January 16, 2013

Thinking About Tomorrow

Me and my favorite girls
Today, my little RH is seven months old.

I know, I've been a terrible blogger.  You all hardly know anything about her.

RH- 7 months
You don't know about how she laughs, trilling and purring and puffing.  A friend of mine started calling her "Helga Hufflepuff."  It's accurate.  And adorable.

You don't know about how she's finally realized the benefit of tummy time, how she wriggles around like she's maybe actually thinking about crawling, how she rolls around the room to get to contraband items, how when she arches her back and whines her big sisters will roll her over so she doesn't have to.

She's a wonderful little person.  She loves to grab my (or daddy's) face in fistfuls, pull me close to her, and plant big, open mouthed kisses all over me.  How her gums are filled with little teeth getting ready to just bust through.

She's amazing.  I feel like I'm really relishing these baby moments more now than when DD and SI were so small.  Maybe because there were two of them to distract me from each other, maybe because now I truly know how fleeting they are.  Hell, this time next year RH will be walking and talking.  Potty training.

DD- 3 1/4 years
And my big girls... my big, big, big, big girls.  I don't know how it happened.  Suddenly they're on the verge of wearing 5t clothing.  Suddenly they have all of these vocal opinions, and make jokes, and have bad dreams and need hugs.  Sometimes they even read.  They are dedicated big sisters, reading to RH, giving her toys, playing with her... they're her favorite people in the world.

DD told me today that her favorite word is "idea."  I like that.  She told me that shortly before she had a meltdown about not wanting to eat a sandwich, and then ten minutes later walked up to me and gave me a giant hug and said, "I'm sorry."

She's FINALLY mastered the potty.  Yeah, sometimes she still poos in her pull-ups after her nap, but last weekend she woke up, got out of bed, went to the bathroom, and pooed in the potty without even bothering to wake me or M up.  She's so competent.

SI sings.  Like, she really almost sort of actually sings.  Look:

I taught her nothing.  She just loves to sing along with Annie.

She gives so many hugs, so freely.  Her laugh is infectious.  She learns so quickly- she's constantly working on her speech.  You may notice in the video- she doesn't make a lot of sounds properly.  But she tries so hard, and with a little help the changes happen quickly.  You'd never know that two months ago the "k" sound was completely beyond her repertoire.

They both love to sing.  And they have excellent taste.

I can have conversations with these people.  They're self-centered, fairly superficial conversations... but still.  They tell me stories.  They tell me about their likes and dislikes, their plans, their ideas.  SI likes to tell me about how she'll get bigger and bigger and bigger and then do something to be like me.  It melts my heart.

And so, I have been thinking a lot about the future.  Not just because it's so hard to imagine RH becoming a child the size of DD and SI- not just because I have no idea how it happened the first time. Not just because they've reached a growth rate differential that means I actually have to consider parceling out their clothes into DD's and SI's, and figuring out how one does hand-me-downs to twins without new clothes feeling preferential...

M had his every-six-months MRI again on Monday.

Such an awesome daddy.
This one was a little different.  Before you start worrying, you should know M is fine.  Not just in the "just fine" way I meant when he was going through treatment, but in the truly moment to moment way that people mean it in general.  There are no changes.  At least, not to him.

For the first time since July of 2007, M has a new neuro-oncologist.  His old doctor, the one with the silly name, is gone.  Moved on to greener pastures.  So we got to start from scratch with a new doctor.

She's charming and sweet and competent, all you could ask in a bedside manner and attitude and human being in general, but also eminently practical.  And that meant none of the sugar coating that Dr. Grimm used to have.  None of the old friends, constant optimism, we're-all-in-this-together-ness.  You can't go into a meeting with somebody who has inoperable masses in their brain with that kind of attitude.  You have to go in with caution.  And that is what the new doctor did.

She sat us down and talked to us, straight off the bat, about when.  Not if, when.  As far as she's concerned, that's a foregone conclusion.  It's not *if* M's cancer comes back, it's not *if* there's new growth, new contrasting areas on his MRIs.  It's when.

This is my happy place I go when things seem bad.
And in the thirty seconds it took for that icicle of a thought to slide down my spine, settle in my stomach, and imprint itself permanently and horribly inside of my ears forever, she moved on to all the good news.  The good news that Dr. Grimm never would have thought to tell us.

In the beginning, when M was getting ready to start radiation and chemotherapy and his experimental protocol, the doctors told us about what we would do if the treatment failed.  What the options would be if there was a recurrence.

A second round of radiation was off the table.  Unless M survived "a really, really long time."

We'd have to dig deeper, find more aggressive, more harmful treatments.  But there would be options.

Now?  Apparently, that "really, really long time" was incredibly relative.  So relative that M has doubled it.

The who SuperMommy family, partying down.
It's been so long, a paltry five and a half years is so long, that when there is a recurrence we can do exactly what we did the first time.  Do exactly what we know worked for M.

It's been so long that so much more is known about M's cancer that we can be confident there's no genetic element, that the children won't need any kind of extra screening.  (Not that it will stop me.)

When we cross that bridge, we'll cross at full strength, as though the first time had never happened.

But we won't.  It won't really be like that.  Because we'll be older, because I don't know if I still have the unfailing optimism and conviction that I did when I was 23 and newly engaged and fundamentally certain that M was going to be just fine.  Because on top of being M's rock and dedicated helpmeet and nurse and advocate and everything else he might need, I'll have another three people who need me for more than everything, who need me to help them cope with this sort of illness in their father.

When is scaring the everliving shit out of me.

And I know what when means.  It means inevitably, it doesn't mean tomorrow.  It means down the road, somewhere.

We did this on purpose.
But we can't know when when is.  And we knew that the first time we got pregnant.  We had babies when we did so that when M got sick again, they would have had the most years possible with him.  That when he inevitably passed away, they would have meaningful memories.  They would know who he was, and how much he loved them.

And so, in a way, I really was prepared for that talk.  I really was prepared to hear it out loud, that all those fears we had addressed were still real.  That they hadn't just faded into memory.  That we were still living with them.

The new doctor didn't say, "tomorrow."  She didn't say, "next year," or "in ten years," or "in fifty years."  She knows exactly what we know.


None of us have a clue what kind of timeline M has.  Nobody does.  People haven't been surviving brain cancer long enough to know what survival rates look like.  What recurrence rates look like.  M is already so far out on the bell curve that there's no way to know whether or not he's just plain off of it.

Here's to another day.
But I suppose we're ready now.  We're reminded that M isn't free from his diagnosis, he's still living with it every day.  We're reminded that we're doing this together, this family building, baby having, life experiencing thing, and we're doing it on purpose.  We're doing it because we want to milk every last drop of joy that we possibly can from our lives.

I'm going to go hug my children and make a keugle.  Because M and I love keugle, and I love hugging my children.  I'm going to eat Cherry Garcia for dessert with M, right out of the carton, and we're going to watch Community and the Daily Show.  And I might cry a little and pass it off as hormones, but I'll bury my face in his furry, furry chest, and feel overwhelmed with gratitude that I have my life for another day.  For another six months.  Until his next MRI comes and I go through it over again.


  1. I'm glad the new doctor was able to give you some good news!

  2. Facebook won't let me share your adorable singing video. I have sent in two angry emails about it. WTF?

    1. Somebody is messing around with me. They reported my blog as abusive material to facebook, so anything that links to it is banned. If you're wiling, PLEASE keep letting them know about the mistake!!!


    2. Willing and participating. High priority.

  3. This comment has been removed by the author.

  4. Great post...we raised money for the Susan G. Komen Breast Cancer Foundation while we were on our bike trip across America, so cancer is something that is close to my heart.

    I will be praying for your husband!
    Thank you for sharing!



Related Posts Plugin for WordPress, Blogger...

Vote for me!

Visit Top Mommy Blogs To Vote For Me!