Thankful

Needless to say it was not a "Merry Christmas" in the Sallee household today, instead it was the last Sallee family Christmas as I know it, the last Christmas with mom. That's heavy, huh?   So my favorite Christmas movie is " A Christmas Carole"  by Charles Dickens, and this year I have somehow seen four different versions of it. And everyone knows the end when Ebenezer wakes up, and discovers he is still alive with the chance to bless, and love and spread Christmas cheer; then he goes running through the streets yelling "Merry Christmas!" Truth be told that I didn't feel like saying Merry Christmas this year, it was more an act of honor, not merriment or happiness.  But I think the happy warm feeling of Christmas Day, with the perfect gifts, carefully placed house decorations and the big feast is just a facade. And a lot of this holiday is distraction from a much holier and more somber day than we give it credit for. Sure we sing Christmas hymns and carols and "O Holy Night" might bring tears to our eyes. And there are so many wonderful Christmas movies to watch that talk around the idea of a winter holiday that involves good feelings, love, gifts and a happy ending. But the real Christmas story isn't glamorous or sparkly or involve trees, tinsel, bows or family gift exchanges, it involved a drafty barn, hay and a feeding trough for a crib as well as flights in the night to flee danger.  And there was certainly no "happy ending" a few years down the road.  There is no warm and fuzzy feeling or a happily ever after at the end of my Christmas story either, instead I'm more dwelling in that end part of the Christ story: His suffering and  sacrifice. And I'm understanding so much more what Christ sacrificed. Seeing the story in a new light I'm realizing this chapter in my family's story is almost done with all its traditions and good feelings. There are new chapters of the book are yet to be written. And now we wait.

Mom's days are drawing shorter and shorter as her consciousness each day decreases. When she is awake she is mostly foggy, not sure if it's the drugs or the liver disease or her body slowly shutting down. But despite that, Dad, Jeff and I have all been able to have wonderful talks with mom in the past days expressing our love for her, telling her how much we will miss her, making sure she knows we aren't afraid of life without her. But beyond those few conversations there is much silence from mom.  She is quite comfortable, but her body is so very tired.  She talks a little and she drinks fluids some, and I was thrilled to get her to eat two Popsicles today after giving her pain medicines. Her breathing is starting to get heavier and more labored, she drifts in and out of sleep more now, and too weak to even stand. Her face is drawn tight for the most part but we can still draw out that classic Janice smile a few times a day, but only if we are goofy enough. So we treasure the smiles and just keep waiting. 

There have been lots of tears shared between dad and I as the reality sets in deeper, but you must know how thankful I am . I'm thankful for these tender moments. I'm thankful for the last months and now weeks to learn to let go. Everyday I have to talk my emotional fingers into releasing their grip that is tightly clasped on mom. I'm thankful for Gods grace to give me 35 wonderful years that didn't end in a sudden stop but have wound down slowly.  I'm thankful for the 10 months she fought so that she could be here for my brother and I. I'm thankful that soon she will take her final breath on earth and close her eyes one last time, and when she opens them again her body will be free. She will take a deep breath and realize that the battle is done, the fight is over and the cancer is gone, and the happiest of  happy endings will find her in the arms of Jesus.

The hardest part

Today is one of the hardest of days in this walk with mom. Just the reality of it all settling in, hopes dashed and crumbled once again, and trying be present as a loving child and caregiver while holding myself together. Its a lot of pressure to bear up under. And it's these days that being a nurse are the most challenging. I have a job where I make people better, and if I can't I find someone who can. ER nurses are tough and we don't take no for an answer, we save lives in a matter of hours. We may lose a patient from time to time but we save so many that we always have confidence and hope that we can do it again.  But this situation is different. This time it's my mother and this time I can't save her. What is a nurse to do?

The hardest part about today is after realizing that things are worse now than they have ever been is trying to find a little piece of hope to stand on. Without hope I start sliding down this terrifying hill that you can't see the bottom of, and the hill isn't bad but it is oh so scary and so foreign. The faster you go the better you can see the fast approaching base of the hill, and terror with it. Finding a little hope blinds me to the fear and helps me find joy in the midst of the fall. Somehow I'm stuck. I know my mothers ultimate hope and my hope for her is getting to pass on from this world into eternity, and into the loving arms of Jesus. But the daughter and the nurse in me cannot find solace there yet. There is so much suffering and illness in the meantime and the path is a long hard one.

There is just so much to consider, so much that my medical brain and spiritual heart run through.  The nurse in me never really stops and I'm constantly assessing mom with my eyes, trying to see ways to help her, weigh out the difference between dangerous new symptoms versus acceptable progression of the disease. I'm so tired of chemotherapy. I'm tired of seeing the fatigue, the neuropathy, the fog, and the compromise brought on by it even though it is preventing advancement of tumors. I hear her wheezing and short of breath and I just don't know if it's tumors in her lungs or if it's because of her low blood counts depleting her body of the necessary oxygen her body needs. 

My nurse brain is constantly trying to fix this very special patient, this most critically ill patient. How on earth do you teach an ER nurse to see altered mental status or wheezing or sheer fatigue or anemia or critically altered lab values and do nothing?  I fix things and I fix people, that's what I do when I go to work.  Even more challenging is trying to turn the assessing off at home and a few hours later turn it back on at work.  I must suddenly value the minute suffering of a headache or a sprained ankle with the same compassion as that of my dying mother. All the while my moms illness process and the questions of her care plan still run through my head. 

You nurses all know we learned to make care plans and learned to hate them. I promised myself I wouldn't make a care plan for mom; but here I am with goals for healthy skin and prevent skin break down and falls and promoting oxygenation and ADL's in the back of my mind while looking in a 2 year olds ear.  I want to let the doctors be her doctors but 10 years have taught me doctors don't know everything and the compassionate nurse often has the wider scope. The reality is setting in that my dear mother will become my most challenging patient. The reality is setting in that I'm not supernurse and I can't fix everyone. Only My Jesus can fix her. And only He is my hope. He must be.

"And hope does not put us to shame, because Gods love has been poured into our hearts through the Holy Spirit" rom 5:5

Leaving a Legacy

I have a few projects I have been up to lately. I seem to pick a hobby every winter, this one keeps resurfacing. This years hobby refinishing and repurposing. It's cathartic, the sanding, examining the wood, applying a new coat to find a new  piece of art almost. Last year was a dresser turned pottery barn-esque buffet,

 this year it's an armoir, and up and coming are a ladder and another dresser.

It's appropriate though. This has been my mother's  hobby for years, among all her other creative crafty hobbies. I've watched over the years my mother take hidden treasures and not only make them into family heirlooms but timeless statement pieces. One of my favorite pieces is a china cabinet that we call "the chicken coop".  My parents found it 35 or more years ago on the family farm stored in the chicken coop, covered in dirt with chicken poop and under that multiple layers of paint. Mom somehow stripped it and stained it.  It's now this gorgeous piece with original glass still, but my favorite part about is hearing what a piece of junk it looked like.  I love thinking of my moms gift of creativity and vision flowing in me.

So if I seem antisocial lately or if you wondering where my painting hobby has gone, I'm still painting. And sanding, and sanding more and stripping and staining or painting . And dreaming of the next piece of furniture to work on, my moms legacy is showing up in so many ways and it's so much fun to see where it pops up, and right now be able to share it with her.  Most recently I found an old paint covered ladder in my attic, came with the house! I can already see it will be a challenge but the original brass brackets call out to me 'fix me, clean me!' So we will see how it goes:-)

One of he hardest things about watching my mom endure this illness is her lack of stamina to take on these tasks. It's just so unlike her to not be able to keep or stay up. In have memories of the days before Christmas mom up most of the night working on that years hand crafted present for her sisters or Tara and I. The creative juices are still flowing in her, the ideas and half finished projects still waiting. Waiting for the strength to return to her hands and the energy to flow back into her body. But it looks like I am to pick up the sanders and the paint brushes now. Her legacy very much lives on in me, even in her weakness.

It's as if my God had planned this new hobby for me. There is something so healing about refinishing a piece of furniture, and continuing my mom's hobby. There is something in me that feels renewed or restored when I work out the old paint or the chips, find that old wood color, or put on a new coat of paint on or glaze a new face on something.  So here I am inspired with a new craft and a new gift I can carry on.

God of All Comfort

My recent weeks have been filled with tears more often than not.  I am not the crying type generally.  But things change when sorrow and suffering come to live with you. Like the aches after a new workout regimen, I now hurt in places I didn't know I had and ache in a variety of depths. The tears come from any possible source and not for the usual reasons. 

But let me back up… The tears are mostly about my mom, but my mother is not dying, not really. She is suffering, enduring, and persevering and its quite the process to walk along.  My mother’s days are numbered, but then so are all of ours. It just appears that my mother’s days are much fewer than we would hope, and fewer than I want them to be. I was raised knowing that our days in this life are not guaranteed, events can strike at any point. Even in my faith I learned not to hold tightly to my life. Through life I have clung to verses such as “To live is Christ, to die is gain” and “Take up your cross and follow me” and learned to not put all my hope in my days on earth because there is a glorious eternity with the Lord after this life, something I anxiously look towards constantly. So I have not ever been too anxious about my days on earth being shortened. 

Somehow I never applied this mantra to my loved ones. Now I want my mother to live and holding tight to her instead of losing like I do my own life. And I am in a hard place of letting God do with my mother what He wills. If I let Him have her I take the free fall with Him into the arms of His sovereignty. You know like the amusement ride that slams you up and down so fast you think you might vomit and die, except you don’t because you are secured in this massive safety harness. That’s the ride that myself and my family are strapping into right now. Actually I am pretty sure we are on it, because my stomach and my heart have been jerked all over my body already.

This free fall ride is filled with uncertainty, sweet moments of joy, kindness of the Lord and plenty of sorrow and suffering. Sovereignty is not something to be figured out, and not just endured, it is strangely a gift that can’t be understood until years later.  The two things I have learned about God’s sovereignty: first it is why I am not God and second, I must trust Him and believe He really has His best for me.  In the minute to minute God’s sovereignty seems cruel, in the day to day it seems confusing and hurtful, month to month it seems domineering and blinding, but three and five years later it is glorious, kind and wonderful. And just like that crazy ride we eventually tell people how great it is.  

The past 6 months have been so awful and wonderful at the same time. I have had the gift of getting to be with my family so much more than normal, I have made some new amazing memories. My parents who live 4 hours away now come and stay with us for 2 days nearly every other week now. The circumstances hurt but the visits are sweet. I have prayed daily for a miraculous healing for my mother with no answer.  My mother’s tumors continue to grow in her body a little at a time, her signs of liver disease increase, her energy level is non existent and food is a terrible mean trick. It’s a mystery when nausea or vomiting will strike or which foods will be appetizing and which ones will be the opposite. Despite that her immune system stays strong. I can’t explain it but her white blood cells, red blood cells,platelet counts etc all remain stable and unchanged despite all her chemo and medications. I have no explanation other than an answered prayer.  I want a miracle, well here is a small one. The one thing that would keep her from continuing Chemo would be her immune system taking a hit, and counts going very low. By being able to stay on chemo the tumors remain somewhat stunted which gives her more time. Her blood counts remain inexplicably strong. Glory! Glory? Yes Glory.  I must be thankful, thankful for more months. Months, Lord? Can I have years? And the ride continues.

But back to the tears that seem to be pouring out of me.  I keep asking am I crying too much, am I too grieved, my feelings are real right?  It’s so hard to see my mom’s suffering, her body so weary and persistently sick, her spirit weakened. I am filled with such sorrow when I look towards the coming years and start to imagine life without her. It’s awful. It hurts. It’s gut-wrenching. My memories sting, my joys and hopes burn hot tears on my face.  And through my blinding wet eyes I have to remind myself that sorrow and suffering aren’t bad, they just don’t feel good. My flesh wants to avoid it and run the other away.  Praise God that there is someone who can turn my sorrow into joy and my suffering to peace, and who knows suffering, chose suffering to give me peace, it is the Prince of Peace, the Lord Jesus, the Lamb who takes away the sins of the earth, and had to suffer and die on a cross.  He died to reconcile the whole world to His Father.  He is the God of comfort and the Lord of encouragement, and He gives our temporary sorrow and suffering has eternal purpose. There is a reason we get on the ride and take the freefall into His sovereignty, its a purpose greater than myself, and requires trust beyond what I could imagine. “Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s suffering so through Christ we share abundantly in comfort too. (2 Cor. 1:3-5)”  So God of peace and comfort come. Come to my mother in her affliction  and give her comfort, come to me in my sorrow and give me a revelation of your sorrow and your suffering. 

I thought my heart might break....

I thought my heart might break

Today was one of those perfect days in the Ozarks, warm sun, cool breeze, long shadows from looming trees, with the smell of fall and hint of woodsmoke in the air. Yesterday was much like it, perfect. These are normally my favorite types of says to spend at  home with my folks. And this was a wonderful weekend. The whole family had come in, we were celebrating my brothers birthday and my mother's birthday.

Nothing monumental happened this weekend and yet I will remember this one till my dying day. It was a day of pleasant side conversations, yummy food, my niece talking and parroting the 6 adults around her, meal prep, and a very real mutual understanding that all is not well. The proverbial elephant in the room was there, no actually cancer was sitting in the room there with us. This ugly disease that steals and destroys sat in the room with us as we watched a church service on podcast. I had to look in the face as I saw favorite foods passed over, foods that would have normally been called comfort foods, carrying precious calories that were desperately needed in a weak and disease ridden body. I watched pills be ingested to poison this demon of a disease, knowing the pills weaken and wound and distort the person in the room I love.

I thought my heart my heart might break today. This pain of having to watch suffering in such a real live way was almost more than I could bear.  I didn't bear it, I wept. I would drop conversations to weep, turn away, and try to straighten up so that I might pick up the conversation and enjoy the moments I have with this beloved person. It's hard to imagine my pain being anywhere near the physical pain and aches she feels and even harder to understand the emotional strength that she is bearing up under to submit to the emotional pain she endures each day. I saw that pain today. I witnessed it with my own eyes. I saw her heart ache as waves of nausea washed over her and I saw her try to force food, because energy and calories means life. I saw her strong heart wince and weep a little as she lost another tiny battle that she is so determined to win.

In the moment her battles look insurmountable, her mountain looks unconquerable, but her battle is not about waving a pink flag or ribbon in order to say, " I win", her battle is about a sacrifice. A selfless sacrifice of love. Her love for her children and her husband is what drives her, her love of her grandchildren, her family, dearest friends and families through the years, are apart of her legacy. Grandchildren have an eternal inheritance to gain from her and she knows it.  This woman is not afraid of death and she will bless the Lord and rejoice in the God of her strength always.  I suggest that her battle is far from the modern day commercialized pink ribbon fight. I suggest a battle far more noble and much more costly I suggest she is looking to Jesus, the author of her faith, and enduring and taking up her cross.

I will remember this weekend forever because I saw a a woman bear her cross, put on Christ and lay down her life for her family that she might live (more fully in Him), so we might live more fully with Him. I watched her fight and I thought it might break my heart. Then I look again and I recall a lesson on a Roman road.... "For one will scarcely die for a righteous person- though perhaps for a good person one would even dare to die- but God showed His love for us that in while we were yet sinners, Christ died for us."