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
