motherhood

52 Weeks

FullSizeRender (1)52 weeks from today, my little boy Cub will be sitting bare-chested in a vinyl therapy chair. He and I will put on little yellow masks as a clinic nurse opens a sterile packet containing gloves, cleanser, and a 3/4 inch needle with a tail made of narrow plastic tubing.

He’ll squirm while she wipes off the numbing cream I applied to his skin before we left home.

He’ll whimper as she scrubs his skin — skin chemo has left raw and neuropathic.

After the cleanser dries, he’ll straighten his back and jut out his chest while holding a raggedy little stuffed elephant in his lap. “Don’t count! Don’t count!” he’ll say anxiously as the nurse brings the needle close.

“Okay, I won’t count,” she’ll say, pushing the length of the access needle through his skin and into the silicone medium of his titanium port.

She’ll draw a tube of blood. Waste.

She’ll draw another tube of blood. Labs.

She’ll flush the line while Cub sucks apple juice through a straw because he can taste the saline rushing into his bloodstream. Taster.

We’ll spend a few hours waiting for his chemo to be prepared and delivered, and after another flush and more juice, the chemo will be introduced to Cub’s line, beginning its slow drip down and around several feet of tubing into his little body.

We’ve done this before.

On this day, my son will have been receiving chemotherapy for over 2 1/2 years.

It’s not his first chemotherapy treatment, but on this day 52 weeks from now, it will be his last. He will ring the bell victoriously, and we will spend the rest of our lives celebrating every little thing.

52 weeks from today, and my mommy heart can hardly wait.

 

 

 

 

 

 

.

 

Heartbeat

FullSizeRender

A small crystal clock that once belonged to my mother sits on my nightstand. One classy thing amongst my scattered clutter — 16 books, 2 hair clips, my son’s Legos, and a winged Skylander.

But.

When the world is quiet.

When I’m quiet.

I hear the tick tock beat of time slow and steady.

Her clock. From her nightstand.

Now mine.

In the quiet, she speaks to me of time and timelessness.

Tick Tock

Tick Tock

I’m still here with you.

When I lay in the stillness of night, I imagine her listening to the same the tick tock beat,  and wonder what she thought about.

Then I realize that, at least sometimes, it would have been me.

And I smile.

Thinking of her thinking of me.

Tick Tock

Tick Tock

 

 

 

What I Didn’t Say — Shedding Light on the Realities of Childhood Cancer

unnamedWhen I posted on Facebook that we’re taking Cub, my son, to the hospital because he has a fever, I didn’t say that whenever his temperature reaches 100.4, we are supposed to have him to the hospital within 1 hour so broad spectrum antibiotics can begin being administered through his port immediately, or we might not be able to beat whatever is causing the fever.

When I posted that Cub had severe hand and foot pain, I didn’t say that some of his chemo meds cause severe, usually temporary nerve pain (exactly like diabetic neuropathy) in his extremities and sometimes throughout his whole body. Sometimes, it causes excruciating pain just to be touched.

When I posted that Cub was constipated, I didn’t say that some of his meds cause his bowels to fall asleep. It is not a matter of eating more fiber, drinking more water, or getting more activity — a part of his body actually shuts down.

When I posted that he had severe cramps, I didn’t say that he’s receiving maximum doses of Miralax, Lactulose, and Senna to stimulate his bowels because an impaction removal procedure is not possible on a patient with a compromised immune system because it could cause a devastating infection.

When I posted that his counts were a little low, I didn’t say that his ANC had dropped to 200, or 40, or even zero, leaving him with literally no immune system. This is usually caused by the chemo meds.

When I posted that a friend brought me lunch, I didn’t say that out of a 72-hour hospital stay, Cub and I were alone for 69 hours of it.

When I posted that we were tired, I didn’t say that we had already been dealing with nerve pain for a week before being admitted to the hospital, and neither of us had had a full night’s sleep in almost 2 weeks.

When I posted that he was experiencing some relief, I didn’t say that he was still suffering from such severe nerve pain, that he couldn’t hardly roll himself onto his side to get out of bed, and if I touched him to help him walk, it would make him scream.

When I posted that he’d been feeling a little lonely and blue, I didn’t say that because of his immune system, he’s only had 4 playdates in the last year, including a belated 6 1/2 birthday “party” because he was in the hospital on his 6th birthday. And, I didn’t say that he receives a strong dose of steroids 5 days out of every month that causes a range of emotions – from hyperactivity to depression.

When I posted “only 83 weeks to go!,” I didn’t say that my 6-year old son has a total of 2 1/2 to 3 years of treatment, with 1 year almost behind him. I didn’t say that he sometimes thinks he can’t do it, and that it’ll never end, so I made him a chart to mark off every week, with the last week marked in red.

When I posted #lovemyboy #leukemiawontstopus #braveboy, I didn’t say how sometimes I feel so unworthy of this journey, yet my heart swells with pride for my son even on the hard days. Especially on the hard days. I didn’t say that I have a 6-year-old son who has endured more medical procedures and medications than most of us will in our lifetime, yet he can still laugh and play and love and dream, and teach his mommy how beautiful life is, even on the hard days.

Especially on the hard days.

 

That Time I Broke Down

10689854_333889466781873_2909414857651312247_nThe ride to Memphis took almost exactly 5 hours. We left at 7:00 in the morning, and I was exhausted and numb.

At first, Cub watched the receding traffic out the back windows, took stock of the various medical equipment stowed away in see-through cubby holes, and laughed at the funny sounds the tires made on the changing road surfaces.

And, at first, all I could do was watch him. I soaked him in as if I was a dry, crusty sponge desperate for the waters of life.

Eventually, he fell asleep, and a member of the EMT transport team asked me if I’d ever been to Memphis.

“No.” I smiled, dragging myself to the surface for a little small talk – wanting to be polite. These men were working a double shift to get my son to St. Jude’s as soon as possible.

As we chatted, he told me he was a Memphis native. He had traveled a bit, but always came back home. He told me the mystery of Beal Street and told me the best place in town to listen to the Blues, if I ever got the chance. Then he started telling me about St. Jude.

He told me how they only have about 100 in-patient beds. He told me how he was amazed that we were getting in less than 24 hours after diagnosis. He told me how it was the best hospital in the world for “what your boy has.”

His words spoke hope to my aching heart. Suddenly, we couldn’t get there fast enough. I wanted to just get started – to have someone, an expert, tell me what I needed to do to make my son healthy, and then do it.

When we drove across the bridge that turns Arkansas into Tennessee, I couldn’t see a thing in front of us. I could only see what we were leaving behind.

We arrived at St. Jude’s, and were unloaded into an isolation area that seemed so foreign, even though in the last 5 weeks, it has become a second home. We were embraced with kindness from the cleaning lady to the head nurse to the flurry of Specialists, Residents and Fellows we saw in those first hours.

A Fellow came in and explained that he was sure that the next day’s bone marrow test would show that Cub has Acute Lymphoblastic Leukemia, or ALL. He said that what they didn’t yet know was if it was T-Cell or B-Cell. He also said that Cub had the most common kind of childhood Leukemia, and the one with the best cure rate: 90%.

90%? The doctor in Springfield had said 96%. No. We NEED that extra 6%.

I nodded my head a lot. I said, “Okay, okay,” a lot.

I signed the necessary paperwork.

A nurse showed me around the floor a bit while Cub was having his vitals taken. Again.

She showed me the community shower for the parents, and the washer and dryer for the parents. She showed me the nourishment room where I could go to get Cub an apple juice or graham crackers to help settle his stomach in the middle of the night.

I nodded my head a lot. I said, “Okay, okay,” a lot.

Then she asked if I had any other questions.

I struggled to keep my composure and said something like, “The only other real question I have is how do I make sure he’s in that 90%? He has to be in that 90%.”

She put her hand on my shoulder and said, “He will be. He WILL. The cure rate is more than 90%. You’ll see. And right now, the best thing you can do is be strong for him because he’s going to be looking to you to know that he’s going to be okay.”

I nodded my head and said okay.

A few minutes later, I stole a moment of privacy to call one of my friends.

“What do I do? I can’t guarantee anything! I can’t make sure that he’s going to be okay! How do I do that for three years without knowing he’s going to be okay?”

I was panicked. In tears. And terrified.

My friend said something like,” He will be, Marilyn. He will be okay. And think of this. What do you want these three years to be like for him? And for you? Do you want to get to the end of these three years, and he’s fine, and they were filled with fear for nothing? What do you want to see when you look back? What do you want him to see?”

Boom.

The answer to her question wasn’t hard to find.

I want to see love. I want Cub to see love. Every day.

The Beginning

Cub black and white schooljpgMost of us start our day with the idea that it’ll be routine. Most of us don’t expect a cataclysmic, life-altering, devastating event, unless maybe it’s Monday.

October 20, 2014 was a Monday.

I started the day as I do most Mondays – in a rush for work. I kissed my son goodbye (it was his last day of fall break), scrambled to find my keys, and forgot my lunch. Like I said, routine.

Later that morning, I called the pediatrician’s office to schedule a follow up. Cub, my 5 (almost 6) year old son, had just finished a course of antibiotics for pneumonia, and the doctor had thought he heard a heart murmur. Hence, the follow up.

Receptionist: “Oh, it looks like we have an opening at 1:45. Will that work for you?”

Me: “That’s perfect!”

Off work early on a Monday, spending the afternoon with my little boy – a nice break from the mundane.

We didn’t have to wait long to see the doctor – just long enough for Cub to enjoy the fish tank. The doctor said Cub’s lungs sounded clear, and there was no hint of a heart murmur. It must have been caused by the pneumonia and had faded away.

The doctor and I shared a bit of small talk as he typed in the computer.

Me: “So, last Friday at parent/teacher conference, Cub’s teacher mentioned that she and some of the ladies at the school thought that Cub was looking a little more pale than usual. What do you think of that?”

Doctor: “Hmmm…well, let’s see.”

He proceeded to examine Cub’s eyes, palpate his neck and stomach, and look at the palms of his hands.

Doctor: “You know, he does look a bit pale, but the whites of his eyes don’t look yellow, so I don’t think he’s jaundiced. Let’s just do a blood test and check it out.”

We walked down to the lab where they did a finger stick, and we were told to go on home. They’d have the results later that afternoon and would give me a call.

Fifteen minutes later, Cub and I were in the Sonic drive-through. I was buying him a slush – green apple – for being good at the appointment, when the doctor’s office called.

Receptionist: “Mrs. Robertson? Are you still in town? We’d like you to come back to the office. There was something in Cub’s lab work, and the doctor wants to do more tests.”

It wasn’t what she said that made my heart beat faster. It was how she said it – something in her tone. A depth of compassion that felt out of place.

I told her we’d turn around and be back in fifteen minutes. I called my husband and told him to meet us there. I willed the ice that was snaking through my veins to back off and focused on my breathing while stealing glimpses of my son in the rearview mirror. He slurped his green slush and played with his straw – oblivious to the fear building in my heart. I tried to soak him in – to surround his little self with all of my mother’s love, to protect him from something for which I didn’t yet have a name.

Thirty minutes later, Cub was being admitted to the hospital for further testing. His pediatrician had told me that Cub’s counts were exceptionally low – so low, in fact, that if an adult had those numbers, he wouldn’t be able to get out of bed. The doctor was kind, politely hedging around the elephant in the room. But, because of my mom’s recent battle with leukemia, all the terms rang familiar. Too, too familiar.

I stepped up close to the doctor, and asked, “Do you think it’s leukemia?” He said, “With his counts, that would be a very real concern.”

The next few hours felt like a dream sequence. A part of me holding onto the vague possibility of a virus, but nothing could push away the very real probability of a cancer diagnosis.

I was able to make a few phone calls. I helped the nurses hold down my son while they put an IV in his ankle. I tried to explain why we couldn’t go home just yet. I smiled and ordered him macaroni and cheese from the cafeteria.

Around 10pm that night, the hematologist took me and my husband to an empty room where she had set up three chairs. A very gracious woman, she explained some of the tests they had done, and a little bit about the functions of various blood cells. Then she told us she believed Cub has Leukemia.

I heard her words, delivered with compassion and professionalism, though I tried desperately to reason against what my heart already knew to be true.

Childhood Leukemia. Probably ALL (Acute Lymphoblastic Leukemia). Over a 90% survival rate. It’s the most common childhood cancer, and he has good odds.

Good odds. Good odds? I hate that term. It makes me feel like I’m betting on a horse.

I wish I could say that I was that person who knew from the very beginning that everything would be alright. That I knew God would heal him. That we had nothing to fear. But, no. I wasn’t, and I’m not.

No. In those first few heaving moments, my raw, primal terror was louder than my faith. I have lived enough to know that we don’t always win. Win. How could I guarantee that 90% win? My mother’s heart went into an adrenalin-fueled panic. Cub has to be in that 90%.

My husband and I sobbed while the doctor sat and held our hands. We sobbed while she prayed over us and our son. We sobbed while she waited for us to catch our breath.

Then, we talked. “We will have to transfer him tomorrow. You have three options for where to start treatment. Barnes, Kansas City, or St. Jude. We are a St. Jude affiliate, so if you go there, you can do some of your treatment here. But, the choice is yours. I’m not trying to sway you one way or another.”

I looked at her, putting my hand on her knee. “If this was your son, where would he be tomorrow?”

She smiled. “There’s no doubt – St. Jude.”

I sat up, shared a knowing look with my husband and nodded my head. “Then Cub is going to St. Jude’s.”

I waited until Cub fell asleep to run home and pack a bag. It was midnight, and I had no idea how to pack.

My oldest brother drove an hour and a half in the wee hours of the morning to spend the last few hours with us before the ambulance took us to Memphis. When I called him to tell him, the words barely came. Leukemia. Saying the word in relation to my son was like rolling rocks around in my mouth. Awkward. Foreign. Painful.

After a nearly 5 hour, non-stop ambulance ride, we arrived in Memphis around noon. I never saw the outside of the hospital as I was riding in back with Cub, but once I stepped from the ambulance into the breezeway, I was swarmed with kindness.

We were quickly moved from a holding room to Cub’s room on the pediatric leukemia ward. That first day was a blur of doctors, nurses, social workers, a chaplain, child-life specialists, a dietician, and many, many tests. Who knew a little five year old boy could be so brave?

At some point later that evening, one of the nurses lovingly kicked me out. “Go get some coffee,” she said.

I wandered around a bit, unusually disoriented from having no points of reference. I foraged something to drink and some peanut butter crackers that I ended up not eating. I went into the little parent’s room adjacent to Cub’s room, where my little bag was sitting on a pull out bed that I ended up never using. I realized that I hadn’t brushed my hair since sometime yesterday afternoon, and I had probably better set myself to rights. I grabbed my makeup bag and headed into the bathroom.

There was no mirror. None.

At first I was confused. Was it hidden somewhere? On the back of the door, perhaps? Nope.

Then, I was a little agitated.

Then, I was grateful.

I didn’t see what I expected to see. I couldn’t see the bedraggled, exhausted mother spent from her own desperation. I couldn’t see the traces of mascara that my tears had left behind or the little-girl-lost expression in my brown eyes rimmed with red.

Instead, I could see what I wanted to see. I could see what I wanted Cub to see. And, I realized while standing there in front of a blank wall, that this situation does not have to define us. Cub and I don’t have to fall into any preconceived ideas of what a mother and son “doing cancer” are supposed to be like. I didn’t have to be the mom I expected to see. I could be the mom I wanted to be.

So, I blindly combed my hair and tucked it into a clip. I washed my face, put some Burt’s Bees on my lips, and threw on a smile for Cub. I decided I get to be the mommy I want to be, and the mommy Cub deserves, not the mommy cancer says I have to be.

We’re doing this together, and Cub gets his mommy every. step. of. the. way. Not some washed out, hollowed reflection of her. He needs all of her, and that’s what he’s going to get.

I couldn’t help but wonder if someone knew what we mothers would think on our first night, standing in front of a mirror. And, maybe that’s why there wasn’t one on that bathroom wall.

Breaking the procrastination cycle one day, or moment, at time.

20140821_103102

There was a time when, if you looked up procrastination in the dictionary, you’d find my picture right next to its phonetic spelling. Even now, I succeed in accomplishing my goals in spurts, like a sprinter. But, I want to be more like a marathoner because, after all, this is a long race we’re running.

In my younger years, I would often wait until the midnight hour, literally and figuratively, to do things like laundry or that 40 page term paper on the redemption cycle as represented by earth elements in King Lear. True story.

Then, as it so often does, life caught up with me and my mercurial ways. Certain things just didn’t flex into my creative scheduling. Bills, work, grown up chores, and the eventual realization that, whatever I wanted to accomplish in life, I was responsible for putting into play. I have an expiration date, and contrary to what most of us so-called visionaries were taught to believe by other so-called visionaries, so do our dreams and aspirations.

After a few (okay, MANY) unladylike stumbles and outright epic failures, I realized that my goals were more important than my perceived freedom of spirit. I began to prioritize, whittle down, and focus. None of these actions come easily to me. I can’t even call them habits yet because, even as a 40-something, I still struggle. Daily.

I make to-do lists, lose them, and start over with a new piece of paper (sorry, trees). Between my full-time job, being a mom and (trying) to be a homemaker, sometimes it’s hard to squeeze in freelance work before 9pm. Then, there are my working manuscripts: my memoir, my novel, and my fantasy trilogy. Oh, and those short stories. . . *sigh*

It’s unrealistic to think I can do it all, and yet, I feel like a failure for not being able to bring home the bacon, fry it up in a pan, etc. etc. (If you’re under 40, you probably won’t get that reference. Sorry.) After beating myself up for not living up to my own expectations (or delirium, maybe?), I usually come back to reality with a clearer vision. I count my blessings and remember to be thankful. I remember that, yes, tomorrow IS another day and sometimes I remember that the rest of the day – the afternoon or even this next hour is fresh and unspoilt.

Then, instead of making the day’s to-do list on paper, I email it to myself. Instead of attempting to write 3 chapters between the hours of 9 and 11pm, I tell myself to do one page. One page is good. One page is great. One page is freaking FANTASTIC!

Can I bake 3 dozen cupcakes for the school bake sale this Thursday? No, but I can take home some reading pull out pages and collate them over the weekend. Can I clean out the car, weed the garden, and make a batch of cookies between getting off work and taking my son to his piano lesson? No, but I can grab a few things as I get out of the car, water the mums, and look through the cookbooks quickly with him to pick a recipe to bake together on Saturday afternoon.

Can I say no? Yes.

Can I compromise? Yes.

Can I be patient and forgiving, with myself? Yes.

And so can you.

There are many reasons we procrastinate. Only you can look inside yourself for your unique answer. For me, my reasons vary. I’m tired. I’m afraid it won’t turn out the way I want. I think I’ll have more time later. But, I challenge each of us to look at our lives and realize we’re on a one-way trip. What do we really want to accomplish while we’re here? What will bring us joy? What on our list is worth making a priority? What can we let go?

When you decide what’s important to you, revisit it daily. Spend time with your goals if you want to make them realities. You might stumble and fall, but keep getting back up. Move forward a little or a lot everyday, and you’ll make it.

 

 

Sweet Suprise

20140714_095551

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.