My Bursting Heart MUST find vent at my Pen: Part II

Late nights, long hours
Questions are drawn like a thin red line
No comfort left over
No safe harbor in sight-Sara Groves

I am fighting all the firsts. The very earliest of word and examples I was taught. I am relearning. And I am weary.

It’s been quite some time since I’ve linked up with Five Minute Friday. It’s been some time since I’ve written regularly. You see, my words are not there. They are stuck inside. Somewhere fighting to find a voice, but feeling so small, so invaluable, so useless.

I am fighting my firsts. I am fighting all the things that were first told to me about how little I matter. I am fighting beliefs about who I was told I was. In some ways I can so clearly see God’s hand freeing me this past year. And in so many ways I also feel so intensely trapped inside, fighting, alone. More alone than I’ve ever known.

diggin in the dirt till it hurts
won’t come up for air don’t care
how long it takes me
I get tired want to just get by can’t I get by
but I can’t cuz there’s a
fire in my bones, fire in my bones
burnin in my bones -Sara Groves

I have joy. I am sure in my core I have much hope too. That’s the thing, my life looks very different than how I feel. And maybe that’s one of the marks of a disciple… that even though inside I feel confused, mixed up, alone, and very weary.. I am weak. I am tired. I long for an end in ways I am not sure any I know can relate to. But on the outside, I am striving. I am living. I am living so fully, vibrantly even. And it’s real. It is not a persona. Inside I can’t sense hope, but I know my life lives hope. Hope show’s up. Words of truth come out from my core, the core that’s been fighting to survive, to live, to grow for so long. It’s the fight of flesh.

oh I’m gonna find the truth
even if it kills me
oh I gotta get a new view
the only way I know to
oh I gotta keep my eyes wide open
keep my eyes wide open– Sara Groves

I have seen His hand provide. And I am waiting on that again. The wait is long. It is hard. And there are so many firsts that keep pulling me down. I am crying for relief some days, for a way to voice, an avenue to cry out to, a God with skin on. I know God will be faithful again. And I wait, for the words to come again.

Really we don’t need much 

Just strength to believe
There’s honey in the rock,
There’s more than we see
In these patches of joy
These stretches of sorrow
There’s enough for today
There will be enough tomorrow-Sara Groves

“My Bursting Heart must find vent at my Pen” Part: 1

If I know what love is, it’s mostly because of her.

Several times the last few months I’ve reached for my phone to call her, only to remember I can’t. She’s dead. On the way home from a particularly devastating doctor appointment a couple months ago, I actually pulled out my phone and typed in her name, as if I could still reach her.  But it’s no longer her number. I looked at the phone and just placed it on the passenger seat next to me and proceeded to talk to her, as if she was still alive and on the other end of the line, because I needed someone to talk to, someone who knows me and loves me and was willing to listen. It felt so good to see her name on my phone, even if it wasn’t real. And a few minutes later when the ache of the emptiness of essentially talking to myself stung more than the reality of her being gone, I pulled over and deleted her name from my phone. It was time. I cried.

So this is what it means to be an adult. To have to keep going even when the world feels cold and lonely. Tis better to have loved and lost than never to have loved at all.” — Alfred Lord Tennyson

Sometimes, when one person is absent, the whole world seems depopulated.—Allphonse de Lamartine

Losing someone you love really affects you. It won’t magically go away. Sometimes there’s pressure on mourning, so you stop (or maybe never had the opportunity to, because realistically, mourning has privilege attached to it, and not everyone is privileged to be able to). But it stays buried deep down and becomes a deep hole of ache.

That’s the thing when someone you love, really love, dies. Instead of going into every fight with back up (whether it be an academic, illness, or some other feat that requires a strong sense of support), you have to go in alone. Often without a soul even knowing you’re in the battle.

I miss her in all the places and things we did together. I miss her in the movie theater, with my can of off brand soda and two candy bars she’d let me pick out at CVS. I miss her at the grocery store when I see the Cinnamon Toast Crunch cereal and Oreos she bought for our sleepovers.

There is no pain so great as the memory of joy in present grief.—Aeschylus

I miss her at Christmas, when she’d make the two of us lasagna and she always made me a stocking, filled with candy and little treats. I miss her at my old church, where we’d go to senior luncheons together (I could never pass up getting to hang out with all the older ladies.. and free lunch!). I miss Christmas shopping with her. She could out-shop me any day. I miss the smell of holidays in her house and the bright red lipstick that always left a little stain on my cheek when she kissed me (I sort of just miss being touched in general). I miss her on the roads she’d drive, our breakfast spot, her favorite restaurant, the pond she’d take me to.

Even places she’s never been, have memories of her. When I was in college, she was one of two people I ever received mail from. She sent me a package every semester. On each of the mission trips I went on, it caused her much worry that I would be leaving the country yet again, but I’d hear from all her friends how proud of me she was. It’s easier to miss someone at their cemetery because you’ve never been there together, but to miss someone at all the places and situations you were in together feels gut wrenching.

“The most important thing in life is to learn how to give out love, and to let it come in.”— Morrie Schwartz

She always told me she loved me. She knew how to love, practically and in her words. She knew how to love ME… how I would feel loved, before I was even aware how I feel love, probably because we both felt love in the same ways. Now I have a hard time remembering the last time I audibly heard it. And maybe that’s another hard reality of being an adult now, that you don’t get to hear you’re loved very often. But I know how to give it and say it, and I will continue to, even when it’s hard. Even when I don’t hear it towards me. She taught me that.

She loved mightily.

“The only thing we never get enough of is love; and the only thing we never give enough of is love.”— Henry Miller

No one has ever become poor by giving.”
– Anne Frank

The anniversary of my grandmother’s death recently passed by. It was a quick day for me. I was pretty sick. I slept much of the day. I thought about her and still went about my remembrance celebration. This year, it was a peanut butter cupcake. I wrote my letter to her, because words mattered to her and I. I spent weeks trudging through the cards in various stores, trying to find the perfect one… because even though I have my own card business now, I wanted the perfect one, with the perfect meaning. It’s the only time in my life I can justify spending $6 on a card. And I sit at the bakery on the anniversary of her death, and I write her a note, part update, part longing, part grief. And I eat my cupcake, and I thank God that I had someone for a little while, and that He gave me it, her: stability, and warmth, and touch, and grace.

And I reflected about what parts of who I am actually came from her. I have never been like anyone I am biologically related, but this year, I knew I was like her in some ways. And I am so glad that some of her goodness carried over, to live on in me and through me.

She saw the best in me. And by seeing the best in me, she empowered me.

The deeper that sorrow carves into your being, the more joy you can contain. Is not the cup that holds your wine the very cup that was burned in the potter’s oven? And is not the lute that soothes your spirit, the very wood that was hollowed with knives? When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see in truth that you are weeping for that which has been your delight.”
— Kahlil Gibran

 

 

On Celebrating the Other Mothers on Mother’s Day

On Celebrating the Other Mothers on Mother’s Day:

There are parents without carseats, diapers or pacifiers. Mothers who do not have bedtime rituals or middle of the night feedings. Parents without hand-stamped necklaces or birthstone rings. These are the other mothers – the ones in our midst who are quietly hurting.

So today I tell you, parents of babies who are not in your arms. I remember you on Mother’s Day, and you are celebrated.

I celebrate you getting out of bed.

I celebrate you waiting to cry until after your newly pregnant friend leaves.

I celebrate you balling up your fist at the complaining of another parent.

I celebrate you enjoying a quiet evening with your spouse.

I celebrate you crying in the shower at the overwhelming unfairness.

I celebrate you scrolling thru Facebook, steeling yourself against adorable joyfilled photos of families.

I celebrate you going to church and the park and Target.

I celebrate you enduring tests and procedures and needles.

I celebrate you as you slump on the bathroom floor, allowing yourself to feel the cycle defeating you again.And as you rise, choosing to do it all again tomorrow, I celebrate you.

I remember your babies. They, and you, are not forgotten. They matter. You matter. And on Mother’s Day, you, mother, will be celebrated.

 

Somedays you just have to wear your underwear over your pants.

This is an uncomfortable topic for me. It’s personal. I struggle with embarrassment over it. And STRUGGLE is the key word. I am not embarrassed, but I do struggle with it.

The longing to belong and be known is one I am very familiar with. I want to be completely me-silly, goofy, crazy, crafty, fierce- in every circumstance I want to be me and be loved completely for it. But it doesn’t usually happen that way. I shy away. I feel ashamed. I feel guarded. I feel like I am wrong, like I was made wrong. I don’t feel enough.

Ashamed, embarrassed, shy, reserved, guarded. It’s what we feel when there’s something about us that seems different than others. We have to hide what’s different, protect that inner soft seed of hope and creativity. As if what makes us different, and unique, is shameful. It’s this balancing game of fit in but stand out. Hiding carries shame with it, secrets that wear down your mind and your body.

There’s a need to be open, honest, transparent, integrated. Integrity is when the inside and the outside match. To build intimacy with others, we have to be integrated with ourselves and others. Having integrity is risky business. But it’s the only way to really connect and thrive.

You risk loss. You risk reputation. You risk friendships. Who knew that fitting in meant losing so much of who you are?

I have been sick with Crohn’s/Colitis for exactly 10 years. It’s been a hard battle. Experimental treatments and blood infusions and week long hospital stays became the norm. Infections, injections, food restrictions, and physical limitations became the norm. It interrupted my life. No more sports. No more pizza. No more late nights. No No No. Crohn’s ruled my life. I have so many stories connected to my Crohn’s struggle. Hard and frustrating stories and seriously funny, everyday stories. Life with Crohn’s makes things a bit more chaotic and a bit more colorful.

Recently my roommate brought home a delicious treat… one of my favorite: whoopie pie. I savored every bite. A few hours later when I went to the restroom, I thought I had pooped blood. I nearly passed out: a toilet full of red. Blood doesn’t make me queasy but a full toilet of it makes me panic. You see, I used to fill a toilet like that with blood. I nearly died then. Crohn’s makes you hemorrhage and bleed. I bled every day, nearly every hour, for years. I hardly knew what it felt like to have energy. Somedays it was hard to breath because my blood count was so low.

In that moment, panic shot through my body and I cringed at the thought of calling an ambulance, of the disease making it’s terrible home through my digestive system again. I cringed at the thought of being forced back into that life of cyclical inpatient stays and medications that make you puffy, gain weight, acne, weaken your teeth and bones, sleepy, and lose hair. All of this raced through my head in those very few minutes of panic. Being sick took a lot out of me. Crohn’s took a lot from me.

It wasn’t blood in the toilet. It was red food coloring from the whoopie pie. I couldn’t wait until my roommate came home to debrief about this incident. I just wanted someone to talk about it with. As we laughed, we agreed to not buy foods with red dye in them again. You see, she is one of two people who appreciate my “potty/poop” stories. “Potty/poop” stories are a huge part of my life. Three years ago I had a total colectomy (they took out all of my large intestine and part of my small) and gave me a colostomy/stoma (they take out the really infected intestines and loop whats left of your intestines and pull a bit of it through your abdomen and skin. About an inch or two of the intestine is exposed to the outside world and a “bag” is secured to the skin to catch the poop).

It changed my life. I started to have stamina again. I could walk, run, swim. I didn’t need blood transfusions 2-3 times a year anymore. No more hospital stays. No more seeing those same ER nurses. No more apple juice and rice and tomato soup. I got to have REAL food: steak and cucumbers and salad and fruit. I could semi-regulate my own body temperature. No more infections. No more missing out on life!

Surgery gave me life again. I thought about why I felt the need to wait until my roommate came home to discuss the “blood” incident; why she was one of only two people that felt safe to discuss this with, why I shared my story softly with her so no one else would hear. Why couldn’t I just share this with any friend or even use a normal voice? Why is “potty” talk so taboo? Why do I feel the need to hide this huge piece of my life? A lot of my life has revolved around poop. So what if it comes out into a bag.

When I first had surgery, I was so elated to be in a new season of life that I texted a picture of my stoma (the intestine that sticks out your abdomen and is sutured to your skin) to many of my friends. I thought it was so cool! This was a beautiful reminder that I was still alive.

My roommate mentioned some pictures that circled the internet over the summer about women who went to the beach in bikinis with their colostomy (bag) showing. That is BOLD. I was shocked and encouraged. I have never heard ANYONE talk about their bag publicly, let alone be willing to let the world see in pictures and displayed for other beach goers. Bold. Brave. Courageous! A friend of mine would call that a “wear your underwear over your pants kind of day”. Just be who you are. Integrated. Whole. Real. Human.

It takes courage to be that brave. I am so leery about discussing my bag. I laugh, inwardly. I take care of all my poop “incidents” quietly (there are MANY incidents). But it’s an everyday part of my life, a funny, sometimes awkward, and slightly inconvenient large part of my life; a part I have always wanted to share but have felt too embarrassed to. Something changed after I left the hospital those few days after surgery. This very thing that gave me life, this very thing that made me unique and beautiful and different and ALIVE that I sent PICTURES via text to friends, this very thing attracted some sort of stigma that caused me to feel ashamed and embarrassed and less than. I had to hide what saved my life. I had to find a way to be “normal”.

I’ve heard a lot of comments about my surgery[3 years ago], even this past week: “Don’t you want to have another surgery to reverse it?” “Well, you’ll have to get it [the stoma/colostomy bag] taken care of before you get married.” “You’re only okay with it because you don’t have a husband.” And the best, “Don’t you want to feel normal?”

Sometimes I hear others say “I could never do what you did. I couldn’t live like that.” Sometimes people get grossed or creeped out by me, when they know I have a bag. Yes friends, I have heard many comments about my colostomy bag, none of them pleasant or beautiful. Not one has seen it for the life that it’s revived in me. It hurts not to be heard. My colectomy, my bag is God’s unique blessing in a world drenched in sickness. God has used it to redeem my physical body!

The truth is, if we haven’t talked about my colostomy or a poop/bag story, it’s likely the real me hasn’t felt safe enough to come out. I promise you there will be some VERY laughable moments. It’s okay to ask questions, even the ones above. I’m pretty gracious with bag comments, but please see that it’s not gross. I’m not gross. I’ve been given a gift.

I like to talk about it, but not as if it’s bad. You see, this colostomy bag, this little pink intestine that sticks our of my abdomen, is the reminder of what saved my life! It’s beautiful to me. Wouldn’t you want to talk about the thing that saved your life?

It bears the mark of what’s brought me life and health again. Without it, I’d likely be dead. I don’t wish it gone. I don’t feel like a martyr or like I am missing out on life because of it. I also don’t think it’s something I need to change in order to get married. My husband won’t feel ashamed or embarrassed of me because of it. My colostomy bag is normal. Poop stories are normal to me. They aren’t “potty” talk. They aren’t wrong. It’s not something to be ashamed of. Maybe my stories will even color your day a bit. Maybe it’s time I step a little further out and wear my underwear over my pants when it comes to discussing my colostomy. I wasn’t made wrong. I am different. I am blessed. I am enough.

And just a note: I have laid aside my love for red velvet. If you feel so inclined to bake for me, I love homemade cream cheese frosting on ANY cake or cookie like substance that doesn’t have red food coloring in it.