Crohn’s disease

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.

Heavy Pretty Trees

~ Amelia ~ Leave a comment
I’ve spent hours plowing the snow this weekend. I feel strong and productive when I can hurl, shove, and carry the snow across the driveway. It’s rather hard work, yet mostly calming for me. This snowfall landed hard and heavy. It knocked our power out. My boys got to experience how many of our luxuries require electricity. All. The lights. “The TV?” Yes. “The heater?” Yep.
Looking outside, my old tree loving self had conflicting emotions. It was gorgeous yet sad. The beautiful mature trees in our neighborhood looked exhausted as they held up the weight of the snow on their branches the best that they could. All the neighborhood creatures hid silently below the pure white blanket of snow. Interupting the winter silence, I could hear the tree branches crack, snap, fall and I often heard them land on the hard surfaces below.
After one large tree branch fell, my son asked me,
“Mom, should we go tell (our neighbor) that tree just fell?”
When we embrace the life that surrounds us, we all have the tendencies to snow coat our hardships or dwell on how heavy our branches feel. It’s a difficult balance to hold the beauty and acknowledge the pain. Sometimes, I hide from people because I don’t like faking how I feel. Sometimes, I do my best to show that my branches are purely beautiful not heavy. Just like yours, right? But that’s not the truth. If I can be honest and vulnerable then I put out a welcome mat that allows those around me to do the same.
I wanted to share a picture of myself feeling confident and proud of braving the storm. It’s been a rough couple of weeks. Or maybe longer than that. I’ve got a pocket full of hope though. And we’ve got a shoveled driveway and my boys got the sidewalks. We’ve also got our power back on. Lights and heat and dishwashers and dryers are pretty darn nice things to have.
Hold on, heavy pretty trees, I think you’re going to be alright.

Staphylo-(you’re a)-COCC-us

~ Amelia ~ 5 Comments
If I could grow a rainbow mustache, I would do it. It would be beautiful, sparkling and shiny and super clean. Then, people would be fascinated with my colorful mustache and I would be less insecure about the impetigo sores on my face.
Call me crazy, nonsensical or ridiculously impractical (same thing) but I’ve got a problem. With the natural bacterial world. It’s with the seemingly annoying small things like impetigo, cracks in my fingers, and winter diarrhea bugs. Ughhh. Small things. That exist without sharing much great love. Perhaps, having part of my small intestine coming out of my body makes me feel like I should have some sort of super immunity Captain America type shield to the petty peck, peck, pecking away at my immuno-compromised body. It’s quite the opposite though.
Do you know who gets bright red, itchy, burnt pus filled sores on their bodies, faces and under their tiny noses? Children typically do. Sweet little babies who don’t understand. Oh, yes, and my grown ass adult face gets impetigo too.
Oh, how I understand the heinous contagious sores. I tend to them like a diligent gardener. Even though I’m unsure of how to diligently garden. I clean and clean and ointment the painful tender blisters that feel more like burns. OUCH! Mother@&$!€r! Who put their cigarette out under my nose? Who would do that? And in my sleep.
I’ll tell you who. An opportunistic staphylococcus bastard. If I could have negotiated with the bastard before he infected me, I would have said, “Hey, again. Listen, I already have Crohn’s disease and a big ass kidney stone camping out in my left kidney. Can you just leave me the hell alone? For today. Why don’t you go play with C-diff. Just don’t take advantage of my overly-snotted-on broken-down skin under my nose. Please. I beg you.”
Fine. Be that way. I hate you. Yep. I said it. And I do teach my kids not to say the word, “hate.” It’s a bad word and you’re a bad bacteria.
Who am I kidding? Then, I would probably get some aloe-infused Kleenex for Staph because I’ve taken the imaginary conversation too far.
But I’m pretty sure Staph doesn’t listen anyways. Bacteria can be so egotistical. Or is it narcissistic? Thinking they can go wherever they want. Infecting people, surfaces, whatever. It’s cool. They’ve got a confident “don’t fence me in” mentality. You’ve got to hand it to them. Just make sure you wash your hands after you do.
The redness under my nose makes you accidentally make that “ouch, what happened? Did a Kleenex try to kill you? That must hurt face.” You know the one. It’s fine to do it to babies but not so much grown-ups. I feel a bit better and I promise I won’t touch you. Unless I really don’t like you. You should be suspicious if I start doing awkward double face kisses like I’m from another country. Just kidding, I don’t think I’m contagious anymore.
Or am I? Insert evil laugh.
Whatever you do, just say no to “staphylo-(you’re-a)cocc-us.” And wash your hands for crying outloud. I see you, winter. Now, stop it.

 

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Warm Blankets

~ Amelia ~ 1 Comment
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My soul exhales. My soul writes.
My inner critic says in a snarky tone of voice, “what’s so special about what you have to say?” Yet, secretly, I still write perhaps when my grouchy inner critic takes a nap. Just as I breathe. Just as I pray. Everyday, I write.
I recently have had the privilege and honor of taking a class(again) with Ginger Rothhaas, a remarkably inspiring woman, overflowing with hope and love. She kindly spills herself onto all of us as she coaches our souls. You should check her out @ compassionfix.com or ManyOpenGates.com Ginger gently leads, turning my head in a direction that I often avoid. Walking before me, loosely holding the reins, she escorts me down the gravel road of self-compassion. I look ahead and I see the beautiful mountains of God’s overflowing love, grace and patience. For me. I have not travelled this road often enough in my past. This road has not been paved. Yet.
I trust in Ginger’s guidance. She believes in me, probably more than I believe in myself. She has spoken truth to me at such hard times in my life. Times when my inner lies were playing a seemingly endless game of tag in my head. “You’re it. No, you’re it. No tag backs!” She gracefully teaches me how to delicately tend to myself like I would care for a dear loved one.
Today, in class, she asked us to describe what images come to mind when we think of God. I have many loving images and deep feelings that accompany my understanding of God. Feeling safe. Protected. Hugging my children when they’re excitedly running up the hill after school. I watch the hummingbirds and feel God’s love through their beauty and the complexity in their mere existence. I marvel at a creation so tiny yet so breathtakingly mesmerizing. God’s presence seems to accompany me when I’m stuck in the bathroom for the nine millionth time in my life. God has never gone to get me another roll of toilet paper. That would be weird. And hard to believe probably. Thank goodness for my husband. He certainly helps me feel God’s love.
I raised my hand in class today and said that God feels like warm blankets to me. One of the small joys I had when I worked in the pediatric emergency department was bringing warm blankets to kids and sometimes parents too. I loved tucking the warm blanket around their anxious, shivering bodies.
I have also had so many surgeries for Crohn’s disease. I’ve sat in my hospital gown waiting for hours before surgery. I have felt cold, shaky, worried and afraid. But yet, when a kind nurse covers me with warm blankets, their warmth has helped calm me and allowed me to feel less affected by the sterile walls, the bright lights and the hospital smells. Sometimes the nurses have piled multiple warm blankets on top of me to help me. It’s a seemingly small act that I remember vividly despite the memory erasing medicines.
Warm blankets.
My sons have always loved when I preheat their pajamas or towels in the dryer. I love watching the joy on their faces when they hold their warm clothes. “They’re sooooooo warm!” I rarely get to wrap them up in their warm towels anymore, but it’s a beloved bath time ritual that has brought me such joy over the bathtub years.
It’s the beautiful love-fueled and love-filled protected moments like these that help me understand God’s love. For me. And I feel special. And I want to share that feeling. It’s funny how writing works. God’s influence on my snarky thoughts can be pretty overwhelming too.
Thank you, dear Ginger, for the tender construction work that you do on our souls.

Pinkie Rings

~ Amelia ~ 2 Comments
301A1984-A8AD-4A71-8183-1AD19F754415As we sit together in the waiting room, I hand him my wedding rings. It’s our pre-surgery ritual of sorts. He delicately slips them onto his pinkie finger. Well, not really, he shoves them down over his knobby knuckle. His fingers are strong and wider than mine, probably from playing all of the instruments.
He will proudly wear my wedding rings as I fall into an anesthesia-induced sleep. He will wait and pace and drink bad coffee and then wait some more for the surgeon to be done. He will anxiously wait for me to come to the recovery room.
Over the years, he has unexpectedly become an expert hospital cafeteria food critic. He has gotten lost in far too many hospital hallways. He has spent hours upon hours in the waiting room. And I know he would do it all over again.
He would choose me. Complicated old me. He would marry me all over again tomorrow.
I slowly open my eyes. I’m confused. And sleepy. He is there. I relax and close them again because I still feel so sleepy. I’m awake. Again. I’m hurting. So badly. He quickly gets the nurse. I hear him talking to her. He knows I’m not one to complain. He knows me. He knows that I need more pain medicine.
He is hurting, too.
In a different way than me.
He gets no narcotics.
He won’t leave me. He stays right beside me in all of the tiny hospital rooms. He holds my hand. Or he rests his arm gently on the bed because he doesn’t want to hurt my fragile body.
This is hard. This is selfless. This is not me dancing in a silk wedding dress. This is me writhing in pain in an oversized unisex hospital gown. It seems that there is nothing in this for him.
I’ve lived long enough to know that this kind of love is rare.
This is a small glimpse of my husband’s love for me.
When I’m more alert and my pain is not controlling my mind, I tell him that he can go. He doesn’t want to but I need him to make sure our kids are doing okay too. He is pulled in a million different directions but he manages to handle the uncertainty, the chaos, and the unfairness of it all with an unearthly amount of patience, and the most delicate form of kindness and grace. Gut-wrenching grace. I love him every day of the week but the days I spend in the hospital and in recovery, I somehow love him so much more.
He fills me up when I am empty. Tired. Worn out and in too much pain to be mad. When all of my dignity has been scattered throughout that hospital, he searches patiently and always finds it. Then, he secretly delivers it back to me without making a big scene.
I can try but his faithfulness and his love for me is hard to describe in words. I feel it. He carries me through, somehow without ever needing to lift my aching body.
Could the greatest gift to our marriage be this never-stopping, forever humbling, life-altering, soul-shaking disease? I don’t know. It’s probably not fair for me to answer for the both of us.
I’m not the one wearing the pinkie wedding rings.
What I do know is that God has these sneaky beautiful soul-capturing ways to show his love and tenderness through the worst and most unfair situations. Failed surgeries. Complications. Loss. Pain. Uncertainty. But yet, Hope with a capital “H” has taught us how to be honest, forgiving, humble, patient and ever grateful for the days we get to spend together.
Fourteen years of marriage. Together. A twisting, turning, chaotic, unpredictable, beautiful and hard journey that we have learned to embrace together.
I’m forever grateful and proud of the husband he is. I’m honored that he is willing to wear my wedding rings on the days when I can’t.
Oh, how I love you, Cory. The morst. To the moon and back. To infinity and beyond. A million billion.

Namaste, #38

~ Amelia ~ 1 Comment
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I still don’t quite exactly know what “namaste” means despite taking many yoga classes this year. But that’s not going to stop me from oversaying it. Or misusing it. I’ve lived thirty eight pretty darn full years. I used to think thirty year olds shouldn’t be in the club. Don’t even get my early-twenty year old self started on those creepy forty year olds sitting at the bar.
Well, things do change, thank goodness. When you start getting older, you realize how young old folks really are. Actually, you realize that your chroniological age doesn’t have much to do with who you are, who you love, and how you live your life. It’s just a number, not a definition. People always think I’m younger than I am. Probably because I act like a big goof or maybe because of my freckles or perhaps it’s a perk of my adult acne. A man told me yesterday, “you don’t look like you should have three kids.” Well, thank you, I guess. Although I do have a few gray hairs.
I thought I should write down thirty eight awesome things I did this year. I think I grew wiser and stronger. And I also recognized I’m weaker and not as smart as I once thought I was. Aging is a humbling process. And confusing. I think I don’t take it as personally having had Crohn’s disease for so many years. Weird things happen to your body when you get older. So what. Weirder things have been happening to my body for a long time. But. “Why, God, why the chin hairs? What is their purpose?” Anyways, my random list of questions for God grows.
I like lists when they don’t have “to do“ on the top. Unless I’ve secretly written the “to do” list after I’ve already done all the things. Those brutal “to do” lists always give me feelings of inadequacy. So, here is my “38 years done” list. I’m pretty grateful and proud and also extremely humbled and sometimes dumbfounded by all of the love that surrounds me, fills me up, holds me up, builds me up and sits right next to me on the floor. I got another year and that’s amazing. I can’t wait to live it up for my 39th year on planet Earth.
Here goes: 38 Years Done
  1. I used my yoga pants and yoga mat to take…..yoga classes. Say what? I love that standing tree pose and happy baby. The end meditation nap is amazing too. Namaste.
  2. My poor knees and I played basketball on a co-ed basketball team. I missed a lot of shots, said cuss words, but I had a lot of fun. My boys asked me if I could dunk. I told them “not in this league, it’s illegal.” That’s all they need to know about that.
  3. Oh man. What a year of stellar concerts. U2 with my big boys and Cory. Amazing. Ani Defranco with my hubs. Diana Krall and her busy tapping stilettos with my hubs. Brandy Carlile with some dear friends.
  4. I coached two of my sons’ basketball teams. I learned that I’m a loud fighter for injustice when a team, um, or Coach breaks the rules by running a zone. And don’t call me “sweetie.” I learned that some egotistical male coaches have a hard time shaking hands at the end of the game after losing to a female coach. Because of the beautiful, kindhearted, never-stopping fighting spirits of my players, we lost a lot of games but we won the sportsmanship award. The biggest win. I said, “chin the ball” about a million times.
  5. I held a fish. With it’s squirming rainbow scales.
  6. I lead a small group, met amazing women who shared their stories, months of life, and helped my family so much during surgery.
  7. We went to Disney world! We shared so many fun memories. Holy smokes, that Avatar ride. I felt like we could all say we rode on a banshee. Except Colby, please don’t talk about it to him. He feared for his life. Rightfully so. It seemed so real.
  8. I taught half-day momergarten which consisted of so many unforgettable moments with my youngest boy. We found deer antlers in the woods. We stalked-in a nice way- bald eagles and even saw one poop. We rode the Adams tag along bike to get lunch. I could go on and on. It was the best year!
  9. I learned that when my body makes something, it makes it strong, difficult to reach, and indestructible. My kidney stones would not be blasted by the lithotripsy semi-truck. $20,000 later.
  10. I learned that if there is a rare complication to be had with kidney stone surgery, my body will teach and humble the most intelligent and experienced of surgeons. I learned (again) that a mom’s instincts last long after the years that your child lives in the same home with you. My right kidney doesn’t have a big ass kidney stone living in it anymore. We’re still paying for the cost of it’s removal. I have a few more scars. I feel incredibly loved.
  11. I touched a stingray, mainly because my boys wanted me to.
  12. I volunteered with hospice. I prayed every time before I entered the doors. I painted nails, held hands, listened, cried, laughed, and also advocated for my patient to meet my boys before she died. So shut your face, HIPPA. If I’m in my nineties and dying, please bring all the children to me.
  13. I accidentally yet magically made eye contact with a hummingbird. It wasn’t a stare contest because I would have won. I had just put the feeders back up and she buzzed right up to get a drink. She looked at me. I froze. Then, she took a drink. Best moment of that day.
  14. My son and I blew up the inflatable kayak, aka “The Banana Boat.” My boys floated down the creek and I could have cried if I wasn’t so focused on making sure a snake wasn’t going to get me. They paddled and our dog swam beside them. It was a heaven on earth moment.
  15. We went to the roller derby! I asked so many questions to a roller derby girl. It was awesome. I decided my derby name would be “ Body Bag”
  16. The boys and I went to “Mother/Son Prom.” It involved lots of soda pop and dancing!
  17. We had a night at The Raphael and a downtown date night. A gift for my husband for ten years of employment.
  18. We took the train to St. Louis. We went up in the St. Loius Arch, not for those with fear of height and claustrophobic tendencies. We also spent a day at The City Museum, where we all got to be kids exploring, climbing and having so much fun!
  19. I dressed up as a unicorn, Skittles, with the help of my mom and sons. One of my son’s was the rear end and he sprayed silly string out because I was a shy unicorn that pooped when I got nervous. Unicorns are real.
  20. I got up on water skis. Water sports can be nerve wracking with an ileostomy. But they’re so much fun. I’m grateful to have patient and generous in-laws. My knees and back wondered what the hell I thought I was doing.
  21. I had acupuncture done to ameliorate my kidney pain. It was a pretty awesome experience. We have the most compassionate and kind-hearted healing chiropractor. She has helped me so much.
  22. My youngest son and I untangled a steel blue dragonfly that was trapped in a spiderweb. It looked hopeless but she sat on me for nearly ten minutes and allowed me to gently pull the sticky web off of her wings. She happily flew away when we got all of the spiderweb off of her. My son said she “peed a lot on me.” It’s not the first time I’ve been peed on.
  23. I have made beautiful life giving, soul-expanding friends who have helped me feel less alone and more comfortable being ever-changing, ever-feeling me. They have walked with me, talked with me, laughed with me, cried with me, sat with me and cared for me in such tender ways you wouldn’t know we weren’t boood sisters.
  24. I have cherished the time with my children and the unwrapped daily gifts they constantly give me. All of the kitchen table moments, playground moments, couch cuddling moments, basketball court moments, treehouse moments, the nighttime conversations, the hugs, the giggles, open mouth laughs, the tears. The questions. The answers. I love being their mother. Somehow as seemingly impossible as it is, I find the space to love them even more so than I did the last year.
  25. We said goodbye to our fourteen year old Gizmo dog. He’s been through so much with our family over the years. He loved us all and entertained the boys for years. We all sat together at the vet. We made slideshows and have cried many tears for him. We planted a tree in his honor.
  26. I got stuck in a dress (or two) in a tiny Nordstrom rack dressing room while my three boys laughed and laughed some of the greatest laughs I’ve ever heard. I ended up borrowing a dress from my mom. The problem with broad shoulders and three little boys as dress shopping mates is that you will probably not find a wedding dress.
  27. We danced and danced at one of the most fun weddings we’ve been to. During “Shout” when I was laying down on the floor, a woman asked me if I was hurt. Nope. Just getting realllllly into the “a little but softer now…” if somebody’s not ready to call 9-1-1, are you really dancing as hard as you can? Probably not.
  28. I read so many books this year. Oh, how I love to read. I should have written all of the titles down. I will try to do that in my 39th year. One of my favorite’s was “The Rabbi’s Heartbeat” because it spoke to my soul.
  29. A dear friend and I accidentally summoned the police for our mom shenanigans. Unbeknownst to us, a walker had called the Overland Park police on our attempts at a “first annual glow in the dark” nighttime Easter egg hunt. Apparently, it looked like we were lighting tiny fires in the woods (as we hid the lit-up eggs) The police didn’t end up coming. Another walker called them back. And our kids loved finding the glowing eggs. The forest looked absolutely magical as the eggs flickered in the night.
  30. We’ve had countless memorable late night dinners, goodbye dinners, birthday dinners, celebratory dinners, just because get-togethers. We have such a diverse group of fun, loving, laughing friends and family.
  31. We survived Cory’s Doctor prescribed vocal rest. I never knew how hard it would be on all of us not being able to talk to Cory for two weeks.
  32. We walked up and down the hill hundreds of times. Back and forth to the school, the playground, the baseball field, the creek. This quote from “UP” resonates with me. “That might sound boring but I think the boring stuff is the stuff I remember the most.”
  33. I’ve looked for lost boys’ shoes countless times. I’ve held too many sticks to count (that’s  what she said.) I’ve been a bar back/sous chef/LEGO assistant specializing in organizing the Legos by color. I’ve played dodge ball, dog monster, knock out, Sandlot baseball, and candy poker, of course.
  34. I, along with my six siblings, surprised my dad to be present for a huge award he received honoring the work and time he has devoted and volunteered for the Nonprofit business alliance. We were all so proud to sit at that table front center. We also laughed a lot. I may have made my sister wet her pantyhose. I won’t say which one.
  35. I feel like I should give myself credit every year for all of the pain, hardships, uncertainty of my physical health, Crohn’s disease and it’s tag-along friends. I’ve changed my ileostomy bag too many times to count. I’ve opened medical bills. So many medical bills. I’ve taken a lot of trips to the ostomy care center. It’s all I know but it’s still hard sometimes. And tricky. And never ending. Day by day. Thanks, Ben Stiller.
  36.  I admired the Kansas sunsets and the cotton candy clouds. The double rainbows. The wild flowers. The birds of all the seasons. The deer. The slap happy butterflies. I fed a baby rabbit. I love and appreciate the complexity and mesmerizing beauty of nature more every year. It’s such a quiet constant whisper of God’s presence and love.
  37. Lots of pressure for my last thing. I loved those around me in the best ways I could. I tried to be present, I prayed to be more. I hoped and dreamed and tried to be grateful even in the midst of the ditchy moments. I’m thankful for those who give me room to grow and patience for all of the ways I fall short. I’m the luckiest.

Unicorns and Sharks

~ Amelia ~ Leave a comment

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Play typically comes naturally to me. I have always loved climbing trees, goofing off, and making up games. Spinning in circles. Rolling down hills. Riding my bike. As a kid, I played nonstop until I HAD to eat dinner or until it got dark. Then, I ran home as fast as I could past the scary enormous weeping willow into our backyard. I still play until it gets dark as an adult, as a mother. I’m still pretty horrible about dinner. I walk, run, chase, and hide with my children and oftentimes, other children, on the playground. Last spring, a sweet inquisitive classmate of my son’s asked me, “Why are you a grown up and you’re playing?” My response, “Because I like to and my kids asked me to be the dog monster.”

Children fascinate me, mesmerize me and inspire me with their perspectives, curiosity, their creativity, their resilience and determination to keep playing. Two weeks ago, my youngest son fractured his fibula and had to get a cast. My grown-up self proceeded to over think his future weeks and the difficulties he may face with starting school. He, on the other hand, walked right out of the office and has not complained once except when he had an itch underneath his cast. “Can I use a stick to itch my leg?” He has altered and adapted his play, yet he has not stopped. He has not asked for a pinata for his pity party and he has not begged for trouble and uncertainty from the future.

He lives perfectly and rather magically in the present moment. That’s one of the most beautiful things about kids. But yet, we, adults, often push, elbow and encourage them to change. Hurry up. Grow up. Too fast. We take away play opportunities because we think they need to be more serious, more adult-like. Meh. They have so long to be grown ups and such a very short time to be children.

Every day, children and grown-ups need to play. Life can be so serious and sad and downright bumpy, twisty and scary to navigate through sometimes. We desperately need our imaginations to help us find our way through this life. We need laughter, silliness, fun and learning through challenging ourselves. Come on, walk up the slide sometime. Remember when you would swing so high your belly would “get scared” as my son says?

After I took a few pictures of my boys, I put on the snorkel mask this afternoon. I pretended I was a shark. When I jumped into the water, a million bubbles raced to the top of the water. The water was clear and the sun’s rays burst through and danced on the bright blue bottom of the pool. I watched my boys’ long legs kick below the surface. I usually swim with my eyes closed. And I miss so much. Not today. I wore the equivalent of a bike helmet under water: goggles with a nose piece. I loved playing and watching my boys work together to save a water unicorn from me, a mom shark. They devised a plan while I went under water. They outsmart me. No surprise there. We played. We laughed. And we happily escaped to the glorious land of imagination.

Lately, my guts have been grumbling and achy. I’ve tried eating this or not eating that. Ugh. I’ve been annoyed, frustrated and uncertain. But today, I told my husband that I will not let my Crohn’s tell me how I should feel mentally, emotionally, or spiritually. I will treat myself kindly but I will still play. Because I need to. I will smile or make goofy faces at myself for 30 seconds in the mirror. I will tell myself that I’m doing really great today. And it won’t be a lie. I will play. In my house. Outside. In church. And everywhere else that I go because that’s what I do. I will blow bubbles in my van with my air conditioner on high. I will use angel hair pasta for light saber fights. And I will watch in awe as the hummingbirds whiz by.

I will try my best to live in the present moment. And strive to act more like a child. My children.

 

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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.