Monday, November 14, 2011

There was a moment today when I laid down, covered my face with a shirt (yes, dirty laundry scattered about my room, so when I reached for the nearest thing, I grabbed a shirt -- a cute light blue hoodie. A hoodie passed down to me from my mom because I don't shop). I covered my face with the hoodie and cried.

I cried because there are days when I am the worst mom. Moments when I yell and have the meanest look in my eyes. And that is never, ever the mom I thought I would be.

I cried because we have changed our plans so many times in the last 6 years. This roller coaster the kids have been riding. And I can't blame cancer for all of this. In fact most of our moves and life changes have been cases of the grass being greener over there.

And frankly, right now, the grass is pretty green. So why don't I just sit down in this field and have a picnic with my kiddos?

My tears today, the worries that brought them on, are trivial. And not only by comparison to cancer.

The little red-headed monkeys are happy and healthy. They have friends and loving, supportive teachers. They are growing and thriving.

So I looked back at our Caring Bridge post from this day in 2008. I was so sure it would be bleak and depressing and remind me of just how lucky we really are. Instead, this is what I found:

"Just a quick update:
We are home....finally! L is doing very well and so are the rest of us. We've got a few days of being homebodies, then it's back to Brenner."

So it revealed something else, even more important. We were in the middle of hell. And we found reasons to smile and use exclamation points!

We are home now. We are together, even the dogs! And even though I had a bad day, I'm not going to dwell on it!

Saturday, January 1, 2011

My Cup Runneth Over ... could I get a new drink?

The kids are on day 6 of fevers.

Lindsay declined to stay up to celebrate the New Year saying, "I'm sick. I need my rest!" They do need their rest. Hell, we all need our rest. We have had very little sleep since Monday. Not cancer-parent sleep-deprivation, but we're so out of practice!

Lindsay has managed to sleep well despite her low grade fevers and annoying cough. She's remained pleasant, even helpful spirits. Michael ... not so much.

His fever has been in the 101-103 range for much of the week. He and Lindsay both slept well Monday night and Matt and I made the mistake of saying, "Wow. They slept really well! It could've been way worse." Yep. Jinx.

Michael hasn't slept well since Monday. He wakes up when Lindsay coughs, covers his ears and yells, "Her coughing is (cough cough) too (cough cough) loud!" Yes. That is Michael coughing while he complains! He cries out "I scared! I need to snuggle!" And when I bring him to bed he sees dad and screams, "I don't like dad! I don't want to be near dad!" When Lindsay tries to get in the bed and snuggle he screams, "I don't like Lindsay! I don't want to touch Lindsay!" When we try to give him medication - for fever, for cough, regardless of flavor, he clasps his hands tightly over his mouth. We count patiently to 3 ... 1 -- 2 -- 3. Nothing. "Michael, you need this medicine to help you rest. What can we do to help you take it?" Nothing. "Michael, would you like to rinse it down with juice?" Hands still clasped tightly, eyes bugging out of head.

So I raise the stakes.

"Michael, we can do this the hard way or we can do this the easy way..." ... This is a line I stole from Ashton and Big Guns. It seemed like a good idea at the time. Ashton and "Big Guns" are cancer-fighting super-hero parents. Big Guns apparently uses this line for oral meds with their little cancer-fighter. Umm... Lily ... did you talk to Michael? Did you share your book, "101 Ways to Avoid Taking Medications?" Because "we can do this the hard way" resulted in sticky cherry syrup flying across the room leaving what can best be described as a blood spatter stain on my 400 thread count sheets. 4 letter words were muttered (by Matt, for once ... not me!). Attempts to medicate were aborted.

After the fact, we giggled. We reminisced about Lindsay's behavior in the hospital. Screaming. Kicking. Crying. Refusing meds, procedures, etc. And we said to ourselves, "Oh, poor baby. She has cancer. She's so scared!" And we were ENDLESSLY patient with her.

Fast forward two years. And 3 year old Michael (same age as Lindsay when she was being treated) is now behaving the EXACT same way! No cancer. No hospital. No scary procedures. And we are not even close to being as patient. I should be saying "Poor Michael. Second children are so neglected. Especially when first children dealt with cancer!"

In all seriousness, I sometimes wonder if parents have a limited amount of patience. Like a cup that gets filled when you decide to have kids. And you can dole out little bits here and there but it doesn't get replenished so choose your moments of patience wisely. I doubt this is the case, but ... Matt and I were SO incredibly patient with Lindsay as a baby. She was "colicky" for lack of a better word. We walked her, bounced her, used the sling, the baby carrier, white noise. We did not let her cry it out. We did not force her to go to relatives or friends who wanted to hold her but didn't know how to soothe her. We did not sleep much that first year. Then Michael came along, the easy baby. The sleeper. The smiler. The "put me down I need a nap, please" baby. And life was great. Then cancer. WAY more patience being poured from the cup.

And now Michael is three. And though he is still my sweet little fella, he is 3. Terrible threes, anyone? And Matt and I are WAY less patient than we ever were with Lindsay. And if you put their behavior side-by-side, played a video, I'm guessing we'd see that Michael's "3 year old behavior" is way tamer than Lindsay's. Where did all the patience go?

So while I usually avoid New Year's Resolutions, this year's will be:

1. Be more patient.
2. Find ways to replenish the Cup of Patience.
3. As much as possible, draw from the children ... let them refill the Cup of Patience.
4. Get a pedicure. This has nothing to do with the Cup of Patience. My feet are really crusty and need some attention. I figure if it's a New Year's Resolution, it'll happen ... right?

So, how do you refill your cup?

Sunday, December 26, 2010

A Nearly Normal Christmas

Since Lindsay's diagnosis and remission, holidays have taken on special meaning. Even though I am grateful for every moment we have, every tradition that cancer could have stolen, there are often tears welling in my eyes. I think of what might have been. And sometimes those are tears of "what may come".

But not this Christmas. Only two years post-cancer, only our second Christmas in remission, and somehow I managed to make it through Christmas with almost no cancer tears! There was joy and very little "what if". The children delighted in the Christmas lights, the stockings, even their cousins' elf on the shelf (apparently not phased by the fact that Elfie was there to guarantee good pre-Christmas behavior). And I delighted in the normalcy of it all.

Of course I grieved for the children who have lost battles this year. I felt sad for the children newly diagnosed. I empathized with the mother's trying to make the most of Christmas in the hospital. But none of this was amplified by Lindsay's battle. It was merely the sadness any mother would feel when they hear of a child suffering.

Christmas may be over, but I will always remember this year as a huge milestone. Yes, there can be normal after cancer. I feel it more and more every day!

Sunday, October 10, 2010

My Survivor

Just 30 hours after hearing Lindsay's bloodcounts are good (still in remission!) we celebrated with 3000 blood cancer warriors. Raleigh's Light the Night 2010 was awesome. We played, picniced, walked, celebrated, and remembered the warriors who lost their fight.

Saturday, August 21, 2010

cancer week

Cancer week is almost over. Two years ago today was the day before port surgery, the day before we started chemo, the day before the beginning of who the hell knows. Two years ago today was the worst ekg in the history of ekg. Two years ago today was the most amazing echo tech and the smoothest procedure up to that point for L. Two years ago today was a 4 hours pass to leave the hospital - one of only two she would receive during the 6 months. We went to TGI Friday's because we didn't know a thing about W-S. And guess what? It was a blast. Papa Tom and Uncle Kevin came. I HATE that my mom missed it. She had M and we had no idea we would be getting a pass. L ate cheesy yumminess. We were expecting her appetite to fall off the next day with chemo (little did we know she'd be a chemo warrior princess). But clearly I am digressing.

Cancer week is almost over. And it has mostly been a week like any other. Except I have been full of tears like I haven't been since the hospital. Some of this is because of friends who have relapsed. Some of this is because of hormones (no, I'm not pregnant). Some of this is because I had three hours alone in the car to think way too much.

And as cancer week winds down, school continues to go well. We are doing a math project that involves the seasons. We took a picture of the kids in front of this tree and will re-create it through out the year as the seasons change. L (who generally is not a fan of having her picture taken) consented since "it's schoolwork!". M is just happy to get to wear a dress outside. Life is good. Despite the fun we are having, I find myself constantly fretting over the fact that L will not be in kindergarten. Oh, life could be so much more normal and simple. But then I would be doubting that decision for a million reasons too. And she is really happy to skip down the homeschooling path hand-in-hand.

Tuesday, August 17, 2010


I'm awake tonight. 2:37:28 am ... not atypical.

The reason I'm awake is that I had a headache. And to avoid it turning into a migraine, I took Excedrin. And now I'm wide awake, but, thankfully headache free.

The reason I'm explaining why I'm awake is to point out that I'm not awake because today is the 2 year cancerversary.

Though, I will freely admit that my Excedrin-interrupted sleep was punctuated by intense, but undefinable fear about the children's safety and well-being. Each time I awoke (until I finally gave up and logged on), I had a sense of either panic or dread. Hmm...

At any rate, today is 2 years to the day that we found out Lindsay might have leukemia. I say "might". The doctors said, "probably" and "almost certainly". Matt and I were in total denial. I just knew it was going to be Rocky Mountain Spotted Fever or some bizarre virus that her body would beat the hell out of. Well, shit.

The interesting thing about leukemia is that we "count" from the day she was diagnosed. Which makes this horrible day a cause for celebration. Counting is relevant because the farther away you are from diagnosis, the better your odds are. Two years out means your odds of relapsing at about 5%. Three years out means you're likely to stay in remission. Ten years out means secondary cancers are much much less likely. 20 years out means, "Hey, 20 years ago I had cancer. Isn't that f-ing crazy? Let's have a glass of wine and roll our eyes over how ridiculously terrified my parents were."

Happy cancerversary. We won't be celebrating... any more than we do every day :-)

Wednesday, August 4, 2010

Embracing Embarrassment

I've been thinking a lot about embarrassment lately. Lindsay tells me I've embarrassed her from time to time. Mostly after an academic exercise. When she figures something out quickly. I may simply smile. I may mention her success to Matt or my mother. "Mom," eyes rolling "you're embarrassing me." It's one of the few times she whispers.

Embarrassment. What is it? What is its utility?

I spent a little time online looking up the word, to be sure I was spelling it correctly. I found a blog about a spelling bee entitled "Spelling Bee Embarassment". Without a hint of irony. But I digress.

What is the value of embarrassment? And why is the pleasure someone takes in our accomplishment both rewarding and painful? Even at the age of five!

As a teenager, I remember repeatedly feeling that my father was trying to embarrass me. In retrospect, I don't think I was wrong. I also remember feeling embarrassed by my mother, though I don't believe that was her goal. At that time, I vowed to never attempt to embarrass my kids. But how can I help but smile when L succeeds at something? When she relishes a discovery? When she sings her heart out. And if I don't smile? If I don't enjoy her joy? Will that harm her more than the embarrassment of my pride?

I imagine she would just die of embarrassment if she knew how I go on and on in this blog!