childhood

6 Things I Learned My First Year as a Cancer Mommy

Cub at age 5, October 16, 2014 -- 4 days before his diagnosis.

Cub at age 5, October 16, 2014 — 4 days before his diagnosis.

Over the past year, I haven’t allowed myself to look back very often. When Cub was diagnosed with Acute Lymphoblastic Leukemia, I made a commitment to moving us forward, with our eyes on the prize of completing treatments and Cub once again being a healthy, happy little boy.

Today is the one year anniversary of his diagnosis, and in order to properly acknowledge the progress we’ve made, I’ve had to force myself to look back over what was inarguably the worst year of our lives.

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Cub doing some schoolwork while inpatient for a fever.

We experienced the emotional devastation of his initial diagnosis; being whisked away to Memphis for 6 1/2 weeks of Induction chemotherapy; a high fever that wouldn’t go away; being in isolation for 5 of those weeks; my baby losing his hair; watching him have numerous surgical procedures and enduring the pain of endless pokes and port accesses; my training to administer antibiotics through his port when we were alone in housing; the grocery bags of medication and supplies that I organized in the drawers of our housing dresser; having security deliver all our meals once we were placed in housing after 10 days in-patient because we were in isolation; Cub not getting to see or play with any other children; the exhaustion and loneliness;  and the weakness and incessant nausea caused by the medicines that were saving his life. The wonderful staff at St. Jude promised me it would get better, and it did. On December 8th — one day after my birthday — we found out he was in remission. It was time for him to move forward into the Consolidation chemo phase, and for us to go home.

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Cub and his bag of fluids, “Mr. Peabody.”

The Consolidation phase was tough — lots of nausea, new meds, and frequent 5-hour trips to Memphis where we would check into the Medicine Room of an evening to have Cub’s port accessed, labs drawn, and get a large bag of fluids attached. We decided to name our bag, as it would come with a portable monitor and shoulder strap. It would go back to the housing room with us, and it was quite heavy. Cub couldn’t lift it himself, so I carried it for him, and we went everywhere in tandem. We named his bags — alternating between Sherman and Mr. Peabody. He had to have the fluid in order to help his body properly flush the chemo treatments, and he would have to take a “rescue” drug afterwards in order to protect his organs from failing. He would always get nauseated on the windy Arkansas roads we took to get back home, but he never complained.

A few months — and several floor mats — later, we completed Consolidation, and Cub graduated to the final phase of chemo: Maintenance. I foolishly thought that this would be 120 weeks worth of a downhill slide. We would be going to Memphis less frequently, and get 3 out of 4 of Cub’s weekly chemo infusions at our local affiliate. Several weeks into Maintenance, Cub was scheduled for what’s called Reinduction — where his body is revisited by the early chemos of Induction. He was to have two reinductions. But, Cub had a rare side effect from a med called L-Asparaginase (we call it “asparagus”), and it caused him to have a stroke. Did you know 6-year olds could have a stroke?

That was the most terrifying experience of my life. The L-asparaginase can make the blood have more of a tendency to clot, or it can make the blood have more of a tendency to not clot. In Cub’s little body, it increased the tendency for BOTH. Cub developed an inoperable clot in his brain AND bleeding from blood vessels in his brain, but through God’s grace and the wisdom and experience of some very talented medical teams, he survived with no cognitive damage and minimal physical issues from which they expect him to fully recover. And, because he is considered low risk, his primary St. Jude physician was able to cancel the second reinduction, so Cub never has to take L-Asparaginase again.

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Cub enjoying an ice cream at St. Jude’s after an inpatient procedure.

Today, one year after diagnosis, we are 40 weeks into the last phase of chemo, with 80 weeks left. Cub has on average 2 physical therapy treatments per week, 2 occupational therapy treatments per week, one clinic appointment per week where he has labs drawn and receives a chemo infusion. He takes anywhere from 15-30 doses of medicine per day, depending on his treatment plan for the week, including 2 blood thinner injections that he will be taking until the brain clot is gone. We go to St. Jude once a  month for a spinal procedure wherein he is put to sleep and chemo is injected into his spinal fluid so it can wash his brain to prevent leukemia cells from developing there. In a few months, these trips will go down to once every 16 weeks or so.

This last year hasn’t been horrible, or lost time. It’s just been hard, and this Cancer Mommy has learned a lot about life, love, and motherhood. One day, this will all be behind us — everything but the lessons we’ve learned along the way.

Here are just a few of the many sweet lessons that swirl in my heart everyday. I picked six because Cub is six 🙂

  • I have survived the realization of some of my very worst fears, and come out stronger, braver, and yes — even happier. There is joy to be found in every circumstance — seek it out, embrace it, and let it empower you.
  • Every day, I sit in awe of my little boy — he has endured more in the past year than most of us will in a lifetime, yet he remains compassionate, creative, humorous, loving and joyful. Circumstances don’t define you – you define them.
  • Not everyone is able to walk this journey with us — it might be too much emotionally, or they have other things going on, etc. But, we have been embraced by SO MANY people who love us, walk beside us, send us encouragement and lift us up in prayer. Our darkest days inspire others to shine and share their light.
  • Life radically changed for us one year ago today, and at some point early on, I had to accept that. My work, my plans, my time and expectations are all now dictated by a medical protocol and all the unexpected things that accompany it. Be honest with yourself about what you can and cannot do – recognize your limitations, but don’t sell yourself short. Accept your reality and do your best with what you have every day.
  • We are traveling a long road to healing. Sometimes it’s exhausting. The Cancer Mommy can’t afford to get sick and run down. I’ve learned that even five or ten minutes of self care make a real difference in my personal well-being. Take a walk, get your favorite drink and sit on the porch, read a few pages of a book or magazine, or go lay on your bed with the timer set for 5 minutes. You have to take care of yourself in order to take care of those you love.
  • When our child is facing a life-threatening illness, our instinct is to dig in and sit vigil over them — to prepare for battle with all the focus and force of a mother protecting her young. And this is a good thing. But, we have to remember that he or she is a child, and this war is set against the backdrop of their childhood. Don’t let cancer take your son or daughter’s childhood — make an effort to let them experience the magic and wonder inherent to their little beings.

Sweet Suprise

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To say that a five year old can be impatient is an understatement. For them, the air is still electrified with constant discoveries assailing their senses in the best of ways. They are Magellan, Marco Polo. And the world awaits. How could they stand still? Why should they?

We adults, on the other hand, have spent several decades in conditioning. Our eyes closing to the wonders around us, and we would-be visionaries grew up to have mortgages and car payments, too many to-dos, toilets to be scrubbed and schedules to keep. We barely have time for sleep, let alone for dreaming. Really dreaming.

A few months ago, my little family and I were standing in line on a soccer field, waiting for my son to have his picture taken. The adults, myself included, were standing and staring, reining in the occasional stray child. The nonconformist rebels.

My son and his little friend were trying so hard to be still. “But Mommy, my body is telling my brain that it just can’t stay still much longer!”

Then, it happened. Her words came out of my mouth, unbidden. My mother telling my son and his friend to sit and look for a four-leafed clover. As she had told me to do countless times in a life long past.

Their bodies were still, for the most part, and their wills were occupied.

The little patch of clover at our feet that I don’t really remember seeing in the first place, was dotted with miscreant dandelions. Pretty patches of yellow in a sweet patch of green. They looked and looked, but never found a four-leaf. But during his search, my son occasionally picked a dandelion or two, and a couple of fragrant clover blossoms, and gave them to me.

“Mommy, I picked these just for you! Will you keep them forever?” Blue eyes hopeful.

“Yes, of course I’ll keep them forever.” A hug and a kiss, and a mother’s hand brushing against his freckled cheek.

I hold onto them for a while, then tuck them into the little side pocket of my purse.

Today, I was looking for something. A boring, grown-up something that I knew was in there somewhere.

Frustrated, I take everything out. Wadded up napkins, receipts, a pen, more receipts and some loose change.

My fingers scrape the bottom seam, and there’s something not a penny, or a Tide stain stick. Something soft and delicate, dry and crumply.

I draw it out. My little wilted waiting bouquet.

It had survived months in the crucible of my life on the go. Pounded down, smothered, by bills and checks and keys and my cell phone. Day. After. Day.

Still, they have color, and fragrance, and shape. Identity.

We were all Magellan once. I think we all are still. Where are you keeping your dreams? Your mind’s occupations? Are they dormant, glazed over by an “I want coffee,” “when will this day be over,” or an “I’m so tired?”

Go. Outside. Breathe Deep. Look for the four-leaves in your life. Look up. Look down. Search. If you don’t find one, it’s okay. You’ll find something else. Just keep your heart open.

The Language of Motherhood

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My husband and son, at the beginning…

My earliest memory of my mother is of her hands. Strong, soft and sure, one holding me fast by the arm while the other sudsed me up with a soft cotton washcloth. I was sitting in the kitchen sink. It was stainless steel, cramped, and cold against my back, even though it was summer. But she had me, and wasn’t going to let me go.

Now, looking back over the last 40 years, I can see my mother’s hands over and over again. Brushing my hair, scrubbing the floor, rolling out dough, pulling weeds, holding her Bible, ironing with steam, sewing a button on, making sandwiches, tucking me in, wiping away my tears, pointing the way, holding my hands and waving goodbye…

Sometimes, often in fact, during my own journey through motherhood, I wish I was more like her. She was a doer, always busy, always with a goal in front of her – she didn’t rest until her work was done. Our house was spotless. Her hands were always busy and full.

Sometimes, when I was young, I would get frustrated. Why can’t we just relax and have fun once in a while? I would ask. Because there’s work to be done, she would say. Won’t it feel good when we’re all done?

Now, I wake up in the morning, feed the cats, feed the dog, feed my son, get my son ready for school, and get myself ready for work. I get dressed and while I’m curling my hair, I see that the bathroom could use a sweeping. I should plan on going to the laundromat tonight after work, but my son has a music concert, so it will have to wait. Backpack? Check. Lunches? Check. I pull out of the driveway…did I make the bed? Uhm…maybe not. Geez, the flower bed needs weeding…I sure wish I was more like mom.

I look at my son in the rear view mirror, and we share a smile, my hands gripping the steering wheel in a tight turn into our busy, busy day. We laugh and talk. At the stoplight, I reach back and we hold hands for a brief moment, our secret signal to one another that everything will be alright. Then, we move on.

We get home at the end of our day, and I fix supper, we eat and do a few chores, and then there’s this precious window of opportunity – about 45 minutes before my little boy has to go to bed. The bathroom floor still needs swept, but I don’t do it. Instead, I sit on the couch with my son, and we read. Or tell stories. Or play Legos. Or watch Green Lantern. Or have a tickle fight. Or just snuggle.

The time goes by, and we say our prayers…a tuck here and a tuck there, and he’s off to sleep.

It’s 8 o’clock. I go into the bathroom. I forgot the broom. Why can’t I be more like mom?

I indulge in a pity party. Mom was a better mother than I’ll ever be. She worked so hard and loved so much.

Then, I hear her whisper in my ear. You love just as much. You work just as much. You are everything just as much, just different. You are just what you are supposed to be.

I came to realize that my mother’s love language was acts of service. Every jar of pickled beets, and every starched blouse; every hot meal, and every clean floor said I love you.

My love languages are words of affirmation and physical touch. So, every conversation about my son’s day at school, his favorite Skylander or Pokemon, and every snuggle on the couch says I love you.

So, mom and I are different, but the same.

Our love is different, but the same.

Our mothering is different, but the same.

It’s easy to compare ourselves with others, especially those we hold in high regard. It’s also easy to use that comparison as a way to tear ourselves down instead of building ourselves up without seeing the good that we do. We come to equate different with wrong.

Try to see yourself with loving, truthful eyes. That’s the way those who love you see you, and it’s the way your children see you, whether your bathroom floor needs swept or not 😉

 

 

 

 

What we Leave Behind

 

20140714_095551In the past, my mother had expressed concern over what she had to leave for her children. I remember her being disappointed that she didn’t have a lot of “valuables” to pass on, or a large inheritance to divide amongst her children, grandchildren, and great-grandchildren.

I would try to reassure her with words like, “Don’t worry mom, you’ve done so much already.” Or, “Mom, that’s not what matters.”

Still, for my generous mother who was a child of the depression, she was worried about supplying our needs far into the future – a future that she would not be able to reach into to help solve our problems.

My mother had known depths of need in her life that most of us are never burdened with experiencing. And she survived. And she made sure we did, too. It may not have always been fun, and it most definitely may not have always been pretty, but we did it. She did it.

Even after giving her family the greatest of gifts – love and inspiration, courage and strength, she worried. Mothers worry 🙂 What kind of legacy could she leave?

A few nights ago, I found my mother’s legacy in the words of my five year old son. As I was tucking him in for the night, stories read and songs sung, it was time for prayers. What had been a nightly request for grandma to feel better had turned into a nightly request for God to tell grandma hi, and that we love and miss her. That night, at that point, shiny little tears started pooling in my baby’s eyes.

“What’s wrong, sweetheart?” I ask.

“I miss grandma,” he answers with the tiniest of sniffs and the biggest, bluest eyes. He looks at me, questioning. Hurting.

“I miss her, too,” I answer as I wrap my arms around him. “Why don’t you tell me something you miss about grandma?”

I smile to myself and in the milliseconds before he forms his answer, I anticipate a flood of responses. Grandma always had Tootsie-Rolls in her candy dish just for him. She and Uncle Jon always had a bird feeder that needed filling, or a hole that needed “dug” with his little plastic gardening set. Freshly baked cookies with milk in his special blue dinosaur cup. Happy memories.

“I miss her loves!” The words burst out and hang in the air, a look of desperate longing in his little face.

My heart is full of surprise and amazement at the depth and authenticity of my son’s wise-beyond-his-years words. He’s walked beyond the Tootsie Rolls and plastic shovels, Christmas presents and quarter bribery for his good behavior into the heart of the matter – into what really matters.

I held him in my arms and agreed that grandma gave the best loves.

“You know, grandma’s loves are up in heaven. That’s part of what God takes with Him when we die. So, all those loves are still there for you.”

He smiles a missing-his-first-tooth little boy smile and starts to blow kisses to heaven, giving some of the love back that had been poured in.

My mother left a legacy greater than riches or material security. She left a legacy of love that will reach far into the future for generations to come. What will you leave behind?