memories – CHASE AWAY CANCER

Walking Through The Door That’s Been Opened

“On my way to ER. Stopped at cross street for her ambulance…”

The sound of my father’s heart breaking through the text was almost palpable.

Back in the middle of the day, before my mom’s heart started beating like it wanted to come out of her chest, I glanced at the clock on the dust-marked dashboard of the van and saw I was late…again.

Chase had been able to go back to school a few days after the eye surgery. However, there could be no recess, no gym, and I had to come to the school and do his eye drops every day as the duration of the week required medicine to be administered every four hours.

As I headed into the left turn and the familiar road across town to his school, I felt the grumble rising in my heart. I’d had to stop what I was doing and negotiate a stubborn four-year-old into the van at his lunch time just to go cajole the bald, six-year-old patient into letting me do eye drops…again.

And then I started thinking about how most days, the hardest part of having a child like Chase post-treatment isn’t the threat of relapse. It’s the day-to-day giving of my time in extraordinary amounts. That would make a good blog post… I thought; Ten Things I Wish You Understood About Life With A Special Child…yes. It’d be trending-ly epic.

I know the dislike of sacrifice sounds a little crazy because as parents, as lovers of Jesus, and as human beings, we are constantly called to lay ourselves out for those around us in extraordinary and unusual ways, but wow, I fight it when it comes to Chase at times and I know it often boils down to secret, shameful, comparison. I look at other families around me and what they’re doing with their four kids or their six-year-olds and I suddenly chafe at my life and my “normal”.

I continued to fight and struggle through the day, mentally laying an inordinate amount of blame on the mid-day eye drops that had seriously taken less than 30 minutes of my time. But of course, I didn’t feel like being serious or literal. I felt like being sorry for myself and how hard things are when life gets interrupted by the constant call of the unusual.

Somehow, the day passed. After hearing about school, administering snacks, shepherding homework, completing another round of eye drops, and having a video conference for the book trailer, I called Bob to tell him my day had gone off the rails and dinner would be super late (again). And just as we were about to head out the door and pick up dollar tacos with friends, the text came from my dad.

The doctors use the words “atrial fibrillation” and then hyphenate it to “A-Fib” and it sounds like a medical drama show, but it really just means that the heart is at war with the body and nobody is quite sure why it starts, but my mom, she lay white as a sheet with her heart rate up at 200, feeling like something wanted to burst out of her chest and finally, when her arms and legs went numb, the ambulance came. In our vapor-short lives, things can change just as fast as a call to emergency response.

And suddenly the eye drops and dollar tacos and all of it disappeared and our kids ended up at another friend’s house so Bob and I could both go to the ER.

We were given the directions to the room, and as I turned the corner onto the A unit, my own heart nearly exploded out of my chest as I stood in front of the room I had not seen since I irrevocably followed the Lurie transport team out the door with my Chase on Tuesday, July 31st, 2012. The first cancer day.

Feeling physically faint as I had to pass the memory, we entered the sliding glass doors to my mom’s ER bay where my dad, his eyes filled with worry and love, was light-heartedly explaining to the humorless nurse how “You see, when I come into the room, Leslie’s heart goes all aflutter…haha…ha…” My whole life, this has been how he chooses hope and I love him for it.

By the end of the evening, the medicines had done their job, the color was back in her cheeks, and they talked about her “normal sinus rhythms” and used the neon green lines on the monitor as an example of her ability to go sleep in her own bed that night. And she hugged me very close and said “I’m so very glad you came.”

I carried those words and the joy-feelings of fellowship and prayer around her ER bed with me into the next day of crazy and eye drops and general life and it made me think: My mother’s heart is at war with her body and my life is still getting interrupted by little bodies on the regular, and I may yet write that post about living with special children, but I felt fulfilled despite the piles of undone things standing out in every corner of the house. And it was in this week of eye drops and hospital visits and dollar tacos that never came to be, I realized (again) that what I want for my life and what I need for my life are almost never the same things.

I want stability and normal and quiet days where my average moments could litter a home and garden magazine with their poetic beauty. God knows I need eye drops, special children, ER trips, and facing my hardest memories to keep me real and draw me closer to Him. Sometimes, you just have to walk through the door that’s been opened for you…

Moment by moment.

Fistful Of Band-Aids

How do you live out what you know? And how do you live out what you know when what you know is pain?

Chase has felt many needles. Needles for chemo, needles for blood draws, needles to keep him hydrated and pass life-saving medicines into his veins. So many times, his skin has been pricked and prodded – his hands, arms, chest, and even the heels of his feet. If you look closely, you can still see many of the scars.

And somehow, somewhere along the way, needles became synonymous with band-aids. This kid has accessorized with band-aids, played with band-aids, covered his arms with them in the hospital play room (which scared the living daylights out of his doctors who thought each of the ten band-aids up his arm were genuine) and competed against siblings for who has the most (spoiler alert: it was almost always Chase).

Band-aids have been a part of his life and a sign of his pain, and yet, this last week when his kindergarten class celebrated their “100th Day” of classes, Chase wanted to cover his “100 poster” with band-aids.

So, we sat at the kitchen table and covered a poster board in the little brown pieces of adhesive and we talked. We talked about gauze and flushes and old stories where he had screamed and been afraid. Sometimes just being around the familiar supplies is enough to trigger the memories. And then, just at the moment it all felt a little sad again, we decided to look at the things we were most thankful for in those memories. And you know what? There were quite a lot of things for which to be thankful.

These band-aids started as a picture of hardship and ended up on a poster full of memories. I can’t help but wonder if the moment pain crosses into beauty is the moment it forces us to be thankful.

And as he painstakingly wrote out “Chase 100” on the top of his poster, he paused for just a second to consider, and then added an exclamation point. As he finished, he turned to me and explained: “Chase. 100. Exclamation point, Mom. Do you know why?” He ran on before I could have answered if I’d wanted to. “It’s because this is happy. You put an exclamation point” his lips curled extra hard to form those words; “when things are happy.”

So there you have it . . . Lessons drawn from a band-aid, a poster, and a little boy who has been so brave.

Moment by moment.

On Being An Ambassador

Summing up a whole year is often like visiting a medical office for me: a dreaded, but sometimes necessary exercise. I hate the action of listing it all out because it can be so trite to gloss over and wrap up, but as soon as I start, all the painful, awful, funny, perfect, and wondrous things that have passed start washing over me and I never regret the exercise. One of the most amazing aspects of this last year has been Chase’s role as a national ambassador for the St. Baldrick’s Foundation, and this morning, in the last of the 8,760 hours of ambassadorship, we sat down early to reminisce over some of the opportunities: shaving his brother’s head, going into schools to meet with children and talk about cancer and chemo, getting to connect with so many people on something that has shaped us on such a significant level – to name just a few.

Memory is hard for Chase and he slumped down in the chair as I asked him what his favorite part of the ambassador year has been. “Can’t I just say that I love Dr. Lulla? He’s my favorite. Can I just say that?”

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago. — Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago. Photo credit: Jan Terry

“What about the time you made Aidan bald?” I laughed.

He slumped further. “Please don’t laugh about being bald. It hurts me.”

Reaching over, I picked him up and hugging him close, I explained that my laughter stemmed from his and Aidan’s precious hearts for each other, not their lack of hair. Never the lack of hair.

And then he settled into it. “I did like shaving Aidy’s head. That was fun. And I really liked doing the Pin Guard tournament with Miss Jen at school with the firemen. And I think I liked whenever they gave me a microphone to talk to kids too. Those were my favorites.” He stopped and thought for one minute more, and than as is his habit, he interrupted his own musings. “Also, I think that . . . Hey, Mom! I have a great idea! I want to make cards for kids who have cancer and chemo like me! The next time we go to my hospital, can I take cards to my friends like my Mia and my Lucas?”

And with that, the time for memories were over. But isn’t this the point of sharing our stories? Of being an ambassador? Reflection that leads to action. For Chase, in this moment, it was wanting to encourage other kids. And over this past year, as more and more have looked to encourage and action has been taken – from grade schoolers growing out their hair all the way to a US Congressman signing the STAR Act – thousands upon thousands of dollars have gone to change the outcomes. This is amazing!

Talking about St. Baldrick's at Madison Elementary — Talking about St. Baldrick’s at Madison Elementary

As 2015 comes to a close, we acknowledge the hard things that have brought us to this point, revel in the joy that keeps us going, are deeply thankful for all the ones around us, and look expectantly to 2016 for all that it will hold.

A huge thank you to the St. Baldrick’s Foundation for letting us help carry your message this year.

Healing In The Tears

The last couple weeks have been such a blessed break in many ways. Although Chase had chemo, it was so light that he didn’t need a single transfusion! These more “normal” days with no hospital are full of nothing and everything. I find myself actively being a wife and mother, nurturer and teacher in a way that I haven’t in months, but I’m also finding myself often in last summer.
I’m so thankful that I was cautioned by another cancer parent or this preoccupation would have taken me completely by surprise. The first days and months with cancer have been so intense and involve the daily fight to live and breathe on such a level that its only when I stop that I have the luxury to reflect…and feel. The misleading thing in all of this is that I truly believe that I have felt and thought and processed as we’ve lived each second, but it’s somehow different…even more traumatic at times. Flashes of memory often tear into my daily moments…

…that summer moment in our front entry way when I first saw Chase’s hand tremble uncontrollably

…the change in the brash ER doctor as he (with tears in his eyes) said “It isn’t good. There’s a very large mass.”

…watching the city street disappear out the door window of the ambulance as we pulled into the bay at the children’s hospital and thinking “I’m on the inside now…never on the outside of this life again”

…Bob calling me from the EEG room: “Chase is seizing almost constantly. They’re moving us to ICU. Somebody is coming to get you.”

…drawing my knees up and wanting to curl into a ball in the tiny, dim conference room as the neurosurgeon ripped our breath away with words like “malignant” and “tumor cells everywhere”

…seeing my baby again for the first time after surgery and hurting for him as he -bloodied, swollen and covered in monitors- rose to his knees in the bed and angrily screamed “I want my Mommy! I want my Daddy!” and the doctors and nurses sighed in relief that he could move and speak and know and I swallowed the guilt of not knowing how to touch him and comfort him with bloody stitches covering the head I had kissed every day…

These and many others are the litany of pictures and sounds and feelings in my brain that I believe will smooth and gentle with years, but know will remain imprinted until I draw my last breath in this broken world.

This is my daily battle: to acknowledge what has been while breathing in whatever normal is now, and still entrusting to God that which is yet to come.

I will never be able to leave these traumas, but I can control how they shape what is ahead…

“I wonder too…if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become places to see. To see through to God. That which tears open our souls, those holes that splatter our sight, may actually become the thing, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Anne Voskamp, One Thousand Gifts

Yes.

This.

My hurt memories push at it, but my soul cries for that Grace and Peace that is the only answer in all the broken. This that I see even in the pain…at times more clearly in the pain.

And so, I move forward…

Moment by moment.

The night before surgery: monitoring the seizures

Friends

This week, I’m on a cleaning rampage. As I was cleaning, I came across this …

Special memory, special friendships … We’ve known each other for years and know each other still.

I should have some classy quote on friendship or a beautiful poem. But I don’t. These are some of my friends. Good friendships are precious.

That’s all.

Tag: memories

Walking Through The Door That’s Been Opened

Fistful Of Band-Aids

On Being An Ambassador

Healing In The Tears

Friends

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