So what do we do when we arrive at a place in our lives or a moment that we never expected nor thought was possible? Do we become angry, sad, frustrated, or disappointed? Do we respond with joy? Do we lean in on the Lord and rely more on him than ever before?

I realized today that I am there. I’m standing with a big U for the unknown in front of me as my future and see no direct paths. I have been “surviving” every day for over a year. I have gone through some of the most physically painful and awful things that I never even began to think would be part of my story. How could this be it? How is this the path He has chosen for me? How is this the life he promised me when I saw visions of my future in my twenties?

Have you arrived at this place in your life? I’m not just in it….I’m like stuck in the mud; holy cow, stuck in it. I’ve been fighting Leukemia for over a year. I thought I had it beat. I had a Stemcell transplant last august 2020 just to relapse in January 2021. I have been hospitalized for more days than I care to count. I practically work at MD Anderson as I’m at the clinic every other day. 3 months ago, I had THAT conversation with my doctor about whether I would continue to fight or go home on hospice. I spoke of what I would want my funeral to feel and look like with my husband.

I contemplated starting birthday letters for my kids to mark each celebratory milestone they would achieve without me. But each time I wind down these paths, I become aware of walking with my head held down instead of focusing. I realize that I’m allowing my current circumstances to dictate how I see the world. I forget to look up. I fail to search and see the blessings right in front of me. My eyes begin to focus on the water surrounding me, and I lose sight of the blessings coming in the days ahead. Although it is not how I might have wanted it, my husband is home daily with our kids and caring for me. His sole purpose in this moment of life is caring for and loving on our family. He is now free to do this and not worry or feel guilty about not devoting himself 100% to either us or his job. We may never get these precious days with him home all the time ever again. He has such peace about the transition and just fully leans in that God will provide while I sit and survey all the ways I’m costing us money. How do we accept what we can’t understand or fathom? We accept because we know at our core that God is still God, and He is still good.

I sit and survey the landscape at the clinic all the time. So often, I retreat into the headspace that everyone around me is just trying to slow death down by 1 more day. We are all just fighting a ginormous uphill battle for what end or purpose. If I was 75, would I be fighting this fight? Would I be putting this effort forth to expand my story by a few more pages? And I think the answer lies in the question. Are we living for ourselves or relying on a God who knows intimately what our pages read? Even when all seems lost, God sits with the candle, lighting our next step.

When I’m at my lowest and my hope is wearing thin, I reflect on the remarkable moments I have seen in this past year of gifted life.

The moment I was diagnosed – I was not alone with doctors and nurses I didn’t know – I was with my work family. People I had poured into for the last 6 years of my life. People who had watched me grow and stood by me as I walked through life.

The moments during my first chemo experience when my husband stood for me when I couldn’t stand. And laughed for me when I couldn’t laugh. He could sense me sinking into my deep dark places and he reached down to pull me out of it and reminded me of the God that placed us together.

The moments of community literally swallowed my family in love. Seeing the body of Christ – the hands and feet of Jesus scoop up my precious family and carry us across the raging seas that life had thrown at us.

The moments of my life with Steve (my dad) as we got so many precious hours together. Seeing me go into remission, being almost killed through chemo, and then receiving literally new life as a gift from someone in America who I will hope to know one day. His time inpatient with me in our hospital dorm room, where I battled some of the hardest things in my young life and mind had ever seen.

The moment I walked out of the hospital to see my husband and my kids, who had moved across the country to be with me and support me. Holding my babies at night. Singing them to sleep after months of being separated from them or trying to sing over the phone. Feeling the grief and depression slowly lift as my heart filled back in with the tiny voices of my children.

The moment I arrived home in Niceville back in the home I knew and missed with family and love of community. Only to feel in my gut that something wasn’t quite right and relapse a few months later.

The moment I was alone and was told I had relapsed. The outcry and pouring to God about how He could give me hope only to feel it stripped from my hands. Yelling out loud, why?! Why?! Only to feel his comforting presence fill my soul again and again.

The moment I was walking down the hall as I received my first round of chemo post-relapse. I audibly heard God speak that My children would be ok, that my husband would be ok and that I would be healed.

The moment I prayed and walked the halls of the children’s hospital as I received my chemo. I prayed for the parents and children receiving new life, only to have my nephew fighting for his life in the same hall 1 week later.

The moment My physician was unsure if there was anything left to do. Only to find a new trial and plan the next day that granted me new excitement and expectation and more days here on earth with my family.

The moment my best friend in this cancer world saw Jesus and was fully healed, my heart was so heavy. Then Jesus gave me a vision of her giant smile dancing freely in the presence of the Lord in the golden streets of heaven.

Every moment I look at my husband, the love of my life, and thank God for placing such a beautiful, selfless, God-seeking, strong human to walk alongside me in this life. The stories he and I share. The life we have created. The people we have met and lived life alongside. The beauty of our story and the redemption we both have seen throughout our short time here on earth.

I’m reminded that we all have a big U in our path. Every day is a gift. Every day we should be living with a purpose, with joy, and with a feeling of peace because Jesus died so that we will have new life. If I wake up tomorrow standing face to face with God, I know I’ve achieved ultimate healing, and I’ll be embraced by two giant arms.

When you stand at the pathway not understanding or knowing why you are there or how God could place you there- Look around you at the goodness you can touch and feel and then look up. Your eyes will see Jesus and not the uncharted seas you are walking on or the thin windy path you are navigating. Your eyes will be focused on the one thing that brings continual hope and joy. Your eyes will stay focused on Him. Your steps will not be uneasy or unknown. Because you are communicating with the one who already wrote your story, that knows your most intimate being and wants to carry your burden. Thank you, Jesus.

Kaet-7/30/2021

Reading back over this made me realize the daily choice to find Joy no matter the circumstance. Some days are easier and some days are harder, but there is always something, someone, or someplace where Joy can be found. Today, choose Joy. Take time to remember all the ways and things that God has done to provide you with unshakeable internal Joy that cannot be taken from you.

There are so many days when joy was and is in some dark, dark corner. My diagnosis was a shock but not altogether unknown. The week before I was diagnosed, I told my sister something was wrong and asked, “what if I have cancer….”. God was preparing me somehow for a journey I never saw coming.
1 month before my diagnosis, I saw a rheumatologist because of my “weird” symptoms and extra fatigue….he plainly told me that it was not rheumatological. Which it wasn’t, but he did no labs….he focused instead in amazement at how difficult my life is and that my feelings were a byproduct of that. No one was hearing me, something was off, and it wasn’t me emotionally not handling the stress in my life. It was not an ongoing pandemic, it was not homeschooling my 4 children, it was not grieving the everyday losses my sweet Hattie won’t experience due to her genetic disorder…something was wrong. God again was preparing my heart.

On May 21,2020, in my home ER – my attending and fellow PA diagnosed me with cancer with tears in their eyes. I looked at them and told them it would be ok. I would be strong and would fight. God held me when I could not hold myself. Due to covid, I had to be alone. I had to tell my husband, my father….on the phone…I had Leukemia (a blood cancer) and would not be coming home. Those initial days were a blur. Floods of comfort came pouring in, but I was numb. Those in the medical field know what it means to flip the switch, to compartmentalize our life so we can bear to take another step forward when we see and feel some of the hardest things. When the grief and heartbreak we have for our patients and their families are too deep to bear. I turned it on quick. I couldn’t allow the heaviness of what I was going through truly sink in. I had to be tough and fight this. If you know me, you know I HATE needles…I soon learned how to mentally break through them because there was soooo much pain. For the first time, I faced death. Jesus was closer than ever. I felt, at times, like death was slowly creeping in. Darkness was there; I could touch it. Real Depression was within my grasp. I went to sleep without a promise of tomorrow; fear was knocking. If God was always good, why was I here in this place….on the most challenging days, the WHY questions were the heavy hitters. Singing my kids to sleep on the phone as I fought back the tears and fears. One day I was there, and the next day I was gone.
Chemo – the paperwork alone is terrifying – a lifesaving poison that would kill off my bad cells in the hope I would grow new healthy ones. 3 weeks in a hospital, hoping and praying. Alone but with a colossal Army praying. Fighting to keep my life and my JOY. I couldn’t even listen to music for a period of time. Music is an outlet that I feel so deeply; listening to it meant I would have to feel…I would have to step into the depth of pain my heart was feeling, and I couldn’t do it. It was like feeling yourself falling but unsure if you would ever stop falling. I couldn’t breathe, let alone sing. My nurses were life when James couldn’t be with me because our kids also needed him. They came in and held me together. My oncology nurses were the glue that kept me from falling completely apart. They were the heart; they were the song. They took the step for me. They laughed and cried with me. During my first biopsy and days when the pain was so much, I barely was conscious there was Chaina – praying over me when I had no words- Singing over me. Bringing joy when I felt sadness. Then there was Tiffany – at night, she would be so quiet I would actually sleep, or on nights when I couldn’t sleep, she laughed with me and comforted me when I was alone. Before I left for MD, she gave me the most beautiful bracelet. I held it through my next round of chemo and missed her at night when there was nothing but noise.
Then there was Ms. Charlotte – she was so soft and gentle – like the hands of Jesus reminding me that it would be ok. I was not alone – there were bigger plans for my life. This was not the end but just the next path.
The day that I received the news that the chemo hadn’t worked, James wasn’t there yet. I was alone. Receiving that news was like a train hitting me. I couldn’t stand up. My Leukemia was aggressive; it would not be easily fought. But then there was Carolla, the nurse that hugged me tight and held me when I couldn’t hold myself. She fought for me. She stood in the gap and helped bring me what I needed most. My family. My world. My reason for fighting. She brought me a cappuccino and ginger snaps on Sunday. She was so gentle and kind. She reminded me of a life outside of the hospital’s 4 walls. I can never thank them enough – they helped me believe I had a chance when I thought nothing was left.

Jesus. He is in all things and works through people when they may not even realize it.

Kaet-7/27/2021

Around this time last year, life sped up even more rapidly than before. Unfortunately, we had just discovered that the CAR T Cell treatment Kaet was receiving had failed, and our options were becoming limited. Kaet came home from her inpatient stay at that time and said she wanted to go home. So, God moved mountains and put the perfect people that we love dearly in our lives at the perfect time. Within 48 hrs, we had a private flight home to spend our last Halloween together as a family, in Niceville. All that to say, below are some thoughts and revelations from Kaet that she was never able to share. We all go through a season of “why,” and I may be biased, but these words are a Godsend, and these words are the words of God, spoken through Kaet during an incredibly challenging time.

The Sea of “Why”

There is no deeper pain in my life than the pain of walking away from my husband and children back into the hospital for another week, day, or month without them. I thought after I was diagnosed that this action might get easier….that this door would be less hard to close…that this burden would somehow be lighter. Still, I realize that my heart is with my family. My best friend and soulmate is with these beautiful tiny blessings that are such a massive part of my heart. And I have difficulty not sinking deeply into the uncharted seas of why. Cancer may not be your why, but some other loss, grief, and the struggle of this broken world might be your why-me moment. So how do we navigate back out of the turbulent “why” sea and back to the peaceful shores and shallows of our ever-loving and good God? One word for me, Jesus.

His goodness and kindness never change. Throughout His life on earth, he knew His why me moment intimately but still fought for us. He was the calm and shelter for so many and continues to be through the peaceful love story he gave us through his written word. Jesus paid that ultimate sacrifice for our sins when He absolutely did not deserve any bit of it. He took on suffering so that we, at the end of our life, can walk into perfection in Heaven. Our suffering here on earth has a reason because Jesus suffered it all. When I begin to turn this cancer life into something about me, I’m quickly reminded that we aren’t called to live a selfish life but a selfless life. It is not all about me in this moment. God has promised me that my children’s hearts will be looked after. Jesus has continued to strengthen James and our marriage beyond what we knew was possible in this life before Heaven. He has repeatedly shown us how to navigate OUT of the turbulent “why” sea, and this is what He continues to show us.
 
When we are at our most hurt and feel like the next step forward is too painful, God is still Good and always fighting for us.

When doubting our ability to make it another month, God’s written promises to us that healing is coming if we continue to cling to our faith.

When we have lost our identity in the everchanging life of living with a disabling disease, including losing our jobs, our identity is in Christ alone.

When finances weigh heavily over us, and we are like the disciples in the storm, frightened by the waves and rain, God is our provider – he is our Abba father.

When we see others desperately hurting around us and begin to look at the world through the painful lens the world loves to portray, God’s lenses are full of light and hope.

The turbulent and dark waters that lie for those who get caught up in the “whys” of life are unbearable. It will hold you down, rip your sails apart, turn you in never-ending circles, and hold you in the depth of despair. Because that is where satan wants Christ’s followers to be. If we are wounded, blinded, swirling around, unable to find our bearing, we are lost to the cause and speaking to who God really is.
But Jesus is standing on the shore, shining in the sky, singing on the wind, ready to navigate us into the peaceful eye of the storm or the beautiful, gentle coastline where we can find rest. He is asking us to keep our eyes on Him. He is asking us to not try and understand the ways of the deep “why” sea because it is broken and treacherous and will explain nothing. He is asking for us to rest in Him and trust He is good and good days are coming.

Kaet-10/10/2021

When

An article title in my medical email box caught my eye today. It read “Mental illness the ‘inevitable’ next pandemic? “and it resonated with me so deeply.  Does it resonate with you? Why?  Maybe you deal with mental illness in yourself, your family member, your friend, your spouse, your child.  It is an area that is often taboo to speak of…yet it touches us all.

From someone who deals with anxiety, it is NOT easy to manage the onslaught of emotions this time has brought.  I am a type 1 enneagram stuck in a house full of 7s and another 1.  I am refueled by having ALONE time and I am NEVER alone – I don’t even know what alone feels like.  My husband literally keeps asking me what I’m thinking or doing every second of the day because he just needs communication.  Then he will dive into deep thinking, asking what my thoughts are on the next 5 years of my life (He’s a dreamer).  I literally am thinking about 15 different things per second…. My web browser has so many popups, its popups have popups with diagrams.  I laugh out loud writing this because I know so many can relate.  We love our spouse because they are our opposite but in quarantine the opposite who we love is driving us NUTS.  Then there’s the kids.  Kids are everywhere.  I can’t shower, go to the bathroom, breathe without being touched…. little gross sticky hands.  They haven’t left the house in weeks beside going for a drive in the van…they don’t get it.  One loves distance learning the other is getting bored with it and told me the teacher doesn’t do enough arts and crafts…lol literally me.  I’m growing a garden….and gardening….and gardening…. then laminating…then pinteresting to laminate some more…. something, anything to keep my mind occupied on something besides the mounting anxiety that is building inside of me.

I have mentioned before that since Hattie’s pregnancy and birth –the level of my anxiety that had only initially emerged in small spurts during stressful times in the past has become a daily battle.  Mental health will be the next wave that impacts us all.  People who struggle with feeling isolated are literally being forced into isolation.  People who have addictions are now being forced onto social media platforms where they could potentially be triggered.  We all are grieving the “loss of normalcy” for our day to day lives including loss of our weddings, family trips, graduations, births of children/grandchildren/nieces and nephews – not to mention loss of loved ones.  We are all separated.  Walking in the grocery store I spoke to ONE person – my goal was to get in, get out and get close to NO ONE.  How can this be entuned with any part of human nature.  We are built with a need for community.  Community and connections are what gets us through our daily walk.   It may be who keeps us accountable to our addictions and it for the safety of all is currently furloughed.  So, with all of this shifting and change, how are you managing mentally?

My enneagram 1 (The Reformer) self is in overdrive. I’m imposing rules on rules and schedules upon schedules. If you have never heard of enneagram types – Type 1 the Reformer is explained as Principled, Purposeful, Self-Controlled, and Perfectionistic.  And we DON’T like change or to have to “be flexible.”  Which is hilarious because I’m married to a type 7 (The Enthusiast) The Busy, Variety-Seeking Type: Spontaneous, Versatile, Acquisitive, and Scattered.  When we are a healthy team, we work and complement each other greatly.  He inspires me, I keep in steady but under stress we tend to energize the negatives in one another.  It is an ACTIVE job right now to tap into each other and prioritize REAL communication/relationship. 

I’m up all night working or up all night thinking about what homeschool craft I can do this week.  I haven’t worked out in 3 weeks – not because I don’t want to but because literally is 24-7 all hands-on deck with our kids.  I have a crazy 2-year-old who is all about being in and on everything.  Hattie doesn’t understand why her daddy is home but not fully paying attention to her. Hattie is also A LOT. She is fully reliant on James and me to do everything for her, all day without breaks (since she conveniently is refusing naps).  My body is physically sore from being her person 24-7.  I consistently argue with myself about whether I am doing ALL the right things for everyone…am I missing some opportunity for Hattie…am I spreading all my attention equally between all 4 kids and my husband.  I literally one day had to stop and ask if I had actually spoken words to Ryder instead of just yelling at him all day.  And this is just my daily mom life struggle.  I can’t imagine those who deal with addictions and true depression.  This is weird and this is hard.  Feeling sadness is ok but when is sadness too much, when do we recognize that the sadness is consuming us, and we need to find help.

One warning sign for me that my anxiety has become in control of me rather than me controlling it is my sleep patterns.  Yes, I work nights and Yes, I often use that as an excuse, but you know it if you’ve lived it.  You sit at night in your bed, feeling panicked at the time on the clock.  12am…. then 1am…oh gosh why am I not asleep, the kids are going to be up at 6:00am how will I function…crap now its 2am….3am…. the feeling in your chest when you know you need to sleep but can’t.  It’s maddening.  You’re tired all the time, but sleep won’t come.  When I get in this pattern, I know a check is needed.  I have my people and I have to check in.  My husband knows when my sleep gets crazy, I get a little crazy.  He is never harsh though which is so important but genuinely checks on me.  Let’s me know He understands but doesn’t correct me.  Doesn’t try to “fix” me by offering suggestions – He acknowledges the anxiety is there and its ok and that he’s with me.  For me that works, but not for everyone and that is ok.  Find your program, Prescribed medications, holistic therapies, counseling, community online groups – Get a plan, know your plan and acknowledge when you need it.

Mental health is important.

Let me say that again…Mental health is important. 

It impacts our whole body.  It is the center of our body’s communication to itself.  When in a negative place, it lowers our immunity, releases stress endorphins and can physically cause use to “Feel sick.”  Self-care and acknowledging when our mental health is subpar is SUPER important and in this time of isolation IS A PRIORITY. We need to make ourselves available for one another and even more entuned to one another.

>Example:  Today James was just on edge – instead of being negative about it or harsh about it (I do the harsh thing REAL well before coffee), I asked him how I could help him feel better because I know how challenging this time is for him.  In the morning, it was him getting to shower and have his morning routine.  In the afternoon it was me allowing him to “take me to lunch” on a van date with our kids and then doing yardwork uninterrupted in the afternoon.  Seems trivial but was crucial.

For Isla – It’s doing artwork, dancing and watching a movie on the couch.

For Laken – It’s expending energy, doing some physical activity and exploring.

For Hattie – It’s eating what she wants (Including sweets sometimes), being held by dad and holding a backpack.

For Ryder – It’s snuggling, letting him sit on me, reading him a book, putting him to bed and rubbing his head….and eating ANYTHING.

Know your people.  Don’t be trapped in your own head so much that you create a tidal wave around you that you can’t see.  Take care of your mind.  Learn your warning signals.  Establish healthy boundaries.  Restrict yourself from certain negative things if it’s a trigger.  Love your people – We will all get through this TOGETHER. (but also, 6ft apart)

Peace,

Kaet

Fear.  Earlier this week I proposed the question, “Is there a difference between living in fear and living with Caution?” And honestly, to my surprise, there was a lot of feedback, which prompted me to go a little further with that thought.  You see, I’ve always felt that I have lived a pretty fearless life. I’m always the first to jump off something tall. I’m never afraid to try something new and the way I do nearly everything in my life from sports to general day to day could easily be described as fearless, from the outside looking in.  To take my fearlessness a little farther, I don’t get flu shots and never respond when I get sick, call it pride, confidence, or stupidity but I just have this idea that even if I get sick, it won’t kill me, I’ll be fine.  Now, let me address the elephant in the room, “Hello Corona”.  

This feels incredibly different, and honestly if my wife wasn’t at the front lines of this crap, and I didn’t have 2 kids that are vulnerable to this, I would probably be one of the inconsiderate/ignorant people out there complaining about everyone being fearful and over the top in their prevention and protection (this is definitely a me centered response).  BUT, I get the rare and fortunate/unfortunate chance to see/hear all the behind the scenes (as far as HIPPA will allow, hah), and I get to see and hear stories of amazing men and women who are putting on their white coats, scrubs or badges to go fight a battle that no one can see or ever have anticipated, we weren’t prepared for this, but in our defense, how could we have been?  

These Doctors, Physician Assistants, Nurses, and so on, didn’t go to school to learn how to fight a medical war, but here they are, fighting. They may be terrified, but you would never know it. They have kids, but you won’t hear theymcomplain while they treat the sickest of the sick.  They will freaking gurd up, push their hair back, and go to freaking work.  Not only are they figuring out how to handle and fight Corona, but at the same time they are sewing up kids who fell off their bike, they are taking care of people in car wrecks, dealing with reckless spring break college students and then in addition are taking care of people in deep dark depressions who don’t believe they deserve to be here anymore. They will counsel, and they will heal. They will do whatever they have to do, to protect and save the stranger sitting right in front of them.  YOU see, just like so many of us, their job doesn’t stop because of Corona, it just gets harder and more high risk.  These incredible men and women will be and ARE the difference.  If you can’t tell, I’m crazy proud of my wife and the team she gets to serve with.

All of that to say, yea, I’m fearful and maybe you are too, but my fear will not cripple me and I will look to God and the men and women fighting this thing as an inspiration.  I will follow their lead, if they tell me to stay home, I will.  If they tell me to wash my hands, I will.  It’s out sheer respect or maybe fear, that I will follow them.  One of the greatest traits of having great wisdom is to trust the wisdom of the ones who know more than we do.  I’m not saying I have great wisdom, but I want to, so I’ll trust the wise. 

Maybe all this gives us the perfect example of how to handle fear, what does fearing God look like, but not fearing anything else.   To end, here is how John Piper describes fearing God, and I think it’s perfect -Don’t Run from Fear

Don’t Run from Fear – Now here are two pictures… I went to visit a man named Dick Teegan, with Karsten when he was six. He had a dog at the door when we opened the door, and he looked Karsten eyeball to eyeball. This is a giant dog. And I sent Karsten back to the car to grab something that we had forgotten, and the dog went loping up behind the six-year-old at his very height with a little low growl, and Karsten was terrified. And Dick leaned out the door and shouted to Karsten, my six-year-old, “Karsten, maybe you better not run. He doesn’t like it when people run away from him.”

And I thought, “That is going in the sermon this Sunday.” Just walk beside him. You can even put your hand around his neck, you know? God is horrifically dangerous to run away from, and we should be terrified to run away from God, but if we will stay with him, his growl is a growl of our protection, not our destruction. And we can put our arm around his big neck, I guess, to change the imagery.

I love y’all, and take some time to tell a medical professional you love them and are thankful for them today.

I have been having writers block for the last few weeks but something landed in my email that I couldn’t help but ask if I could use. Its from a guest author this week, Steve Hall – also known as My dad – He’s the best and I might have inherited some of my writing from him…probably most of it. But its a treasure to get to share this blessing with you all. I’ll be back Friday with another great blog for you!

HUMILITY 101 – The Company We Keep – Part 2 – The Backpack

“Then the King will say to those on his right, ‘Enter, you who are blessed by my Father! Take what’s coming to you in this kingdom. It’s been ready for you since the world’s foundation. And here’s why:

I was hungry and you fed me,
I was thirsty and you gave me a drink,
I was homeless and you gave me a room,
I was shivering and you gave me clothes,
I was sick and you stopped to visit,
I was in prison and you came to me.’

^37-40 “Then those ‘sheep’ are going to say, ‘Master, what are you talking about? When did we ever see you hungry and feed you, thirsty and give you a drink? And when did we ever see you sick or in prison and come to you?’ Then the King will say, ‘I’m telling the solemn truth: Whenever you did one of these things to someone overlooked or ignored, that was me—you did it to me.’ Matthew 25:34(MSG)

²⁵ Just then a religious scholar stood up with a question to test Jesus. “Teacher, what do I need to do to get eternal life?”

²⁶ He answered, “What’s written in God’s Law? How do you interpret it?”

²⁷ He said, “That you love the Lord your God with all your passion and prayer and muscle and intelligence—and that you love your neighbor as well as you do yourself.”

²⁸ “Good answer!” said Jesus. “Do it and you’ll live.” Luke 10:25

“The cry of the person in need, inconveniences those who are comfortable and satisfied with themselves and their lot”  Kathryn Spink

Loving humans who are disabled in some way, whether physically, mentally, emotionally or financially is. just. harder. Understanding their needs, caring for them physically and financially is at best “inconvenient” and often overwhelming. 

As older humans, Sherry and I have become more aware of our physical limitations. We know that the joy of having the grandkids over for a night on Bobo and Yaya’s farm can be very taxing. It often requires a full day of rest afterwards to recover our balance. With that thought in mind, two weeks ago we invited just the three oldest grandkids up for a Friday night as a “balanced” and sensible decision. For the two of us, adding in Hattie K with all her equipment and/or Ryder James, the almost 2 whirlwind, would just be too much to handle.

I had the job of gathering them up on Friday afternoon and transporting them up the hill. As usual, pick up zone at the Jetton house was a circus flurry of noise and activity, including the packing of all overnighters’ necessities into brightly colored backpacks. In a moment of disconnection from the chaos, I glanced at Hattie K in her wheelchair taking it all in in her silent, focused way. As she watched the preparations of her older sisters she quietly turned and wheeled off to her room. She returned in a moment with her own backpack in her lap and a hopeful expression on her sweet face and, looking straight at (or through) me, she parked herself in the front entry hall.

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All Hattie wants in life is to be included…to have or do what everyone else has or is doing at any given moment. Now, she was ready to go and our “balancing” decision was about to leave her out “because she takes a lot of extra energy to care for and watch over”.

I hugged her and told her how much I loved her after she gave me the deep look directly into my soul look…and left with her sisters and her cousin and their backpacks in tow. After all, I had a schedule to keep to get Laken to her riding lesson! 

Her mother told me later than she sat by the front door with her backpack in her lap and cried for an hour after we left. Just recalling that image in my mind now makes me weep in my foolishness at abandoning her based on how inconvenient it was to include her. Our weekend was so much less because she was left out.

The next weekend we arranged to take all the girls to The Royal Gala of Horses in Pensacola. ALL the girls. This time we swapped our car for the Jetton van full of girls at an interstate exit gas station. As we shifted belongings between vehicles, I caught Hattie K watching every move with even more intensity than usual. She protested loudly every time her mom came close to her and her backpack. It was clear that she was fearful that we were going to move her to the other car and leave her behind again. When we finally loaded into the van and left with ALL the girls in tow, she laughed out loud and sang in her way the entire way to the show. 

At the show, she was joyfully leading the way in her chair everywhere we went. She was so deeply impressed by every part of the experience and it showed in her every expression. She was the best kid of the four on that trip and her “just glad to be here” spirit lifted the rest of us up beyond where we could have gone in her absence. All of us competed for the joy of pushing her chair way too fast and inciting howls of Hattie laughter by spinning and dancing and sharing Cheetos with her. 

Rather than being an inconvenience, she was a treasure…and we will never, ever exclude her again. It’s not guilt or charity that motivates us. We simply desire to be in relationship with her every hour that we can. We want to deeply know and  enjoy life from her perspective. She draws us out and teaches us over and over the simple joy of living fully in the present moment. She and “everything in her backpack” adds unique Hattie colors and Hattie flavored joy to our lives. 

She is a child of God, formed with a purpose and a mission in this world. She and so many other inconvenient people have so much to teach us about  the most important things in this world and the next if we will just see them, reach out to them, be with them…love them as much as we love ourselves.

“It’s not that we don’t care about poor or disabled people. It’s that we don’t know any poor or disabled people.” Shane Claiborne

From your recently humbled, inconvenient friend…SKH

“He who has felt the deepest grief is best able to experience supreme happiness”  – Alexandre Dumas

The last few blogs have been on the heavier side, but I believe with all of my being that the are vital for all to be talking about in this dark world we live in.  So many people choose (I’m guilty of this) to bottle up these emotions and not talk about them out loud/with others.  Before we know it, thonse undiscussed emotions and feelings that sit so heavy in our hearts start seeping  out into all the things around us.  I’m currently doing a great bible study with Nicky Gumble of reading the bible in one year – it has me simultaneously processing through the old/new testament and psalms/proverbs.  So many times, Jesus speaks about the words of our mouth being an outpouring of the condition of our heart.  How can we not expect ourselves to speak sadness when our heart is mourning/crying/struggling?  

As with all things Hattie, as I processed, I just watched her and looked AT her to see her heart in all this sadness/confusion/loss.  What I realized was more than anything Hattie wanted 1 thing – Love.  She didn’t seem to mind her stationary life one bit.  Here I was grieving “the normal” life for her while she was across the room living her best life.  She knew LOVE.  What greater gift is there than Love.  It is what the Lord commands for us.  It is the universal language that connects all beings.  It is what Jesus did every step of his life on earth.  The upward turn for me was recognizing that I needed to truly start looking upward and identifying love.

5. The upward turn and 6. Reconstruction and working through

There begun to become moments where James and I truly began to look at Hattie “different.”  Instead of comparing her to the child she should’ve/would’ve been, we began to look at the child she was – the child we had been gifted and given.  What part of God’s image was He showing us through her?  She was not a mistake – She was not made by accident this way. The miracle that Hattie is who she is and is a living/breathing smiling little 3 year old now is a miracle of genetics.  Her genetic code was not “perfect” yet here she was fully formed in my womb.  How was He speaking to us through her?  Hattie has 4 words, yet Hattie can light up an entire room (she can break one down as well – if she’s sassy) with just her eyes/excitement and body language.  She lifts her little hands up towards the heavens and I believe God sends a special and unique light down upon her.  I feel like she can see things in us that we often are blinded to seeing within ourselves.  

As we began to see the grief slowly lifting from our initial process – we began to piece together and reconstruct our “new vision” of life and began to plan for whatever future each new day brought.  My anxiety is still real and ready to pounce most days – but I was able to slowly let go of the clinched fist of inability to control things and realize that I truly have no control and that’s ok.  The more I could let out of my grasp the more my spirit could find peace and calming.  I know that she is mine for whatever time her plan is to be on this broken earth.  I began to take on each day as one more day I could enjoy and learn from her and my other children.  She was part of this family – our 3^rd wheel literally – and I had to embrace the reality that she could just fall into the picture of what was, and not always have to be the center of what is.  She gives us such incredible perspective of God.  We began to work through this concept of Gods image and piece together an even bigger and greater God than what we could have ever originally seen and known.  She was a gift that we have been given for whatever time she may be here with us – We would expect nothing and anticipate everything – and in ALL things OUR HANDS WOULD GO UP.

7. Acceptance and Hope

So, there it was – our acceptance.  Our peace in who she is and what she might be.  Our little Hattie K with her blonde curls, infectious giggle, radiant smile and sassy little personality.  She is a hope to all who know her.  She is a little light shining in an often very dark place and she does it without having words.  What a great testament to the language of LOVE and who we are all designed to be from our innermost simplistic being.  

Jesus tells us of 2 commandments.

1. To love God
2. To love one another 

Hattie has her own little language, but I believe she does both of these to the fullest.  Her little hugs will literally lift your heart out of any dark spot.  It is a special light and a special gifting that she has uniquely been given.

Hope: A feeling of expectation and desire for a certain thing to happen.

A feeling of trust

For us, to Hope is to know that our expectation of Hattie is for her to ALWAYS know that she is Loved and Loved for who she is.   We have a feeling of trust in the Lord that His plan is good and with all the trials of this life, He equips us with just the right tools in our toolbox to use to further His good works.  

There are days that I slip back into the anger/depression stage or “circle of pain” as I lovingly refer to it as – but I remember the Hope that lives with the life that Hattie lives every day.  She gets frustrated and I know feels emotions deeper than I have the ability to understand but I also know that she knows who she is and knows who she was designed to be. I accept the gift that I have been given even when I don’t fully understand why or how I could possibly be equipped for this.

My biggest prayers are for those who are stuck in any of these certain stages, especially those trapped in anger, disbelief, grief or depression, that there is a Hope in all things.  There is a future, there is a next step – even if it may feel like 1cm step in front of the other – it is a way forward.  It is the hardest to step on a path where the road is narrow, consistently winding and the ending is unknown but the only way to find out the ending….is to step forward.  If you believe in the Lord, He will meet you there.  Even when we find ourselves distracted by the winds and the waves of life; Jesus is there with his hand out waiting to calm the storm.  We don’t have to have all the answers because He provides the map.  Day to Day things will change – unforeseen events will continue to happen.  Tragedy will occur.  Pain lives in a world that is broken but JOY comes in the morning.  Choose Joy.  Look for the joy in your current grief today – maybe it’s a red cardinal on your window, or the sound of the ocean, or your favorite crazy fun song played way too loud with your windows down –that joy stone will help pave the way for your road out of grief tomorrow.  One foot in front of the other, one stone stacked with your face turned upward.

Expect nothing and anticipate everything – Our Hands Go Up

Blessings, 

Kaet

Podcasts I’ve listened to this week

Episode 443. The Roaring Twenties – Passion City Church

Episode 10,993.  When You Bring Order to the Chaos, It changes Everything – The Dave Ramsey Show

Things I’m reading:

You and Me Forever – By Francis and Lisa Chan

Bible in One Year 2020 – By Nicky Gumbel