Wednesday, December 9, 2015

Survivor Mama: 'tis the season

If you're visiting my blog after searching stillbirth, Trisomy 13, rainbow pregnancy or the MaterniT21 test, please give this a read when you get a moment. Thanks so much. ~Vickie

Survivor Mama: 'tis the season: Since it’s that time of year when people are moved by the spirit, I wasn’t all that surprised yesterday when I had my own epiphany. Her...

Monday, August 31, 2015

Small Acts of Kindness (reposted)

I am reposting this from my blog at its new address

I've been posting over there since we lost Joe in 2013.

Thank you for visiting.

June 25, 2015

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.