Thursday, June 25, 2015

Small Acts of Kindness

When my husband was diagnosed with testicular cancer three weeks ago, it felt like a freight train had run over our feet. Imagine how close it was to run over our feet and how it would rock your body as it raced past. And how you’d feel like you had escaped death but that your feet are still mangled beyond repair. That’s how it feels to hear someone you are raising children with has a ‘good’ kind of cancer. Not benign or unaggressive or slow-growing. It’s malignant, aggressive and fast-growing. But it apparently responds well to treatment. Not so well that they let you keep the testicle it has taken over.

It has been exactly how I imagined a diagnosis like that would go. At times it seems fake. At other times I wonder if the results are wrong and he’s really got days to live. I find myself wondering if this is the last time he’ll wrestle with the boys. Or if he’ll get to finish grad school and be a teacher like he has always wanted. And I wonder if it’s okay to think about myself at all.

I’ve been finding this traumatic life experience to have a lot of similarities to Joe’s diagnosis. The not knowing and the waiting and the behavior of the human beings around us. I will share the positive stuff we’ve seen.

We had relatives/friends in Tennessee that we met at a family reunion and have kept in with touch over the internet. They sent care packages for the boys with a gift card for pizza.

A woman I used to teach RAD with came with me and the boys to the hospital and missed a day of work to be there. It was the first time I had seen her since I was pregnant with Hank five years ago.

A woman I met at grief support when we lost Joe two years ago came by with lunch and toys for the kids while we waited to meet with the doctor when the pathology report came in.

Friends and family I haven’t heard from in years emailed to make sure I had their phone numbers in case I needed to talk.

We got a card in the mail from Josh’s 90-something year old aunt to wish him a speedy recovery.

My aunt sent me 200 tea bags from Newfoundland so we could have a decent cup of tea together whenever I needed it.

We were on prayer lists.

We got phone calls.

We got a card from a family with three girls under the age of 7.

We met one family at the park so the kids could all play together while we chatted in ASL (Josh’s favorite way to communicate).

People made time for us. It didn’t change what we were going through but it made it a hell of a lot easier to put a smile on for the kids and carry on as though things were mostly normal for them. The kids in turn made us laugh, kept us busy and reminded us why cancer can go fuck itself.

If you found my blog because of a recent cancer diagnosis or a trisomy diagnosis or someone you know is going through it, let me tell you how their day looks. They probably aren’t getting much sleep. They still have to eat. There are doctor’s appointments that are difficult to bring kids to. There are hours to fill that would be made easier by a visit to play with the kids. They are already thinking about what’s happening so don’t be afraid to get in touch for fear that you’ll remind them of it. It’s okay to say you are praying for them. It’s even nicer to say I just sent your house a pizza.

Years ago we all used to live near our families and the phone and mailbox kept us in touch with people far away. Most of us are now the ones living far away. Our relationships and our physical and mental health are suffering. Don’t underestimate what a small act of kindness can do for a family going through something awful.

Last week we went to Marden’s, a discount store here in Maine that sells salvaged merchandise. We only carry debit cards with us so the giant gumball machine at the door was a huge disappointment to my oldest son because we didn’t have change. When we got to the car I decided to grab the only quarter out of the parking meter money and go back inside with him. He watched the ball of sugar roll down the big spiral and he popped it straight into his mouth. He started chattering about what flavor it might be when it rolled out of his mouth and across the floor. It sucked. I know it was only a gumball but goddammit, give me a break already.

Then I heard a woman saying “ohhhhhhhh noooooooooooooo!” I thought she was angry that we hadn’t yet picked it up off the floor but she came out from behind a pile of stock and said “Hey buddy, I saw what happened. Do you have another quarter?”

I felt like such an a-hole. I don’t know if I said any words before she reached in her pocket and asked Hank if he’d like another quarter but all she had was two dimes, a nickel and two pennies. And she still gave it to him. She told him to go ask the customer service desk to trade him for a quarter. I thanked her but I was braced for a sales associate to explain that they couldn’t open the cash register unless we bought something.

Wrong again.

The next employee was wonderful too. She bent down to Hank’s eye level and gave him the quarter and he said thank you and got a new gumball and skipped back out to the parking lot. His day was made. We’re headed there today to give her a thank you card at Hank’s request. I think that’s a great idea because maybe she’s having a rough day for some reason.

We meet with oncology tomorrow. Josh is officially a cancer patient. We are a cancer family. Years from now the kids will say ‘oh yeah my Dad had that but I don’t remember much about it.’ This same type used to be a death sentence. We’ve come a long way. I wonder if the folks who are doing cancer research ever had a rough day that was made better by a quarter or a pizza or a phone call. Maybe the kids will remember those things. I know Josh and I sure will.

Saturday, March 28, 2015

2 years, 1 month, 13 days and a documentary

Well “Five Minutes Peace” never happened. Turns out, I don’t know how to do a podcast.  There were websites to explain it all but the second I saw words like burn feed, I glazed over. I even had guests who had agreed to be interviewed for it. So thank you Sean Panting and Sarah Walsh. There will be no podcast. But there will be a tv show.

You see my friends, those who have been waiting for me to crawl out of the pits of hell, and even those who have enjoyed seeing me down there, I am breathing again.

I don’t see Joe anywhere or dream about him. He doesn’t leave me any messages or signs. He’s still gone. He isn’t coming back. He should be here. He should be playing with his brothers. We should be arguing with doctors who don’t believe babies with Trisomy 13 matter. But we are not.

As parents of a stillborn baby, we are never asked for pictures. We don’t tell the birth story. The only safe place to grieve is around other parents who understand.

We were launched into another category when we had PJ. We became people who should no longer be grieving, who shouldn’t complain about how hard it is with two, who are never quite happy enough or sad enough to anyone’s liking. Pregnancy after loss sucks. It’s harder than other pregnancies. Having had all three, I can say that.

We have lost friends. We are not the same people we were 2 years, 1 month and 13 days ago. With the solitary exception of losing Joe, we are better people now. Mostly because we don’t give much of a fuck about anything anymore. What matters is within these four walls and the people we care about get that. Anyone with good intentions is just fine with your personal space and boundaries.

I was told a few years ago the first time I took RAD that when someone stands too close to you at the grocery store and isn’t paying for your purchase, they shouldn’t have any issue with you asking them to step back. Should they cause a scene and call you a psycho or other derogatory name, they probably were trying to get your PIN or hear you tell the cashier your phone number for the Rachael Ray dishes.

I happened upon such a woman at Burger King about a month ago. The place was empty except for her and my family of four. She had her order and was sitting as I approached the drink machine with Hank. She decided she wanted more ice and proceeded to stand so close to me that when I exhaled her hair moved. Normally I would shrivel up. But since I was letting Hank pick his own drink and press the button, I took exception when she asked if she could get in there for just a second.

Keeping in mind, I was highly triggered that day for separate reasons. I was already worried about how many people had coughed on the drink lids, who didn’t wash their hands back in the kitchen and how to eat chicken nuggets without actually touching them.

So I told her actually now’s not a good time. We are getting our drinks.

Her hair didn’t move. In fact she started breathing on my neck. So I took a deep breath and calmly said Ma’am, with all due respect, you are not making me go any faster.  Could you please step back.

She stepped away…to get her tray and go to the counter and demand her money back because my family had ‘ruined her dinner.’

With my 1- and 4-year-old looking on, I tried to play it cool.

Until I saw her storming back towards our table.

I stood up and got in her path and she inhaled deeply and put her finger up in my face to deliver the speaking to of a life time. But I was rude. I interrupted her. I told her that whatever she had to say was unimportant and that since I was there with my kids, she should back off. She leaned in closer. And started yelling. So I mentioned that should she proceed further, I would absolutely be pouring my drink over her head.

She kept yelling some nonsense about praying for me and where I was headed. My partner noticed things were not calming down and came over and stood between us and walked against her until she backed up.

He looked like the stew pot that Bugs Bunny was trying to stay out of. All I could see was her trying to get around him to get at me.

She finally grabbed her now takeout bag of Burger King cuisine and I guess she could see me hyperventilating. She leaned in and said “You brought this on yourself.”

I’ll admit it crossed my mind to go scream at her I HAVE PTS-FUCKING-D, MY BABY DIED YOU ASSHOLE.

And in my Canadian-born paranoid pacifist brain, I wondered if she had a gun in her Toyota 4-Runner.

She did not have good intentions. In fact, when I saw her ahead of us complaining and asking for a refund for the 17 cent salad dressing, I should have gotten a clue that she was out for a fight. Why she chose the 5-foot-woman with the two small children and an already panicked face, I have no idea. Maybe I am an easy target. Who gives a shit why?

I want to make a documentary. I don’t expect it will help anyone understand how it feels to lose a baby. I doubt it will convey the range of emotions it brings out to have a baby after a loss. What I hope to accomplish is to help some parents tell the story of the children they lost. To have some record that even though you can’t see them at the playground with their brothers and sisters, they were here, they mattered and they had names.

It will include images of us with our families and there will be interviews and poems and letters. There will not be pictures of lost babies, there will be video tributes that we can watch again and again. And maybe it will take some of the sting out of the birthdays and the death anniversaries.

To look at us from a distance, we have two boys. PJ has no idea there was a baby before him. Hank knows that sometimes a baby comes out of Mama, sometimes they die before they come out. I want to tell the story of the baby who is missing from that picture.

If you have experienced the loss of a child during pregnancy and have since had a baby or adopted or are waiting to adopt, and if you are willing to share your family’s story, send me a message on the Facebook page or through Twitter.

That is in no way, shape or form discounting the families who don’t fit those parameters.  I can't being to imagine your grief to have experienced your child and then watch him/her die. This particular project is to tell stories that reflect ours and Joe’s.

Over the next few months I am learning to use the equipment to make my documentary a reality. The local television station has been lending me gear and teaching me to use it. I have a Vimeo page and projects in the works to get better at filming, interviewing and editing.

Perhaps I’m wasting everyone’s time. Big deal. I don't get signs or messages from Joe. I have physical, emotional and psychological scars that may never heal.  I’m simply following the tiny little voice in my head that keeps telling me that my creative ideas are worth looking into. If you want to call that a sign, that’s up to you. For me, I make a point of thanking him every time I feel a rush of happiness or dodge a bullet. I have a guardian angel. This is my way of paying tribute to my lost baby and to my babies who survived.

Here’s a link to my first video production. It’s my first time editing too. So while I’m off practicing, consider whether or not you would be willing to share your baby’s story with my camera. Others might see it but it will be for us. The loss Mamas and the loss Dads. The brothers and sisters left behind. I’d love to hear from you.


Wednesday, August 27, 2014

Five Minutes Peace

I’m working on a podcast series called “Five Minutes Peace.”  It’s about the challenges of creating anything when you work at home with small children depending on you.  It’s also about silencing the anxiety, depression, obsessive-compulsive and post-traumatic stress disorder symptoms long enough to create something worth sharing.

I’m hoping to interview some artistic types and share what works, what’s a pain in the arse and how the work ultimately is improved when you gain some perspective from these little beings who steal your time and your heart simultaneously.

Down the road I plan to dig a little deeper and talk to parents who managed to function after they lost a child.  Grief, much like anxiety, demands your attention and stops your work and keeps you from thinking, creating or being able to connect with anyone or anything.

All combined they make finding a few minutes to jot down a few words, lyrics or brush strokes a little harder. And when the choice has to be made of following the muse or kissing a tear-stained cheek or shedding a few tears yourself, the muse has to wait.

I want to tell my story by asking other people to tell theirs.

Please check back from time to time or subscribe to get updates when new material is posted.

Until then, be well and I hope your day includes at least five minutes peace.