22 Months After Double Jaw Surgery

Hello friends, it's been a while since I've posted or given an update on my post-op recovery after double jaw surgery. I think I'm ready to share it now.

Background

For those who don't know, I had major orthognathic surgery on my upper/lower jaw, chin, nasal passages, and tongue tie on March 7, 2019. Prior to that, my health took a dive in May 2015 when I injured my neck (bulging disc/pinched nerve). In the weeks that followed, instead of feeling better we saw more symptoms developing: regular painful headaches behind my left eye, tinnitus, and bouts of mild vertigo that made it impossible to drive very long without feeling dizzy. I also started experiencing crippling bouts of deep fatigue and weakness that would come out of nowhere (after numerous tests, I was later diagnosed with fibromyalgia). GI issues also worsened, which I've shared about in a previous post.

From May 2015 - March 2019, every day was spent managing some or all of these symptoms while trying to handle everything else on our plates (with SO much help from my husband Jason, I can never begin to deserve that man). Amazing friends and family were also lifelines on the worst days.

 After years of unexplained symptoms, a dentist with specialization in treating airway issues discovered that my jaw was receding and compressing my airway to 1/10 of its normal size - she described it this way: "Imagine trying to breath through a straw, but someone is pinching it almost completely closed. That's literally what is happening to you." 

As we began the process of preparing for surgery, every specialist I met with said the same thing: "I honestly don't know how you are breathing right now." "You have one of the worst airways I've ever seen." "This surgery is literally going to change your life."

The feeling of relief after years of mysterious and debilitating symptoms was overwhelming. 

We weren't sure if or how much jaw surgery would help my overall health. But since stress has been identified as a definite trigger and a restricted airway creates extra stress on the body as the jaw/neck/shoulders are constantly fighting to hold it open, it certainly seemed possible that I would find some overall relief. So we prayed, waited, and on March 7, 2019 we drove to Lexington for the procedure.

Surgery and Recovery

Here is the Facebook post that Jason shared 11 days after surgery (March 18, 2019):

Donna underwent a double jaw and chin advancement on March 7 at UK hospital in Lexington. The surgery was successful in moving her jaws and chin forward in order to resolve obstruction to her airway, which was about one-tenth the width of a normal person (imagine breathing through a straw). This obstruction had resulted in various chronic ailments, including severe sleep apnea.

The results of the surgery were successful. The attached before/after picture shows the immediate widening of Donna's airway. She has already felt significant relief and she has retired her sleep apnea machine for good. The surgeons also found an unexpected polyp in her left sinus cavity about the size of a gummy bear.** They removed this polyp, which was benign, and Donna has already observed relief from chronic headaches and tinnitus on that side of her head.

Donna has been recovering in line with expectations. We spent one night in the hospital to get her pain under control. We were discharged the next day and have been recovering steadily at home since then. Her jaws were not wired shut, and she was encouraged to start talking within the first 24 hours. She has a splint in place to keep her jaws aligned for the first 2-3 weeks.

I spent the first week blending her meals and feeding her with a syringe and catheter. Pain levels have slowly improved each day. The cocktail of prescription meds really messed with her existing stomach problems. But we are now on over the counter meds and diet and digestion are almost back to normal.

After her follow up appointment with the surgeon on Friday, she was encouraged to keep stretching her jaw more each day. She is now strong enough to be up and moving around and making her own liquid meals some of the time. Her cheeks, mouth, and chin are still numb from strain on her nerves, but also getting better each day.

We have been overwhelmed with love and support before, during, and after the surgery. My parents were superstars and watched our kids for 9 days. The cards, flowers, meals and kind words have really gotten us through this hard time. Donna has told me this is the hardest thing she's ever done, but she remained determined to see this through because of the relief it will bring. It is no exaggeration to say that her life will be forever changed and we pray this relief will continue to live up to expectations.

** The surgeon later corrected himself and said the polyp was more like the size of a plastic Easter egg, almost completely filling my left maxillary sinus area. 

Before/After Photo after surgery, shown to us before being discharged. 

You can see the immediate difference in my airway.

 

What Jason doesn't mention is that he sat up with me the entire night after surgery to suction the pooling blood in my mouth so I wouldn't choke on it while I slept. That when we got home, he kept track of my medication schedules, blended soups and smoothies and then fed them to me using syringes and catheter tubes which he would then wash before preparing the next dose of medication, water, or liquid food. And he held me when I cried.  

The recovery was hard, y'all. Really, really hard. The pain was unbearable at times, and it lasted for several weeks. It was by far one of the most difficult physical, mental, and emotional struggles that I've ever faced. 

I will post a link to some of my early post-op recovery photos here - be aware, some of the early recovery photos might be difficult to view. It's hard for me to look at them for very long myself.

The first year after surgery was kind of a blur. Below are the highlights related to my heath:

One Year Post-Op (March 2020) Observations/Changes

- Still very numb bottom lip (still is almost 22 months later), occasional drooling is inevitable

- Braces would be needed for several more months to finish the job of straightening/correcting bite and jaw alignment

- No noticeable tension headaches behind my left eye or any tinnitus for the first year post-op

- No vertigo from March - October! Unfortunately, an ear infection triggered it again that fall, but after the infection cleared up so did the dizziness for many months

- Fewer/less frequent bouts of deep fatigue, usually could be controlled with rest and not overexerting myself physically, plus keeping protein snacks handy

- Jaw was still very stiff and still hard to fully open and chewing hard foods really difficult. I got into the habit of cutting up food into small bites.

- A follow up sleep study showed that my severe sleep apnea had been fully resolved! (46 sleep interruptions per hour - severe - reduced to 0.2 an hour! Incredible.) The most pressing need (no pun intended) was addressed and corrected. I could breathe and maintain healthy oxygen levels at night without a machine. Woop woop!

- I was offered an elementary academic support assistant position at my kids' new school: a physically and mentally challenging job at times, but deeply rewarding. I've loved working again and being part of a team of amazing teachers and staff.

- I began grad school classes in August 2019 to resume studies for a masters degree in counseling with the goal of eventually becoming licensed.

- I began to slowly see improvements with my GI issues and could even start eating small portions of raw fruits and vegetables again after almost a year of not being able to tolerate them

- By December 2019, working full time, going to grad school, and maintaining our home/church commitments began to take a toll on my energy and overall health. (Looking back, I realize that I was waaaay too ambitious to try to jump into so many new changes so quickly.) I made the decision to put grad school on hold indefinitely and instead focus on family, church, and my growing love of teaching and working in education.

Then...2020

In March 2020, the whole world was hit with a global pandemic. The week that it was announced that schools and businesses were closing down, our son Emmett got extremely ill and had to be hospitalized with viral pneumonia. He was unable to be tested for COVID-19 because there were so few tests available at that time. We were worried that if he didn't have this new novel coronavirus, he might get it while in the hospital - no one seemed to fully understand how this new disease behaved, and we were sick with worry. Thankfully, after two nights in the hospital Emmett's oxygen levels stabilized and could come home to finish recovering.

I think it would be unnecessary to talk further about how stressful every aspect of life has been in 2020, since every person reading this post is living through the same strains and trials - and some to a much, MUCH greater degree. Almost everyone I know is coping with levels of stress and strain that they've never experienced before, including myself. And it's been such a LONG, weary season. 

One small bright spot of 2020: to cope, I've rediscovered my love of sculpting/crafting miniatures. It's one of the few activities I can do for hours and not feel sick, dizzy, or overly fatigued afterward - and I've found that those creations generally bring encouragement and joy to others too. 

A recent project. 

It makes me smile every time I look at it.

Looking Forward

Unfortunately, I've recently had to admit to myself that more and more of my old symptoms have started returning with greater frequency and intensity: 

- More frequent bouts of deep fatigue

- More frequent muscle/joint pain

- Brain fog

- Jaw/TMJ soreness 

- Occasional headaches behind my left eye and tinnitus have returned

- Recurring nerve pain from my old neck injury, even after weeks of PT and other treatments

- The vertigo returned just before Christmas. It isn't bad enough to make the room spin, but it puts the world on a slight tilt and makes it harder to think and speak with clarity. PT exercises have helped to control it better, but lately it seems to get stirred up more and more easily.

My doctor recently told me that I might need to check with an ENT to be sure that the sinus polyp hasn't returned. And my dentist said that though the surgery made structural corrections to my jaw, my jaw/neck/shoulder muscles still want to revert back to unhealthy habits which are likely aggravating old issues (also, stress is likely worsening it). More consistency with strength exercises, stretching, and taking steps to minimize stress wherever possible are necessary to get these issues under better control. 

Yet, I am Thankful

So, do I regret having jaw surgery? No way. Even though surgery didn't resolve all of my issues (I was warned beforehand that it wouldn't), it corrected a serious underlying problem that could have led to long term risks and continual stress on my body. Today, I can usually go on long walks without feeling completely spent. The 7,000-10,000 steps I walk a day at my job would have been impossible two years ago. It's miraculous.

My walking buddies. My people.

I've been able to go on adventures with my family again. I've explored hiking trails in Appalachia with my husband (impossible two years ago). I can sing at church again with him, something I had to stop doing for a long time because it made me so weak and dizzy. 

Hiking on our anniversary trip to Berea, KY

June 2019

I've gotten to spend so many school days working with some of the sweetest kids and most incredible teachers around. It's been a joy and a privilege to be part of helping students grow and learn.

I am thankful for each breath, each small victory, each shared laugh with a friend, each opportunity to know others and to be known. I am thankful for each fleeting moment of health and strength. I am thankful to feel more like my old self again.

But I am learning now that I also need to grieve and let go of the expectations I once had for myself, and I need to come to terms with the limitations and the body I've been gifted with today. It's a painful process. Sometimes I fall into dark moments of disappointment, regret, and depression. Living with chronic pain and illness Wears. You. Down. But God's mercies are new each morning, and with each day He provides moments of love, beauty, and joy. If my eyes are on Christ and others, I can usually see them and it's easier to rejoice and be glad. If instead I keep my eyes on myself and on my pain and limitations, those moments are missed and the disappointments are heavier.

The greatest gift that has come out of this long season of health issues is that God has become so much more real and deeply tangible to me over the last 5.5 years. He is so near, especially on the hardest days. I've come to know Him as more than my Savior and Lord - He is also my Friend who has walked with me through some of the darkest valleys of my life - places no one else could have gone. He is truly a Rock, the Great Comforter, perfect Strength in my great weakness, and the only source of Eternal Hope. 

I'm not sure what the next year will hold, but He does. And I am thankful.

November 2020

 

Standing on the bank. 13 days to go.

Jaw Surgery Countdown: 13 Days.

My emotions are all over the place. Eagerness. Avoidance. Gratitude. Grumbling. Impatience. Dread.

The effects of stress are definitely making preparations more difficult. The tinnitus is back, as well as the tension headaches, muscle/joint aches, brain fog, and deep fatigue. Each day that brings us closer to the Big Day reinforces why we are taking this difficult step in my long term recovery.

The countdown has begun. February has been a constant stream of appointments, check ups, phone calls, making preparations, and getting affairs in order for myself and the family before entering hibernation/recovery mode. Bills paid? Check. Dependent family members? Housing/care arranged and taken care of. Hospital bag? Packed. Bulk cooking/juicing/fruit and vegetable purees stockpiled in the freezer? Check-a-check.

Juicing berries, apples, mango, and spinach for smoothies.

So pretty!

Planning all liquid meals has actually not been as much as a shock/stressor as it could have been. Since being diagnosed with gastroparesis in December (after a scary trip to the ER with chest pain that led me to believe that I was literally dying), we've had to completely change my diet to accommodate the stomach's impaired ability to digest hardly any red meat or unfermented dairy, raw fruits and vegetables, and only limited amounts of fat and fiber in one sitting.

Typical GP friendly breakfast on a good day.

Each ingredient carefully measured and recorded

to ensure enough nutrition and to prevent GI distress.

I would say that on an average day, about 30% of my diet is now liquid or creamed foods. Planning to transition to a 100% liquid diet has taken a lot more research, calorie counting and nutritional planning to be sure I'm eating enough to heal and stay strong. Gastroparesis cookbooks have been hugely helpful in finding recipes, like this one, this one, and this one.

Sweet potatoes, chicken, and carrots,

Pre-liquified.

Now my freezer is stocked with pureed soups and entrees, bone broth, and vegetable blends to be heated up and served in a squeeze bottle, and fresh fruit juice cubes to be added to smoothies and applesauce (which will also be served in a squeeze bottle). 

While it might seem like a bummer to discover yet another condition to be accommodated, the timing of everything has actually been a mercy. At my pre-op consult on Friday, the surgeon said that discovering the gastroparesis before surgery was significant and will impact the way that the anesthesia and post-op care will be managed. Besides, it's helpful to put a name to a condition that I believe I've lived with to some degree for many years. I'm curious to see if the correction of my jaw and tongue tie will have any impact on digestion and the severity of GP symptoms. (It's part of why I'm documenting all of the nitty gritty details of this journey - to keep a record and possibly to help or encourage others who might have a similar condition.)

Christian and Hopeful standing

before the Celestial City

When facing such a significant and invasive surgery, it's easy to feel fearful and uncertain about the future. I've woken up several times in the early hours of the morning with my head swirling and my palms sweating, praying for peace and wisdom and trying to think of ways to make the next couple of months of recovery go more smoothly.

The kids and I recently read through an abbreviated version of The Pilgrim's Progress for school. Christian's journey to the Celestial City is fraught with danger, doubt, and fear. Every time you think he's surely endured the worst thing on his journey, another even greater trial awaits him. Nearing the end of the story, Christian has already survived a bloody hand to hand battle with the demon Apollyon, passed through the terrifying Valley of the Shadow of Death, and even escaped the giant Despair in Doubting Castle.

At long last, he and his friend Hopeful are now standing on a riverbank and so close to the gate of the City of God that he could almost taste it... but there was still one more difficulty to pass through before he could enter: the River of Death.

"Now I further saw that betwixt them and the gate was a river; but there was no bridge to go over: the river was very deep. At the sight, therefore, of this river, the pilgrims were much astounded; but the men that went with them said, "You must go through, or you cannot come at the gate."

"The pilgrims then began to inquire if there was no other way to the gate; to which they answered, "Yes, but there hath not any, save two, to wit, Enoch and Elijah, been permitted to tread that path since the foundation of the world, nor shall until the last trumpet shall sound.

"The pilgrims then – especially CHRISTIAN – began to despond in their minds; and looked this way and that, but no way could be found by them by which they might escape the river. Then they asked the men if the waters were all of a depth? They said, "No"; yet they could not help them in that case, for said they, "you shall find it deeper or shallower as you believe in the King of the place."

One final act of faith. Pass through the dark waters, with no certainty of its depth or outcome. Then emerge on the other side and enter in.

At the risk of sounding overly dramatic, I feel a bit like Christian toward the end of his long and harrowing pilgrimage to the Celestial City. This has been a long journey of pain, uncertainty, trials, joy, sorrow, unanswered questions, and waiting.

"They then addressed themselves to the water; and entering, CHRISTIAN began to sink. And crying out to his good friend, HOPEFUL, he said, 'I sink in deep waters, the billows go over my head; all his waves go over me.'

"Then said the other, "Be of good cheer, my brother; I feel the bottom, and it is good." Then said CHRISTIAN, "Ah! my friend, the sorrows of death have compassed me about; I shall not see the land that flows with milk and honey. And with that a great darkness and horror fell upon CHRISTIAN, so that he could not see before him; also here he, in great measure, lost his senses, so that he could neither remember nor orderly talk of any of those sweet refreshments that he had met with in the way of his pilgrimage. But all the words that he spake still tended to discover that he had horror of mind, and hearty fears that he should die in that river, and never obtain entrance in at the gate; here also, as they that stood by perceived, he was much in the troublesome thoughts of the sins that he had committed, both since and before he began to be a pilgrim."

In His mercy and kindness, God has used this season to humble me, to expose my weaknesses and false beliefs of self-sufficiency, and to dig down to the root of my identity and security. He has (and still is) pruning away the things that I have sought to fulfill and define me but ultimately have been found wanting. He has reminded me of who I truly am: his child. Limited, but loved. Dependent and weak, but strong in Him and Him alone.

God in His mercy has provided so many people along the way to speak grace and truth to my weary soul. Even in these last couple of weeks as the surgery looms ahead like a dark valley of uncertainty, family and friends have taken the time to share truths that the Lord taught them during their own journeys through dark and uncertain valleys.

 "Ah, brother," said he, "surely, if I was right, he would now arise to help me; but, for my sins, he hath brought me into the snare, and hath left me." Then said HOPEFUL, "My brother, you have quite forgot the text where it is said of the wicked, 'There are no bands in their death, but their strength is firm; they are not in trouble as other men, neither are they plagued like other men'.

"These troubles and distresses that you go through in these waters are no sign that God hath forsaken you; but are sent to try you, whether you will call to mind that which heretofore you have received of his goodness, and live upon him in your distresses." 

"Then I saw in my dream that CHRISTIAN was as in a muse awhile, to whom also HOPEFUL added this word, "Be of good cheer, Jesus Christ maketh thee whole "; and with that CHRISTIAN brake out with a loud voice, "Oh, I see him again! and he tells me, 'When thou passest through the waters, I will be with thee; and through the rivers, they shall not overflow thee.'" 

Thank you, friends and family. So much. I look forward to celebrating with you all once this next step is over.

Hello, jaw surgery.

The biggest event on our horizon is the long awaited orthognatic (double jaw and chin) surgery to correct my obstructed airway and TMJ disorder. We hope it will lead to better sleep and health, as well as less pain and fatigue both now and in the long term.

Braces are a necessary step for proper teeth alignment prior to orthognatic surgery.
My resemblance to the Incredibles' babysitter is uncanny. #iamKari

The procedure has been scheduled for March 7th (seven weeks away!). I'm meeting with my dentist, orthodontist, and maxillofacial surgeon in a few weeks for my final checks before surgery. Then it's Go Time.

(This video below is a great explanation of the procedure, and includes a patient testimonial if you are curious or interested in learning more.)



Something about having a set procedure date made things feel a lot more real this week. In an effort to quell anxiety (nervousness = busyness), I've started making preparations for post-op care.

Here a list of the recovery supplies I've collected so far:

- Wedge Pillow to stay elevated after surgery
- Nutri Ninja blender
- Hamilton Beach Big Mouth Juicer
- Homegeek Water Pik (for keeping braces/teeth clean since flossing will be impossible)
- Essential oil diffuser/humidifier (interesting article by Mayo Clinic on EOs and post-op recovery)
- Ice packs and heating pad
- Dry erase board/markers (to communicate for first couple of weeks)
- DVDs and comfy pajamas

One of the trickiest considerations with jaw surgery recovery is nutrition: the jaws are banded shut for 4-6 weeks while the bones heal, which means everything going in must be in liquid/pureed form. I've begun experimenting with various recipes for soups, smoothies, juices, and basically anything that can be consumed through a condiment squeeze bottle. I hope to write another post soon with some of the best recipes I've gleaned from cookbooks, YouTube, and the interwebs.

EDITED 2/13/19: I was told at my pre-op appt last week that I will NOT be wired/banded shut after surgery (YAY) but will still be on a liquid diet for about a month (BOO).

Breakfast. Lunch. Dinner.

Rinse. Repeat.

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Some may be wondering if this procedure is medically necessary to correct my issues, or if more conservative and holistic treatments have been tried first to help improve my airway and long list of medical issues. The answer is yes and yes.

I've been battling poor health for several years now, and it has been gradually worsening over time. Over the last four years, I've been treated by several great chiropractors, massage therapists, physical therapists, and doctors with only limited success. Manual manipulations, daily physical therapy exercises, dry needling, craniosacral and therapeutic massage, splints, essential oils, supplements, eliminating huge categories of inflammatory foods from my diet - you name it, I've tried it. All with little/no lasting relief, I'm sorry to say. It is now clear that there are no other viable alternatives left, and so we can proceed with confidence knowing that this is the best option for my long term health. (I will also be having a small outpatient procedure later to correct a tongue tie, but the tie is minimal and the recovery will be much, much easier.) 

If you believe you are suffering with significant jaw issues, contact a dentist or orthodontist who specializes in airway/TMJ disorders for a consult. They are the best place to start in getting an assessment, and they will likely have several conservative and effective treatments to try first before considering surgery (according to my orthodontist, 85% of people he treats with TMJ/jaw issues can resolve their problems without surgical intervention).

******

Thank you all for your support, prayers, and encouragement as we take this crucial and necessary step. I will try to share details as I'm able throughout the process in case it is helpful to others who are considering or needing orthognatic surgery.

When I Don't Feel Like Singing Anymore

Today's a hard day. Singing is now physically painful, so I've had to stop for a while. Maybe until after jaw surgery, which I pray will help open my airway and relieve the strain it puts on my body.

We were asked in Sunday School today to share what God has been teaching us over the last year. These two words came to mind so quickly it brought tears to my eyes: Surrender. Trust.

This song by the amazing Eilidh Patterson resonates so deeply today. He is near. He will redeem.

Gains and Losses

2018. Good. Grief.

I'm struggling to put into words what the last few months have been like. It might be easier to create a month-to-month bullet list of the gains and losses our family has experienced so far this year.

I apologize if this post is very self-indulgent and long winded. I will write another update soon about our kids, homeschool, and the other wonderful parts of our life. But there have been a lot of not-wonderful things that we have been facing lately, and I want to be as honest and transparent as I can about those things too.


JANUARY

January Gain: After 3 years of debilitating and unexplained symptoms (as shared on blog posts in October 2015 and April/July 2016 ), it seems that we may finally have some answers. Last fall, a friend recommended seeing a dentist who specializes in TMJ disorders, who did an intial assessment and said she believed that I had some significant issues with my jaw, which could be the catalyst to all of the other problems I've been having.

Assessment and imaging confirmed that I have a degenerated condyle on my left side and a displaced condyle on my right (the condyle is the "hinge" of the jawbone where most of your movement originates for chewing, speaking, etc).

The bottom left image is of my right condyle.

The bottom right image is of my left condyle.
They should be the same size.

Over several years, these two little problem areas have likely caused so many of my chronic symptoms: migraines that radiated from behind my left eye, intense shoulder/face/neck pain, a bulging cervical disc, deep ear pain with vertigo and tinnitus, arm numbness, fatigue, bloodshot eyes, and brain fog.  I've been coping with at least one (usually more) of these symptoms every day since May 2015.

The most serious issue they discovered is that my jaw has receded so much that it's compressing my airway by 85-90%, which explains the severe obstructive sleep apnea that I've also been trying to manage for 4 years. (After showing me the imaging of my airway, the orthodontist said, "I honestly don't know how you are breathing right now.")

Airway imaging, side view

See the white funnel shape? That's the top of my airway. The top of the funnel is how wide the entire airway is supposed to be. Instead, it is more like a 4-lane highway merging down to just 1 lane. Or in my case, a 10-lane highway narrowing down to 1 lane. 

See the highlighted red and yellow area? That is where the airway is being compressed to a tenth of the size that it should be. (The orthodontist compared it to a garden hose with a sedan parked on top of it.) And that image was taken while standing up. The space gets even smaller when I lay down to sleep at night, hence the obstructive sleep apnea. My jaw is the obstruction cutting off the air supply.

Untreated severe sleep apnea is linked to shorter life expectancy and other serious health risks, so resolving this issue is by far the greatest long term need and can't be easily treated with less invasive methods. I was issued a night guard to wear for the next few months to hopefully alleviate some of my symptoms, prevent further damage, and confirm that the jaw is in fact the culprit for many of my issues.

We scheduled a consult for the spring to discuss further treatment options. Surgery was mentioned as a likely future step.

January (sort of) Loss: Honestly, January was a pretty great month. We had our last trip to Florida to visit Jason's parents in Orlando and to visit the Disney Parks together. They are making preparations to sell their house and move to Indiana so we can all be closer and enjoy their next season of retirement together. It was bittersweet for all of us to say goodbye to a place where Jason grew up and where we made so many memories with our kids when they were small. But we are all equally excited to being closer together in the future and sharing life together with all of the big and small moments.

Having a blast with Nane and Pop Pops

FEBRUARY

February Loss: I got a call from my dad on Feb. 16th saying that his friend was driving him to the VA emergency room. Three difficult days later, he was on life support and never woke up again. Those days with Dad in the ICU were equally precious and heartbreaking. The following weeks were a blur of communication, meeting family, processing medical and legal information and pursuing options, and much more than my heart can stand to relive and write down here. February ended under a shadow of grief, uncertainty, and exhaustion.

February Gain: Recognizing the value of family, especially my brothers who were co-advocates and caregivers through every decision, visit in the hospital, bureaucratic hoops to jump through, and email or text updates to other friends and family. My sweet husband worked from home for a month to help maintain stability and support for myself and the kids, fulfilling all of his other responsibilities at the same time. My mother in law flew up to help with the kids and their schooling while I went with my brother every day to the hospital to sit with Dad or work through the phone calls and stacks of paperwork and arrangements to be made. My sister in law kept the home front going with meals, chores, and general management of the crazy that a house full of sweet children who know their grandpa is dying can bring. Our aunt and uncle flew in from South Korea to support and stay with my mom during the days Dad was in the hospital. Many more people stepped in with meals, messages, financial support, prayers, and many more ways than I could even record here. It was overwhelming and beautiful and far more grace and love than I can ever repay.


MARCH

March Loss: On March 7th, Dad passed away. His ashes were buried in a beautiful spot at the top of a grassy knoll in Ft. Knox Veterans Cemetery. We had a moving ceremony with honors for him: a full Air Force Honor Guard and a 21 gun salute. I'll never forget that day for as long as I live.

We miss you, Dad.

March Gains: I was able to fully see how much my dad was loved, respected, appreciated, and missed by a lot of people. A LOT. It seemed like everywhere we went, people knew Dad and were heartbroken to hear that he was gone. So many people attended his visitation and funeral. He touched a lot of lives and took the time to really get to know the people around him. He was not a perfect man, but he tried his best to be hardworking, loyal, and an advocate for others even at great personal and physical expense to himself. I hope that I've inherited some of those qualities and can carry that part of him with me.

APRIL

April Gains: We gained some new and very weighty responsibilities. And survived a very, very hard month. For the sake of privacy, I will not share more but we deeply covet your prayers in the coming months and years to come. We desperately need them.

April Loss: We had to say goodbye to our old life and are learning to embrace the New Normal. The stress and exhaustion from the last couple of months have made managing my health and chronic pain a lot more challenging. So many friends and family have given so much support and encouragement, which was a lifeline during so many dark and stormy moments.


MAY

May Gains: Jason's parents sold their house in Florida and are now officially here! Logistics and house closings are still in process, but their presence has been a big encouragement to all of us. The kids are grateful to have grandparents close after a hard couple of months, which is sweet to witness. Betsy and I also celebrated their move by going to the Kentucky Oaks, thanks to a very generous friend who offered us tickets. Not a bad way to start this new season for them!

Fillies at the Oaks

May Loss: We had our TMJ consult to discuss the timeline for correcting my jaw issues. Orthognatic surgery (maxillomandibular advancement) is a must, and the sooner the better. That means 9 months of braces to align the teeth and prepare for surgery (which means 9 more months of persevering through pain, fatigue, vertigo, etc. before treatment). Then major jaw surgery in February to realign my right condyle and surgically move my upper and lower jaw forward 11mm to relieve the pressure on my airway. The changes in the jaw will alter my appearance after treatment, which feels a bit like another piece of my identity being chipped away in this long, long season of loss: loss of strength and health, loss of identity, loss of a father, loss of protective distance from loved ones who are not "safe," and at times loss of hope.

I am so thankful for answers, a clear timeline, and way forward after such a long season of uncertainty and frustration. I'm thankful for modern medicine that has found a treatment for my issues with a fairly high success rate and could help me regain some/much of my health over time. I'm thankful for the strength and support from a sovereign and caring God and others to persevere through another year of weakness and inconsistent health and level of ability day to day, and experiencing the great grace and strength of the Lord on my hardest days.

But I'm so weary. 2018 has sucked me dry in every way. And I'm just tired.

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I think many of us are walking through life holding both of these truths within ourselves: life is hard... sometimes unbearably hard... but God is faithful and present. And it's His faithfulness, presence, and steadfast love that sustains us in the hardest moments.

Every morning that we have here on earth is another opportunity to experience the gift of His renewed mercies, to get out of bed, and - by God's grace - to keep walking. In His strength. In His truth. In His great, great love.

Loving God and Father, give us the grace to remember and to keep walking.
Thank you for the grace to remember and to keep walking.


My soul is bereft of peace;
    I have forgotten what happiness is;
 so I say, “My endurance has perished;
    so has my hope from the Lord.”

 Remember my affliction and my wanderings,
    the wormwood and the gall!
 My soul continually remembers it
    and is bowed down within me.
 But this I call to mind,
    and therefore I have hope:

 The steadfast love of the Lord never ceases;
    his mercies never come to an end;
 they are new every morning;
    great is your faithfulness.
 “The Lord is my portion,” says my soul,
    “therefore I will hope in him.”

            - Lamentations 3:17-24

Good Things Come in Small Packages

First Day of School! First Day of School!

Welcome back, visitors - you are just in time to join us in celebrating the launch of our 6th year of homeschooling! SIXTH. Is this really happening?

I almost can't believe that G-Bug is starting her last year of elementary school today - amazing! She has grown and changed so much in the last year, and is literally growing up before my very eyes (now that she can almost look directly into mine while standing face to face). 

Truth is excited to be a third grader this year - he is relishing the fact that he is entering the threshold of "upper elementary school" and now feels the need to correct anyone who refers to him as a "little kid." In his eyes, he is on the cusp of manhood. And I can't deny it.

In other news, life outside of school is chugging along - my health is still a continual roller coaster, though answers are now slowly coming and I'm optimistic about the next year (fingers crossed and insert pleas for prayer here). The not knowing has been discouraging and burdensome, living in ambiguity and grasping for solutions without knowing the root causes. But God has continued to give daily sufficient grace, even on days when I feel incredibly fragile and weak in body and spirit. 

One way that I've been coping with my health struggles and connecting with G-Bug has been crafting miniature foods, furniture, and other accessories for her American Girl (and other 18 inch sized) dolls. It began about two years ago when we built a French kitchen/bakery for her AG doll Grace Thomas (her character runs a French bakery with her grandparents). We challenged ourselves to come up with a homemade (and FAR less expensive) version of Grace's patisserie using cardboard, craft foam, clay, and paint. 

G-Bug and Grace love it!

I found the process of watching YouTube videos and shaping, cutting, and painting the pieces to be therapeudic and fun, and it allowed me to be creative without aggravating my health. Since then, every few months G-Bug and I have challenged ourselves by creating various pieces and rooms for her growing family of dolls. 

 School is in session

Even her brother Truth regularly joins in, grabbing his stuffies and trying out the sets for himself.

Lynx in a bathtub = ridiculously cute

Now two years later, this little hobby of ours has become a small side business! In the last week, we have started making and selling little doll sets at a local artisan shop and on Etsy.  G-Bug, co-creator of MiniMaples, is channeling her entrepreneurial spirit into offering ideas for new doll sets and marketing strategies (and many of them are brilliant, I must admit).

We can't wait to get these miniature sets into the hands of children and adults to encourage bonding and creativity through imaginative play!

MiniMaples display at 

Treehouse Artisans and Merchants in Louisville, KY

I can't wait to see what the future holds as we begin this little adventure. 

Spring

Small glimpses of spring are all around, and it's making us all feel a little giddy.

Hello, strawberry plant. We both survived winter, I see.

It's been a long winter in so many ways, folks. I shared back in October about how tough the last year has been. Now it's April - a new year, and the difficult season of weakness still lingers. I know that I've been largely silent about my own health - and just silent in general - partly because I haven't received clear answers, partly because it's just too hard to write at all when battling pain, fatigue, and brain fog, and partly because I didn't want my blog to become a gloom fest.

But I want to try to give an honest (and hopefully brief) update, and then will finish with a list of blessings that have grown out of these last few months.

While receiving treatment for a bulging disc this summer, I began experiencing other symptoms: deep bouts of fatigue, weakness, dizziness, chronic pain in my joints and muscles, numbness in my arms, and debilitating migraines. I couldn't drive for weeks at a time, and every small task seemed insurmountable. (Most of these struggles still exist months later.)

wearing the "Cone of Shame"

Since last May, I've been seen by four six doctors, two nurse practitioners, two physical therapists, and a massage therapist. We've tried strong medications, spine injections, numerous MRIs, bone scans, and blood tests. No clear cause could be identified, no treatments have cured any symptoms, and answers have been few and far between.

During the worst months this winter, I could barely get out of bed and care for myself, much less my family. Jason bore the weight of the chores and of our family's needs for many months. I really can't emphasize enough how kind, patient, and hardworking he has been.

School time has mainly consisted of reading, writing, and 'rithmetic. On many days, I've had to teach lying on the couch or the floor, praying with tears for strength and to get through each lesson or math/spelling concept. I struggled with guilt that my kids weren't having a rich learning experience. And for the first time in the four years of homeschooling, I wondered if I should give up.

In February, I was so desperate for any relief that I made some radical changes in my diet (primarily eliminating gluten, dairy, sugar, and processed foods while adding bone broths, fermented foods, grass fed/pastured beef and eggs, and an obscene amount of organic vegetables). It seemed to be helping to lessen some of the worst symptoms. Within a few weeks, I started feeling a slow shift in my body - I still experienced pain, fatigue, and numbness but didn't feel as "ill" as I had been feeling.

Zoodles are tastier than I thought!

I was finally diagnosed in March with fibromyalgia. I've begun another medication to help dull the nerve pain/inflammation and have started another round of physical therapy. Praise God, my new PT was able to identify that I am also experiencing vertigo, and I have daily exercises that will hopefully lead to actual recovery.  Please, God - let it be so. It's been a long, long winter.

***

I started to write this blog post back in April after I'd had several good days in a row. I had begun to think that we had finally figured out the right combination of exercises, diet, and medications to help me get back to "normal."

Now it is almost August. Overall, I am having more good days, which is encouraging! Physical therapy helped me learn to manage my vertigo and pain better, but did not cure either one. (My driving is still limited to a few miles from home.) Massage therapy has made the most difference in pain management and treating inflammation, but medication was completely ineffective. I still have to be very careful about my diet, stress levels, and activities or else I start regressing quickly. Every day is still a battle of the mind, body, and spirit.

Laughter is definitely the best medicine

As promised, here is the list of some of the blessings that have been born out of this season!

Personal Blessings from the Last Year of Weakness:

1) God has used this prolonged season of weakness to help me see how much I relied on what I did/accomplished for my sense of identity. It's been a real struggle to come to terms with this, to repent of my pride, and to realign myself with my True Identity: the adopted child of the Living God, who saved me and covers me with the righteousness of Christ. That is all, and that is enough.

"All I Have is Christ"

2) By the grace of God, He is slowly teaching me that today I must live according to the strength that He has provided, and pray that He use me in my weakness to fulfill His good purposes. These words from Paul are a continual encouragement, and my understanding of this passage has deepened in the last year:

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. - 2 Corinthians 12:9-10

3) I have had to learn that I am not everyone's savior. Only God can be that. Though I am called to love and serve others to the best of my ability, I am not necessarily called to serve beyond what I am physically able to do. By setting boundaries and using wisdom and discernment, I am trusting that God is bigger than myself, that I am not always the best person to meet a particular need. I have to act on the truth He has plans that are greater than I can handle, and sometimes my role is to pray, encourage others to serve, and simply watch and wonder at His work through others.

4) Our family has received an incredible amount of support, encouragement, prayers, service, cards, and grace over the last year. My respect and gratitude for our friends, family, and church family can't be measured. It has been very humbling to receive so much and have so little to give in return.

Homeschool Blessings from the Last Year of Weakness:

1) As much as I worried about our kids' educational progress during this Year of Yuck, after reviewing the academic standards for our state we breathed a sigh of relief. Somehow, we managed to finish on target in nearly every subject. Miraculous!

2) A small unexpected blessing that came out of more unstructured/free learning is that both children have used that time to pursue their own passions and interests with more focus (and obsession, ha ha). Truth has spent a lot of his extra time creating original Lego designs, asking questions and watching videos about energy and mechanics, and playing with Snap Circuits and robotic sets that were handed down to us. He told us toward the end of the school year that he wants to be an engineer when he grows up!

 

Truth's version of the Millenium Falcon

He's a teeny bit obsessed

G-bug has also stayed busy listening to hours of audio books by Lewis, Tolkien, and Dahl, which has greatly improved her listening skills, comprehension, and oral communication. She has organized puppet shows and plays, written letters to friends and family, and kept research journals to organize facts learned while reading stacks of Magic Tree House books. She's also rediscovered her love of nature and astronomy, exploring our back yard and amazing us with facts about insects and space exploration. We've wondered together at the diversity and intricate nature of the food web in different climates, and tested our knowledge while playing the Planet Earth game again and again. We spent a week reading books about Mars rovers, the planets, and watched the movie Hubble. Together we wondered at the unimaginable size of the universe.

Lego construction of the Mars rover testing

 Good turnout to watch the terrain testing

Compare to photo of actual testing for comparison

Photo Source

3) The kids have continued to grow in their ability to help with tasks and chores for Mom, and to take ownership of their own learning. They gather their own supplies, help keep track of what lessons need to be completed for the week, and are learning that they must be self-motivated to complete a task since Mom often isn't strong enough to will them to finish everything. (They have also learned that the consequences of not staying focused are longer school days, while finishing quickly allows for more free learning time!) 

4) I have learned that school doesn't have to be Pinterest-worthy or blog-worthy to be beneficial or worth celebrating. I don't have to have it all together to be a good teacher. And honestly if we survived (and thrived) through the year we've just had, then I think our family, our kids, and their education will be just fine.

Please continue to pray for us, as we are in the midst of some more big changes (I'll save that for another post, this one is ridiculously long already). And thanks for following our family's adventures and misadventures! May God be glorified in all of it.

Hard Seasons and Grace that is Sufficient

Hellooo, October! I can't believe we are two months shy of saying goodbye to this year.

To be honest, 2015 has not been very kind to us, so I'm not sorry to see it go. In the spirit of truthfulness and transparency, I'd like to share some highlights (and low points) this year has brought, with as little self-pity or complaining as possible.*

*Unless self-pity will warrant free pints of ice cream delivered to my door. In which case I will begin my own rendition of "All By Myself" by Celine Dion immediately. Not really. I would need way more incentive to go Celine Dion on you.

Disclaimer #1: There are so many people out there with far greater, weightier, and more devastating stuff in their lives right now.  My heart is with you all, and so are my prayers. 

Disclaimer #2: With all of the crappy stuff that has happened, there has been just as much reason to be thankful, to rejoice, and to have hope. This post isn't a cry for help - I just wanted to share more openly, ask for prayer, and to thank our friends/family who have helped us so much this year.

And with that, here we go...

The Hard Things

In June, Truth had corrective surgery on his legs, and he was a champ through the entire process: struggling through his post-op pain that almost broke my heart; learning to get around in a wheelchair and was determined to be as independent as possible; not being allowed to run/jump/climb/swim for an entire summer - torture! Truth's bravery amazed us, and his recovery even more so.  

Slushies and Legos are the best cure after surgery

The cuteness. I mean, REALLY.

We were blessed beyond measure by friends, family, and our past and present church families - we honestly couldn't have made it through without so much prayer, encouragement, cards/gifts, meals, babysitting, etc. Thank you all SO much.

Legos and letters! Huzzah!

Two weeks before Truth's surgery, I herniated a disc in my neck. The pain was almost unbearable, and my arms started experiencing numbness/tinging/burning which was alarming. I began physical therapy and at first it seemed like it was slowly healing.

Then in mid-July, all of the pain and numbness came back and I also started having horrible tension headaches (probably due to another nerve being aggravated). PT was suspended, and epidural shots and nerve medication were ordered. Neither treatment has made any real significant difference, and no other alternatives have been suggested besides - possibly - surgery. Over four months later, I'm still battling pain (and discouragement) daily as we wait for more answers.

The Thankful Things

Despite this, God in His great mercy has given enough strength to continue having a rich learning experience at home! We celebrate our moments of fun and share them with family and friends, and they spur us on to keep going.

We have also enjoyed having a third part-time preK student H-man at Four Maples, and it has been such a blessing! There is just something about having a preschooler in the mix that keeps things fun.

Edible globes? Yes please!

G-bug and Truth have become extremely helpful with household chores like laundry and vacuuming, and have taken on more independent learning as they are able. G-bug has even learned how to cook simple meals (her egg scrambling and pancake flipping skills are pretty awesome). 

Jason has been a rock star through all of this. He (literally) bore the weight of Emmett's recovery this summer, and emotionally and physically cared for me on bad days (he still does). He has taken on most of the household tasks, and even painted our living room.  All while beginning a new position at work, and doing an amazing job there.

And he has done all of these things with so much love, patience, and perseverance. Jason embodies the hands and feet of Christ to our family, and he does it with little thought of himself or with any expectation of being recognized for being awesome. I love him more than words can say. 

Handsome Hardworking Hubby

The Lessons Learned

I have had to grow in being more comfortable with letting go of non-essential things, and choosing thankfulness for the ability to accomplish even small tasks. Our Flat Stanley Project is mostly on hiatus, and field trips are rare. I can't unload a dishwasher or carry a full laundry basket by myself, or clean the bathroom. By God's grace I am learning to be at peace with that.

I am relearning to trust that God gives grace and ability to accomplish His will for today, no more or less. If I physically can't do something, then I wasn't meant to accomplish it, and I must ask for help.

I have also had to learn to admit to friends when I am hurting, sad, tired, frustrated, or discouraged. 

(Did I mention that I have some of the most loving, encouraging, caring, gracious, and hilarious friends on the planet? Well, I DO. Their prayers, words of grace and truth, surprise meals, desserts, and memes/jokes have made the last few months bearable, and even awesome.)

This is the kind of encouragement I'm talking about. 

Thanks a LOT, Kathy. :)

How You Can Pray

We do have some more challenges ahead and would love your prayers:

Truth's second (and last) surgery will be scheduled in November to remove the plates in his legs, which means another month or so of recovery afterward. Please pray for peace and courage for our little Truth, and for us as well.

We are making some big decisions with my injury, possibly changing doctors and treatment method. We need wisdom in navigating the system and choosing the right medical team to actually find a cure and begin the path to real healing and relief.

G-bug has been having more struggles with anxiety, sensory issues, and (she would say) learning the cursed multiplication/division. We are considering the idea of beginning another round of IM therapy and regular pool/swim time soon which greatly helped her in the past, but that takes more physical effort and investment than we can give now. Finding healing and relief for myself will allow more effort/attention for her needs - another reason to pray!

Thank You

Thank you, friends and family, for all of your support, prayers, encouragement, and grace toward us in this year. Thank you for being understanding that we are still in survival mode and likely will continue to be so for the next few months.

Thanks be to God for His infinite love, His daily sufficient grace, and His strength that is made perfect in our weakness.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10 That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 
- Paul the Apostle (2 Corinthians 12:9-10)

Let's walk together this week in grace and gratitude!


Update January 14, 2016:

1) Goodbye, 2015! 

2) Emmett had his second surgery on January 4th, and is recovering well at home. He goes back for his follow up appointment with the surgeon in 2.5 weeks to get the all clear and we can hopefully put all of this behind us. So thankful!

3) My health is still very much impaired, but we have several more appointments and tests scheduled this month which will hopefully bring more clarity. I'm counting my "spoons" carefully each day and adjusting to living within wise limits. God is still carrying me through each day, each task, each choice to trust Him and not in my own strength (or lack thereof).

4) We are still chugging along with school, and are overall staying on target for the year! We're mainly focusing on the essentials, but are still finding ways to have fun. I'm hoping that next year we can add other activities back in slowly (like a weekly co-op group), but it just depends on how we are all doing in the fall. 

5) Thanks so much for your prayers, meals, notes, babysitting, and encouragements - we have greatly benefited from them!

My current laptop background image

to help budget energy to get through the day