The Mother Load

Mom, today I learned that the kids will always, always, always try the knob first and knock second. (Therefore, slow-to-learn Sarah, you must always, always, always lock first and undress second.)

Some time in the far distant past, some people got together and decided to make up a little saying to brighten the dark days of other people who were struggling with trials. (These are the otherwise ambiguous "They" to whom we attribute so many of our sayings.)  Their happy little phrase completed, They bounced on down to their sad friends and imparted their inspirational wisdom.

"When life hands you lemons, make lemonade!" They said, probably with an obnoxious amount of pep in their voices. I don't know how the saying was received by the inspirees, but I do know two things about the inspirers.

a) They should not have been allowed to make up motivational phrases if They couldn't see the ridiculously wonderful face value of free lemons, and b) They obviously never came over to my house for lemon bars, hummus, fresh cherry compote, garden salsa, and about 80 other things I make with lemons all the time.  (Because They lived before I was born, I almost forgive them.)

The adage, as I've always understood it, says that when life gives us something bad, we should use it to make something good.  It makes sense on some level...except that I don't think lemons are bad.  I think they're wonderful, actually.  If life handed me lemons, I'd be jumping up and down and screaming, "Free lemons!"

For you lemon haters, it would be akin to someone telling you, "When life hands you chocolate, make chocolate cake!" while patting you on the back sympathetically. You'd look at that someone and think, Um...thanks for the suggestion, weirdo.  Now stop touching me and get away from my free chocolate.

I realize today as I consider all of this that the lemons in the saying aren't something bad that can be turned into a tart but sweet and refreshing blessing.  The lemons ARE the blessing, and from that blessing, we can get a lot more than just lemonade. (Seriously, you should try my hummus.)

Years ago when, after half a year of desperately hard work, it became clear that my first marriage was not going to be saved and my ex-husband announced that it was over for good, my therapist challenged me to write a list of "27 Reasons the Divorce is a Gift from God."  I was only 2 days into my separation, I was devastated, and I thought my therapist was out of his ever loving mind. I'm pretty sure I told him that.  But I made the list. (And it helped...eventually.)

Today, I think my therapist just understood lemons more than most.

So, here you have it. 27 Reasons Miriam's Cavernous Malformation is a Gift From God.  (Why 27? You know, I never did ask.)  This is a Miriam approved list, so if some of these seem morbid, just know she was giggling along with me as I wrote them.  Sometimes, when life hands you a brain lesion, it's easier to embrace slightly inappropriate humor, I guess.

1. How many people can say, "I survived brain surgery?" ("...and all I got was this lousy t-shirt")

2. If anything goes wrong during the surgery, she'll get better parking spaces for life!

3. Room service at Primary Children's Medical Center. Literally, pizza and milkshakes available all day, anytime she wants them.  Oh to the yeah.

4. Leg jolts. She'd never get that grant from the Ministry of Silly Walks without them.

5. It's not a tumah.

6. It's also not a partially absorbed evil twin who will come to life and try to kill her while simultaneously decomposing, only to ultimately be eaten by a flock of sparrows.  That would be okay, of course. It would just be rather anticlimactic.

7. Scones and pie.  Pie and scones.

8. The amount of radiation she's had already could lead to superpowers.  I vote for super stretchable legs so she can harvest the out of reach cherries in the backyard.
 
9. I don't think I ever knew how good people could be.

10. Meds that made Miriam angry reminded us to be grateful for how nice it is not to have an angry daughter anymore. (You wouldn't like her when she's angry...)

11. If we needed a reason to be glad we live in the future... (Other than our Wii.)

12. The family that prays together, prays together.  (I won't say stays together because they'll all grow up and leave eventually. Praying is like lemons. It's a blessing on its own. Sometimes, it takes a reason to get us praying again.)

13. What doesn't kill you makes you stronger.  Except degenerative diseases...and lead poisoning. But this isn't either of those.

14. We would never be able to eat all the applesauce our apple tree is going to provide if Miriam didn't need to take meds twice a day.

15. You don't realize how infrequently you say "I love you" to your kids until you're faced with never getting to say it to one of them again.


16.  Hospital cafeteria dates with my Mirimo are the best.

17. The horseshoe shaped scar on her scalp will surely bring good luck.

18. Miriam says, "I get to be away from my annoying siblings for four whole days!"

19. Additionally...she gets free rein of the hospital room TV for four whole days.

20. Big science test she didn't study for? Fake a seizure! (This is so bad. Also, I can't believe she won't let me blame it on her.)

21. People offer to give you things.  For instance, a man in our church congregation offered to make Miriam a plastic dome she could use in place of her skull.  We're considering it...

22. When she's dating age, those MRI images are going to be way more embarrassing than naked baby pictures.

23. While the malformation is still in her head, she's less attractive to zombies.  (If the zombie apocalypse happens after August 7th, we'll get her an ax for her 14th birthday.)

24. If we get the neurosurgeon on board, he could do a little brainscaping, so she can be the first person in history with literal corners of her mind.

25. If the surgeon opens her up and finds an evil supervillain brain where a normal human brain should be, we'll be able to stop her before she takes over the world. (At the very least, we can get on her good side and earn spots as minions.)

26. It gives me the opening I need to tell everyone I meet that we do NOT only use 10% of our brains. (Please stop saying that. It's ridiculously untrue, and it makes you sound dumb.)

27.  And finally, when life hands you a cavernous malformation in your daughter's brain, and you realize life has really handed you lemons, you know for a fact that no matter what, life is good.

Last night, two of my loverly children got into a fight over whether or not they were each doing their chores to the best of their ability.  It went something like this:

Child 1: You're not done, you know.
Child 4: Neither are you!
Child 1: You can put more dishes in there.
Child 4: You haven't washed the counter!
Child 1: Are you going to put more dishes in there?
Child 4: You're not the chore manager! Stop telling me how to do my chore and just do yours!
Child 1: Mom, ____ isn't doing her chore right.
Me: Why don't you both focus on your own chores and not worry about the other person's?
Child 1: (ignoring this) You need to put more dishes in before you start it!
Child 4: YOU'RE NOT THE CHORE MANAGER! LEAVE ME ALONE!
Child 1: YOU'RE NOT DOING IT RIGHT, SO I'M HELPING YOU!
Child 4: STOP HELPING ME! ______, STOP HELPING ME! PUT THOSE DISHES DOWN! THAT'S MY CHORE! MOOOOOOOOOOOOOOM!

This goes on pretty much every day.  Child 1 is just about always involved because, being Child 1, he thinks it's his personal mission to make sure children 2-5 do what they're supposed to do.  Children 2-5 think he's being a big jerk when he does this, and they usually let him know...loudly...in shrill voices...often in unison.

Usually, this only occurs after 4 o'clock, before which I've had a quiet day of at home work interrupted only by the sweet meows of fluffy friends who cuddle and don't talk back.  As you're probably aware, "usually" only applies during the school year, and right now, it's June, so this stuff is going on all...day...long. Or, as I like to describe it to my longsuffering spouse when I pick him up from the train station: "ALLDAYLONG!"

And it's only June.

Full disclosure (since my neighbors will likely rat me out if I don't disclose): Children 3-5 are actually still in school all day.  Their year round schedule will only give them a 3 week break in July.  However, one should never underestimate the amount of fighting Child 1 and Child 2 can do in the course of one day.  The other three make up for their absence by doubling down on the weekend fighting.  In July, the house will probably explode...more than once.

It's times like these, you just have to sing...loudly...in a shrill voice...solo.

(Sung to the tune of "Summertime" by George Gershwin)

Summertime,
And the livin' is crazy.
Kids are fightin'
And the volume is high.
Oh, their stepdad works
Far away in the city
But hush, frazzled Mommy,
Don't you cry.

One of these mornings,
You're gonna wake up smiling
They'll be back in school
And it won't be so bad.
Until that mornin'
Keep that Netflix runnin'
So you can keep yourself from
Goin' mad.

(I'd like the record to show that Child 2 snickered when I sang this to her. I'm not sharing it with Child 1. He'd just tell me I did it wrong and then try to write it himself.)

Mom, today I learned that my neighbors are Portlandia fans.


For the uninitiated:

Mom, today I learned that miracles happen.

Hello, hi, how are ya?  Remember me?  I used to post stuff here.  Then my kids got sick and my life got crazy, and I started saving my energy for much harder tasks than blogging...like getting out of bed in the morning...and smiling...and having faith in the future.

Wait, wait wait.  I promised myself this post would not descend into maudlin territory.  Let's begin again.

Hello, hi, how are ya?  Nice to see you again.  How've you been? Me? I'm doing okay.  Sorry I haven't blogged in awhile. The docs at Primary Children's Medical Center let us know in May that the best way out of our medical crisis was going to be through brain surgery, the good, old fashioned trap door in the skull kind, and I focused on that for awhile.

By focused, I mean I worried myself into a new case of Post Traumatic Stress Disorder.  A few panic attacks later, I am now proud to say I've joined the ranks of the heavily medicated, and I'm back in therapy with a a nice lady named Dr. George.  Also, the name Dr. George strikes me as funny for some unfathomable reason, and that helps a lot.

(By heavily medicated, I mean a low dose of Zoloft...but for me, that's pretty heavy duty.  The good news is it's working, and life seems manageable again.)

So surgery... We got Miriam to the almost seizure free point between February and May and then met with both her neurologist, Dr. Van Orman, and her neurosurgeon, Dr. Kestle, to discuss where to go from there.  In the meantime, I studied up on the various options, reading more research reports and journal abstracts that any mom should. (Note to self: that probably didn't help the anxiety...)

While Miriam wasn't having the big, scary seizures anymore, and her new med didn't have the side effects of the first one (prompting us to have a goodbye party complete with ice cream and lemon bars for "Mean Miriam" the day she finished her last dose), she was still having daily "jolts" down her left leg, sometimes falling and injuring herself.  Dr. Kestle told us those were still seizures, if partial ones.

Looking at the options, it was clear to everyone that watching and waiting was not going to work.  Not only were seizures still a problem, the stroke risk for leaving her cavernous malformation alone would rise every year. By the time she was middle aged, her stroke risk would be in the 50/50 range.  This sucker needed to come out.

We hoped for a noninvasive option, and Dr. Kestle was good enough to call around for multiple opinions, both inside and outside of Utah.  Stereotactic radiosurgery and gamma knife procedures would have used beams of radiation to obliterate the malformation from her brain without pain or cutting.  Unfortunately, all the doctors who looked at her MRI agreed: noninvasive treatment was not an option, and traditional neurosurgery was definitely warranted.

August 7th is the big day.  We'll drive down the day before for a super technical, futuristic MRI that will use GPS technology to map out the surgeon's route through the folds of Miriam's brain to the malformation.  It's like geocaching, only smaller, I guess.  I'm very happy we live in the future.

The docs say we can expect to be in the hospital for four days, and they will not, I repeat, will not have to shave her whole head.  Since she'll be starting her 8th grade year just a couple of weeks later, this is kind of a big deal.

Miriam has gone from terrified to determined to impatient in regards to surgery.  We had a sad moment when she asked if she could just go back to the way things were before and not have to make such a hard choice between stroke risk and surgery.  By the time the day of decision came, she was saying, "I just want this thing out of my head."  This past Sunday, after having two big seizure in two hours (out of nowhere), she said she wished it was August already.

That was a hard day.  Fortunately for us, we have pretty empathetic cats who realized she needed some cheering up. (Forgive the grainy photos below.)  Men from our church were also kind enough to take a break from their Father's Day love fests to come and give her a blessing (Richard being an hour away at work).




































































Thankfully, giant cats are ridiculously comforting, and we haven't had a repeat of Sunday's seizures.

Even more thankfully, we've been blessed to see the best side of human nature through all of this.  People in our church congregation have shown love and support in the form of hugs, well wishes, and much needed treats.  Weight loss or no weight loss, there's just something about homemade apple pie and warm scones that says, "It's going to be okay."

Our Mat Camp prospects for the summer were changed dramatically by medical bills and otherwise tight finances.  Your remember how much we love MAT Camp, yes?  Knowing permanent leg damage following surgery is a real possibility and knowing this year's camp could be her last chance to dance, we swallowed our pride and looked into scholarship possibilities and were told immediately (4 minutes, people) that she qualified for a free pass to camp based on special circumstances. The camp also gave a scholarship to Cate in exchange for Richard working as a volunteer and working musician. Carolee Bowen and Shasta Wigginton are two of my favorite people.

You know who else is my favorite? Eric D. Snider.  His name has come up a lot on this blog because he's cramazing and funny and Richard and I have a secret couple crush on him. (Don't tell...unless he'd like that kind of thing...)  When he launched a Kickstarter campaign last year to fund a year's worth of his humor columns, I made a $100 donation to purchase some advertising for The Mother Load on one of his posts and profiled the campaign as an Awesome Product here.

A week or so ago, he emailed me to discuss the timing of my ad.  Knowing that an ad sending people to an inactive blog was probably counter-intuitive, I asked him to wait to run it until his next round of columns so I could get my act together.  As an explanation for my absence from the blogging world, I mentioned Miriam's upcoming surgery.

Things got crazy after that...the good kind of crazy.  Citing his well known and potent internet powers, Eric asked if this was a situation where a fundraiser might be helpful.  Pride effectively swallowed months ago, I responded that yes, goodness gracious, we could definitely use some help with our out of pocket medical expenses.  We emailed back and forth so he could have the information he needed, and yesterday, he rallied his fan base to come to our aid.  Here's his post. 24 hours into this thing, and they've already raised more than $500.

I'm not going to lie. Our couple crush for Eric has been blasted into the full on LOVE dimension.  If Richard and I were capable of having a baby together, we'd name it Eric/Erica and raise the child on his columns and song parodies and YouTube videos.  He's probably glad we can't have kids.  (I would explain why, but adding the words "You need a uterus for that" to this already awkward paragraph might cause the man to regret ever emailing me...)  

Life has been a little on the hard side, but we know without question that people are good.  The weight on my shoulders has been lightened so much by all of these acts of kindness and generosity, and my faith has been bolstered by these small miracles.  Thank you to everyone who has donated so far and for the many friends who have reposted and retweeted the link to the fundraiser.  The money is sorely needed, and Miriam has felt loved and comforted knowing people care.

So...am I a blogger again?  I can say with a surety that I am.  Whether or not my writing is worth anything to the world at large, it means a lot to me to have it back.  I'm incredibly grateful for that.

I'll keep you posted on the results of the fundraiser.  If you want to help, just click the donate button right here on this blog. All of the money will be going into our health savings account, so all of it will be paying for medical expenses only.  Prayers and thoughts and energy also welcome.

I'll leave you with a picture that can't help but make you smile.  As discouraging as this has been, Miriam is one resilient kid.  That's the kind of kid you want to help, no?