Paralyzed Butterfly

IMG_8668

This morning on my walk, I stumbled upon a Monarch butterfly struggling in the grass. I wondered if she, too, had just dropped her kindergartner off at school. She kept reaching out with one of her legs to find the next piece of grass but she couldn’t quite get there. I pushed the piece of grass closer to her and she moved. She flopped her wings. I looked to see if one of them was broken. I pulled my dog away from her. Perhaps, she was dying. Did you know that Monarch butterflies have hairy backs?

I decided to pick her up without touching her beautiful wings. So delicate and vibrantly patterned. As I held her on my hand, she flew away. I nearly cried. Then, I started thinking about how God is here. In everything. He sees the broken-hearted mamas and he lifts us up. He changes our perspective. He shows us that we weren’t meant to be down in the grass. We are meant to fly.

For nearly twelve years, I worked with hospitalized kids and families enduring horrible traumas, never-ending sicknesses, and unimaginable accidents. I’ve played with orphaned siblings and cried with grieving mothers. I’ve found blankets for lifeless children. I know for a fact that every single one of these families would have given anything to see their children walk into elementary school, middle school, and high school. Growth is a beautiful thing. Growth is an honor. It’s a privilege.

But growth is still hard on a mama’s heart.

Especially this mama’s.

My older sons walked their little brother into his kindergarten classroom today. He didn’t need me, his mama. On day two. I watched their three backpacked bodies walk away. Their little healthy lives flashed before me. Their giggles. Their first steps. The enthusiastic ways that they jump off of the couch onto the pillow forts they have created below. Suddenly, as I walked away, I laughed at the goofy way Patch, our dog, runs through tall grass. I smiled.

Then, I looked down and saw the struggling butterfly.

One of mine and my boys’ favorite memories of my grandma is when she held a flower from my mom’s garden and suddenly, a butterfly landed on that flower. Today, a struggling mother, me, held a struggling butterfly. It’s undeniable proof that God can use the most fragile and tiny creatures of this world to shift our perspective from the dirt to the clouds.

IMG_8670

I have broken into the extra school supplies, especially the boxes of Kirkland kleenex. I have sat in my Grandma’s chair and cried with the dog staring awkwardly at me. Yesterday, I  told my husband that I was not going to share my writings because when you’re vulnerable and raw with your emotions, some people try to proofread your feelings or predict or edit them altogether. This really  hurts and can feel like someone is rubbing alcohol or lemon juice on an open wound. He said that’s not everybody and that’s not fair and that I have to keep writing. He’s right, I suppose. Thank you for those of you who say comforting things like, “I’m sitting beside my mama. The mother/child bond sure is a strong one.” I will keep sharing for those of you who do the hard work of feeling emotions deeply and as a result, sometimes feel like a paralyzed butterfly.

You’re not. You may just need to be gently lifted up. You’re beautiful and capable. You have unique and extraordinary wings and you will be flying again soon.

Jesus and Mama Tears

IMG_1748

There is something extraordinarily healing and powerful that takes root inside of me knowing that Jesus wept.

The other night I had my head bowed in shame as I sat at the kitchen table. I had just overreacted to one of my boys climbing on the outside of the steps, resulting in a broken thrift store umbrella holder. After I cleaned up the mess, I sat there alone and began crying so hard that my tears dropped down onto the kitchen floor. I think it could have been classified as “weeping.” I mentally backed myself into a corner and beat myself up about all the ways I fail as a human being. As a mother. As a wife.

Because isn’t that we do? Beat ourselves up when we don’t have the strength to go grab a Kleenex or some toilet paper to soften the blow of our tears. And when the tears of guilt flow, they sure know how to awaken the dried up wells of inadequacy, loss and despair.

In my heightened emotional state, I texted my husband and a friend letting them know what an asshole I had been. They each kindly offered to help me out of the pit of doom. I thought it may be helpful if I created a hotline for parents, “1-800-ILOSTMYSHIT.” The operator could have a file folder ready to remind you of all the other times when you handled chaos better, a bit more gracefully. The kind person, probably a volunteer, on the line could perhaps console you and tell you about a time that they also overreacted to routine kid chaos.

The thing is that I usually can cry it out, apologize to my boys and hope and pray for their forgiveness and God’s strength to do better next time. Then, we move on. To the dog park or to a game of checkers. Or whatever. My boys, thankfully, have this crazy awesome ability to forgive me and love me through my guilt and shortcomings as a mother.

In hindsight, like a few days later, who really cares about a thrift store umbrella holder? Obviously not the person who donated it to the thrift store. I don’t want my boys to be wreckless and purposely break stuff, but if anyone should understand breaking stuff accidentally, it should be me. I realize that I had some built-up, constant mud and mess-cleaning up anger that I should have released at ripple glass therapy.

Sadly, and not so sadly, sometimes, those we love the most intensely get to see the yucky, jagged and broken sides of us. Inside of our homes. Our cars. Unfiltered, not touched-up, the raw ugly-cry moments. The moments when we feel exhausted, sad, hopeless, helpless and burdened by our own imperfections. The difficult and painful moments of growth, roots shifting or branches getting pruned.

As I did my Lenten sharpie marker art this morning, I realized just how grateful I am to cling to the belief that Jesus gets me the most. So, I am reminded to grab on tightly to the hope offered in the extra soft, aloe-infused Kleenex He hands me. Time and time again. Today, I’m humbled and gratefully aware that his grace daily protects, strengthens, and carries us.

Amen.

Shattered. The healing place.

image

I will meet you at the place. The place where it hurts.

I will meet you in your pain. I will hold you through your grief.

I will meet you in the place where your dreams shattered off the wall.

I will join you in your tears. I will drop my hand gently on your back when you’re sobbing. When you’re curled up into a ball with your back turned away from the world.

I get it. I understand. The rest of the world should be crying too.

I will journey to that place with you.

The hurting place.

That place where I have been before.

I know the way.

I don’t need a map.

I see you. Your eyes. I hear you. The words you don’t have to say. I feel you. Your pain. The after shock.

I recognize your broken eyes. I can sense your empty, crowded brain.

I can help you take a breath.

I can tightly hold your hand.

I can hug your shaking body.

I can sit up against the wall with you.

If you only will let me in.

I’ve been to the hurting place many times before.

I know it can be an awful, lonely and scary place especially if no one ever comes to knock on the door.

Let me help you. Hold you. Hear you.

Let me in.

When you’re ready, I will lift you up. We can take one step and then another. Or we can stop and take a break.

I will be with you. You don’t have to look up. Yet. You will know that I’m there. We can journey to the healing place.

I’ve been there before too.

I will show you the different paths that I have tried.

Maybe you will see a different way. We can journey together.

Next to each other.

We will make it to the healing place.

Undressed Emotions

image

I guess I will get my emotions dressed up for you. You seem to handle them better with make-up on. All nice and pretty and seemingly unaffected by the storm of life happening around me. I don’t like to pretend but I can’t handle the pain of my feelings being used against me. So, I will disguise them in humor or unrealistic optimism and perhaps a bit of exhausted joy just for you. Then, you will feel better about me. And my diseases.

Every day I wake up, in the middle of the night, like tonight, and I live my life with diseases that let their presence be known. Always. Every single day. I don’t forget that I have them. Ever. My body won’t let me and neither will my heart and mind. That’s the definition of chronic. But I make a conscious decision daily: I choose to rise above the pain, the frustrations, the inconveniences, and the disabilities. It’s an extremely delicate balancing act which is difficult because I’ve always been a bit clumsy. If I talk about it too much, I’m perceived as letting the disease control me or define me. If I don’t talk about it all, I’m somehow resilient yet I feel ashamed, dishonest and like I’m denying myself of tiny, yet powerful everyday kind-of luxuries that I grant to those whom I love. When I say luxuries, I mean vulnerability, compassion, grace, forgiveness and honesty.

Most days, if you looked in on my life, you would never know the burdens that I carry. Because I probably don’t want you to. I don’t want your pity, your hopeless looks or your unintentional alienation. I also don’t want to feel so damn different that I become the chameleon who is awkwardly late to adjust to her new surroundings. I know I’m different. But I also believe that, thankfully, we all are. There’s no possible way that nearly twenty years of chronic disease cannot impact your physical, mental and emotional well-being. It affects who you are, how you relate to others and all the ways that you live your life.

If I show you or tell you about a horrible experience or a day that will make you want to cry, it’s because I trust you to handle my disease in a dignifying way. Or perhaps I’m willing to sacrifice a bit of my pride or privacy in hopes that you will grow in your understanding, compassion or sensitivity to others around you. I’m not trying to gain attention to boost my ego. But is it helpful when people who I value encourage me? Yes. Especially in the moments when I’ve been wounded so deeply that I’m tempted to never speak of this disease again.

I will pull myself back up again and remind myself that oftentimes I speak for a group whose voice has been muffled or lost or ignored. Or misunderstood.

I will write for the mothers who are too damn tired because I have strength in this moment. I will write for the daughters who are scared and hopeless and feel excluded. I will write for the boys and men who have been told they should keep fighting yet that they’re not supposed to cry. I will write for anybody who has ever been momentarily bullied by life. I will write for all those who feel the shivering, aching presence of grief. I will always write because the light, the good, and the extraordinary capabilities of the human spirit triumph all of the shit. Time and time again.

Life is rarely a bowl full of cherries but that doesn’t mean that it still can’t be something pretty great.

I guess I have changed my mind. And my heart. Again.

I will not dress up my emotions and feelings to make them prettier or easier for you to handle. They are real. Raw. Truthful. Difficult. They are joyful. They are powerful. And they are practically impossible to conceal. I spent many years pretending and hiding and being truly myself to only a handful of people. Fear had a tight grip on my shoulders. I didn’t fully trust God’s beautiful awesome power to use the bad to cast a spotlight on the good. Thankfully, I have adapted and evolved over the past twenty years. God continues to perfectly place people in my life who fill me and strengthen my soul with hope.

The beautiful, rare and unexpected gifts that accompany pain and chronic illness will always loosen the ever-present restraints. I breathe easier with an adjusted perspective, overwhelming gratefulness, a heightened awareness of mortality, and the undeniable presence of being surrounded by unconditional love. Thank God for the camouflaged gifts and for all of those who graciously give my heart more space to grow through it all.

 

Nobody Understands Land

It’s a dark and lonely land. You don’t go there often because you know that not much good comes out of even a brief visit there. It’s totally quiet in the house. After bedtime. Outside your window, you can hear the crickets and locusts talking nonstop to the moon but that’s about all.

It’s nighttime.

You’ve somehow managed to make it through another day, but you’re so tired. More like exhausted. You desperately need rest. You crave sleep because your body keeps borrowing calories from itself to fight the diseases. Your diseases.

You let yourself think about it momentarily. Living with chronic illness. Even when the physical symptoms subside, the emotional and mental drain persist. The disabilities you think you disguise so well in attempts to not gain pity or unsolicited attention, worry or that look in another’s eyes.

But tonight, you let go. You give yourself the freedom to temporarily think about all of the hardships. The many ways your life is different, more difficult. How even now in the dark, by yourself, you’re afraid to take the deep breaths that you need because you may start coughing. Damn lungs. Then, your guts will ache. Damn guts.

Your sad late night thinking helps you catch the red-eye flight. Destination: “Nobody Understands Land.” You’re on the plane. Without flight attendants. All alone.

You arrive.

Hello, there.

Welcome to “Nobody Understands Land.”

Only nobody is there to greet you. It does not feel like an all-inclusive vacation. Or a romantic get-away. It feels cold. Empty. Desolate. It feels like you’re standing in an uncomfortable place. A place where your thoughts and feelings chose to go. But strangely, your weary body knew better. You don’t have a jacket. Big surprise: all of your luggage got lost.

Everyone you were traveling with must have hopped on a different plane. A plane that you could have caught a long time ago before your life changed forever. Before you got sick.

Your life is different now. From all of theirs.

Tonight, you’re right. Nobody understands the pain of living with the daily physical reminders of your fragility. Your broken guts. Your struggling lungs. Your twisting kidneys. And all of the other parts that ache or quietly whimper. Nobody could possibly understand the isolation associated with the millions of different directions your diseased thoughts can go.

Yet, somehow their favorite guilty pleasure and escape is, “Nobody Understands Land.”

Only, it feels hopeless there. It should never be a final stop. A brief lay-over might be okay. A place to sit for a moment. “Alonely,” as one of your boys might say. You stop, sit down. You think and think until you feel a tapping on your shoulder. That nudging. Oh. God interrupts you, picks you up and carries you to catch your flight back home. As you’re in God’s arms, you look around. Ahhhh. You see. It’s not empty. It’s not so dark anymore. There are others. Tons of others. All of them are looking down as they hold their heads in their hands. You can’t leave yet, you need them to know too. They are not so different. They are not all alone. You see them. You need them to see you too. You jump out of God’s arms to tell them that you understand. Because you do.

Every single time, He gets you out of “Nobody Understands Land.” Because it’s not true.

Somebody always understands. Somebody sits in the chair and aches right next to you. Perhaps a different physical hurt but somehow the same feeling. A universally understood hurt. Empathy can be real. There’s always someone somewhere who gets it. Someone who truly understands or wants to try and understand. Someone who feels your pain, recognizes the pain in your eyes and wants to take it all away. But since they cannot, they sit next to you. Holding your hand so you can feel their presence or so that they can feel yours.

image

You are not alone. You never have been. You never will be.

Somebody always understands.

Thanksgiving Day Birds

imageMy rational thinking mind knows that it’s pretty selfish to assume that God sent hundreds of different kinds of birds to my backyard this morning. It felt like a beautiful gift. Just for me. Perhaps, He sent them to bring me hope or joy or to peck away at my grief or sorrows, my heartaches and hopelessness.

Despite my disbelieving mind, my spirit-filled heart completely trusts and believes in a God that hears my cries and hates for me to feel the heavy burden of grief, loss and heartache. I believe that He hates for me to be trapped in my feelings. Isolated. All alone. I believe He lifts my chin and helps me see the beauty, the freedom outside my window.

So, as I sat staring out my kitchen window in amazement and wonder at the sudden appearance of all of the Thanksgiving Day birds, my soul surrendered to the simplicity, the beauty, and the ease at which His tiny creatures fly from branch to feeder to fence post. I made eye contact with one of my favorites, the yellow finch, “my Grandma bird,” whose feathers have transformed to accommodate the next dreary season. No longer the striking, bright yellow summer feathers. I sat close enough, only a few feet way, separated by glass. I could barely see the pale yellow neck feathers hidden beneath the new tree trunk-brown winter feathers.

In moments like these, I feel my Grandma and I miss her in an indescribable way. I want to be in her presence. I want to hear her voice. I want to feel like everything is going to be okay. I don’t know that she understood the secret gentle power she possessed. The ability to heal my aching heart.

She had this instinctual ability to relate to me on a level that few can. I miss her honesty. I miss her openness with her feelings, the joyful and sad, painful-to-hear ones and all of the complicated ones in between. I miss the little things, like sitting next to her and filling her cup up with fresh iced water. I miss watching my boys run down the hall to swing open her door and surprise her. I miss her sweet voice telling me some powerfully encouraging words. I miss hugging her and telling her, “I love you, Grandma.” I miss her habitual response, “I know you do. I love you, too.”

Holidays are typically supposed to be happy times but they can be so hard when you’re missing a person. They can serve as a painful reminder that someone who was always around is not here anymore. Just gone. The robins, blue jays, yellow finch, doves, cardinals, and all the other birds flying around today reminded me of my Grandma. I like to think of her as strong and totally freed from pain. I like to think of her. I’m grateful that the zipping crowds of birds outside my window helped remind me of her and her never ending love.

Freed

image

It’s a bit of a frustrating process to get life insurance when you’ve got medical issues. Not huge ones, but chronic ones. It can feel like complete crap calling doctors offices to get diagnosis dates and other details that an underwriter needs for research to determine what an appropriate annual rate will be for someone with your history. Fixating on all of your body’s problems can be a real buzz kill. I understand though. I’m a hot mess on paper.  It’s a risk taking on someone like me. My husband says that my medical history can make me look pretty bad but in person, He’s like “Damn, girl.” I paraphrased him.

I don’t think the average person would listen to my medical history and current conditions and feel like I have been “healed.”

Here it goes….a clep blog version.

I had a benign hip tumor surgically removed in high school. Two reconstructive ACL surgeries in college. Total colectomy with ileo-anal pouch anastomosis the summer following my freshman year in college. Countless failed surgeries for fistula repairs. Guinea pig much? Three different states by three separate surgeons following college. The “best surgeons” in the field. Two of which did unethical things to my body, without my consent.

I have a micro tumor on my pituitary gland that can cause some real problems, despite its itty bitty millimeter size. I’ve got junked-up, scarred lungs that struggle to get mucous out on their own. There’s a disease for that: bronchiectasis. A tricky one to spell. My lungs need a little love from albuterol and the acapella valve from time to time. And no, it doesn’t sound like sweet non-instrumental music. I will take instruments, please, any day of the week. It sounds more like Darth Vader’s wife.

I don’t have my large intestine anymore. Yes, you can live without one. Unlike a lizard’s tail, mine has not magically grown back after being surgically removed for being straight-up diseased. Dead. Unresponsive to meds, beyond resuscitation. I do miss it from time to time, when I’m going to the bathroom ten or so times a day. Especially in the middle of the night during one of those rare good dreams that you want to hop back into. But ughhh, you can’t.

I guess, selfishly, I have hard time spiritually processing things when I hear of people being miraculously or momentarily “healed” or cured. In God’s name. I guess I get a bit pissy and confused because I’ve said about a million prayers. Not just for me. And I’m pretty sure those who love me have said more. It makes me feel pretty damn unimportant. And I think, “why not me?” Or why not the starving kids, abused kids or women being raped? Victims of brutal genocide. Especially the littlest ones. Cancer patients. Or the millions of other afflictions that just flat-out suck much more than mine.

Well, let’s analyze it. I’ve done my fair share of bad stuff. Rebellious stuff. Ungodly stuff. But still, I’ve never wavered in my faith in God. Or his love for me. I love Jesus. I get Him. He gets me. He knows my heart the best. He understands me. He searches me out and always finds me. Wherever I am, be it on the bathroom floor or next to the kitchen sink. In my closet. In a hospital room. In my car. He’s kind of like a crazy never ending Dr. Seuss book. I can’t escape him. He throws a crud-ton of grace down on me. Constantly. And forgives me all the time. I believe this.

I think he welcomes my doubts and fears and all of my hurts too. My humanities. He recognizes the many different kinds of tears that trickle, stream, sneak and flood down my face. Most importantly, he holds me accountable. Picks me up off of the bathroom floor, most times, in the form of my husband. He shows me a glimpse of my potential. He expects me to do more, persevere and grow. Love harder, and never settle for convenience, complacency or boredom. He instills an infinite supply of hope inside my heart. My mind. And my soul.

I’ve actually got an ongoing list of questions for God to answer. Not that God needs my list. But I do. One day, I hope he will answer all of my random ones, like “what’s up with moths eating all of our sweaters”, or “Why I am I wide awake after having sex but my husband falls into a coma-like sleep state?” There are the deeper, more complicated questions too, like “why do kids have to die? Ever.” Or “why did soooooo many of my surgeries fail?”

I often start deep sea thinking and praying like I do. When I’m vacuuming. Or driving. Or in the shower. I’m typically trying to work things out with God. Let it all out. Like a true intro-extrovert. Or maybe it’s God trying to soften my heart and strengthen my faith, despite human beings’ attempts to destroy it. I’m attempting to move outside of the anger. The sadness or resentment. And the unfairness and the hurt. Somehow, I’ve got to see through it, past it, over it or under it. But it’s a stumbling feeling. Awkward like my feet have fallen asleep. I can’t move. I’ve got to shake them out, wake them up, even perhaps crawl on to reach the hope.

The good.

The beautiful.

It’s there. I know it. It can be sneaky. Even hidden. But it’s always truly present. And although I may not be Steve Martin in “Leap of Faith” kind of healed, I think I’ve been freed of a lot of suffocating, life-stealing things.

I’ve been freed from the illusion of perfection. Nothing and nobody is perfect. My body will never be perfect. Ever. In a ton of ways. I will always have big feet, a big nose, freckles, and scars. A lot of scars. And if I want to be naked, totally naked, I will always look down and see the bright red flesh, the part of my small intestine that’s been pulled from the inside out of my lower abdomen. To save my life. It won’t go away. Ever. No matter how many prayers I could say for the regeneration of my colon, it’s not happening. Save your breath.

My diseased body will always present obstacles and physical limits. I’ve come to terms with this over the years. It’s hard to be different, but I am. I think we all are. I have had to worry about deep things most women don’t have to. And perhaps may never ever think about, especially not on a daily basis.

It’s not that I believe that God doesn’t possess the power to do mind blowing miraculous things. He could regenerate a healthy colon for me if he wanted to. Or heal my scarred lungs. But there’s bigger more important lessons I’ve learned through the pain, frustration, disappointments and failures. I believe he’s surrounded me with people who tell me they love me, despite my missing parts. So, I pray instead for God to change my thinking, change my eyes to more readily see those around me and make me proud of who I am and all that I’ve overcome. Through Him. Proud, not ashamed. I pray that God uses me and my experiences to encourage others in an honest, transparent and freeing way. And guess what? Miraculously, these prayers have been answered. Time and time again.

I’ve been truly honored and humbled and a little overwhelmed by the love. I’ve been grateful that friends will openly share their struggles and experiences with me too. The other day, one of my friends confided in me telling me that she pooped her pants In the night and I told her “That’s not a big deal. So what? You know how many times and places I’ve shit my pants?” She told me that she knew I would be a safe person to tell, that I wouldn’t judge her. (I would only blog about her. With her permission.)

It feels a lot better knowing that it’s ok to shit your pants. That somebody else has done it too, you know? I’m truly grateful for all of the hard things that I’ve felt in my life(that’s what she said…I couldn’t help it) They’ve given me the ability to truly feel and understand a little bit more of what others may be going through. Pain is pain. Physical, mental or emotional. Isolation is isolation. And loneliness is loneliness. Don’t even get me started on shame.

God has strangely and miraculously shown me and taught me so many more meaningful lessons through the awful and painful parts of my life than I’ve ever learned through the blue skies and rainbows. I feel like through all of the hard times, I’ve been humbled, dependent, and gratefully aware of what’s most important in life. I get this awesome privilege of experiencing the beautiful parts at an insanely heightened level. I constantly encounter these most inspiring, sacrificing, loving, and genuine people. The ones that doubt and fear, laugh and love radically, outside the norm. I get to meet people that don’t shy away from the hard places, the ones who put themselves out there knowing they will be affected, mocked, bruised, and knocked down a little or a lot by life’s hurts. And they will be changed. Transformed in a caterpillar to a butterfly kind of way. Once you grow wings, you don’t want to go back to squirming around on a tree branch.

I’ve been picked up by these best kinds of people time and time again. They matter the most. And they are who I want my kids to be like when they grow up.

They may or may not know it, but they are real-life people living out the type of love Jesus talked about. The sacrificial. Seemingly crazy. Hard. Relentless. Inconvenient. Inclusive. Sacred. Beautiful love. The kind of love that never, ever fails. His love never fails.

If I have had to experience hurt and pain to be hyper sensitive to the beauty and love that exist despite it, I will get up and experience it all over again. That’s how I’ve been healed.

I’ve been released. I’ve been freed.

You don’t need to ever pity me. I’ve come a long way in my journey. And you don’t need to feel sorry for me either, okay? Unless you feel sorry for butterflies too.