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 MomSeptember 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.

My darling Chase
My darling Chase

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…

Placing special markers on his spine
Placing special markers on his spine

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.

Hey, you've got to stay in shape if you're going to give out warm hugs all the time... ;)
Blood pressure cuff + stick arms … If anything can handle it, Dr. Ewoldt can 😉

Marking A Year Of Another Kind

Bob and Chase preparing for the MRI - Thursday, August 14, 2014
Bob and Chase preparing for the MRI – Thursday, August 14, 2014

We’re supposed to “throw back” on Thursdays and “flash back” on Fridays and today is yet another date to mark.  Recently, we’ve had an awful lot of “one year ago”, “two years ago”, and so on, but sometimes the days are really long, the years are short and stressful, and rehearsing our previous survivals and God’s goodness to us in them is the only way to keep breathing.  And so, we go back…again.

One year ago today, I stood in the barren kitchen of a newly bought house (a seeming symbol of a fresh start), staring out at the view that would be my new back yard, and listening to the voice on the other end of the phone as my stomach dropped: “His spine looks clear and overall, his brain looks amazing, but…”

Those words kicked off a season of deep shadow that has been some of the most difficult waiting since his initial diagnosis.  The every six week scans, the waiting for growth… 

But today, we are stopping to mark and remember that Chase has now lived for one year, one whole year with his tumor bed growths/radiation effects/whatever they are and he’s lived as fully and well as ever he can.  We’re so thankful.

It’s incredibly frightening to write these words -about how well Chase is doing and how long he’s gone without an issue- when he’s about 72 hours away from another MRI.  But no matter what happens in this next week, today is a good day and we’ll take it one breath at a time in the… moment by moment.  

Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deut. 31:8