A few weeks ago I had the opportunity to talk about living with Crohn’s disease in front of a small group of young adults in their twenties and thirties. I attached the link below to the discussion.
I have found a sense of hope and healing in sharing my story with others. Although it can be difficult, it’s quite therapeutic to talk about the journey including overcoming obstacles, my faith, the low moments, my coping mechanisms, etc. I thought Chris asked great questions throughout this round table discussion. He sympathized with me, yet also encouraged me to share about how having this disease has changed me and affected me in positive ways.
I’ve had several friends who hoped to come to the discussion but weren’t able to. I thought if you wanted to to listen to me share a bit of my nineteen year journey with Crohn’s disease, you can click the link. I told Chris that he “went all Barbara Walters” on me when he asked me to talk about one of my lowest moments. Spoiler alert: it’s sad.
Even if you don’t have time to listen, I thought I would emphasize the enormous value, for both parties, in sitting across the table from someone who truly wants to listen to your story. Whatever your story may be. We have so much we can learn from one another when we take the time to hear, see, and feel life from another perspective. We welcome the opportunity to grow intellectually, but more importantly, we invite in beautiful real-life moments that can change our hearts.
I just can’t sleep. For what seems like a million sad and scary reasons. I laid down with my twin boys tonight. Their heads nestled up next to my shoulders. We talked about today and tomorrow, and then they fell asleep. I wanted to lay there with them and protect them. From Orlando. From the hurt of this world. The things that I just can’t begin to explain to their tiny ears. So, I cupped my giant hands around one of each of their ears as if I could shelter them from my thoughts. The thoughts that won’t stop because it all hits so very close to home. Too close. Fear doesn’t knock. It barges in. And it has the powerful ability to take over.
I can’t stop thinking about how many nights my friends and I went out dancing in college and the years after. To bars, to dance clubs, to music venues. In Nashville, in Panama City, in the Bahamas, in Lawrence, in Kansas City. I remember getting ready, driving downtown, listening to our favorite music. Laughing. I never once remember fearing for our lives. I never once thought, “we could die tonight.” Because that would have just been absurd or ridiculous.
But not anymore. Not after Orlando.
I can’t stop thinking about all of the innocent victims, their families, the bystanders, the police officers, the paramedics, the nurses, the physicians. What they have all witnessed that they will forever carry with them. The community. Everybody. I can’t stop thinking about all of their mothers. And that’s when I just don’t want to let go of my boys. Ever. Surely they should never venture into this unpredictable, scary world alone. Without me or their dad.
Because it’s one thing to be affected by an illness or disease, and to wait to be seen by a physican in the emergency department to try and figure out if you’re going to be okay. But it’s a totally heart breaking and suffocating other thing to know how many lives are being taken because of one wreckless human being violently stealing another’s beautiful life away. I can’t begin to wrap my head or my heart around how people can destroy other people. How can we not see another human being as someone’s child, someone’s mother, someone’s wife, someone’s best friend or someone’s brother?
My boys love catching lightning bugs in the summer. I have a hard time letting them keep lightning bugs locked up in their bug boxes overnight because it seems unfair. I think they should be flying in the night sky. That’s why they’re so beautiful. Because they are free. They brighten up the summer nightime sky. So, to begin to understand how a man can go into a night club and trap and kill, injure and forever damage so many human lives is beyond my comprehension. I know I have to focus on the helpers. All of those sacrificing to help and bring hope with their two hands. All of them. Like the ones waiting in line for hours to donate blood. I know I have to reach out to the ones I love so dearly and let them know how much they matter to me and my family. I know that. I know that we have to love harder and push the fear away. We cannot be trapped. By hate or fear. Or violence. This I know.
I will keep praying for Orlando. And I will keep trying to teach, protect and love on my children in a way that honors the victims, especially the mothers who had to let go. The ones whose babies grew up and wanted to go hang out with some friends. To all of the ones who ache with a pain that I’ve witnessed and can imagine, but hate to. It steals the air from my lungs. It makes me want to throw up. And it makes tears fall too fast to try and wipe them away.
We’re grieving with you. I hope you will look up and see us in the darkness, occasionally lighting up the night sky.
I will never forget the wounded spirits thrashing about, trapped in yellow gowns. I will never forget the countless children, teens and parents who have mastered the delicate art of crying slow and silent tears. The ones that fall, quickly hidden beneath a mask, in the midst of a painful procedure. The vanishing kind that people may never notice. I will never forget the amazing parents who ache with empathy and would desperately do anything to take it all away. All the hurt. All the pain. All the uncertainty. I will never forget the parents who wished they could go back in time and love differently.
I will never forget all of the beautiful and enormous, curled, and thick eyelashes surrounding the biggest eyes and tiniest bodies. Often clumped together from the tears. I will never forget all of my work routines, cleaning toys, filling the treasure box, meeting new families and the routine honor and privilege of holding a hand, blowing bubbles or soliciting a smile. I will never forget the giggles. Or all of the innocent commentaries as kids think outloud….
“Are you a doctor?”
“Are you a kid?”
“Are you dizzy too?”
“Do you like farting?”
“I will stay with you because we both like laughing”
“Can I call you Banana?”
I will never forget the hugs. The apologies. The wrongfully bruised bodies and the repeatedly banged-up hearts. I will never forget their inspirational, yet unfair resilience. Their hope. Their shouts. “I did it! I didn’t think I could do it, but I did it!” I won’t forget their cries.
I will never forget all of the innocent siblings. There. On the edges. On the floor. In the waiting room. Always. Still somehow so brave. Perhaps feeling invisible through it all. The ones whose skinned up knees and broken bodies will manage to rise above the overwhelming heaps of pain. The ones whose hearts will forever be altered by the accidents, the injuries, the new diagnosis or the devastating loss of a brother or sister or mother or father. Sibling orphaned.
I will never forget the babies. The sweetest, littlest ones. Their mommies and daddies. The grandparents. Beautiful new lives swaddled for the first and last time. The tears. And the excruciating pain of life stolen. I won’t forget the long walks down the halls wondering how you could ever get me to let go, for the last time.
I will never forget the teens who stole my heart as they sat day in and day out hooked up to the dialysis machine that cleaned their blood. The kids whose lives revolved around modified diets, modified social lives, medicine taking, blood draws, and waiting hours on transportation to pick their exhausted bodies up after treatment. I will never forget their constantly changing moods, or their resilience, their smiles, their laughter, and their birthday requests. I will never forget both the excitement and sadness involved in anticipating their transplants as they were granted a chance at a new life.
It’s all quite impossible to forget.
So I will remember. Always.
I will remember the compassionate. The ones constantly sacrificing their hearts, their thoughts, their energy and their lives. The immeasureable amounts of love scattered and woven in the midst of the darkest of places. Everybody running and doing impossibly hard things. The nurses who bent down on their knees and bled with their patients. Time and time again. The doctors who gracefully carried all the knowledge, the responsibility and the weight of another human being’s life on their tired, slouched shoulders. I will always remember the care assistants who stood, time and time again, holding strongly onto a sweet child’s body as they fought their own instincts to cry. I will remember the neverending patience, the overflowing compassion and the grace of the team working together in the most difficult times.
I will always remember that violence, poverty, homelessness, neglect, abuse, orphaned, and unavoidable hurt and pain exist here. Right here. In our city. On a daily basis. I will always look differently and act more sympathetically and compassionately because of my experiences inside these walls. I will judge less and look out more for the broken, the familiar eyes, the ones whose tiny bodies, hearts and minds have witnessed so much of the pain of this world.
I will always remember the beauty of this place. Especially the people that should win the happy emotion lottery everyday for what they endure. I will always remember how they unknowingly brought hope to so many in the midst of some of the worst times. I will always remember how this place has changed my eyes, my mind and my heart. I will always remember the dedication, the loyalty, the comraderie, and the family that will forever be with me. I will remember you. Always.
Because I could never forget you.
It’s impossible to say goodbye. I can’t do it. I keep telling myself that I will see you all again. So, I will say “thank you” instead for all that you’ve taught me and for the hundreds of ways you’ve loved, supported and encouraged me. I will think of you often and pray for you constantly. You do hard things. All the time. I’m so proud to know you. Your moms, dads, spouses, kids, and everybody who can’t witness the work you do would all be so proud of you, if they could see front and center what I’ve gotten to see for all of these years. You’re truly amazing. Real life heroines and heroes. You’re life changers. Please always remember the sacred power that you possess.
We have a ghost in our house. Just hear me out. Or don’t. I’m convinced of it. My husband is not. He thinks I just blame the ghost when things disappear. Our scape ghost. It tends to steal or hide things at the most inopportune time. I will swear up and down that I placed something right on my nightstand, or chest of drawers or on the kitchen counter. But the stuff moves. Vanishes. It sounds absurd, I understand. I believe that we most likely have a toddler scapeghost.
If you’re curious. I think it followed us from our last house too.
In our last house, it did some crazy things. It would leave showers running for so long that there would be no hot water left. This one time, the keys to my van went missing for months. The good set too, you know the one with the key fob on it? That one. Do you know that it costs hundreds of dollars to replace that? Nice one, Toyota. If you’re getting a mini van, shouldn’t you get a few sets of those? Yes. So, every time it would be raining or snowing or I wouldn’t have an extra hand to manually unlock the door, I cursed the scape ghost. And sometimes myself. And of course, my husband too. It’s sad stuff. First world kind of problems.
Then, one day, my husband was cleaning out the deep freezer. It was one of the last things to finish before moving out of our first house. He reached into the deep freezer and grabbed a box of popsicles and heard a little rattling sound. You’ll never believe what he found in the bottom of the popsicle box. You got it. My car keys.
If you know me, you know it is highly unlikely that I would lose my keys in a popsicle box in the bottom of the deep freezer. It had to be our scape ghost, getting a Popsicle while playing hide and seek with the car keys. It purposely messes with me the most. And makes me feel like I’m a little crazy. But now, when “I” lose something, I do tend to check the deep freezer because “Fool me once, shame on you, scapeghost. Fool me twice, shame on me.”
One of the reasons I strongly believe in our toddler scapeghost is because one night, my husband and I were watching t.v. downstairs and we heard the sound of footsteps upstairs. And, the guinea pigs sounded their motion detecting alarms, “EEP. EEP. EEP.” We went up to investigate and all of our kids were asleep in their beds. Cue the eerie ghost music or maybe the X-files theme song.
If you’re curious as to whether I’ve lost my mind or not, you should know that this is both a fiction and non-fiction blog post. You get to pick and choose which parts you believe to be real and which are not. My husband interupted my writing and told me that I can’t just start blaming stuff on the scapeghost or our kids will do the same. Oh, my homework disappeared. All the lost shoes. The last chocolate chip cookie. You get the gist. But the great thing about my mind is that inside of here, I can blame whoever or whatever I want. Anyways, as soon as I figure out what our scapeghost wants, I’m sure he or she will just leave me alone. That’s what I hear about ghosts anyways.
*since writing this, my key fob disappeared again….and reappeared. However, a brand new pair of my four year olds shoes went missing…..driving me crazy. They’re still missing. And yes, I credit the Scapeghost for their disappearance.
I’m sorry. I don’t want to sound ungrateful for you helping me out with my gut situation, but you’re really starting to piss me off. I can’t focus on anything I want to, similar to a two year old unleashed in the grocery store. And thank you for making me obsess about things that have not bothered me for years. I will most likely get to that wallpaper and bathroom demolition shortly. Perhaps on one of these nights when everyone is sleeping. But I’m not.
Also, thank you for the new onset of emotional maturity ranging anywhere between an angry hormonal teen to a blubbering newborn baby. You make me feel like I’m losing my ever loving mind. You’ve taken my personality hostage and I can’t find it because I’m so hyper focused on cleaning the damn shower. Or getting those clothes to City Union Mission. You’re worse than caffeine and albuterol mixed. That’s right. You’re like ten espresso shots too many.
Thank you for inspiring all sorts of creative endeavors inside my head, but not donating to me the attention span necessary to accomplish any of them. Prednisone tshirts, awareness bracelets, and stationary? Really, Prednisone. How thoughtful.
I would rather go eat a house or save the world because that’s what you make me feel like I can do. However, if I was forced to pay attention or sit still to receive the directions on how to eat a house or save the world, I couldn’t do it. I can’t quite remember what it felt like to be two years old, so thank you for this stroll down memory lane. Unfortunately, I’m in a grown ass woman’s body, so I should probably get to making my “Prednisone Awareness” bracelet. So others will know. “It’s not you, it’s me.” Well, it’s actually you, Prednisone.
I really hate you.
I have to go do something else now. For the next minute. Until I have to go do something else again for the next minute.
Please treat my personality nicely while you hold her hostage. Chocolate helps.
From an early age in life, we crave a bit of control. Control over a toy or our parents. Or a sibling. Control over what food we want to eat. Or not eat. Control over what ridiculous clothes we want to wear. “What? A swimsuit doesn’t look good with tights under it?” As we grow older, we strive to control bigger things. Situations. Our work environment. Our home environment. Our spouses. And oftentimes, our children.
I have found that sometimes God chooses the most inopportune times to show us that we are not in as much control as we may think. I have a chronic illness that has wrecked my plans on too many occasions to count. It’s a pretty helpless feeling when the world outside of your bathroom or hospital room continues on. Without you. I have had to learn to let go. Of what was supposed to be, but now will not be. I try and just remind myself to focus on the next breath. The next minute. The next step. Not tomorrow or next week. Definitely not next year. Just the moment right in front of me. This can be difficult with three little ones outside of the door. Waiting on me.
It’s a lesson that I quickly forget when I recover. It’s one of the hardest parts of having something always, something that never goes away. It’s an illusion to try and control something like a chronic illness. I think it is a practice that has helped me let go of certain struggles as a parent. I have three boys that help remind me on a daily basis that my plans may differ greatly from God’s plans for me and my family. I think God intends for this to take some of the weight off of us. Just wait. Stop worrying. He’s got this. He’s got you.
1 Corinthians 2:9
“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.”
Maybe he hopes we will let go and let him help take some of the pressure off. The pressure we put on ourselves to do a million things a day and raise loving, compassionate, generous, caring, honest, and kind-hearted children.
The other night I was in pain and I couldn’t help put my children to bed. I hate when I can’t be the mom I want to be because of my disease. Doing it all. One of my seven year old boys came in to my room and said, “Mom, can I get you some water?” Of course. And maybe some toilet paper for my tears. My heart nearly exploded because of his unprompted kindness. And compassion. And patience with me. Then one of my other sons asked, “Mom, can I hold your hand?” Suddenly, I didn’t feel like such a burden. Suddenly, I could let go to realize the power in my sons’ tender hearts and love-filled actions trumped any of my shortcomings as a mother.
God worked through my two sons to lighten my load.
We can never predict the good that God will bring out of situations where we lack control. Situations where we feel overwhelmed. Situations where we feel unprepared for what’s before us. God looks out for us and constantly surrounds us with his grace and love. Sometimes the greatest lessons will come out of the mouths of the most innocent and dependent ones in our house. God works in mysterious ways. We have to let go of the control sometimes to humbly learn that there are much bigger plans in store for us. Plans we can’t begin to fathom. Because we love God. And he loves us more.