Monthly Archives: October 2014

Mom Guilt (but you don’t have to be a mom to read this:))

She wasn’t feeling good. It has been that way a lot lately. She said she needed to rest on the couch while we played a game. I helped her maneuver the pillows that she was trying to place behind her. I got her the fluffiest one. After she was situated comfortably, I took the softest blanket I could find in the room and laid it over top of her, gently tucking it in around her chin. I knew she’d like the blanket because it was green, and green is her favorite color. I smiled at her and crawled up on the couch next to her, snuggling in close, as I found the perfect position where I could both keep and eye on her and pay attention to the deck of cards in my hand…

The above is a true story. It’s a small glimpse into the scene that occurred in my family room this past Sunday evening, except this isn’t a mother talking about taking care of her child, as you might have first thought. Read it again. This time, when it says “she”, insert the word “Mommy”.

Chronic pain changes the natural order of things. The above excerpt is not how things are supposed to be. It should be read as a mother taking care of her child, or husband, or elderly parent. But this disease has caused my reality to flip flop. Things are not how they should be.

“Mom guilt”, as I like to call it, is an old familiar friend of mine. She used to come around a lot more often, before I was on medication for my depression. Her voice constantly followed me. I remember a specific incident about a year ago. I remember it b/c it was one of the first times I began to recognize her comments for the lies they were. I had finally found the courage to schedule an appointment with a Christian counselor and was driving down the freeway, to the appointment. I had just dropped Promise off with a friend. As I drove, I passed the WI state fair grounds. Immediately, she started in, “Promise just told you the other day that she’s always wanted to go to a fair. You’ve never taken her. Most of the other moms you know take a day out of their week to take their children. But look at you, such a failure, driving to counseling instead of taking your own daughter to the fair.” I cried a lot that day on the freeway.

Thankfully, my “Mom Guilt” has decreased significantly since that incident. I’ve worked hard (now that my brain is working as God intended it to…) to fill my head with what my own Heavenly Father thinks about my mothering, instead. I’m trying to let His voice be the conviction I hear and feel.

But there are times when “she” still likes to sneak in and stir up my emotions, especially when the pain is really strong. As I share my story and continue to hear stories of young moms, like me, living with the burden of chronic pain, I know for a fact that this is a common struggle.

This past weekend was a weekend of struggle for me. I was told repeatedly by my medical team, before my fusion in March of 2012, that because of my small bone structure I would feel my hardware more than most. “Most” in this case, referred to the 7 other patients in the country who had had this procedure performed on them. My surgeon and his team didn’t lie. I definitely feel…well, screwed.

screwed 2

It’s no huge surprise I feel like a “kids home depot project gone awry”. Obviously, I’m NOT criticizing my neurosurgeon’s handiwork. He did an amazing job for which I am TRULY thankful. He took 8+ hours putting all of this in and in no way is comparable to a 4 year old learning to hammer. But sometimes that is how I feel.

I am at a point in my diagnosis where it is really REALLY difficult to determine what causes what, so it’s nearly impossible to determine why my fusion will rub me the wrong way sometimes. It could be the Chiari causing the muscles in my upper back/neck/shoulders to tighten, which then causes the muscles around my screws to tighten and rub against nerves. OR it could be the screws rubbing against nerves and bones and then causing the muscles in my neck to tighten which causes the weakness in my arm. OR it could be that there’s scar tissue building up around my screws which rubs on nerves and causes weakness in my arms. The list could go on and on and literally make me crazy if I think about it all too hard.

So instead I rest. Sometimes for 48 hours (if my nerves cooperate and time their tantrum over a weekend). But the funny thing about rest is that it gives you a lot of time to think. I’m not naturally a personality that worries and fears every ache and pain (If I was, I’d live isolated in a clear box with a lifetime supply of maple/bacon donuts to eat and chi-weenies to entertain me… with air holes, obviously). However, when the pain gets like this…and I can literally feel the metal gnawing against my bone, muscle, and nerves…I begin to worry.

I start to imagine what my body will feel like when I’m 50, if I’m already in this much pain at 29. All of the emotions that flooded me, post surgery, come rushing back; “What if this is permanent?” “What if the pain doesn’t go away?” “What if I need another surgery?” “Who will take care of Promise?” and sometimes I even land at the worst “Mom Guilt” question yet…”How could I have been so selfish to bring a child into this?”

That’s when I have to do what Paul encourages the Philippians to do in Philippians 4:6&7;

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Out of a desire to understand this text better, I did a little digging. “The Bible Knowledge Commentary” says this;

“Joy and gentleness accompanied with an awareness of Christ’s imminent return, should dispel anxiety. But this was not a call to a carefree life. To care and be genuinely concerned is one thing. To worry is another. Paul and Timothy cared for the people they ministered to, yet they retained trust in God. Jesus warned against worry which obviously eliminates trust in God (Matt. 6:25-33). Paul exhorted the Philippians to prayer instead of anxiety. Praying with thanksgiving involves trusting God.”

It’s OK for me to be concerned about the pain I’m feeling and the way it affects my family. But it is not OK for me to stop trusting God’s sovereignty and stop thanking Him for what He has already done in my life. God knows that this is not how things are supposed to be. It’s being aware of this, through my pain, that pushes me to seek out truth and knowing God to the fullest that I can (here on earth) until He does restore things to the way that they are supposed to be.

Stuart Briscoe, now in his 80’s, has devoted his life to traveling the world and telling others about the life change that knowing Jesus can bring. My friend Elizabeth, shared at our HOPE talk this past July, that Stuart said the common thread that connected all of these people groups together, was the awareness that our current state is not how it is supposed to be. We live in brokenness, but there is hope in Christ.

This should eliminate my “Mom Guilt” forever. But then again, I’m broken and need to be reminded 🙂

My next post will also be about something that is “not as it should be”. I have my 21st surgery coming up on November 6th. More details to follow in my next post…



Staples, Stitches, and a Stone

As I have mentioned, I had mixed emotions about starting a blog. It’s a like/dislike relationship, really. A means to an end. The end being that I can effectively share with you all that God has taught me about finding joy, hope, and peace in the midst of chronic pain and physical deterioration. In doing so, my prayer is that you find encouragement, fearlessness, and (dare I say?) even thankfulness for your own personal suffering.

There is really only one aspect that I don’t like about blogging (so far); having “followers”. The terminology is just so strange to me. Why can’t they be called “readers” or “curious people” (because I know some of you read this just because you are curious…I mean, not everyone talks about their bowels to the extent that I do ;)). I’d much rather wake up one morning and say, “Oh look! I have 980 curious people reading my blog!!”. I just don’t feel like anyone should be “following” me. Jesus Christ had followers. They were called the disciples. But Jesus Christ was and is the ONLY one worth following. I, on the other hand, believed that the United States was comprised of 25 states (until about my Junior year of high school…and I actually just had to google it again to be sure that it’s incorrect because I still get confused). DO YOU REALLY STILL WANT TO “FOLLOW” ME???

The other part of starting this blog that baffled me was what I should name it. So of course, I did what any sensible person would do, and put a random poll on my facebook status, asking my “friends” (except the ones who responded really are friends) what I should name it? I received some thoughtful and creative responses that resulted in really getting me to think. I knew that I wanted the name of this blog to reflect the physical challenges of my life, but I didn’t want that to be what it embodied. I wanted a name that allowed me to write about all aspects of my life, not just my disease.

So, after filling a few pages of my journal with words that came to mind, I landed on “Staples, Stitches, and a Stone”.

I still wasn’t positive though that this was “it”, so as we were driving down to Ohio one night (about a 8-10 hour car trip from Milwaukee), I decided to poll one last person; Chris. His suggestions quickly solidified in my mind that “Staples, Stitches, and a Stone” would be definitely be the final name. I love the man, but sometimes his “corny bone” and his “creative bone” get flip-flopped:)

So, let me break it down for you.

STAPLES: This word might bring to mind office supplies for you, but for me, it brings to mind images of my spine and the seven times that my back has been cut open and stapled back up. It brings to mind the “unnaturalness” of it all. Of cold, hard, metal being pierced into warm, soft, flesh. It brings to mind the day that I felt cerebral spinal fluid seeping out of my staples and soaking my pajamas. This incident would lead me to begin understanding that God was the ONLY one who knew my pain. But you know something? The staples weren’t permanent. Healing was accomplished and eventually they were removed. I will forever be able to see the scars they’ve left, but without the scars, how would I ever know the extent of healing that has been done?

Adriana Hayes_Hope photo 1_spine

STITCHES: God has given me the gift of a creative mind. This gift has been key in me working through the emotional and physical pain that comes from watching your body deteriorate, especially at a young age. During my 4 spine surgeries, when I was 9 and 10, I spent months laying on the couch, on a mattress on our family room floor, or in a hospital bed. In the hospital, I got so tired of watching TV, that I soon began drawing the characters on the front of my cereal boxes. Tony the Tiger, Toucan Sam, etc. I eventually had enough drawings done, that the nurses hung them in all of the pediatric hospital rooms on my floor. Art became therapy for me in that moment. The realization that although my legs were weak, my hands were strong and creative. And not only that, but this gift could bring healing to my hurt and joy to other’s lives. That was a vital discovery for me. As most little girls do, I dreamed about my future wedding and spent hours thumbing through the “BRIDES” magazine that my mom agreed to let me subscribe to through our school magazine drive. I’d fill sketch books (that I still have) with illustrations of wedding dresses that I had designed. This eventually led to me pursuing art in college, in the form of a fashion design degree. Upon graduating, I worked for KOHL’S Corporation as a Technical Designer and Production Artist, before “retiring” at 25 to stay at home with Promise and start my own Custom Bridal Illustration business, Made by Adri. And now, quite frankly to the shock of everyone, they are letting me TEACH other students the art of illustrating fashion at a local University here in Milwaukee. It has been amazing for me to watch God intricately stitch all of these aspects of my life together. painting 3

And last;

a STONE: I was born with Spina Bifida. By much of the world’s standards, I was a mistake. A life that could easily justified being aborted. My legs are funny looking. They are missing their calf muscles, so they are skinny and misaligned. I can’t feel my feet and oftentimes they are purple and very cold. My bladder doesn’t function properly, so I self catheterize every 3 hours. I’m meeting with a doctor tomorrow, to discuss possibly putting in a colostomy bag. I wear leg braces to give added support to my ankles and use a cane so that I can balance (and not fall over) while waiting in lines, or simply stopping to talk with someone in passing. I have a metal rod and screws in my back that (to Chris’ chagrin) give me an impossible golf swing. And now, in January of 2014, I was diagnosed with a brain malformation called an acquired Chiari malformation. So while I thought my upper body was “safe”….it turns out it’s not! But do you know what? I am so thankfull for ALL of the things I just mentioned. And do you know why? Because of a STONE. A huge, heavy stone that was placed and sealed at the entrance to a burial site in the side of a mountain, where Jesus’ Christ’s crucified body was wrapped and placed. But this stone didn’t stay there. It was moved three days after it was placed, in order to reveal that Jesus was no longer dead, but RISEN. And do you know what else? The moment that stone rolled back from the entrance of that grave, it forever changed the essence of my suffering.

John 3:16 “For God so loved the world, that He gave His only begotten Son, that whoever believes in Him shall not perish, but have eternal life.”

I am currently taking a graduate course on the Gospel of John, and we learned tonight that the original text for our word, “eternal life” is “zoe aionios” which means “life of the age to come”. Jesus Christ died and rose again three days later, in order to give me life HERE and NOW in the middle of my pain and suffering…not just life after death in heaven. The fact that this stone was pushed aside to reveal that Jesus Christ was truly who he said he was, the Son of God, is revolutionary to both my life and yours. It changes everything. It gives me courage to live outside of my physical circumstances, knowing that “He must increase, but I must decrease” (John 3:30). It has proven to me that in my weakest moments, Christ’s glory and power shines the brightest. This brings incredible joy and fearlessness to my life.

So there you have it. The thought process behind this blog and my hope for how I will use it. I really do pray about this blog quite a bit. I pray that some of you “curious readers” will better understand how a stone that rolled away can change everything in your life, too.


%d bloggers like this: