Be Still...

Lord, You want me to “be still”….

"The Lord will fight for you, you need only to be still.” - Exodus 14:14

“Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth.”- Psalm 46:10

I know what You want for me, but at times I am incapable of “being still”.  My mind wants to race off on its own rants of fear and confusion.  My heart wants to shatter into millions of tiny shards of pain.  My emotions feel like an ocean storm tossing to and fro.

But then, You already know that I am not able to remain still on my own.  Your command for me to be still has more to do with surrender and less to do with my own ability (for apart from You, I have no good thing-Psalm 16:2). 

“You answer us with awesome deeds of righteousness, O God our Savior, the hope of all the ends of the earth and of the farthest seas, who formed the mountains by your power, having armed yourself with strength, who stilled the roaring seas, the roaring of their waves, and the turmoil of the nations.  Those living far away fear your wonders; where morning dawns and evening fades you call forth songs of joy.”-Psalm 65:5-8

“You rule over the surging sea; when its waves mount up, you still them.”-Psalm 89:9

“He stilled the storm to a whisper; the waves of the sea were hushed.”-Psalm 107:29

It is not my responsibility to be still but to simply humble myself before You and depend on You to create stillness within me.  For with the stillness You provide, comes the joy You have promised.

 “The Lord has done great things for us, and we are filled with joy…Those who sow in tears will reap with songs of joy.  He who goes out with weeping, carrying seeds to sow, will return with songs of joy, carrying sheaves with him.”-Psalm 126:3,5-6

“They will celebrate your abundant goodness and joyfully sing of your righteousness.”-Psalm 145:7

“Indeed, you are our glory and joy.”-1 Thessalonians 2:20

“Splendor and majesty are before Him; strength and joy are in His dwelling place.”-1 Chronicles 16:27

Thank You, Lord for creating stillness and a joy within me.  “Even if” the journey I am on is hard.  “Even if” my dreams didn’t fit within Your will.  “You have made known to me the paths of life; you will fill me with joy in Your presence.” (Acts 2:28) and I trust You! 

 

 

 

 

 

Hospital Bed and Love

There is a hospital bed….IN MY HOUSE.  This is real.  Like the baldness made us realize the effects chemo was having throughout Tim’s body even on the non-hospital weeks.  This bed slaps me in the face with the rapidly approaching end-of- life reality.  It was no fun in the hospital; it is less fun in my home.

 

Cannot think of a better use for the quilt my mom made
me last Christmas out of Tim's shirts!

“Awkward” and “out of place” don’t even sum up the appearance of this contraption in my bedroom.  Tim wasn’t even able to gain consciousness as the bed was being constructed a mere 3 feet from him.  I stood there watching, with my dad by my side (as he has been throughout this entire journey).  I may have had a minor emotional moment as the bed was being assembled.  I may have let a tear slip down my cheek and may have had to bite my lip and take a deep breath to stave off the ugly cry, all while internally begging God to calm me so I could maintain composure. 

He did, because He is good like that...and He LOVES me. 

I know I have said it before, but this hospice stage is difficult.  We have spent nearly two years fighting hard every single day to not end up right where we are at.  And it stinks.  And it is weird to be expected to suddenly change brain gears into one where we aren’t fighting to survive anymore.  Our minds know that there is nothing more to be done, but our hearts still hold out hope that someone will step in with a solution. 

Somehow, seeing this hospital bed within the sacred space of our master bedroom feels like another failure…another inability to conquer…another realm of giving up. 

It hurts.  It hurts in a way that takes my breath away and pierces my heart.  It hurts in a way that courses hot tears down my face in the privacy of my home office while my children play upstairs.  Silent sobs rack my body. 

I tell God that I want to yell “It’s not fair!  Take someone else.  Take someone who isn’t good.  Take someone who doesn’t love his family so well; someone whose presence won’t be missed every second of every day in a crushing way.  Don’t take this man!  Don’t rip apart THIS family.  We work so well together.  We have such joy.  We truly cherish each other’s company.  We aren’t perfect, but we were doing life well, serving You.  Please, don’t take him!  Take someone who has lived their life, not this 45 year old man who has made plans with me to travel in retirement and spoil our grandbabies together and host big holidays.”  And then after I blow my nose for what feels like the thousandth time, and I dry my eyes and sit in the stillness of my Lord’s presence,

He reminds me.

This earth is not our home.  This life is not what we were created for.  He is here.  He is Immanuel, “God with us”.  He will never leave us.  He is faithful and He is true.  He is big enough for me to lean into; He is strong enough and patient enough to listen to my rants and to calm my aching heart.  God loves me with a love the depths of which I cannot understand.  It is unconditional, it is un-overwhelmable, it is non-fluctuating, and it is indispensable.

His love for me….

               is patient and kind.

               does not envy, nor does it boast.

               is not prideful, it does not dishonor others, is not self-seeking.

               is not easily angered and keeps no record of wrongs.

God’s perfect love for me…

does not delight in evil but rejoices with truth.

always protects, always trusts, always hopes, always perseveres.

never fails.

 

So, in this moment, on this eve of Christmas Eve, and yes, even with this hospital bed in my home…I choose to remember that I AM LOVED.  I am loved by a God who is Himself Love.  I am loved by the Great I Am. 

And that is enough.

HE is enough!

Roller Coasters

We are a fun-loving family.  I wouldn't necessarily call us "thrill-seekers"
(unless we are skiing down a mountain....then some of us are definitely more seekers-of-the-thrill than others)...

a favorite ski run of Tim and the kids

 

But we all do love a good roller coaster. 

 

 

We have often referred to this cancer journey as a roller coaster.  It is an unwelcomed roller coaster that does not induce joy.  This end time with hospice is no different.  My Tim will have days where he is awake and alert for 6-7 hours.  We call these the "good days"; he recently had three good days in a row.  Was even strong enough to leave the house on short errands with me.  Mixed in with the good days are what we call the "sleepy days".  Sleepy days come on suddenly and without true warning.   He may wake up mid-morning to early afternoon, go through the tedious process of clearing out his throat, taking his meds and administering a feeding through his tube; only to find himself too exhausted to stay awake.  This process could repeat two or three times throughout the day.  Some sleepy days allow him to take a few business calls in the minimal, sporadic hours he is awake.  Some sleepy days find him only moving from the bed to use the restroom and clear his throat.  On average, a sleepy day finds him resting 20-22 hours our of a 24 hour period. 

 

It is this constant up and down that sometimes feels unbearable.  

 

 

 

 

When the sleepy days are linked together three and four at a time, we begin to think that the end is imminent.  Then, just as we are preparing ourselves for the inevitable and teetering on making the calls to our family and friends, he rebounds remarkably with a good day.  It is a crazy roller coaster with unexpected dips and turns, steep climbs up and stomach-lurching, full-speed drops.

 

Quite frankly after nearly two years of this constant ride, we are beginning to experience whiplash and nausea.  So this last week, when Tim had a string of three good days followed by a full 22 hours in bed; he mumbled to me that he can't make his body wake up anymore.  I would go to check on him often and he would state that he was trying to get up, but just needed a few more minutes.  (This happened roughly every 2 hours.)  I could tell he was scared that he couldn't get himself awake.  I assured him that this was his normal cycle and we weren't going to worry about this sleepy phase quite yet.  If he couldn't rebound in another 3 days, then we would allow ourselves to begin to think that this really was the end of life process that we have read and been counseled about.  But until we reached that point, he should just let his body rest and store up some energy for his next round of good days. 

 

We have always been very open with our children about Tim's diagnosis and prognosis.  Bless them.  They have endured this roller coaster right along with Tim and I.  They have juggled the ups and downs and still maintained their grades and their extra-curricular activities.  On the way to school this week I was repeating the conversation I had had with their father.  Our daughter looked at me and with the funniest attitude inflection of her voice she paraphrased my message to Tim, "Oh no, honey-child.  We are NOT gonna get on this roller coaster to-day.  We are just gonna stand at the gate and watch it for a while.  We can get on later if we need to."  She cracks us up!  She also summarized our situation perfectly.  

 

Tim rebounded for a long day out of bed (struggled to stay awake the whole time, but was determined to stay in the living room or home office most of the day.)  We are back on the sleepy days again now.  This is day two of this round.  The kids are home for Christmas break.  I find myself realizing that it is possible their daddy will pass away while they are home instead of during their school day.  The logistics of it make me feel as though the pit of my stomach is dropping again.  But, then I hear my girl's voice in my head telling me, "Oh no, honey-child.  We are NOT gonna get on this roller coaster today."  Out of the mouths of babes, huh? 

 

 

 

While we have no choice but to be at the gate of the roller coaster ride.  We do have the ability to refuse to get on with every single fluctuation this disease brings to the death process.  We don't have to become panicky over every tiny detail of the end.  We can focus on remaining calm and loving towards each other.  We can be encouragers to Tim and to one another.  We can follow the guidelines of Scripture and trust that God has Tim's days written in His book of life and that His timing is perfect.  We can cling to the peace Christ offers us and we can rest under the shelter of the Almighty's wings.  And we can hope for more good days to peek through the clouds.

 

The good days tend to make us willing to jump right back on the roller coaster and create beautiful memories in the process.

 

 

 

 

            

 

 

(the good) The Bad and The Ugly

Some days are just harder than others.  I can’t change that fact.  There are days when I accomplish everything on my to-do list with a smile on my face and a pep in my step and then there are the days when I can’t even find my to-do list.  Currently, I typically have strings of “okay” days (just keeping it real) with a scattering of really tough ones in the mix.  Recently, my days are comprised of a long string of hard days with mere glimpses of good moments.  It isn’t very much fun.  I am beyond weary; I don’t even think there is a vocabulary word that could fully describe my level of exhaustion and sorrow.  The stress that I carry around every waking moment is unbearable.

Two characteristics of the old Lori were that she didn’t cry very often (maybe a small leaky eye from time to time, but hardly ever a good bawl fest), and she was hyper-organized.  Oh how I miss that girl!  Right now, I am so far past the point of being organized that I cannot even form a semi-organized thought.  And the crying…..oh for the love of all things purple….it comes without warning and I crumble into a heap of tears and snot.  Twice last week alone, I had to excuse myself from the dinner table to try to regain my composure.  It's the ugly cry too, you know?  The one that contorts your face and is impossible to hide.  Beautiful, I tell you. 

This journey has stretched me into a better person in many ways.  I have grown.  I have changed.  Oddly, I have become softer.  I used to think I was a fairly strong woman.  Now I don’t know if I ever was strong or not, but I do know that I am somehow evolving into a kinder and gentler person.  I am far from strong in this moment.  I am weak, angry, sad, scared, confused, bitter, frustrated, exhausted, and overwhelmed.  I know that the healthy thing to do is to let each of these emotions fully wash over me; to experience them deeply so that I can cross through them into healing.  To hand each and every emotion over to God so He can cleanse me of the negative and nurture the positive.  I KNOW these things, but these past few days I have had to fight this odd desire to just cling to the negative. 

Sitting in a deer blind on the eve of Thanksgiving, I was in tears of gratitude for how God had carried us through these horrific months and all the lessons He has taught me.  Then Thanksgiving dawned and I was M A D.  Dare I say I am mad at God?  Might as well say it, it’s not like He doesn’t already know.  Oh, I have told Him of my anger.  He is a big God and He can handle it.  He forgives me.  I think it is okay to admit being mad at God, we just can’t allow ourselves to get stuck there.  We cannot allow ourselves to sin in our anger. 

The emotional swings have never been as great for me as they are in this particular period of the journey.  I am suffering.  The constant stress of knowing death is approaching and yet trying to keep my children involved and active in their own lives while juggling protecting them from experiencing too much of the death process has worn me slick.  I am irritable.  I catch myself being hyper-sensitive, ungrateful, and selfish

…often. 

People private message me from our support page or this blog and they say how they “loved every second they had with their spouse as he was dying”, how they “were grateful for each and every moment”.  That is lovely for them.  Maybe, (giving them the benefit of the doubt here) their spouses’ journey didn’t stretch out as long as our “terminal” has.  It is possible they didn’t have to wait for the inevitable death quite as long as we have been waiting.  Did they really lie through sleepless nights counting the long seconds between their husbands’ breaths with joy in their hearts and smiles on their faces?  (We have made it past 19 seconds now; it is agonizing waiting for that next breath.)  Or is it that they live in a false reality of their own memories? 

(See, now I am being crazy mean.  What is it with my emotional outbursts?  Why can’t I just let people have their experiences and allow them to be better than or different from my own?)

I find myself desperately hoping that they have altered their memories to fit the bubble they want their grief to fit inside of,

because right here,

in the midst of my grief, fear, and exhaustion,

I don’t love every minute. 

I don’t love it much at all. 

Am I grateful for the fact that Tim saw our daughter’s 13^th birthday?  You betcha! 

Am I humbled that God gave us her first hunting season with her Daddy?  I am deeply humbled! 

Am I thankful for every good day he has with us?  I truly am. 

Does my heart skip a beat each time I hear our son say “Love ya, Dad”.  Absolutely! 

But there are also a whole lot of “seconds” and “moments” that are ugly and horrible.  I am not grateful to watch him suffer.  I do not love watching him grow weaker and more confused.  I do not enjoy smelling the tumor 24/7.  I am not a fan of having to sneak into our room every hour or so to make certain he hasn’t passed away in his sleep yet.  This isn’t “blissful” or “wonderful” for me.  I instead find it stressful and paralyzing.  It is as if I am stuck in this limbo of in-between. 

So truthfully, I really am not entirely a crazy-mean lady.  I do “get” that widows loved caring for their spouses.  I certainly consider it a true honor to serve Tim in this way.  But I don’t love the individual specifics of the situation I am in.  I don’t enjoy every moment of the day-to-day stress of this period in our lives.  I just don't.  And maybe I am nit-picking others comments.  Let's just chalk that up to the new hyper-sensitive Lori that I am not the biggest fan of.  But when people say, "enjoy every moment" and they "would gladly take the hard moments to have their husband be able to hold their hand again", a part of me wants to sweetly and tearfully understand the anguish of their expressions.  And another part of me wants to scream, "REALLY?"; because it is scary for me to attempt to comprehend the fact that missing him will be more painful than watching him suffer 98% of the day.  The fact that this will only get tougher terrifies me.  I am already at my breaking point.  Lots of cracks going on over here, people.     

I just think maybe someone else needs to hear that life isn’t always peachy-keen here in my world.  It’s a lot of heartache and struggle.  It has been a long period of just being stuck in the same place. 

And the frozenness of it…
grieving for and fearing what is to come;
trying to live in each moment knowing it could be the last;
playing all the different death scenarios in my mind and planning how I will protect the kids from what they see and hear

…it is crippling. 

My love for my husband is so deep and so selfless that on his bad days, I wish he were already with Jesus and not having to suffer through the wait.  And on his decent days, I feel guilty for wishing he were with Jesus for the three days before.  This roller coaster is making me nauseous.  I trust God’s timing.  I trust God’s plan.  And I also, at times, find myself mad at the process and confused by the whole situation. 

So there you have it; the current bad and ugly truth of my life.  Thankfully, God’s mercies are new every morning. 

And evidently, so are my emotions.  Wonder what new gems I'll find tomorrow? 

In the meantime, I will just keep
bringing my weariness to the One who can give me rest;  
laying my bitterness at the feet of the cross;
begging for eyes to see the blessings and forgiveness for my negativity;
and asking for His strength to fill me as I face each new day.