Tuesday, September 19, 2017

It's happening again. Politicians are out there telling people to be more responsible with their health, as if that's the cure for ependymoma in a 6 month old.
 I've shared our story (and my cash) with Little Lobbyists to support their efforts to fight for kids like Thomas. I'm calling my representatives this week, too.

Feel free to share this story with your elected leaders. And if they don't do right by kids like Thomas, unelect them. 

Call (202) 224-3121 and feel free to use this script in case you're a freeze-upper. Or you can print the thing below and send it to your rep.


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Thursday, July 26, 2012

Epilogue, way way later.

On Tuesday, it will have been almost three years since we lost that boy of mine.  I was thinking about taking the whole blog down. Everything has changed. I'm in a new place, with a new job, and I don't have to be The Brave Cancer Baby Lady anymore if I don't want to be.

But I looked at my google stats for the first time this week, and there are hundreds of you coming here on these anniversaries, and at the holidays. Because, of course you remember Thomas.  Who could forget?

So I'm going to let this blog live here a little while longer. There may be a time to take it down, but for now, it's a place of tribute: to him, to the way my little family persevered through all that, and to you, the people who accompanied us through the valley of the shadow of death. 

Also: 
Remember Lawrence?  I do.  His dad is putting together this amazing compilation album to raise money for research on brain tumors like Thomas's and Lawrence's (the label is splitting 100% of all profits between http://braintumourtrust.co.uk/ in the UK and http://www.cbtf.org/ in the States). If you want to know what the heck they're dancing to in London these days, or if you want to sucker punch cancer, this is your chance.  Join their facebook page, called Somewhere Quiet



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Saturday, September 13, 2008

Epilogue #Last



One of the sweet habits of Thomas’s that I’ll always marvel over was his “job.” He always had a job – at a certain time of the evening, each night, he’d get up and do whatever new activity he was practicing at the moment for about 30 minutes.

We first noticed the pattern when, around 8 months old, Thomas started pushing an empty laundry tub around, back and forth across the front room, every night after dinner. For the first couple weeks, he did it on his knees, and then as he got better at walking, he’d push on his feet, back and forth and back and forth…

Later, the evening walk covered “job time,” so the jobs went al fresco. My hearts is sore this fall as acorns have begun to appear again; Thomas would carefully inspect several at a time on our walks and then hand me the best ones. Deposits were to be returned from my pockets every 10 feet or so.

After that, Thomas’s job was putting his animal magnets on the fridge in a very straight line. Then making play-dough & crayon towers, then writing while making counting sounds… it was always something. He would work really hard at his job for a few weeks, and then, satisfied, he’d move on to his next effort.

Leaving this blog feels like that. I am someone who just writes, period. It surprised and encouraged me to find that my family’s story had found purchase in so many hearts, but I honestly don’t think I could have managed Not writing about this in some way.

Whether I was telling the story of our exhausting in-and-out-of-hospital weeks, or just bragging about how cool Thomas was, writing about our experience helped me sort it out, review it, hash it up ‘til I could get it past the lump in my throat.

I’m not done grieving, not done remembering. Not done connecting with the people who love us. Not done writing. None of that, by far. But … I am thinking of Thomas looking at the laundry tub after the third week, and instead of pushing it, stepping in to pretend to drive it. I think that starry-eyed carrot top of mine was right – you take what you’ve learned, and then you re-imagine it.

We’re done here, with the blog, I mean. But we’re taking all the support and memories and tears captured here with us when we go. Our next job is one Thomas was great at – making the most of life in spite of cancer. In honor of life.

I told you he was smart.

So in honor of Thomas, thank you for being here. And good night.


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Epilogue #2

Just so's you know - we are doing well. We are remodeling the living room*. Scott is starting a new job Monday. We are starting to get out and about a bit. We're still sort of stilled from our vacation. We're sad. It's good. Or at least, it's all welcome.


*This is fair a compromise from our first instinct, which was to add to the end of the memorial service program the invitation: "Family is welcome to join us for a short ceremony in which we will explode the house into frickin' smithereens," and the impulse to see even the walls as a souvenir of our life with Thomas.


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Monday, September 01, 2008

Epilogue #1

Here we are. Back in town. Back at the house. Back where we started, but of course not really.

The memorial service was beautiful. I can't imagine a better representation of Thomas's life, of our life as a little family. We were joined by people who loved Thomas, and people who loved people who loved Thomas, and people who loved us before Thomas was born, and people who wandered into our lives after cancer blew the front door off. We all cried and laughed and listened to some beautiful singing. There was cake. All the important stuff.

Scott and I went away to quiet places for a few weeks, and then we came back, eyes blinking in the bright light. Everyone asks, "How are you doing?" It's hard to say.

And even when I know the answer it's hard to describe. We're doing better, in a lot of ways. There is less stress and more sleep. Our awareness of Thomas's suffering and his sad fate took such a large toll these last years. It feels strange and exciting to make plans of any kind, to cook dinner, to do a silly dance because we're feeling light-hearted.

And then, of course, we're doing worse in others. We miss him. I spent some time looking through all the photographs of Thomas before we left town, and I was amazed to see how clear the effects of the cancer were in so many photographs. I think I couldn't admit to myself, until it was safe, how hard this has been; how hard it was for Thomas.

So when someone asks, and the listener has the time, I try this exercise to explain how we are:

Hold out your left hand in a fist. Now put out your pointer finger and your middle finger. Imagine this is all your joy.

Now put our your ring finger and your pinkie. This is all your sadness.

Now take your right hand and squeeze the left fingers, really, really tight. That's what living under threat of cancer has done for these last years.

And then take your right hand away. That's the strangle hold of cancer letting go, leaving both our sadness and joy behind. It's just that there's more room for both of them now.

Scott and I are taking it easy, taking care of ourselves, taking care of each other - all the things you all told us to do in your kind emails and letters (20 thank-you notes down and 146 to go, by the way!). We are making careful and slow forays back into the world of work and friendship, and we are being welcomed back very gently.

In fact, it's like this: hold your left hand out again, and think of the tears and silly dances that those fingers represent. And then let a friend hold on to it.


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Thursday, August 07, 2008

So long and thanks for all the fish

We're doing ok. I mean, whatever that means right now. But you don't have to worry, is what I'm saying.

I wanted to say two things -

1) Thanks for all your kind thoughts and prayers and casseroles and making-room-in-your-hearts for us and for our dear son. Your words and presence have meant the world to us.

2) We are heading for the hills. If you know me, and you don't hear from me, we're ok. We're getting out of town for a couple weeks. It'll be good.

thanks.


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Monday, August 04, 2008



Kim Breen's tender obituaty for Thomas here.


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Saturday, August 02, 2008

sad facts

*Thanks to Kim Breen for writing the obituary that is appearing in today's paper*

Fact 1: There will be a memorial service at Bethel Lutheran Church in Dallas at 11am on Monday. Any real-life friends of ours are welcome to come.


Fact 2: Feel free to do flowers or nice emails or whatever is natural for you in times like this. You could also give, in Thomas's name, to Community Hospice of Texas, who gave us such profound support during these last months, or to Children's Medical Center of Dallas, whose empowering help moved us through the labyrinth of cancer.


Fact #3, slightly less sad: Also, I know that I have been very honest here about our financial situation, and some of you have already expressed concern about that. Recent fundraising by SWA and the AAFOC (Austin-Area Friends of Candace) did exactly what it was meant to do by providing us a worry-free way to take off work while Thomas was sick, and to spend time with family and each other now that Thomas is gone.

Besides that, the very kind and gentle people at Rolen-Wood Funeral Home have provided their services for almost-entirely free, and of course Bethel Lutehran isn't charging us. So that concern is gone as well.

Fact #4: Unbelievably kind gifts like these and yours, and your kind thoughts over the last however-long have made a path through the dark place for us. You will never know how much your help has meant to us, and we will never stop remembering.

Last fact: We are busy being sad. We are hearing your kind words, but I am probably not going to respond for a while.

-Sarah


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Thursday, July 31, 2008

Sad News

I have something sad to tell you.

We lost Thomas this afternoon.

He died in his dad's arms. He was not in pain.

He'd had a very, very exhausting day and night and morning of wet, depressed breathing, but he hadn't really been alert since bedtime last night.

These are the last three things Thomas did: the "hey, look at me, I've got a humungous bowl on my head" joke for his hospice nurse on Tuesday, and then last night, he woke up to watch Blue's clues and to wave at Steve and Blue. And then he gave his dada kisses before bedtime.

Today, we held him for a long time. We told him lots of good things, and sang to him, and held him some more.


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Sunday, July 27, 2008

gloom and loom

This week was terrible for Thomas. Like last week, but with more restlessness and more moments of real discomfort.

It's been hard on us. We try to take breaks, to get off the couch where Thomas sits for some period of time, but what is there to do?

I go to Target, Taco Cabana, the garden store. Eventually, I wander into my friends' homes or evenings at the pub and ...I don't even wander. I loom. I say unconnected things and when I realize that I'm not making sense, the effort of imagining trying to connect the dots exhausts me.

Cancer has finally disrupted the last bits and pieces that made up our family routine. The bath, the bedtime book - it's like Thomas was humoring us the last few weeks, knowing how much these gifts of parenting mean to us, but now he's done. He's too exhausted, too sensitive. He'll start to color, and then stop.

Even on these tough days, though, Thomas has perked up for our daily Cars* viewing, and for the early part of visits. He's still a show off... or maybe he's just tired of us looming.




*seriously, Cars? Great movie. has to be - I've seen it 8 times now (not including the 3 times in Spanish when we were in the hospital) and I still like it.


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Sunday, July 20, 2008

Gotta dance Gotta dance


Hey, just a quick update. We have caught back up on Thomas's med needs for now. This means that he has had a more relaxed and alert two or three days...That's as compared to Total Crap days, but still ...we'll take what we can get.

He even got up off the couch three times -

a) to dance the salsa with Handy Manny

b) to hang with our favorite Child Life Lady, Cinda
and

c) to march over to the pantry, despite the fact that the trip clearly exhausted him, and demand a cookie


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