Mother, May I?

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“Everything is hard.”

I told my husband as tears rolled down my face. I sat at the kitchen table and watched the frantic and confused April birds hide seeds surrounded by a dusting of snow.

“Like what?” My husband asked.

“Like everything. Walking up the stairs, bending over, getting up, helping the boys….”

“You did just have several surgeries. You did just get back from being in the hospital for five days.” He reminded/scolded me.

I know. But somehow it doesn’t help. These are the lowly moments I remember later. These are the moments that spring me into action later. Remember when you actually physically couldn’t? I remind myself. Remember when it felt like any strength you had evaporated into the dry air of room 408? Yes. Remember when you couldn’t lift a laundry basket or one of your children? Yes. Remember when you desperately needed help and you accepted it? Yes. Remember when you couldn’t eat for days? How could I forget?

Last week, I ran. I walked strongly. I laughed. I danced in the kitchen. I watched the roller derby and drafted my future derby name. I played with my kids on the playground. I chased them around as fast as my thirty eight year old body could go.

This week is quite different. My body aches. I have new marks, scars, leftover medical tape gunk, a drain, a stint, fragile guts, and a healing kidney. All of my post-surgical hospital wounds.

Recovery sucks for an impatient patient like me. It strangely feels like I’m playing the childhood game of “Mother May I?” Two baby steps forward and then four shuffle steps backward. Side step. Wait. Mother may I take off my own socks today? No, you may not. Ask your husband for help. Mother may I stare at my boys’ eyelashes and freckled faces in the kitchen sunlight? Yes, you may. Mother may I feel a little better today? Yes, you may. Mother may I get my drain removed today? No, you may not. Please wait longer.

I use these fragile moments as future motivational fuel. I store these weakened moments in an easily accessible place. I will use them for compassionate strength down the road. Minute by minute. Hour by hour. Day by day, I will get stronger physically. Mentally. Emotionally. I must promise myself to be patient, never give up, and let others help me. I must put tight reins on my pride and my ego. I will not compare myself to others. Even myself last week. I will send myself compassion. Every hour, every day. I will give thanks for all the hands I hold. I will give God all the glory because Jesus knows I could never endure this alone. I’m too weak and tired.

Father, may I cry on Easter when I’m alone and exhausted? Yes you may, my sweet child.

Easter tears will not drown out my hope.

You may cry. But you may also remember all these brightly colored flowers that sprang up this hospital week, despite the cold:

*Countless dinners and breakfasts provided by thoughtful friends and family
*Bouquets of flowers spread throughout your home
*Overflowing Easter baskets for your boys
*Hospital visits from family and friends
*Milk in the fridge, Cocoa Puffs on the counter
*Compassionate nurses who advocated for you
*A Team of doctors and surgeons who reacted quickly and worked together to help
*Cards, care packages, and texts sent to let you know you were loved
*Prayers that calmed your fears and steadied your anxious mother’s heart
*Three compassionate boys who gently nudged their way next to your good side to hold your hand or hug you or sit beside you (and also control the hospital bed)
*Your solid oak tree of a husband who sways gracefully and can be a million different people in a day
*Your ever-present mom whose instincts knew to kick in and also call her long-distance sister nurse sidekick about your deteriorating post-surgical state
*Your family who worries and cares and prays so overwhelmingly much for you
*Your kind-hearted sister who took your boys to Easter service
*Your dear friend who FaceTimed church for you and whose husband videotaped the music for you
*All the other helpful things others did out of love for you and your husband and children and dogs while you were in the hospital
*Friends who hosted play dates for your boys so you could recover

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My hospital week garden is beautiful and in full bloom. It’s overflowing with the love that we’re constantly surrounded by. Moments of grief, shuffle steps backwards, and taking the extra space to heal grant me time, perspective and gratefulness in my heart.

Mother, may I sit in this garden and have a cup of tea?

Yes you may.

 

Humor Poncho

I flung open the door and reached into the overcrowded laundry room closet of my brain. I grabbed my humor poncho and then ran out the garage door. I’m always running late. I hear it means I’m optimistic. I read that in an article on the internet: a most reliable source, so it must be true.

I thought I might need a lightweight, easy-to-carry coping mechanism for my doctor’s appointment.

Better to be safe than soggy.

I’ve cried in front of many doctors and nurses over the years. I don’t like to do it. Especially not in those awfully patterned, poorly designed oversized hospital gowns. It’s just that I’ve had so many difficult appointments. It’s awkward. Most of the doctors I’ve had don’t quite know how to handle the slow trickle of tears or a sobbing mess of a patient.

Although, one time, my favorite surgeon sat down next to me on my hospital bed. I could tell that she hurt for me by the look in her big brown sympathetic eyes. That kind of response helped ease my sadness, my pain and frustration and oh, the crying weirdness. Crying in front of medical strangers? I highly don’t recommend it. But, sometimes, you can’t prepare for how your mind, body or spirit will handle certain settings, unexpected pain or the news of a failed procedure or a delayed discharge date or another surgery.

I recently met with my new urologist. Bad news. After a $20,000 lithotripsy procedure, straining my urine for a week (so fun!) and hanging upside down two times a day, my kidney stones didn’t budge. Unphased. Because, of course, my kidneys grow what I call “strong ass kidney stones.” The kind you would want to make a wedding ring out of. If you wanted to stay married forever. I knew I needed to go to a funny place. I thought about bringing a couple of rocks from our backyard garden to my appointment. “Here, Doctor, I passed these bad boys.” But, there’s nothing like doctor’s office stage fright or the potential for an audience of one to lack a sense of humor. Or perhaps, walk in unprepared for the “comedic patient” or be afraid to laugh. The list goes on. I get it.

Humor tends to be my buffer, my go-to move. It helps me momentarily cope. It’s my fast-acting short-term ability. It acts as a cheap, easy-to-carry poncho to temporarily protect me from the harsh realities of life. It’s lightweight, easily accessible. No phone booth necessary. “Ha. Ha. Ha. You’re making truly fluorescent light of the situation.” My funny self talk. Humor: it’s typically well-received. Because people like to laugh. Laugh, don’t cry. Repeat. Just laugh, don’t cry. People like funny. Don’t bring any of that sad shit news, right? Don’t go around ruining people’s sunshiney days.

But sometimes, life rains down. Nope. It pours. Sadness. Frustration. Loss. Disappointment blows and anger and fear strike hard. A poncho can only offer brief protection. Most of us don’t want to feel the chilling hard rains of life seep into our bones. Yet, you can only ignore it for so long when you’re sopping wet.

I walk to the car or get to my house and I peel that humor poncho off. I let it dry out on the garage floor. Dare I let myself go to the ugly crying places? Dare I let myself ask, “Why?” and “Why?” and “Why?” again. I texted my husband. He helped me laugh. And process. Dry off.

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I remembered all of the ways my stubborn, strong-willed spirit and body has helped me over the years. I remembered my perseverance. I remembered my three sons and how it took two doctors to get my third boy delivered because my body was so damn strong. And stubborn. God gives me this crazy strength from time to time and I’m certain it’s contributed to who I am and what I’m capable of today. Naturally, my self-manufactured kidney stones will not be moved. They will put up a good fight. They’re not quite pearls but that doesn’t mean I can’t pretend they are when they surgically remove them.

Perhaps you could say a few prayers for my surgeon and the nurses and crew. They have a difficult job especially when it comes to a well-seasoned stubborn patient like me. You may be so kind as to include my husband and my tender-hearted boys. While you’re at it, you might as well pray for me, my kidneys, especially the right one, and my weary anesthesitized soul. Thank you for caring.

Also, be on the lookout for my Etsy shop. “Strong Ass Kidney Stone Jewelry” I may work on the name a little. Limited supply, factory closing down. They won’t be cheap so you may want to start saving your change.

In the Hall Closet

IMG_9854Don’t worry about me when I’m writing. I’m processing. I’m sharing what I’m feeling. Or what I’ve already felt. I’m reliving or retelling a moment in time. Not a perpetual state of mind. Perhaps, worry about me when I stop. When I’m silent. Apathetic. Hopeless. Without you knowing. When I’m numb. Worry about me when my feelings have gotten all clogged up in the drain of my heart or my head. When they’re packed in over time, too hard. I can’t get them out. They’re stuck. Trapped. Going nowhere.

Writing helps me. It frees me from my overthinking. Super size feeling. It breaks my pursed lips and opens my tightly crossed arms. It grabs the door handle to a closet filled with all kinds of thoughts. Life-giving kite flying thoughts and life-robbing, weighted thoughts. Pesky untrue thoughts that have the power to alienate, isolate and suffocate me. If I let them.

But I won’t.

I did for a long time. I closed my eyes. I would not peek. It was my choice to see that there was no light. I could dim or brighten my room the way that I wanted. Pretend. Escape. I built a lonely hiding spot. Nobody knew to find me.

I was afraid to open my eyes to see things the way they were. Maybe it was the kind of pitch blackness that confused me. Is it that dark or was it me, were my eyes shut so tightly? Where’s my hand? There was a thunderous sigh, a release, when I recognized that I possessed the power to open my eyes. Immediately, my perspective changed. I noticed the small crack of light from underneath the door. Then, I realized if I grabbed the handle, I could slowly open up the door and let myself out.

When another person says with their words or with their eyes that they’ve been there or felt something similar too, the light floods in. Opening up the dark hidden linen closet of his heart or her mind. It’s freeing. Like finally breathing without someone’s hands covering your mouth. Like a kite bobbing up and down on a fluffy big clouded day.

Feelings, thoughts, and worries escape. They’re not so consuming or heavy in the light. They’re less powerful, less heavy. More healing. It’s like holding your breath.
Holding your breath.
Holding your breath.
Breathe.
Exhale.
The pressure releases.

Freedom begins. The tiny yet enormous healing power to live in the way that you choose. You do have control. It’s not an illusion. You’re no magician but you fight, you learn how to escape. Those are the unpurchased gifts waiting in the cart of your mind: perseverance, hope, God’s constant presence, time and experience. After experience.

There are many hidden exits to get you out of your mind. When you discover them, remember to tromp, tromp, tromp your heavy, weary feet on your way out.

You will leave easy-to-trace tracks for yourself the next time.

You will find the door handle more quickly. You will remember to tell others you’re hiding. You will take your pen and moleskin notebook and you will write your way out.

 

Favorite Doctor Thank You note

IMG_9661I walked out of a new doctor’s office today with two discrete green bags. It looked like I had just bought several new pairs of shoes. Feeling all-Julia Roberts in “Pretty Woman,” I walked out to my car. Where did I park again? I drove to the bakery because I had pre-determined my post-doctor’s appointment destiny. I told myself that I could go get a pastry and a coffee after my appointment. Yes, an incentive or grown-up prize motivator for completing a dreadful task.

I love this certain bakery because there is a kind woman who works there who accidentally shares great stories with me. I thought if she’s working today then that will be an extra prize for me. I have too many -ologists. Pulmonologist, endocrinologist, gastroenterologist, urologist. But, I do have pretty spectacular health still. I can drive myself to my appointments. And by golly, I can drive myself to the bakery following my appointments if that’s my Thursday destiny.

This past year, I received two letters in the mail. Letters from two of my different -ologists that he and she would no longer be practicing medicine at a certain location. This can be somewhat disheartening, discouraging and all-together overwhelming for an un-administrative assistant like me. I stink at meeting new doctors. I hate new patient paperwork, new doctor small talk, the waiting. The medical history. Blah. Blah. Boringdy blah. Blah.

But I got to thinking, what if doctors could send a pretty or funny or sympathetic greeting card when they left? I know they’re super busy and have a lot of patients but if they could, I thought of some meat for the card.

“I’m sorry. It’s not you. It’s me…..I’m moving. I’m leaving the practice. I’m retiring.”
“You’re a really awesome patient. I will miss our medical and non-medical talks. P.S.-Sorry for all of the waiting.”
“I’ve seen a lot of patients in those weird paper gowns, but you always looked the best.”
And so on. Oh, wait. One more.
“I wish I could fill out all the new patient paperwork for you. And fax all your records the first time you call, too.”

Ack. What if my doctor left because I never wrote him or her a proper thank-you note? I thought I should do that.

Dear Favorite Dr. or Doctor,

We, experienced patients, get rather attached to our good, old worn-in and perhaps worn-out doctors. You’re the courageous messengers of difficult-to-hear information. You’re the sympathizers, the cheerleaders, the healers, and the gardeners of hope.

You’re with us in some of our darkest, most difficult moments. And you gently help us reach the light switch with that fancy tiny rolling doctor’s stool of yours.

I keep forgetting to write you a thank you note for all that you do. Is it too late? Will you stay now?

I know that you carry your patient’s worries, fears and hopes and dreams with you in that genius brain of yours. How do you remember so much life-saving information?

Your mom must be so damn proud of you. I would have liked to know you under different circumstances, when perhaps, you weren’t wearing your work cape. But I feel honored and privileged to have someone like you taking care of a complicated person like me.

Thank you for seeing me as a “me,” not a disease or a diagnosis or a case study. Thank you for all the times you handed me one of those cheap hospital grade kleenex. Or thanks for sitting next to me on the bed when you had to deliver bad news. Thank you for doing the jobs that you could have had somebody else do. Thank you for being honest in the most respectful and delicate ways. Thank you for handling me and my precious family with compassion, patience, kindness and never-ending care.

Thank you for all of the sacrifices. Please thank your family, too. I know you have spent time away from them helping all of us. Thank you for coming back in the middle of the night. Thank you for your willingness to learn, to adapt, to grow and do the things the right way, which is rarely the easy way.

Thank you for helping me. You’re famous to me.

I will miss you.

And I would fill out the new patient paperwork a million times for a doctor like you.

Love,
Amelia

I don’t always need a self-pep talk or (several)post-doctor’s appointment treats, but today I did. Did I mention that I don’t like filling out all of that new patient paperwork? When I complete it, can I consider it a memoir of sorts? Hooray, I’m a published author. You will have to check my medical records. Boring much? Bonus: There are so many signatures that you won’t even need a signed copy.

Cheap paperback only.

Overcoming

IMG_9649I’ve spooned many dark nights with sadness. I’ve arm-wrestled with anger. I’ve sobbed on the bathroom floor with disappointment. I’ve had one too many drinks with resentment. I’ve hand-cuffed myself to shame. Apathy and I have stared outside my kitchen window. I’ve shared a tarnished best friend’s necklace with inadequacy. Fear has driven me home many nights.

Uncomfortable. Miserable. Trudging. Falling. Bargaining. Despising. All-consuming. Short-lived. Neverending.

I will allow you a brief cameo in my life. On my stage. In my thoughts. Then, I will close the curtain on you.

I recognize you. I’ve met you. I know exactly who you are. And what you are. You’re necessary. Yet, you’re one dimensional.

But I am not.

Goodbye for now. The unknown. My temporary struggles. I have made long term plans with peace. Joy is on my speed dial. My soul patiently holds her hand out for me. Grace knows the code to my garage door. Self-compassion opens her arms wide to hold my truths. Because I have love and mercy overflowing, I will not run dry in the midst of pain, uncertainty and my struggles. My discomfort and questions and lack of answers will not consume me. My faith will steady me.

I will be watching the setting sun before me admiring the gorgeous colors of the sky as they change every day. I will hear the giggling boy beside me. I will push on his left-sided dimple and I will point to mine. I always will be healing. I will never stop growing. As long as I am living. I will stumble. I will fall. And I will get back up again.

Struggles and strengths. They will lead me through this complicated world filled with hope.

God has never left me. He hears my sighs, my laughter and my tears. Jesus feels my pain. And He willingly fills my love tank. The Holy Spirit revives me, recharges me, inspires me. Time after time again.

I am overcoming.

My Rose

IMG_9083It’s perplexing to define you. But still I will mumble. I will try.
I stare at you.
I tend to you.
I’m often inconvenienced by your existence. Your constant presence.
What are you?
Are you a wound that will never heal?
Are you a beautiful yet strange rose that will always live?
Depends on the day.
Depends on the hour.
Depends on the moment.
Perhaps it also depends on my bitter intolerance or my overwhelming gratitude for you.
The life you give me.
A different life I will never know.
I should adopt you.
I should accept you.
I should spit out the hideous aftertaste. The venom left behind from the life I once imagined.
The dull life in which I envisioned lists coming true.
A boring, comfortable thoughtless existence. Barely a fingerprint. No wake left behind me.
You make me think.
You beg me to feel.
Your thorns protect me.
You are my rose.
I can’t show you to the world but I know you exist.
Your beauty is disguised in loss, uncertainty, mortality and pain.
You are fragile. And so am I.
Your truth lives in the eyes of many.
The ones I see while others pass by.
The ones I can’t stop thinking about.
The ones I can’t stop feeling for.
All of the shame made me wiser.
All of the pain made you stronger.
You will never die.
Because of you,
I will always live.

Lithotripsy Semi-truck

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“The Crohn’s is probably enough.”

A kind and sympathetic nurse conversed with me in (a semi truck)* lithotripsy procedure while my doctor figured out the best way to blast my sneaky large kidney stones. This nurse was right. The Crohn’s disease is probably enough. The extra specialists that I have added over the years sometimes feel like too much. The Crohn’s makes me prone to lung problems. The Crohn’s makes me prone to kidney stones. The Crohn’s depletes me physically yet somehow continues to recharge me emotionally and spiritually.

The Crohn’s also makes me prone to seeing the raw beauty amidst the unfair pain. The Crohn’s makes me more prone to routine feelings of overwhelming love and gratefulness for my concrete support system. The Crohn’s makes me prone to testing my faith and wearing my emotions on the outside, along with my bag. The Crohn’s makes me prone to being authentically myself because it’s too exhausting on my already-tired body to fake my way through life.

One of my boys worried about the medicine they would give me for my lithotripsy procedure. A few weeks ago, he wanted to learn how to do the moonwalk. We watched videos, listened to songs and talked about Michael Jackson’s life. Which also lead to a conversation on how he died. And so a week later, my son asked this question after he made this connection all by himself  (kids are so damn smart)

“Mama, will you get the same medicine Michael Jackson got?”

Ahhhh. I know this boy’s thinking all too well. An eight year old boy shouldn’t have to worry about his mama dying in a kidney stone procedure. We talked and I told him, “I will only be getting a little bit of medicine to help it not hurt. There will be nurses and a doctor to take care of me. Michael Jackson took way too much medicine.” I asked him if he was still worried a few days later. “No, cause you’re just getting a little medicine…for thirty minutes.”

I’ve had ongoing days and weeks and months of kidney pain. Some days are way better than others. On the hard days, it’s been me telling my boys too many times to count, “I can’t play right now. My back is hurting too badly.” I’m hopeful that I will get relief soon though I have unexpectedly acquired a pretty high tolerance for pain. Thankfully, I possess a stubborn, competitive spirit that keeps fighting back when one of the many side effects of my disease challenges me.

I’m convinced that yesterday my strong and worried mind kept me alert during my procedure, despite the valium, versed and fentynl, because I wanted to reassure my deep thinking and feeling son. Particularly, I didn’t want to die on a day that I had made the worst gluten-free waffles for breakfast. The. Worst. Though due to the nasty waffles, the breakfast dance party was pretty awesome.

After my procedure, all three of my boys came up to my room to check on me when they got home. They get me. Every single time. They have an abnormal amount of compassion for their ages, most likely learned through watching their daddy lovingly take care of me when I’m wounded. One of them brought me water and a pain pill. One of them asked if I would be able to come down and watch a movie and saved me a perfect spot, right next to him. He kept making sure he knew which side of me was hurting. The sweetest.

I woke up feeling pretty good today. I’m a little sore but it’s totally bearable without the obnoxious pain meds. I have to do these exercises where I drink a lot of water and then lay on an incline to help get the broken kidney stones out. My dog wanted to maul my hair, lick my face and then finally gave up and decided to lay down next to me. Moral support-ish. I’m not sure if his presence will help move the stones but it always helps my spirit to have a friend willing to hang out with me, right side up or upside down.

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As always, thanks for reading. Thanks for sending your prayers for my spirit to stay positive and hopeful. Thanks for supporting me and my family in too many ways to count. Thanks for caring, for dinner, for worrying, for checking in, or for talking with my husband or helping with our boys.

*Yes. Seriously. Who knew? Not me. I was raised up in my wheelchair onto a traveling semi-truck. The truck is cost effective in that it goes around from location to location doing lithotripsy procedures out back. Literally, out back, in a semi-truck. Crazy. My husband laughed when we arrived in the office and the nurse told us. Then, he didn’t believe her so I asked him to go take a picture of the truck. Here is living proof that you can pretty much do anything out of a truck. Anything. Buy tacos. Zap kidney stones. The mobile truck industry is strong. Just set your mind to it. Get going.