Sleep, Fear, and Faith

It is rare for me to have an uneventful doctor’s visit. But recently I had an appointment that could be regarded as such.

“Everything looks great,” my doctor said, examining my three surgical incisions he had made two weeks prior to this visit. “You’re healing up on schedule.”

Minutes later I left his office to meet my mom and my son, both waiting in the lobby. It felt amazing to be under the guise of “normal” for once. What a gift to not hear how complicated my case was or how unique my symptoms were.

No, this particular appointment was simply ordinary. I was healing OK. And to me, that was extraordinary.

Two weeks prior to this appointment I had undergone surgery for an Inspire Therapy implant to help my sleep. A battery operated stimulator was implanted under my right collarbone, with two leads extending out from it in opposite directions. One lead went by my lungs between my ribs, while the other one wrapped around the hypoglossal nerve in my neck. Once activated, the lead next to my lungs will sense when I am not breathing, signaling the main implant. Then an electrical pulse will be sent to the other lead, causing the hypoglossal nerve to move my tongue out of my airway. This all will happen while asleep.

See, sleep apnea left untreated is dangerous and life threatening. During a sleep apnea episode, the airway collapses, leaving the body without an oxygen supply. An emergency signal is sent to the brain, causing adrenaline to race through the body to open the airway. Someone with sleep apnea can have this happen dozens, if not hundreds of times throughout the night.

According to my last sleep study, this is happening to me 51 times an hour.

Although I have tried all kinds of treatments for sleep apnea these past three and a half years (even surgical), nothing has helped me long term. During the last several months, my lack of restorative sleep snowballed into an even greater issue. Fatigue became an unrelenting bully, affecting nearly all aspects of my life. No matter how much I slept or how much caffeine I consumed, I always felt a blanket of exhaustion over me. Driving long distances became unthinkable, because I might fall asleep at the wheel. Depression, forgetfulness, and confusion became regular visitors. In wakeful hours my brain was working overtime to try and function with daily tasks, and during sleep it interpreted my body’s survival tactics and adrenaline rushes as terrifying life and death nightmares. Sleep was not – and currently is not – ever restful or restorative for me.

I had my implant surgically placed five weeks ago. My follow-up appointment was three weeks ago.

Now I am just days away from the Inspire Therapy implant being activated…but I am afraid.

I am afraid I will be in the 5% of people implanted who do not receive any benefit from the device. Conversely, that does mean that 95% of my surgeon’s patients do have positive results from Inspire Therapy, but my body has not typically been one to follow the majority when it comes to medical issues.

I am afraid of complications. The “what if” scenarios are strong in my head right now. I have experienced rare and painful complications many times through the years, including my jaw issues that were brought on by surgery gone awry over three years ago.

And finally, I am afraid of letting others down who are cheering me on and praying for me. Even though this outcome is beyond my control, there is part of me that feels responsible to share good news. I had jaw dislocations over the summer and muscle spasms that were unbearably painful after this latest surgery. It’s hard to not feel like I am burdening others with more disappointments, should this implant not work.

These fears are real, but they aren’t everything.

I am also optimistic.

Sometimes it is easy to see God’s provision, while other times it is more difficult. These last several months I have seen God open doors time and time again.

In April it was determined my airway collapses in a way that could possibly benefit from Inspire Therapy. The next four months were filled with countless phone calls and emails between our doctors, insurance, and the Inspire Therapy representatives. (A huge shout out to my husband, who did most of the footwork on this!) My case was repeatedly rejected by insurance, but it was finally, miraculously approved after many prayers, and three appeals. My implant surgery was set for late October.

However, with my Apnea-Hypopnea Index numbers nearly twice as high (51) as the threshold for severe (30), my surgeon mercifully expedited my surgery to late August, two months earlier than first scheduled. God’s grace.

And perhaps most significantly, since my surgery date was moved, my activation date also got rescheduled.

The new date for my implant activation is what would have been my dad’s 75th birthday.

My dad will always hold a special place in my heart. Two years ago his birthday was extra memorable and cause for celebration. He had just been released from spending several days in the hospital after fighting a severe infection alongside his cancer. Only weeks later my dad passed away. Of all days my implant activation could be scheduled for, having it on my dad’s birthday feels like a hug from Heaven.

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Dad with my son in 2013

I don’t know how these next few days will play out. I don’t know if Inspire Therapy will work or whether or not there will be complications.

I do know that even though my fears are strong, God is stronger. There remains purpose through all of these struggles, and there is comfort in trusting God with my life. God’s leading has been evident throughout this whole process, and certainly He won’t let me go. I hold onto Joshua 1:9 – “Be strong and courageous. Do not be afraid or discouraged, for the LORD your God is with you wherever you go.”

And regardless of what is ahead, I was able to have at least one ordinary doctor’s appointment just weeks ago. Maybe…just maybe…I’ll be able to have more of those simple, straight forward kind of appointments in the days to come. Either way, I will be thinking of my dad at my next one.

Reflections on Turning 40

June is a special month in our family, because two out of the three of us have birthdays. And I love birthdays. I love cake, presents, the Happy Birthday song, blowing out candles, and the thoughtful and funny cards. I especially enjoy those paper noisemakers that magically unroll when you blow into them and then automatically roll back up. Inevitably spit will create a soggy hole in them, rendering them worthless, but until that happens they provide a solid 5.2 seconds of fun. I love those things.

Just a few days ago our son turned nine, and this week I turned forty. There was a time when I couldn’t wait for forty to come, because I figured then nosy strangers would stop asking if we were going to have more children. “Nope,” I imagined I would say, “I’m getting too old.” And people would nod in agreement, seeing that, yes, I was old…and satisfied.

Now forty isn’t merely in my imagination anymore – it’s my reality.

Thankfully these days I’m not bombarded with questions and advice from strangers about the size of my family (I assure you this will be its own post at some point).

But “old” and “satisfied” are not exactly the descriptors I would probably use for my life right now.

For starters, I don’t feel old in my spirit. I still feel like a kid at heart. I adore rubber chickens, funny t-shirts, socks with cartoon pictures on them, and big scoops of ice cream. I happily wear my Chewbacca onesie that more closely resembles a Bigfoot costume, completely embarrassing my husband. It’s a good thing to have a light-hearted side!

However, my body feels old. I’m not worried about the facial wrinkles that naturally come, chronicling times of joy and sorrow in a life well lived. Or the gray hairs that have sprouted up all over my head (hair dye remedies that issue anyway!). No, it’s ongoing pain issues and exhaustion that make life difficult in this body of mine.

And satisfied? Yes and no.

In many ways, I couldn’t be more satisfied. I have an amazingly supportive and handsome husband. And our son is the funniest, kindest, most creative boy I know.

We live in a small but great ranch style house that is perfect for us. Inside, you will find a ping pong table covered in laundry (at least the potential to play ping pong is there, right?!), a guitar that doesn’t get used, a piano that is played everyday, IKEA bookshelves, and an extensive inventory of LEGO bricks, pieces, and creations. It’s a good house.

We have two vehicles in our driveway, pots of colorful flowers on our deck, and elementary school artwork hanging on our refrigerator.

We also have friends and family who have loved us well through our difficulties and victories. It’s incredible to have such a support system.

God’s kindness is overwhelming when I think about it.

And in these ways, life feels satisfying. There are all kinds of reasons to be thankful.

But on the other hand, I have heartaches that will never be fully healed this side of Heaven.

As I have gotten older, I realize living with loss is a part of life. The loss of health, the loss of loved ones dear to me, the loss of certain expectations and dreams. These are common but profound losses that many others experience as well. Somehow we keep moving forward, though, learning to function as new realities set in.

Experiencing many losses myself these last few years in particular, there are times when I wrestle with my faith and my understanding of the world. I just can’t understand it all. And when I try to make sense of things, life feels terribly unfair.

It’s during these times, I’m not satisfied. But then again, maybe that’s the point.

If we knew all of the answers to life’s problems, we ourselves would be God. And if we had everything that could give us satisfaction, why would we ever search for meaning outside of ourselves?

A few years ago when my son was four, he asked to help water the lawn. (We didn’t have a sprinkler at the time.) The night before, my husband had applied fertilizer on the grass. Because of this, the watering needed to be steady and even, and I knew that my energetic son wouldn’t be able to do that. The nozzle on our hose was also difficult to operate, and it would be setting him up for failure if he tried to use it for this particular task. So I told my son no, he wouldn’t be able to help this time.

Of course he was upset, because to him I was simply being mean and unreasonable. In his mind, he was fully capable of helping. Instead of trying to explain all of the reasons and nuances behind my decision, which he wouldn’t be able to fully understand anyway and would have unreasonably argued about, I just reassured him that I loved him deeply, and he needed to trust me that I had other, better jobs for him to do. Of course this didn’t go over too well at the time, but I was able to find another way for him to help me that day.

This scenario, in many ways, parallels what trusting in God feels like when I don’t understand His reasoning but am asked to trust His heart anyway. Like my son at age four, I can be adamant that my ways are best, even though I don’t have the full picture.

I have to remember my Heavenly Father loves me, has a much more thorough understanding of the world around me, and always has my best interest in mind.

When the path is easy, it’s easy to trust. When life is hard and the future uncertain, it becomes so much more difficult. Sometimes it feels like I’m holding on by a thread. But God is the same – He remains the same day and night, through seasons of clarity and seasons of unrest. Circumstances change, but He doesn’t.

I’m grateful to be forty. These past four decades have taught me a lot, and I know I still have much to learn. I’ve had times of despair, desperation, and delight. I guess that’s what life is – a mixed bag of emotions and situations that can ultimately drive us mad or drive us closer to our sense of purpose.

For me, my purpose is to trust God wholeheartedly and encourage others along the way.

And, of course, to enjoy as many of those paper roll-out noisemakers, rubber chickens, and ridiculous T-shirts as humanly possible.

 

 

 

 

 

 

 

 

 

 

Thank You, Mom

In honor of Mother’s Day, I thought I’d take a little time to celebrate my mom. Will you join me?

Mom, thank you for serving me breakfast every single morning. This is not a tradition I have passed along to my own family. Instead, I taught my son how to pour his own cereal and make his own toast. And since my dear husband essentially lived on cereal before we were married, he does fine in the mornings. But you were always so sweet to lovingly prepare breakfast – egg casserole, toast, bacon, cereal – a constantly changing, delicious menu.

I was definitely spoiled when it came to your food!

You made it a point for our family to have meals together, and you were such a good cook. When I was in high school, you and Dad were kind enough to host special breakfasts just for my friends!

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Snuggling up with Mom after a bath

Mom, thank you for fixing my beloved doll Lena (who Grandma had made for me) when my brother ripped off her head. I’m confident he didn’t actually mean to do it – we were fighting, as siblings do – and Lena was an unfortunate casualty. But with her cloth head apart from her body, I truly thought Lena was dead. I came screaming inside and laid her head beside her cloth body and started covering her up with Kleenex for a funeral. You reassured me that Lena would need to undergo surgery, but she will be able to be in one piece again. That night you worked your sewing magic and reattached her head!

Lena’s battle scars just proved she was tough, and they also showed my mom was a sewing superhero.

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Me with Lena rocking our matching homemade outfits

Mom, thank you for fixing my clothes as well. Remember my first day of first grade? The hem of my floral dress (one that Grandma made) got caught on a screw at the top of the playground slide. As soon as I slid down, my hem tragically ripped the entire way. I was devastated! I made it through the rest of the day, thanks to safety pins, but you sewed it together again after I got home.

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First day of 1st grade in my infamous dress with my twin brothers behind me –  their first day of seventh grade

Mom, thank you for helping me figure out how to be an entrepreneur with my brothers. I would buy candy in bulk, and you helped me figure out how much I could charge per piece so I could make a slight profit. Thanks to you (and one of my brothers having a ravenous sweet tooth) Carrie’s Candy Shoppe was a huge success. (And of course “Shoppe” had to be spelled the fancy way – this was a high class establishment, you know…)

Mom, thank you for encouraging me in my creative endeavors. Writing stories, playing my saxophone or piano, creating art projects, making family newspapers…you were supportive whatever I would do. You and Dad attended every piano recital, band concert, and event I was ever in. It meant a lot to have you in the audience, and you were always my biggest encouragers afterwards.

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Practicing for a piano recital

Mom, thank you for somehow salvaging the brownies I tried to make without mixing in the eggs. In my mind I had somehow reasoned that eggs were mostly liquid, so they would be fine to set on top (they’d soak in eventually, right?). This genius idea was acted upon after the brownie mix had already gone into the oven. How in the world did you save those?!

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Mom, me, and Grandma several years ago

Mom, thank you for bringing me crutches to church camp and letting me stay the week, even though my kneecap had dislocated. This was not the first time it had happened, so I knew how to care for it, but this was the farthest away from home I had been when it had occurred. You and Dad were brave to let me stay, and that made a lasting impression on me.

I learned you both were there when I needed you, but you were also able to let me be independent if I had the tools in place to succeed.

Mom, thank you for your fervent prayers that I would not have to eat sheep eyeballs the summer I traveled to Kazakhstan to work with college students and orphans. This was not on the forefront of my mind, but it was on yours. So you prayed and prayed. Our team was prepped to enjoy a traditional meal honoring the Kazakh culture, but the feast was unexpectedly cancelled! No eyeballs for me, because God heard my mother’s prayer!

Mom, thank you for instilling a love of flowers in me. I know Grandpa instilled that in you, and you passed that love onto your kids. Now each of us have flower gardens at our own houses, and we get to enjoy God’s beauty everyday.

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One of the irises transplanted from your garden

Mom, thank you for playing Double Solitaire with me. We wouldn’t play often, but each time we would play 2 out of 3 games to determine the “Grand Championship of the World.” Somehow we were the only two contenders for this ever-shifting title.

Mom, thank you for taking me to the hundreds of doctors’ and physical therapy appointments over the years.

I’m sure seeing me get injured so many times tugged on your heartstrings, but you always found practical ways to help and encourage me.

When I had to have my first surgery in eighth grade (on Halloween, no less!), you and Dad were there, just like you have been there for so many surgeries afterward. Even after I was married, I came home to live with you and Dad for a few weeks following two of my major knee surgeries, because my hubby was swamped with school and work responsibilities. You had the flexibility in your schedule to care for me, so you did. My leg brace was so cumbersome, and I was in such extreme pain I needed help with everything – from going to the bathroom to getting off the couch. You even got up with me in the middle of the night to give me a snack so I could take my pain meds!

Last year I broke my leg and sprained my wrists and couldn’t care for myself at home…again. Only weeks after Dad passed away, you took me in during daytime hours, and our son, who was in first grade at the time, at night.

This was a huge blessing to our family, and you did it all again with kindness and compassion.

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Mom and me out to lunch – I was in a wheelchair with a broken leg at the time. Mom made an effort to get me out.

Mom, thank you for welcoming friends as family and for making others feel loved in your presence. You have a gift of making people feel accepted around you, which is how so many felt around your mom. I see Grandma’s sense of humor and hospitality in you!

Thank you for being a loving, involved grandma and mom. You and Dad even moved to Kansas City after Dad retired so you could be closer to family, since all three of your kids and seven grandkids live here.

What a blessing to be able to have you nearby!

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Mom helping with our son’s very first bath at home after a month in the NICU

Mom, thank you for modeling a faithful marriage. You and Dad were married 49 years! I am so grateful for the stability you provided.

You and Dad valued commitment and love, and you enjoyed life together. Thank you for this legacy.

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Dad and Mom in 2015

Mom, thank you for all the pep talks, hugs, prayers, and care you have selflessly given me (and my brothers, too)! Having been a mom myself for nearly nine years now, I have a different perspective on the sacrifices you and Dad made for us kids all through the years. All I can say is thank you!

Happy Mother’s Day, Mom! I love you!

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Please Don’t Forget About Me

I have to cancel plans. Again. I don’t want to, but it’s more than I can manage today.

My jaw pain is intense. It dislocated again last night, which is happening a lot these days. My condyles are so small and the fossa so incredibly shallow, the joint simply slips out of place. And then I talked and smiled too much today. It’s ironic that it physically hurts to be friendly.

I am also struggling greatly with exhaustion, with obstructive sleep apnea being the culprit. Even though I have a new mouthpiece to wear at night, I am still not getting the restorative rest I desperately need. I won’t go through all these details, though.

I know you are busy, and you just need to know I won’t be there.

But please don’t forget about me.

Living with chronic health issues is hard. Missing out on life is harder.

I don’t want to stay home. I want to be with you. I want to be able to laugh and create new memories together. I want to eat delicious food and share stories.

Maybe I would tell you about some of my hilarious stories from the kitchen from years gone past, like how I got mixed up attempting to make spaghetti and boiled the meat instead of boiling the noodles. Let’s just say I’ve learned a lot since my early days!

Oh I have a lot of stories…

I’m at home though, because it is a rough day. I miss sharing this time with you.

Please don’t forget about me.

I will see your Facebook pictures posted later, and I will be really glad you had a special day today. But I will also struggle with sadness, because I wasn’t able to be there to experience these moments alongside you.

I want to be included, but it’s hard. And sometimes it’s not even a possibility.

With my energy level hovering near empty all day long and ongoing jaw pain, it’s hard for me to contribute to activities and conversations in the ways I would like. When I do talk, if it’s a hard pain day, it may be difficult for you to understand me. If I use my dry-erase board, the rhythms of communication take some getting used to.

It all feels awkward to me, too.

You have a full life with all kinds of responsibilities and activities. In contrast, my daily life is much slower and not nearly as outwardly impressive as yours.

Please don’t forget about me.

In years past, I used to live with great ambition and energy, but I simply don’t have much in the tank these days. In high school I was a star saxophone player, in college I was a campus ministry leader, and afterward I enjoyed a fulfilling teaching career. Life took on a different pace when I became a stay-at-home mom, but it was full in its own way. But then I developed these sleep and pain issues that have handcuffed me in more ways than you probably realize.

When I am able to get out, you see me dressed, in make-up, and eager to be with you. I am an extrovert, after all! But you haven’t seen the preparation I have had to do beforehand and the extensive resting I have had to do afterwards.

For example, going to my doctor’s appointment this morning was a struggle. Usually for appointments someone joins me, but today I just went by myself. Between smiling at the parking attendant, those in the elevator, checking in with the receptionist, exchanging pleasantries with the nurse, and then speaking with my doctor for ten minutes, my jaw had had too much. I had significantly overdone it. Now my jaw aches and throbs, as it always does after I have used it too much. It demands my full attention. I had been so wrapped up in getting my son to school earlier that I didn’t think to bring my dry-erase board to my doctor’s appointment. And now I am paying for it.

I am home now, and I will rest, do infrared therapy on my jaw, and hydrogen insufflation therapy through my nose. I am looking forward to ozone injections in a few days that will help my jaw pain, at least temporarily. Until then, I need to make concerted efforts to not talk, or my pain will worsen.

I will try not to over-analyze how my body is doing, but there is a part of me that says, “Things shouldn’t be this way.”

Please don’t forget about me.

Remind me that I am important to you. That you are praying for me. That you are in my corner.

Please text me, send a card, or make a short visit. I need your hugs and reminders that I am loved.

I feel self-conscious these days about how many times I haven’t been there for you or your family. You see, it is often a struggle for me to get through each day, and I don’t have much left to give. I grieve our time apart.

I miss you. And many times I feel like life is passing me by.

This is me now, in my 30s. But someday this may be you. It could be sometime in the next few years or later in the sunset of your life. You will be lonely, too. But I will do my best to be there for you, because I understand what a difficult road this is.

I will do my best to not forget about you… And please don’t forget about me.

 

 

 

All Suffering is Significant

Over the past few years, I have had others close to me minimize their own pain. We will be in a conversation, and they are sharing personal struggles. But then they shake their heads. “I know it’s nothing like you’ve been through,” they say apologetically.

I genuinely dislike this, because I care deeply about those in my life, and I desire to share life with them. This includes knowing their struggles so I can be an encouragement in some small way. Yes, my family has been hit hard with difficulties these past three years. But we didn’t choose any of it. And I promise that we’re not trying to win a contest.

However, there have been many times where I, too, have minimized my struggles in front of others. Not wanting to be a burden or simply feeling like their situations were heavier than my own, I have pretended that my own heartache is not weighing me down nearly as much as it is. But the end result of not sharing what I’m going through doesn’t help anyone – others don’t know how to help or encourage, and I am in denial about how difficult things are.

Of course there is a range in suffering. Stubbing a toe is a different scenario than being diagnosed with a terminal disease. We do not need to make mountains out of molehills. But there is often a tendency to legitimize someone else’s suffering while discounting our own. This is a problem, because we are not giving ourselves permission to be authentic – not with ourselves, others, or with God.

The fact of the matter is that all suffering matters. The big issues, the small ones, the ongoing, relentless ones. It is all significant.

Suffering shapes us into who we are, defining and refining our character and beliefs.

Jesus loves us so deeply that He cares about our pain, regardless of how big or small it is. The Bible shows Jesus’s outpouring of compassion time and time again, and I have yet to find any examples of Jesus scolding someone for sharing a heartache with him. He welcomed authenticity, no matter what the struggle was.

By turning water into wine, He saved a wedding host from embarrassment. (John 2:1-11)

By healing lepers, He showed compassion for the outcasts. (Luke 17:11-19)

By multiplying fish and bread, He fed a hungry crowd of people. (John 6:1-15)

By raising a girl from the dead, He brought joy to a grieving father. (Mark 5:21-24, 35-43)

Jesus didn’t only address the most critical needs; He ministered to people in a variety of situations. Jesus’s approach is refreshing. We can often feel like we must not bother others with our problems, especially God, but Jesus proves that God cares about all aspects of our lives.

We must be honest about all aspects of our suffering. Otherwise, we will never have the opportunity to be encouraged and strengthened by others and God Himself.

This is something I have learned the hard way. Even though I have suffered with chronic health issues since childhood, for decades I did not give myself permission to show the heartache that went with it. I didn’t want to feel the weight of my sadness or put an extra emotional burden on others. So none of it was ever processed – all the dislocations, injuries, surgeries, doctors’ appointments, physical therapy sessions, time on crutches and in a wheelchair, etc. There has been a lot.

“Just be grateful” was the mantra I tried to uphold. Nothing, in my mind, that I was going through warranted feelings of sadness, agony, or loss, because there was always someone who had it worse than me.

There are orphans living in war-torn countries without a clue where their next meal will come from, and you are upset? Be thankful! You have never lived without a warm home, running water, or electricity; just think of the homeless struggling to make it on the streets! Be grateful for what you have! And what about the man on the news who just lost his son to gang violence? You’ve never had a relative murdered. Be thankful!

All of these situations truly are horrific and deserve reflection and attention. However, as I have learned over the years, the magnitude of others’ problems doesn’t invalidate my own suffering.

There are different kinds of suffering, but all can be legitimate.

Over the years, my feelings of loss, disappointment, and anger all took a backseat to forced gratitude. Of course it’s good to be grateful. But we shouldn’t hold gratitude over ourselves or others when genuine feelings need to be processed first. My “just be grateful” mantra turned into decades of shaming myself for feeling anything other than thankful…because things could be worse.

I didn’t give myself freedom to run to God with everything. To not compare. But just cry out to Him.

My eight year old son had his first big fall when he was a year and a half. He was running and tripped, hitting the edge of our concrete step. His lip and chin took a direct hit. His tooth cut the inside of his lip as well, so there was a lot of blood. He was too shocked to cry, but his mama sure did. I knew he would be OK, but he had never had an injury like this before. In the grand scheme of things, I knew this accident was minor, but as his mom, I embraced him and felt his pain right alongside him, offering him comfort and care.

There’s no reason to think God doesn’t do the same with us.

Psalm 34:18 tells us, “The LORD is close to the brokenhearted and saves those who are crushed in spirit.”

This verse does not provide magical criteria to ensure our suffering is legitimate. It simply states that if we are brokenhearted, God is nearby. And if our spirits are crushed, He is the one to save us. We are designed to be emotional beings, and God wants us to be honest with Him, whatever we are going through.

Our feelings go somewhere if they aren’t able to be expressed. For years, my emotions were buried deep under invisible but weighty chains of shame and depression. Finally, in the safety and security of a wonderful Christian counseling office, I was able to process the hurts of the past and realize that I do, indeed, have a story.

And it is a story worth sharing.

I am not going to dramatize my experiences, but I am not going to minimize them either. My suffering has been hard, and I am still in the midst of a very difficult season with my health. Even so, it is still a struggle to not compare my story to others. Maybe my suffering isn’t legitimate enough in someone’s eyes, or maybe someone else is going through a more challenging time. That could all be true. But at the end of the day, it doesn’t matter. My story is my own, and God is using it to shape me in profound ways.

Life lessons are obtained by sharing burdens with one another and with our loving God. But it all starts with authenticity.

So how can you be more honest about the suffering in your own life? How can you be a blessing to those around you who are suffering?

I know that someone needs to hear my story. Just like someone needs to hear yours.

 

 

 

 

 

 

 

 

 

 

Brave

Bravery has taken on many shapes and sizes during my life.  Sometimes it has been in dramatic ways, while other times it has been simply getting through the day. But each time it has meant momentum moving forward. Bravery often times begets bravery…if only we can remember those many times God has given us courage in the past.

When I was 14, bravery was moving with my parents to a new town while my brothers were away at college, and walking through the doors of my new high school alone, not knowing a soul. As a college student, bravery was traveling to a developing country for the summer, with my luggage arriving seven days after I did! And as a new mom, bravery was leaving the hospital without our precious son, born eight and a half weeks early, while he stayed behind in the Neonatal Intensive Care Unit for extra medical care during his first month of life.

Each of these times God gave me the courage, strength, and the ability to move forward. There was nothing in me that could have managed these situations on my own.

These days bravery means living in the moment, not in fear of what may be ahead and not in agony over what has been lost.

While there are times to process both the past and the unknowns of the future, bravery means not being controlled by either realm. And that is difficult, because a lot has been lost, and there are many unknowns, especially in regards to my health.

Just over three years ago I was diagnosed with severe sleep apnea, meaning my airway was closing multiple times an hour and depriving my body of valuable oxygen during sleep. The Apnea–Hypopnoea Index (AHI) measures these occurrences. An AHI of 0-5 is normal, 5 – 15 is mild, 15 – 30 is moderate, and 30 and higher is severe. I was at 61.  No wonder I always felt exhausted and suffered from terrible depression. I wasn’t able to get restorative sleep. Ever.

For several months I used a CPAP and then BiPAP machine, sending pressurized air through a tube and mask in order to keep my airway open while asleep. However, the side effects were unbearably painful for me, hurting my jaw and blowing my abdomen up like a balloon each night. Desperate and in even a deeper depression after having so much sleep deprivation, I had a genioglossal advancement, opening up the airway by cutting the mandible (lower jaw bone) and moving it forward, which, in turn, moves the lower part of the tongue that can close off the airway. This did help my sleep apnea initially, bringing my AHI clear down into normal range!

However, the pain and complications following surgery were extreme.

My bone structure itself was problematic; in surgery my doctor had noted how unique it was, unlike anything he’d ever seen before. My joints were also unstable, and my jaw dislocated multiple times. Additionally, my lower teeth all became loose, and eventually one tooth had to be removed. But probably the biggest concern was that my broken mandible was not healing from surgery. Bone grafting was done all throughout the surgical site, but it was unsuccessful.

More doctors.  More pain.  And so many tears.

Extreme TMJ pain developed, and a mouthpiece was made to stabilize my joints, but this didn’t help long-term. My husband and I traveled across the country to a world-renowned specialist, one of five trips we made last year for treatment. I was given a new mouthpiece, Botox shots, infrared therapy, and physical therapy exercises. Still I would only experience short-term relief, only to cycle back to the same pain again and again.

In the midst of all of this, my husband’s dad and my dad both passed away from cancer. We were close to both of them, and their absences were – and still are – felt immensely. Only three weeks after my dad’s memorial service, I had a bad fall, dislocating my patella, breaking my leg, and spraining both wrists. I was wheelchair and walker-bound for three months. I couldn’t drive or even care for myself for much of that time. I continued to have jaw issues and even had to have a surgery to remove prolific scar tissue. Thankfully God provided family and friends to pray and also help out in tangible ways, because physically and emotionally I could hardly take any more.

Bravery means trusting God when circumstances are beyond our understanding. Even when loved ones are called Home. Even with ongoing pain. Even with unknowns ahead.

Now three years later, I am still living with a broken mandible, a vertical fracture that developed where my tooth once was, TMJ pain, and unfortunately, sleep apnea again.  My most recent sleep study showed an AHI of 51, nearly back to where it was pre-surgery. I am exhausted, and I miss the ability to talk and laugh without pain. Complications have been so unprecedented and severe that, of the 17 doctors (both mainstream and alternative) that I have seen for these issues, none have seen a case like mine.

I have been asked if I regret having the first jaw surgery. Looking back with more information now, it is clear that this was not a good idea. But at the time, doctors didn’t realize the extent of my issues. We all knew sleep apnea is life threatening, especially with as severe as mine, and I was desperate for help.  Years before, I had success with extensive reconstructive surgeries in both knees after I had had nearly 40 patella dislocations.  No one understood how different my jaw would be.

Bravery is accepting that this is my story, as much as I wish it wasn’t.

This is not the story I would have written, but I trust that God has His purposes. And while the process has been painful in every way, I have grown tremendously.

I am blessed with an amazing group of family and friends who care deeply for me and my well-being. Through their encouragement, promises of Scripture, and songs, God continues to provide me with strength to keep going.

Bravery means knowing there is somehow purpose behind this pain, but being authentic with God and others about the ache in finding it.

During the last three years, I’ve realized God can take my anger, pain, tears, and anxiety. He wants me to be authentic and lay down all of my emotions and losses before Him. It is only when I give him my broken pieces that He can redeem my brokenness. And then I am reminded how His love and faithfulness never fail, regardless of circumstances or my feelings.

This week bravery was going to a new doctor for sleep apnea, continuing to pursue answers. I also began a new kind of treatment to promote healing for my TMJ pain and mandible. We will see what is ahead. I rarely “feel” brave these days, but by God’s grace I am moving forward. And that is good enough.

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Getting my Feet Wet

I’ve felt the nudge to start a blog for a few years now, but I’ve had the same excuses running through my mind as to why I shouldn’t.  I’ll be opening myself up to criticism.  Who would want to read my stuff anyway?  If I’m vulnerable, what will others think of me? 

But these past three years it has become increasingly difficult for me to talk, as jaw pain is a constant visitor, only varying in severity.  At times I have only been able to communicate through texting, social media, writing on a white board, or typing on an iPad, which has been a hard challenge for this extrovert.  Because of this, I’ve realized a blog could be an outlet for me, and just maybe it could encourage someone else as well.

So I decided it’s time to get my feet wet and actually get started.  And I couldn’t think of a more appropriate picture than the one of me in the Pacific Ocean from a rare getaway my husband and I took last year.  We are from the Midwest, living in a city but with farmland nearby, nowhere close to an ocean!

That water was FREEZING cold, but there is something awe-inspiring about immersing bare feet into the ocean.  Feeling the rhythmic power of the waves and sand between your toes is a feeling like no other.  And seeing the vastness and beauty of the ocean is a great reminder that no matter how big my problems seem, the world is bigger.  And God is bigger still.

I need reminders like this picture, because when you live in chronic pain and/or have difficult medical issues, it can often feel like your world is small.  There is an ongoing sense of loss over what you used to be able to do and what you can realistically do now.  It’s easy to forget that you still can contribute to the world, even though it may look different than before.  My hope is that blogging is one way my world can open up again.

Thank you for the opportunity to share this first post with you.  I have some different ideas for this blog, and I look forward to having others like you join me on this new adventure.