CHASE AWAY CANCER

Of Dirty Dishes…

One late night this week, it occurred to me that my kitchen might need a little attention…

Actually, I got the idea after my kitchen practically jumped out and attacked me.

Oh my word, I’m cringing even looking at it… And I’m cringing even more, because, I took this second picture significantly into the cleaning process and considered posting it instead. I secretly wanted this to be the messy kitchen you saw that might possibly promote me to an organized-neat-freak-whose-house-is-so-clean-at-all-times-that-the-tiniest-mess-is-a-disaster in your mind. I actually considered downplaying the mess to somehow make me look better.

If I’m honest with myself and with you, my house is messy far more than I’d like and I have proof of this pattern, because the other day, when I cleaned just for the sake of general responsibility and health, Darcy walked in and gasped: “Yay! Is Grammie coming today?” [cue the psychological damage, please…]

When we first got married, a very wise woman gave me advice on carving out time and making priorities and our many conversations would go like this: I’d ask “But what about this good thing? …or this good? …or that better?” And she’d quietly smile and knowingly state:

“You’re saying ‘no‘ to one thing to say ‘yes‘ to another – your ‘no‘ to that social commitment is a ‘yes‘ to the commitment of your relationship and making time for it – the best thing.”

I love this idea and I think it bends out into my home life and family life too.

When one of my children needs extra counsel and love, when there’s a writing deadline, when a 4th grade landform, a 1st grade corn celebration party (for real, it’s a thing), and a kindergartener’s reading homework all coincide – and they all need to be addressed at the same time, something has to go so I can keep breathing, and that something (for me) is usually the dishes.

One of my favorite phrases is: “There are only so many hills you can die on and this shouldn’t be one…” (Seriously, I’ve long considered a needlepoint or canvas…) And so, after what feels like a defeated week, I’m posting a picture of my dirty dishes. And I hope they encourage you! (weird, right?)

Because sometimes, whether in casual conversations or on social media (particularly the latter), it’s easy for me to feel shame when I see the best and most polished in others’ lives and then I feel terrible for not being able to “do it all”.

For me, saying ‘yes‘ to my children, to my husband, even to something like writing, often means letting something like the dishes go for just a minute. (or, you know, two days…[double cringe] )

I promise, it doesn’t look like this all the time, and I definitely don’t want to hold up my dirty dishes as an example because each person’s “saying ‘no’ to say ‘yes’ moment” will look different, but for me, this is real, so I’m coming clean over the dirty today – this week, I said ‘yes‘ to my family…and the dishes took a little longer to get clean. Because most of the time, my life doesn’t wrap up all neatly like a pretty package…

And I need to remember to take even the dishes…moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Ps. 90:12 (NLT)

This Is Love

Seven years ago, right around this same time, I stood, holding Bob’s hand, Aidan kicking in my stomach, and stared at the stern, older gentleman behind the desk and dais in front of us.

His position in the room was raised to help indicate his position in the building – for he was a judge…the judge, to us. Our papers lay in front of him as he weighed the final decision in the case, and then his words came, directed to the husband at my side.
“This adoption is done now. It’s final. And you… [he waved the gavel in Bob’s general direction] I have words for you. You didn’t have to do this, but you did it anyway and I want you to know that you’re a man of exemplary character.” And then, turning to me, he made sure I had heard the words that Bob has jokingly said should be framed ever since – “You know that, don’t you?”

Bob had taken the daughter born into my arms alone and made her the apple of his eye and his firstborn with a knit beauty that surpasses even blood and DNA. And now, seven years later, it’s so strange to write those words because it’s as if he has always been her father – in fact, I believe he was destined to be that person for her.

And forever, there’s this living, breathing picture of adoption – one person to another saying…

“I don’t care where you came from or what you bring with you, but I LOVE YOU, and what’s more, I want you to be with me forever and I’m giving you my name.”

“For everything comes from Him and exists by His power and is intended for His glory. All glory to him forever! Amen.” Romans 11:36

Moment by moment.

Bob and Darcy - September 2008 — Bob and Darcy – September 2008

Being A Cancer Mom

This is a post from September 2014 – written especially for the Mary Tyler Mom “September Series” – cancer stories from cancer parents. It was written within a week of Chase’s bad scan and chronicles some of the difficult, unusual aspects of this journey.

To be able to read this a year later without significant change in the story is a great gift. -MbM-

I’m a cancer mom.
There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.
But what does that mean to me? Just this…
It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.
It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.
It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.
It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.
It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.
It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.
It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.
It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.
It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.
It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.
It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.
It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.
It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.
It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.
It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.
It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.
It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.
It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.
It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.
It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.
This is what it means for me.
I’m a cancer mom.

Chase’s Story [VIDEO]

Have you ever seen this video of Chase?

If not, I highly recommend it. And even if so, feel free to watch it again… We have been so blessed to partner with the St. Baldrick’s Foundation this year and are continually thankful for the platform they give us to share Chase’s story with so many.

-MbM-

[Our deepest gratitude to the incomparable Matthew Lackey for his mad, crazy video skills. Also, a huge thank you to both Jane Hoppen and Kristen Thies for all they did to put together the finished product and the time spent filming it.]

The Good, The Bad, And The Same

Pre-procedure game of "Got Your Nose" was pretty epic... — Pre-procedure game of “Got Your Nose” was pretty epic…

Monday

He lay on the pre-op bed and absolutely knocked us over:

“I will do a good job and I will be fine because I’m a survivor, okay?”

The medicine kicked in and he asked me to text his home healthcare nurse and let her know he’d been brave for the needle in his arm. And then, with a sigh, he passed into oblivion again for yet another MRI. I wish I could tell you the number but I’ve lost track…his 30th? …40th? Yeah, there have been a lot.

"Tell Miss Joanna I'm doing it, okay? I give you permission to tell her." -Chase — “Tell Miss Joanna I’m doing it, okay? I give you permission to tell her.” -Chase

Tuesday

Despite a brief meeting with Chase’s neurosurgeon on Monday afternoon, the final word came, as it always does, from neuro-oncology regarding the MRI. The cysts appear to have grown again, but Chase’s spine looks clear, his condition is beautifully stable, he isn’t having seizures, and so, we continue to wait. If the cysts continue to grow, he may need a biopsy or some other surgical intervention, but it is not the right time for those things. And so we wait some more…

This is bad because nothing should be growing.

This is good because nothing is growing fast or harmfully.

This is the same because everything is growing marginally as they has been all along and we’re pretty much exactly where we were three months ago: watching, waiting, and scheduling another MRI in a few more months.

Out of the tube and awake...barely. — Out of the tube and awake…barely.

And as I write these things and feel a little weary as we start the fourth year on this AT/RT road, I’m mentally checking myself for complaining about a living, breathing son who probably shouldn’t have survived more than six months, some three years ago. The scan results comes down to what they always do: perspective.

Stuck in the wait a little while longer and choosing joy… moment by moment.