Sunday, July 13, 2008

Love Seat

I'm writing, as you may imagine every blogger doing, from the couch, in my P.J.s. I've got yarn and needles and a pattern book, garden books and mystery books and magaizines. Things to drink, my phone, both remotes, kleenexes and a little bag for them. It's like I'm six and I've got the flu.

But no, it's all because of this little boy snoring beside me. We've been on the couch for a little over a week. Thomas has spent very little time awake. Some of this is because we had to bring in the big guns to fight nausea, and those medicines make him even sleepier. Some of it is because his pain medicine dose has grown to a size his system just can't take standing up.

And some of it, we fear, is because his body is just tired from its struggles. So Thomas wakes up to get more medicine and, when he is comfortable again, he is able to relax and rest.

We had to really think about the reasons. Our hopsice nurse is a veritable Madame Pomfrey; if we wanted her to conjure up something to keep Thomas awake and active, she could do it. So Scott and I have had yet another of these outrageous "How much doing is too much doing?" conversations. We decided that this, too, goes on the list of things that seemed like a good idea when we were anticipating this moment, but that doesn't fit now that we're here*.

Scott sent me a video at work - I am still working for now, half days, something I could not have chosen if not for all of you - of Thomas playing with bubbles. I don't want to share it with anyone. I know, looking at it, how shocking it is. Thomas is pale and already so skinny, and he is laid out in the pillow and lifting his arm in the way that shows how weak he is. But what I can see, looking at it, is my son, having a moment of delight with his dad. I don't know how to explain the way our horror and grief sits right next to our regular old affection and daily kindnesses and humor - all of it piled up together on the love seat of our hearts.

Novelist Elizabeth McCracken has a basically life-saving, sad, and hilarious excerpt from her memoir in this month's O Magazine called "This Does Not Have to Be a Secret." I may or may not resist the urge to quote great swaths of it here, especially the part about the "dwarves of grief." She speaks of her first son, stillborn, and of the great "family tree of grief" that you get grafted into when something like this happens.

This part I'm about to quote perfectly summed up for me my feelings about the video of my sick son popping bubbles. I know that he looks sickly, and our story is pitiable, but what I see is Thomas and not The Boy With Cancer.

And Thomas is not dead, but something inside of me quickened when MCracken wrote, "I'm thinking of that Florida lady again, the one who wanted a book about the lighter side of a child's death, and I know: All she wanted was permission to remember her child with pleasure, instead of grief...He's dead but of course she still loves him and that love isn't morbid or bloodstained or unsightly, it doesn't need to be shoved away. It isn't so much to ask."

*ctel, we did do the steroids after all, but in a cream form, and we have seen no ill effects

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At 8:53 AM, Blogger Michelle D said...

Thank you for not only writing but for sharing. I think of you all so often and come here to check on sweet Thomas. Praying here...

At 2:23 PM, Blogger Kara Soluri said...

Hello Sarah. I have been reading your blog ever since a friend told me of your family's plight. Your honesty is breathtaking. As someone who has suffered from post-partum depression (another illness-no-one-wants-to-talk about), I appreciate people willing to tell it like it is (BTW, I fould Pastor Gordon's blog through you, so I thank you for that).

You are one of the reasons I decided to volunteer as a blogger for the American Cancer Society, and I hope you don't mind that I've linked to this post at I know people who will feel less alone because of your words, like a mom who was told by her doctors that she should go on medication because she didn't seem "sad enough" about her daughter's cancer.

Thank you so much for sharing the gift of Thomas. He is a beautiful little boy.

At 5:07 PM, Anonymous Anonymous said...

Loving Thomas -so easy - letting go - not so easy. Each SECOND - so precious with him -let each second proceed and never end. I love you all so very - very much!


At 12:10 AM, Blogger kate5kiwis said...

perfect bubbles.
perfect memories.
perfect love.

At 9:43 AM, Blogger robinandamelia said...

Thoughts and prayers for Thomas.

At 11:16 AM, Blogger Buddy and Marie said...

Hi Sarah and Scott,

I met Scott and Thomas at Jonathan and Steph Ridenour's in New Orleans about one year ago. Thomas was a non-stop 2-year-old then. We were encouraged by how well he seemed. I have been reading your blog for the past year. I cannot imagine what you are feeling but I want you to know I pray for all 3 of you often. Like the quote you used, I hope you can remember your child with pleasure.
Marie Crowe (Stephanie's Mom)

At 7:56 AM, Blogger Jana said...

Thank you for sharing this, Sarah. I understand, as far as I am able to, what you are saying.

At 1:02 PM, Blogger Mel said...

There's nothing to say.
I just wanted you to know I'm still checking up on you.

At 1:28 PM, Blogger Lizard said...

Thinking and praying for sweet Thomas today...


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