Hospital

Coronavirus helpers

~ Amelia ~ 4 Comments

I felt like I should write about the pandemic although I don’t really want to because I just feel so tired and I worry that I won’t have enough energy to use proper punctuation perhaps this will be one long run-on sentence and my english teachers will haunt me saying, “period. exclamation point. comma. comma. comma, amel-i-a.” you know like the song. i did it. i used a period but i will no longer use capital letters because i can’t. what day is it? i just want to go to target. or somewhere. anywhere.

me and my littlest breathing treatment buddy…a fave pic from years ago

but i am vulnerable. and i don’t choose to be. i have a lung disease and an auto-immune disease and so i have been staying home for weeks. almost 4 weeks. but who is really counting? oh, me. i am a busy body. i like to go. ever since i quit working weekends in the hospital years ago, i dreaded the medical paperwork. the “occupation” box highlighted my insecurity because i hated filling in “stay-at-home mother.” because i don’t. i am a “go wherever i’m needed mother.” like most of my mama friends.

oh, man. my heart just keeps aching for my fellow hospital working sisters and brothers. i wish i could sneak into the equipment rooms and give them all a big hug. a long one. or an iced water. or something substantial. i cry for them. those with grieving exhausted eyes. those who hold their pee all shift long. those who have the tenacious capacity to hyper focus on the patient: the daughter, the sister, the mother in front of them and care for her in the most extraordinarily compassionate and self-sacrificing ways.

when you have been the patient far too many times to count, like me, its all too easy to imagine the pain. the terror. the sufferering. and yet, the tangible love and beauty winding its steady way through every hospital room, hallway, stairway, waiting room. the helpers have carried me through my darkest moments. they have showed up in the wee hours of the moon morning when i needed to get out of bed but i couldn’t do it all by myself. the helpers have brought me my medicine. my iced water. an extra gown to cover up my ass. they have taught me it’s ok to be the weak kind of strong, the scared kind of brave and that healing is a journey not a moment. they have listened to me moan, laugh, cry, and they have recognized my silence.

i read about them. i know them. i worry about them. we pray for them. i squeeze my eyes shut to hold my tears inside when my precious eleven year old boy pleads for God to care for those working in the hospitals. please, God, please, hear his heartfelt prayer. please make this all end soon. please help us all to do our part. give us the courage, the strength, the love and place your hands on top of ours as we grow weary yet still hold onto hope.

40 Year Old Pearls

~ Amelia ~ Leave a comment

After having an amazingly simple birthday without parades or “over the hill” signs, one of my twin boys came to me crying at bedtime. He sobbed and said, “what did you mean when you said that this morning?” I quickly tried to remember what I may have said in a hurried morning state of mind. My son responded, “You said you were happy you made it to 40.”

Oh. That. I still felt a bit confused as to why my tender-hearted boy couldn’t contain his sobs beside me. Through his snot and tears, he continued, “What does that mean? That you made it to 40.” I began to understand that he may have thought I had an expiration date. And I got it. I understood his worries.

One of my biggest fears as a woman and mom who has Crohn’s disease and has experienced countless surgeries, procedures and complications is that I will not live to see my boys grow up. All the way up.

I’ve been in many hospital rooms in a desperate, totally dependent state. My boys have happily visited me, sat gently on my bed, and eaten the nurse-issued hospital popsicles. Still, it tears a hole in my mothering soul not being able to care for my children when my own health takes center stage. I’m pretty certain it’s because of those difficult times that I play harder, hold on longer and love the best and most that I can. When I can.

I worked for years in the pediatric emergency department, an environment where you can’t help but learn how terrifyingly fleeting and fragile life can be. In an attempt to somehow honor those who died too soon, I try to live my life without regrets, albeit imperfectly. It’s not possible to do this every moment of every day because bills, stress, mean people and life can get loud and my inner voice doesn’t like to scream.

My youngest boy studied my pearl necklace at dinner last night. He asked, “How do you make a pearl?” My husband and I explained how a piece of sand gets into the oyster shell and how the oyster works hard to get the sand out. In the process, the oyster makes a pearl. We explained how it’s rare, but it creates a beautiful masterpiece. In the process, I’m sure the oyster isn’t stoked about the dirt in its cramped space. (As it turns out, after some five minute Wikipedia pearl research, it’s more of a microscopic parasite or tiny crab invasion that makes the mollusk work to protect itself, thus creating a pearl to envelop the invader. Still, pretty dang awesome)

One of my hopes and life goals is to find the pearls amidst the pain. I’m aware that my life and perspective has been altered time and time again by laying on too many doctor’s tables to count and waiting to get better. I fight. I grumble. I cry. Then, I guess I try my best to envelop these intruders in something beautiful. Like a mollusk. Who can forget those paper sheets and backless hospital gowns? We cannot control all that happens to us in life. Sometimes it feels like we can’t control much at all. But I do believe in the great power we hold to choose our perspective. Make our pearls.

If we can take the time to recognize the tiny moments filled with so much beauty and love, it’s impossible to deny the gift of the life we have. Our lungs. Our breaths. Our hearts beating. We get to live amongst belly-laughing, freckle-faced kids, hummingbirds and weird mushrooms. If you buy a pair of binoculars, and use them correctly, suddenly you can feel like you’re riding on the wings of a great blue heron. We live in a amazingly simple yet fascinatingly complicated world. If you look gently and persistently, you will find that beauty often surrounds the pain.

Last night, I held my ten year old boy, snuggled up to him. I apologized if I made him worry. I helped calm his fears and my own and I tried to help him understand the best I could how extremely grateful I felt to turn 40 yesterday. I let him know that I hope to live forty more years. I cannot begin to enunciate the echoes of love in my heart for the life I get to live. I am so deeply grateful for those who hear me, see me, love me and cushion the blows that sometime come my way. No matter the extent of my pain, God has always provided me with the greatest, most supportive human pain relievers, helping me create funky shaped pearls.

Here’s to a new decade of playing in the water and probably falling repeatedly on my ass. And getting back up, over and over again, whole-body laughing all the way.

Mother, May I?

~ Amelia ~ 2 Comments

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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

~ Amelia ~ 2 Comments

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.

Overprotective Anger

~ Amelia ~ Leave a comment

DSC01804I walked in to the dining hall and found my hospice friend sitting slumped over in her wheelchair. I kneeled down and gently touched her shoulder to say, “hello.” She barely looked up and then said, “You haven’t come.” She didn’t want to talk. She was mad at me. I tried to explain that my children had been sick and that I did not want to spread any germs to her. But she didn’t want to hear my explanation. Today was not a good day for her. I understood. I positioned her blanket more comfortably. I asked her if I could read her card to her. I got her a Kleenex and itched her nose for her. I tried my best to sneak past her frustration with me.

It didn’t work.

She rested her head down. She slept. She didn’t want to go back to her room. I began talking with her neighbor. Everyone at the table held a stack of stapled papers. I looked through the nine pages. Oh, it was a sermon to follow along with.

“It’s too long. They talk too fast,” one woman said. I agreed.

When you come preaching to the rehab and memory care unit, perhaps you should remember to keep it short and simple. Less than nine pages. Better yet, you may want to sit down and get to know those you come preaching to. Sometimes, we may want to be fixed and sometimes we want to be seen, heard and understood. Listening may be the best sermon you can give.

I suppose that not everybody understands what it feels like to lose all control. To be stuck in a place. To rely on others to move you, feed you, and get you to the bathroom. Not everybody understands what it feels like to be physically and emotionally isolated, angry, and confused. Unfortunately, not everybody has easy access to an imagination that will help them better understand.

I’ve been the one in the wheelchair. And the hospital bed. The shower with assistance. And in the bathroom with an audience of nurses, care assistants, and family. I’ve been connected to IV poles, pain pumps, drains, etc. I’ve been completely stuck. Trapped. Alone in a crowded place.

I’ve been the angry one. And so I’ve learned to not take it personally when patients express anger, frustration, or other emotions to me. I don’t expect an apology. Please, don’t. I sit. I wait. And I will leave if you would like to use a tiny bit of your dwindling supply of control over me. I will come back again.

As Shrek says, “Better out than in.” It’s a million times better that a person would feel comfortable telling me or showing me how they feel. Anger can be an overprotective big sister to sadness, loss, inadequacy, and so many other emotions and feelings. I will be much more hurt if you fake an emotion with me. I think it’s truly an honor to be a bumper, a cushion, a landing place or even a temporary target. I feel that its a privilege, the highest honor to help carry another’s emotional and physical burdens.

My husband asked me, “Do you ever just want to leave when she treats you that way?” No, well maybe, but I don’t. I know she loves me. We all have difficult days. I don’t take her anger personally.

I listened to a woman who needed to talk today. She was not the woman that I came to visit, but she may have needed a companion just as much or more than my friend. She talked and talked and counted her pills over and over again. She asked me questions and told me stories. I’ve talked with her and helped her before. But she doesn’t remember me. Or maybe she does.

Maybe she remembers that I will listen to her. And that I will answer her questions without frustration or annoyance in my tone or eyes. Maybe she remembers that she can tell me she is lost. Or confused. Maybe she knows I will laugh with her about lengthy sermons and the lunch menu. Maybe she knows that I will also help her.

The worlds of senior care and the worlds of pediatrics are not that different. Kindness, compassion, patience, love and your consistent presence will help you navigate both worlds. You should and you will most likely feel sadness, pain, helplessness and loss of control through the eyes and experiences of the patients and families in both worlds. But that doesn’t mean that you should not go back. It means that you must go back. When people stop caring, feeling, empathizing, and helping, this world will be far too dark. A hopeless place.

If you’re not hurting for the wounded, broken, helpless, confused, and isolated, perhaps you are numb. Or perhaps you have over-insulated yourself from the world. May we all find a way to push through the many layers of comfort to find the uncomfortable. Somebody needs you to see them, hear them, and sit with them.

Don’t be offended if you’re not the best thing they’ve ever met since sliced bread. Keep sticking around. Soon, you may proudly be introduced as a friend. Or mistaken for family. Soon, you will hear, “thank you for visiting with me. Can I come visit you, too?” You will walk out of the place with a heavy, yet full heart. You will discover a new kind of insulation that keeps you warm: an internal insulation provided by those you sat with, listened to, heard and understood. Those you loved and helped. And those who loved and helped you, too.

“We are all in the same damn leaky boat together.”-quote from one of my hospice friends

Favorite Doctor Thank You note

~ Amelia ~ Leave a comment

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.

Warm Blankets

~ Amelia ~ 2 Comments

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I slowly woke up and got my boys ready for school. After breakfast, I stood outside watching them show me tricks on their new swing. I needed to quickly catch up for lost weekend time before I had to load them into the van.

It didn’t matter how many layers of clothes I had put on to try and block out the wind, none of them felt like enough. Not today. The cold winds blew right through me. I wrapped my arms tightly around my waist to try and keep myself warm. The thing is when I’m sensitive from the inside out, I don’t think it’s possible to fully insulate myself from feeling the hurt, the pain, the anger, and inevitably, the sadness. It’s just not fair. So many things that I saw on Sunday. It was too much brokenness. Too much wrong, not enough right. Unfortunate circumstances tangled up with loss. After loss. The good seemed so dim beneath the weight of the pure evil. The hope was drowning and there was nobody there to save it.

Everybody was too busy.

I don’t think I will ever forget the sound of the door to the blanket warmer opening and shutting, when I grab a few blankets for a patient. I think every one of us has wanted to stop at some point and curl up inside of there. Disappear and take a short nap in the middle of one of the shifts that feel more like twenty four hours. It’s sometimes the least and the most that you can do for a patient and family, go snag them a warm blanket. Or a cup of water. Because you can’t do anything about why they are there or how long they will wait, especially when there are real emergencies happening. Everywhere. You can’t tell them that it’s far better to wait impatiently alone than to have a swarm of doctors and nurses quickly take over your room. You can’t tell them that they should be grateful to leave, eventually, with their alive child.

This afternoon, at home, I grabbed a load of warm laundry from the dryer and remembered bits and pieces of the previous long work days. It all feels like a blur sometimes. The giggles. The tears. The loud cries. Infant cries. Toddler cries. School age cries. The silence before a procedure. The begging. The pleading. The lullaby music. The smells of different families, cleaning wipes, popcorn. The sadness or apathy lurking behind certain doors or curtains. The unknowns. All of the brief hallway conversations with co-workers. It all just makes me want to lay my tired body down. Then, I want someone to knock on my door and tuck me under a warm blanket so I will be temporarily sheltered from the harsh winds of sickness, the unknowns, evil, sadness, and pain.

Yet, unfortunately, a warm blanket will not make my work thoughts disappear.

After crazy weekends, there are far too many of my thoughts and feelings seemingly waiting loudly in line, bumping into one another, sharing with each other, asking to be heard, understood, or felt. All in my mind. When it gets too crowded, tears will be shed. My tears. Because I don’t know all the answers. I can’t begin to understand or solve the problems of our broken society. Tiny caskets. Shelters full. Psych facilities full. Hospitals full. It’s overwhelming. My heart can’t begin to fathom the atrocities that certain children see, hear, feel, or live through because of another human being’s ignorance, negligence, mistreatment, or selfishness. The one human being that should love and protect them the most.

I sometimes wonder what may trigger a child or family member to remember the painful moments, hours, or days spent in the hospital. Will a certain toy or TV show or sound or smell remind them of the painful times? Will it be something I said or did? Should I have them watch their favorite movie or not? I still can’t listen to certain songs or smell certain scents without being immediately taken back to specific hospital rooms, or the operating room, or the emergency department unexpectedly recalling my own medical experiences.

But somehow, despite all of my surgeries and recoveries, the warm blankets still always make me feel a little safer, a bit more comforted, and pretty warm too. There aren’t too many perks to being in the hospital. Loads of uncertainty, constant beeping, weird smells, awkward hospital gowns, and so on and so forth.

The warm blankets help.

They matter in a simple yet important way. Similar to a lot of the kind and thoughtful gestures in life, the times we go a bit out of our way to do some small act for another. Perhaps for someone we love or a complete stranger. I’m pretty sure we all possess the power to grab someone a warm blanket, wherever we are in life and whatever we’re doing. Or maybe we are the ones that need to graciously accept a warm blanket from time to time. Either way, the warmth wears off on both the giver and the receiver.

Two ERs

~ Amelia ~ Leave a comment

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I woke up. Took a shower, and then I laid back down wrapped up in my towel. In fetal position. My guts hurt and I didn’t think I was ready to face the day. But I had to get up. I had to get my boys ready. I wanted to call in to work but I only had two shifts left. I took a moment then I got myself dressed. Because that’s what you do when you’re a mom. You have jobs, responsibilities and dependents. Even when you have a disease that lately keeps competing with your favorite interruptions in life, your kids.

So you get up. Get moving. Think positive. Keep the faith. You fight harder. You push back. You breathe deeply. You remind yourself how powerful your thinking is. And you tell yourself that you can do it. Then, you believe it. You pray and ask, or is it demand, for God’s help. You need his strength to jump start yours. Then, you take a moment to curse the disease. You may even irrationally tell it that you hate it and you don’t want it anymore. It’s not like you are childhood best friends or anything. You know it’s a bit absurd. As if you could just return it to the chronic illness store, at this point in your life. You’ve had it too long. No exchanges or returns. Sorry.

Some days, you’re painfully aware. Like the moments when you look down in the shower. This amazing life preserving sort of gift of your small intestine coming out of your body. It’s beautiful and visible and life changing. You recognize and appreciate the lessons that having the disease has taught you. The silly unimportant things it has freed you from, in order to help you focus in on the ones that matter. The gentle touch of strangers doing their job, taking care of you, getting you warm blankets. Because you drove to the ER alone. In the middle of the night. It’s what you needed to do and your husband needed to stay with the sleeping boys. Thankfully there are the kind hearted, the compassionate, the ones who don’t know you but they see you vulnerable, hurting and they tend to you like their own. They touch your shoulder, speak gently and tell you they love your name. The nurses.

Other days, you’re just so damn tired. More like utterly exhausted. From life. And you feel like the disease is the heavy weight champion and you’re curled up in the corner of the ring with your head in between your legs and your eyes are shut so tightly. Just. Go. Away. Leave me alone, will you? Please. You beg. And plead.

It’s the worst listener.

It’s really a great big juggling act balancing all the present thoughts, feelings, pain, anticipation and previous medical experiences. Then, there’s the future. What are your options? Will this be the thing that kills you? Should you ever go to that land of unknowns? Probably not. Just stay where you are. You stay positive and present with the many, many painful experiences you’ve had before. You let gratefulness fill you up and smother the little flames of pity, fear and shame. You know that you’re not as bad off as you have been before. You’re hopeful that like all the other times, you will make it through this valley filled with it’s fair share of obstacles. You will always, always learn something that’s bigger and better than the pain. And soon, you will look back once again to realize that it wasn’t ever your strength so much as it was the overwhelming and never ending strength, love, and support of those surrounding you, encouraging you and helping you. You will never ever forget the friend who picked you up on the curb. And drove your tired body home and acted like you gave her the greatest birthday gift in letting her help you. You will always remember her. You will remember that love wins. Every time.

You know that when you get to feeling better you will do everything possible to show others this kind of readily available, self sacrificing, beautiful and rare kind of love. Because you believe that it’s not fair, every person deserves to feel this kind of love. Not just you.

The Mercy Tree

~ Amelia ~ 1 Comment

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If I wanted to be funny, I would say that I just couldn’t take it anymore. That it nearly broke me when they eradicated the sugar-free cokes. And then the chocolate covered cinnamon bears disappeared. Next they replaced the entire grill and deep fat fryers with weird non-ovens. I’m no good at packing my lunch and bringing it to work unless I pretend that I’m that homeless man’s mother off of 71 hi-way and pack us both a lunch. So, I would like to blame my resignation on something trivial like the gradual disappearance of non-healthy comfort foods in the hospital cafeteria. A junk food extinction. I don’t “feel better” about it. But that would just be ridiculous. Because everybody knows if you work in the emergency department, you will typically be surrounded by carbs. And more carbs. Carbs of every kind. Pretty much every shift. Especially on Sundays.

The truth is that I’ve been saying goodbye to this place for months. I knew I had to prepare my heart far in advance. I’ve spent too many years here to only give myself a two weeks notice of goodbyes. I’ve walked around differently, a bit more slowly, soaking in the views from the many different hallways and places I’ve worked. I’ve tried to avoid thinking about the last times. The last time I would prepare and support a child or teen as they navigate through a lengthy and humiliating exam. The last time I may temporarily squeeze into the shoes of a mother or a sister or a friend. I’ve held on tightly, so tightly, to the beautiful moments when a mother hugged me after I did something small to help her child or her. I’ve jumped at the opportunity to console a tiny crying one or comfort a sibling or explain that an accident was not his fault. Most times, even when I’ve been hurting or tired, I’ve eagerly grabbed my Mary Poppins bag full of distraction materials to quickly go support a patient getting sutures or an IV.

I’ve absolutely cherished last conversations with coworkers who I love so dearly that it physically hurts to think I won’t see them on a regular basis. Maybe if I could memorize their voices, their laughs, and their faces, it will help me later when I’m missing them.

I’ve prepared myself because I need to walk out of here with my head held high. More proud than sad. I’ve prepared myself because I know it’s best for me and because that’s what I have always done with kids. Hundreds and hundreds of kids. Nearly twelve years worth of kids and families. I’ve blown at least a million bubbles. I’ve held hundreds of nervous, scared or confused hands. I’ve taken a million deep breaths. I’ve said thousands of prayers. I think I’ve heard “Let it Go” at least a trillion times. It’s really, really difficult, almost incomprehensible, to think that soon I won’t navigate these halls with the ease, familiarity and confidence that comes with years and years of experience. This place has been like my second home with all of my beautiful brothers and sisters, my work family.

So, I’m feeling a bit shaky, like a volunteer tree. You know those opportunistic little seedlings? The ones that fall from the strong well-established mature tree and plant themselves in a perfect or not so perfect place in a forest or yard and they begin to grow. That’s me. I have fallen or taken a leap or perhaps the winds of life have pushed me away from my big comfortable home base work tree. It’s all a little scary. And uncertain. Definitely unfamiliar. But change is always new. And hard. And usually a risk. So many new doors to embark upon or windows to slide through.

A month or so ago, a kind-hearted and smart gardening friend of mine came over and walked around my backyard with me and pointed out flowers, and perennials and weeds. She also pointed out my “volunteer trees.” The trees that had grown on their own accord…because well, I didn’t plant them. Some of them were so tiny and cute, little toy trees that could easily be uprooted by my children running or tromping on top of them. Other volunteer trees appeared strong like they had strategically placed themselves in a perfect growing spot. Like they may take some real effort to dig out. So maybe I should just leave them alone and let them keep growing. Plant a tree. Or just be open to one planting itself. And leave it alone.

Let it grow.

That’s what I’m hoping to do. Little volunteer tree me. Grow through the change. Battle the winds. The seasons. The unknowns. And just keep growing. Just keep growing. I will tell myself. I will always think of all of the encouragement and support and love I’ve been filled up with. And I think I will manage alright because I’ve learned from one of the strongest, most resilient and beautiful trees that exist. The Mercy Tree.

Chocolate Chip Cookies

~ Amelia ~ Leave a comment

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Tonight, after we said a long gratefulness bedtime prayer and I heard my boys’ breathing get deep sleep heavy, I cried like a big old baby. There must have been a hundred reasons as I thought about all of the beauty of the day.  That yellow finch playing in the street in that puddle. The ruby throated hummingbird whizzing up to my kitchen window. My boys’ pure endless and exhausting innocence. It’s so damn hard to know if they’re prednisone tears without some sort of litmus paper, but I think tonight, they were the real deal. The kind that flood your face for a reason. Or perhaps a million.

I thought about eating lunch earlier today. “Mama, can I sit on your lap?” My almost five year old boy asked. We had a whole bench to ourselves, but yes. I sat across the table from a man, somehow my husband. A man that loves me in ways that blow my mind. Yet, I don’t always feel the enormous, overpowering sense of gratitude for him because marriage is hard. And distracting. Marriage with jobs, kids, and chronic illness takes hard to another level. But we do the hard together. And it’s not always pretty, but it’s always together. Always.

After school, my boys and I got ice cream. Then, we took a bag full of “World IBD Day” treats i.e. soft toilet paper, bubble gum, coloring books, flowers, smelly soap etc. for the nurses to give out to GI patients that maybe needed a boost. As we walked the halls of Saint Luke’s, hospital memories, many of them painful, suddenly overwhelmed me. Thankfully, the distraction of my boys fighting over who got to push the elevator buttons interupted some of the more difficult memories. The repeated NG placements. The depressing, long days spent laying in that hospital bed. The prayers that I uttered as they moved my fragile, aching infected body after surgery from one part of the hospital to another. I understand why people avoid going back to hospitals or places that trigger some of those vivid sensitive and hard to forget memories.

But I happen to love hospitals, specifically when I’m not a patient. I love the people there. They truly feel like touching heaven sometimes. Tonight, we rode several wrong elevators. We got lost and everybody helped us out. Everybody thanked us for coming. Perhaps, it helps being accompanied by three energetic young boys carrying chocolate chip cookies for the nursing staff. They had a hidden agenda. They eagerly hoped to meet all of the NICU nurses who helped take care of them in their first few weeks of life. On the car ride, they had planned out what they would say, “Hey! Do you remember me?” I didn’t have the heart to tell them that the nurses may not remember them. Seven years later. Little egos need not be deflated too soon.

After our hospital visit, we drove past a fun looking park on our way home, so we stopped. I hoped I could link the hospital visit to the fun playground in their memories and we could do it again next year. On World IBD Day. The boys asked if I would be “the monster” and since I had my running shoes on and I had just left a hospital that I used to long to get out of, I chased my boys around. And around. Because I could. Because I was free. Because I know there are others that want to be recovered and walking, running, and desperately want to feel better and want out of the hospital. I played for them. Maybe one day soon, they will play for somebody else too.

The most meaningful part of the day happened in the van, on our ride home. One of my seven year old boys likes to read bits and pieces of my blog posts. Yesterday, he had seen the title “It’s Not a Shit Bag.” I talked to him about my bag and how it’s hard to truly understand something if you don’t know anybody with it. His seven year old heart knows that the “shit” word is not a kind name. I talked about how we all can say things that might not be intended to be hurtful, we may even be trying to be funny but that our words have the power to really hurt others. Or really help others. I talked to my boys about the power of teaching others and forgiving others who made a mistake and may have said something that hurt us. They talked to me about being a pebble in the water. A sweet school lesson on the ripple effect. I believe that people, for the most part, want to be loving and impact others for good, but sometimes, we just don’t know what that looks like. I’m grateful that we got to have a conversation that truly mattered. On a day that possessed so much beauty.

I wanted to say thank you for all of your kindness and support and love. Today. And most every day. I’m so damn lucky to have all of you.