over this hump. That wasn't going to rip off this bandaid. 

As I rocked, Bug played a computer game, and together we laughed as we watched Michael Ian Black, Michael Showalter, and David Wain work their magic. That familiar leather against my skin wasn't as scary as I though it would be. In fact, I felt a sense of peace. Maybe that place that was always his can gradually become someplace I feel comfortable.

Tiny steps; sitting, one night at a time.

laughter heals

Day 6: Operation Eleanor - Letting Go

Today I let go—of a house that was our home, but will now be somebody else's and a friendship that once carried us each through difficult times, but has changed into something I no longer recognize.

It does feel good to give someone a fresh start in our house. Choosing the right person took time. Getting the house ready took time. It's time. It's scary as fuck, but it is time.

It doesn't feel so hot to say goodbye to a friendship. Feels pretty shitty, actually.

It feels like the right time to let go. It was time to walk away.

Walking Away