Living With Grace

It is a struggle, as I sit down to write this evening, to form all of my thoughts into a cohesive format.  This day...oh, my.

It started as a regular day with regular cinnamon toast.  Then Nurse came.  Ten minutes into her visit, I knew I was going to throw up, and promptly did so.  Maybe I have not made it clear here before, so I will do it now:  I hate vomiting.  It's for sure in my top 3 things I despise.  Right after I returned from brushing my teeth, Nurse re-introduced the prospects of "assistance equipment," including an oxygen tank and a wheelchair.  She first introduced the ideas during her visits last week, when I quickly and distinctly turned her down.

I lost the battle today.  I am now the horrified owner of a WHEELCHAIR, which you will NEVER see me in.

She left, and then I threw up twice more.

THEN, my sweet Goliath came to me to confess that he "accidentally" read something on my iPad that was hurtful to me, so it was also hurtful to him.  He was full of questions and a little bit angry.  That caused me to ask more questions and be a little a lot angry all over again.

Stupid day.

What I really want to do here, though, is tell you about last night.  This conversation happened:

Goliath:  So Mom, you know how you have that cancer?

Me:  Yes.  Yes, I do.

G:  Well, I need to talk to you about something.  I'm not sure if it's wrong or not, though.

Me:  You can tell me anything, buddy.

G:  You know I would do anything for you, right?

Me:  Yeah....

G:  Every night when I go to bed and I say my bedtime prayers, I pray for you to not have to have cancer anymore.  And a lot of nights, I pray that God would just give me your cancer instead.  You know, so I could be sick instead of you.

Me:  (Solid, streaming tears)

G:  Is it wrong for me to pray that, Mom?

I think at that very moment I understood for the first time how sad my parents must be.  Because the very thought of my baby having to go through this horrible, wretched disease made my head spin and my heart nearly split in two.  At the very thought.  

I somehow managed to keep my head on and I dried up my tears.  I told my precious baby boy how God doesn't want bad things to happen to us, but they do because we do not live in a perfect world.  I reminded him how God wanted perfection for us (remember the Garden of Eden?), but sin messed that all up.  I said to him that God has a good plan and great ideas for all of us, and as Christ-followers, one of the hardest things we have to do sometimes is to BELIEVE that is true and TRUST Him to see it through.  Yes, even if our mom has cancer.  Yes, even if it turns our lives upside down.  Yes, even if it sucks.  (I allow this boy 'o mine to say the word "sucks" only when it is used in combination with the word "cancer."  True mom story.)  

Then I said to Goliath that while I don't think he's necessarily wrong to pray this particular prayer, that I wish he wouldn't do it anymore.  Simply because I can't stand the thought that God could choose to answer his prayer.

No more than I can believe that I gave birth to a person who would do anything for me.  He's only twelve--and I totally believe he would do it if he could.  Grace is getting something you totally don't deserve...and if being this kid's mom isn't grace, I don't know what is.

Limitations

This is a weird time in my life.  I've tried to think of other, better words.  Lonely.  Scary.  Sad.  Weird.  I am working on creating--and accepting--a new normal for myself.  This week, I've resigned from one of my last just-for-me activities, a volunteer position at Goliath's middle school.  I simply don't have the energy or the physical stamina, to go and push buttons on a copy machine.  It's really unbelievable to me.  

I feel a little lost.  I feel easily replaceable.  It truly stuns me when I go out during the day and I see the little old man down the street preparing the soil in his gardens for the spring planting.  Or when I hear the stories from my friends of what they've been up to, or notice the neighbors coming and going while I sit in the front room.  Really....I don't expect that the world will continue to go like it always does--because I'm not in it.  My husband is slowly but steadily taking over a lot of my stuff at home.  My mom, and this week my dad, has been here taking care of me and doing a lot of the work.  My darling housekeeper is even coming two days a week instead of her usual one Tuesday to help out.

While I am so appreciative of these people who love me and are helping with the transition process for my cowboys, my old self wants to jump up and do it all--just because it is mine to do.  I want my mom to have her life back, my husband to just go to work and leave the running and the scheduling and the cooking to me, and I want Amparo to...well, I honestly don't mind her coming twice a week. I've finally found the solution to the laundry problem!!!

Mostly, I want my life back.  I'm not angry or anything.  Just sad.  Because I had this great world made out of kids and noise and food and preschool and friends and shopping and taking care of things and church and activity and sharing and being a part of people.  I mattered.  And it was meaningful and sometimes messy, but wonderfully beautiful life.  Now I have....what?  A good bed and a quiet room and a few pairs of pajamas that I wear all the time.  It pales in comparison.

A friend posted these words on Facebook last week from Jesus Calling:

"Thank Me for the conditions that are requiring you to be still...Instead of resenting the limitations of a weakened body, search for My way in the midst of those very circumstances.  Limitations can be liberating when your strongest desire is living close to Me...My strength and power show themselves most effective in weakness."

The day I read that, I wrote this in my journal:

"It's hard to be thankful for these conditions.  I overdid it yesterday, and I paid for it today.  It's so frustrating!  Why can't I have at least a semi-regular life where I can do at least a few normal things?  Can my limitations really be liberating???  Strong word.  Oh, for grace to trust Him more!"

I want to be thankful.  I really do.  Being still is hard.  Being weak is harder.  I know God is in this new chapter.  But the quieter it gets, the harder it is to hear Him.

Oh, for grace to trust Him more.

Insomniac Blogging: Thirteenth Edition

1:41 a.m.  Indescribable leg pain has me wide awake.  My hospice friends say the pain is most likely caused by tumors pressing on nerves in my legs and hips.  Can't think of a better reason or time to blog, can you?

--This is my newest prized possession:

I am reading it cover-to-cover, music-nerd style.  I have a long history with the hymnal, starting circa 1980, when I needed something to do to pass the time during the sermon.  When I was growing up, before the giant screens hit Baptist churches all across the great South, we actually used the hymnal as part of the church service.  In my growing-up hymnal, I knew that "Holy, Holy, Holy" was #2 and "Victory in Jesus" was #89.  My new red hymnal is a little different, but I am having a fabulous time singing my heart out in bed (and yes, Kelvin, practicing the Hallelujah Chorus)!  Smile.

--Campbell's advertises 32 feet of noodles in one can of their chicken noodle soup.  This grosses me out so much!  We will not be eating CNS at our house anytime soon.

--Baby:  Mom, which super power would you rather have?  Flying or web-slinging?

Me:  Flying, for sure.

Baby:  Me, too!!!  (...happily skips away....)

--The weather lately has been crazy.  I know it doesn't compare to my friends up north, but I am pretty tired of winter, and wish it away quickly.  This little guy (given the name "Olaf", of course) turned up on the hood of my car last week with the latest snow/ice/stuff that fell from the sky.

--Baby has been on a roll lately.  He makes me laugh like no other.  This happened while he was working on his latest rainbow loom creation:

Goliath:  How do you make that?

Baby:  You'll understand when you're older.

--Later on today (much later), the Child Life Specialist that works for my hospice company is coming over for her first meeting with my cowboys.  I've talked to her on the phone several times, and while I find her to be somewhat chatty, she's certainly pleasant enough.  I hope the boys think so.  I expect that their little guards will be WAY up, talking to a stranger about Mom's Sickness.  It's a meeting that I think is necessary, but I'm not looking forward to it too much.

--

This is a little snapshot of my sweet nephew Truett.  He's two months old now...isn't he great?!?

--Hubby's sister is on the countdown to her little one!  My new niece should be here sometime in the next 3ish weeks...Audrey has been texting me pics of the adorable clothes, shoes, and nursery that is waiting for that sweet baby girl.  The cuteness is almost more than I can handle.  So excited!!!

--While we're on the subject of being an Auntie...

Seester is having another girl!  Reese the Niece is going to be a big sister! 

--Buck and Grandmama, this picture is for you:

The cowboys opened their bank accounts, and they say "Thank You!"

--I think that Valentine's Day is a "holiday" that Hallmark made up to boost sales.  It's silly, if you really think about it.  We should be expressing our love for people each and every day!  Before you go off thinking that I am a big V-Day grinch, you should know that each night this week I am writing on paper hearts something I like about each of my boys and hanging them on their bedroom doors.  When they wake up in the mornings, they are eager to find their new heart and see what Mom really thinks of them!

--It's tough to make blogging interesting when I never go anywhere or do anything.

--Goliath attended his first Revo weekend (aka Disciple Now) a couple of weeks ago.  I have had a hard time with the idea that I am old enough to have a kid who is old enough for Revo!  DNow weekends were my favorite growing up!!!  Well, except for that one year when my foot was run over by the car I was riding in for the scavenger hunt.  That was a downer!  I have been so excited for my little boy--who isn't so little anymore.

--I am worn out from my groaning.

All night long I flood my bed with weeping 

and drench my couch with tears.

My eyes grow weak with sorrow;

they fail because of all my foes.

Away from me, all you who do evil,

for the Lord has heard my weeping. 

The Lord has heard my cry for mercy;

the Lord accepts my prayer. 

                                         Psalm 6:6-9

--I am going to try to go back to bed now.  Goodnight.  I'll see you tomorrow!

The Day I Told Them the Truth

Dear Cowboys,

I feel like although I desperately want to forget it ever happened, I need to commemorate in a small way the Day I Told You The Truth.  One minute, we were a regular family of five playing a board game.  The next minute, we were a group of broken-hearted people.  The game lay forgotten for hours, until I pulled myself together enough to clean it up.  I don't think we'll be pulling it out to play for quite a while.

There is really  no good way to break terrible  news to the people you love the most.  I struggled for days with what to say to you, and all I could really think was, "This is so unfair.  This is so unfair."  Every interaction with you became all the more precious, because I knew that you were walking around in a bubble, of sorts.  A bubble where your little world was intact and safe...a bubble that I was going to burst.

And burst it I did!  I'm so sorry, heart boys.  I'm so very sorry that we live in a world that is not fair.  I'm so sorry that after all this time and effort, I haven't been able to beat this thing.  I'm sorry that I can't stay with you.  I'm sorry that I couldn't protect you.

I will never forget your blank looks.  I was telling you the awful truth, but doing my best to avoid using scary words.  I don't know if you really did not understand, or if you just didn't want to know.  Whatever it was, I knew I had to be straightforward.  So I started saying things like "not much longer," "dying," and "not going to get well."  It felt like plunging into a freezing cold body of water.  I couldn't seem to get enough air, and there was no way to go back and undo the huge jump I had taken.

Oh, loves.  Your sweet faces were almost too much.  I wanted to reach out and touch you...hug you...comfort you, but there was no room for that.  The closer I moved to you, the farther you moved away from me.  It was almost as if my physical presence was too much for you  One of you moved to Daddy's lap.  One of you continued to stare at me, as if you didn't even know me.  One of you got up and simply walked out of the house.  I expected different reactions from each of you, as God made you so wonderfully different.  I was not prepared for such dramatic responses.

In a weird way, I was touched.  Your strong reactions definitely showed me that you love me.  The news I was delivering was not easy, and you demonstrated that you were hurting.  I a m crazy-thankful for the intense feelings you have for your mama, because they mean that I matter.  The Monster has had a way of making me feel inferior in the worst ways, but you three never fail to bring out my best.

I guess that's the key.  There is no doubt that I was created for this.  There are lots of other things I do, people I know, places I go, identities I have in this life.  But all of them pale in comparison to being your mom.  There is nothing else I want to do.  Being your mom makes me a better person.

We will make it through this, my sons.  I hate--HATE!!!--that you are suffering because of me.  Because of my sickness.  Not a single days goes by that I don't pray for physical healing so you can have the mom you deserve to have.  Not one night do I fall asleep before I've begged God to guard your hearts and pave your ways.  Not one.

As hard as it is to understand (I don't fully understand it myself), I want you to KNOW beyond a shadow of a doubt that God is good.  I do not believe that God caused my cancer, but he did allow it.  He is still good, and He loves you even more than I do.  Cling to that truth with all that you have, babies.  I am.

And let's hold on to one another.  Whatever time I have left to be with you, I want to be meaningful time.  I want to soak up every delicious minute of laughing with (and at) you.  I want to create beautiful memories for you, even if we have to hurry up and squeeze all of those memories into a short time period.  Let's do it.  Let's live big and love bigger.  I already love you all so much. 

With my whole heart,

Mom

Sovereign

Good news first:  Hubby has a job!  There is a whole back story of an interview, a staffing recruiter who dropped the ball,  a prayer time where the two of us petitioned the Lord and honestly poured out our hurting hearts, and then a whirlwind 24 hours of contacts and circumstances that only our good, never-lets-go God could have orchestrated.  He starts on Monday.  His first paycheck will come in at just about the time we expect that the "reserves" will run out.

Huh.  Just in telling you that mini-story, there is light shining through the darkness that has been this day.  I actually intended to pour out my sad, hurting heart again here to you this afternoon.  I meant to tell you about pain that refuses to be managed and the gray, Eeyore-ish cloud that was above my head when I woke up this morning.  I wanted to tell you that I cancelled a coffee date with a friend and I have let my phone go to voice mail because I simply couldn't get past myself.  I intended to tell you that I haven't even changed out of my pajamas today, and if I were to be really honest, I would have confessed that I could not wait until the cowboys left for school this morning so I could get on with the business of feeling sorry for myself.

Deep breath.

I flipped open my laptop to do just that, and Hubby said, "Oh--are you going to write about the job?"

I didn't tell him that his brand new, answer-to-many-prayers job wasn't even on my radar.  I simply replied, "Of course!"...and I acted as if that had been my intention the entire time.

Huh.

It's a weird thing about being diagnosed with a terminal illness...your perspective changes almost instantly.  I'm not talking even about the initial diagnosis.  For seven years now, I have had some treatment up my sleeve.  There has been a "next thing," something else to try--some reason to believe that certainly, surely there was no way that God was going to let me die.  No, it's the part where there is no more medicine or technology or earthly intervention that can fix it.  The part where the doctor looks you straight in the eye and says, "I'm sorry.  There is nothing else to do."  I've always seen the world through pretty black-and-white lenses.  It's one of the best things about me, and it can also be one of the worst things about me.  But now, almost overnight, my perspective has been even more narrowed.  I just want to get straight to the bottom line.  Only a few things really matter, quite a lot of other things don't matter much at all.

People matter.  Families matter.  Time matters.  Jesus matters.

It's also super-easy to forget the things that matter and to self-focus.  It is, after all, ME who is sick.  I am the one who has to deal with stuff no one my age should have to think about:  hospice services, wills and other legal documents, funeral arrangements.  Sometimes my pain can be managed, other times it is unbearable.  Nearly everything I do requires hard work:  showering, helping with 4th grade fractions, explaining my decisions/feelings to everyone.  My life has been turned upside down by this wretched Sickness.

( Quick story:  When Goliath was three, Seester and I had a garage sale at our parents' house.  While we were working ourselves to death in the Houston hellish inferno weather, Goliath and Abby Dog were watching us from a window.  Thus, my small son witnessed the patrons who wheeled his tiny bicycle out of my parents' garage and tried to buy it from us.  His comment to his Nana:  "Those are wretched, wretched people!"  That is how 'wretched' came to be one of my very favorite words of all time.)

"These are uphill, into-the-wind challenges you are facing.  They are not easy.  But neither are they random.  God is not sometimes sovereign.  He is not occasionally victorious.  He does not occupy the throne one day and vacate it the next.  "The Lord shall not turn back until He has executed and accomplished the thoughts and intents of His mind" (Jeremiah 30:24).  This season in which you find yourself may puzzle you, but it does not bewilder God.  He can and will use it for his purpose."  --Max Lucado, You'll Get Through This

It's not about me at all.  Some days, like today, I need to breathe deeply and take a few steps back in order to get a clear picture.  This Sickness--this life--is not at all what I thought it would be.  I didn't plan on this or want this or even see it coming.  But my uprooted plans and my changing circumstances do not change who God is.  Not one little bit.  He remains the same, whether I have a "good" day and I feel like my old self, or a bad day, and I barely manage to brush my teeth.  (Hmmm...did I brush my teeth this morning?)  He is sovereign.  He is good.  He intends great things for me, and he is determined to see them through to completion.  There is comfort in that for me.

Truth be told, I've hated this day.  It's dark out now, and I will be glad to go to sleep and put it behind me.  Tomorrow, my new hospice nurse is making her first official visit.  I'm not sure I'm exactly looking forward to that either, but I am certain that my Jesus has already gone ahead and paved the way.  Just as he made provision for Hubby's new job, he will take care of this new chapter of the journey.

Don't you wonder how people who don't have Jesus get through life?  I think about that all the time.  My darkest days are still lined with victory.  I hope that you know him, friend.  I am so grateful that I can have hope to fall back on when the days are overwhelming.  I'm so thankful that all the pieces of my life are in his hands.  Tomorrow is a new day.  Great is his faithfulness.

Not Forgotten

Life for the past 9 days has been a crazy roller coaster ride.  I alternate between bouts of tears and moments of peace.  I have done my best to balance my  need to be with friends and loved ones with my almost insatiable desire to be alone.  I have read my Bible and I have heaved huge, you-don't-know-what-you're-doing sighs at God.  I have laid in bed and I have gone to Target.

I have also done quite a bit of worrying.

It wasn't too many weeks ago that I told you that my husband had lost his job.  Truth be told, it was a terrible way to end a terrible year...and a terrifying way to begin a new one.

I suppose it goes without saying that we need him to be working.  Insurance alone is absolutely necessary (and crazy expensive).

He is looking.  He has made some contacts, and had a few interviews.  So far, though, nothing too solid or promising has come his way.

We paid the January bills, and then we started crunching numbers.  Every which way we trimmed it, there were more bills than money.

And so I worried.  I despaired.  I fretted.  And yesterday, I threw a pity party for one:  ME.  I sat on my comfy bed in my warm house in my clean, soft pajamas, and I used my computer to read about hospice services.  And I cried.  Goodness, did I cry!  Finally, after a couple of hours, I slammed my laptop shut and I said to God only three words:  "Where. Are. You.?????"

This afternoon, Baby brought in the mail.  He likes to sort it into five piles:  Hubby, Me, Goliath, Little Middle, and his own.  (Today, his and Goliath's piles were empty, but Little Middle scored a hunting magazine!)  When he ran back outside to play, I went through the stacks again.  Bill, bill, W-2, advertisement, sweet card, sweet card, more bills....and an envelope.  Curiosity got the best of me and I opened it.

Inside that ordinary-looking envelope was a check.  Are you sitting down, friend?  It was a check payable to Hubby for the exact amount that we need to make our next mortgage and insurance payments.  THE EXACT AMOUNT.  To the dollar, what we had discussed and agreed that we need.

God was there.  He has been working, even as I have worried.

We are not forgotten.

I collapsed into a chair, and with fresh tears streaming down my cheeks, I called my husband.  I told him, and he simply said, "Praise God."  

Friends, we do not know where the money came from.  All we know is that our very real God met our very real need with a miracle in the mail.

Isn't that just like our Lord?  To show up in an unexpected, unusual way to prove that his promises are 100% true?

So many things remain unknowns in my life.  There are inquiries to be made and caregiver interviews to be conducted.  There are details to be attended to and decisions to be made.  There are unthinkable conversations to be held with my three little cowboys.

But my question from yesterday has been answered :  "Never will I leave you; never will I forsake you." (Hebrews 13:5)

I still have goose bumps on my arms, and I'm sniffly from crying.  But my heart...oh, my heart is refreshed.  No doubt that could have happened without such a blatant miracle.  I am so incredibly thankful.  Thankful for the miracle in the mail...thankful that I belong to a God who loves and provides...thankful that I am never beyond his reach or outside of his care.

We are not forgotten.

"Are not five sparrows sold for two pennies?  Yet not one of them is forgotten by God.  Indeed, the very hairs of your head are all numbered.  Don't be afraid; you are worth more than many sparrows."  Luke 12:6-7

All I Can Say

Lord, I'm tired.

I have fought this Monster for a long time.  Seven years.  Nearly the entirety of my Baby's life.  I have had surgeries.  I've been hospitalized multiple times.  I have done chemotherapy...five times.  I lost my hair, my eyebrows, and my eyelashes.  I've given up my dignity and my spirit has been crushed.  I endured radiation as long as I could.  My skin has been burnt to a crisp.  I've traveled the country, made countless appointments, and researched until my eyes were crossed.

Lord, I'm so alone.

No one understands--really understands--what it feels like to be me.  I have an army of friends and family who have walked with me and stood in the gap for me.  But nobody fully can understand the fear of laying on that CT scan table over and over again, month after month, year after year.  No one else can really identify with that feeling I get in my stomach while I wait for the phone to ring with news--that is always bad.  No one sees the way people look at me with pity or worse, look at my children.  No one but me can read the precious cards that come in the mail that all say, "I am praying for healing,"...and then wonder why God isn't answering that prayer.

Lord, the dark is creeping in, it's creeping up to swallow me.

God and I, we've stayed up a lot of nights together.  Seven years equals a lot of insomnia.  There have been nights where I've cried, nights where I've begged, and nights when I've tried to ignore Him altogether.  (That never worked out great for me.) We've had days, when I've been alone in bed, and I could literally feel the disease--the darkness--moving closer.

I think I'll stop, rest here awhile.

I had an appointment with Dr. F this week.  I was very clear as I explained to him how I have been suffering.  I told him how radiation has made me SO UNBELIEVABLY SICK, and how I feel like I made a deal with the devil by agreeing to do it.  I am weak, and crazy tired.  I calmly listed out the symptoms I am experiencing, and then sat back, swiped at the frustrated tears falling down my cheeks, and listened as my entire life changed...again.

It is time, he said.  

And this is all that I can say right now.

I am sick because of the progression of the disease.  I have used up all of the treatment options, and there is simply nothing else to do.  He is recommending that we start looking at hospice.  He doesn't suggest that for patients unless he can estimate that the remaining time left to live is six months (or less).

Lord, didn't you see me crying?

I was barely aware of the tears that persistently fell.  I hung on every word that Nurse Allyson spoke about hospice:  where to look, what to ask about, how it works.  I nearly missed my sweet Dr. F, out of the corner of my eye, reach for the Kleenex box.  It took me a moment to figure out that he was crying, too.

And didn't you hear me call your name?

It ended with Dr. F just asking me to let him know what I decide.  When I give the green light, he and Nurse Allyson will go to the ends of the earth to help me find the right people, get the right meds, and be as comfortable as possible.  They both hugged me, and I walked out of there, stunned.

Of course, nothing that he said was a real surprise.  I think I felt it in my body long before I heard the words.  There is simply a bit of shock value to hearing someone verbalize such absolutes.  

Wasn't it you I gave my heart to?

Six months.  Or less.

I wish you'd remember where you sat it down.

There is still the idea of the clinical trial at MD Anderson.  It is Dr. F's belief (and I have no reason to doubt him) that the trial would not result in any significant extension or quality of life for me.

There are decisions to make.  Many hard decisions.

And this is all that I can say right now.

And this is all that I can give.

And this is all that I can say right now,

And this is all that I can give, that's my everything.

I've walked with Jesus for a long, long time.  I don't claim to know everything, or to understand why he does what he does.  Not by a long shot.  As the darkness creeps closer, I have to dig deep to get back to what I do know is Truth:

1) God loves me.

2) God will take care of me.

3) God is always in control.

These are The Three Things that I have taught my boys.  The four of us have recited them over and over again until we were red in the face and they were rolling their eyes at me.  But The Three Things have never been more important than they are now.

This is all that I can say right now.

"Yet I am always with you; you hold me by my right hand.  You guide me with your counsel, and afterward you will take me into glory.  Whom have I in heaven but you?  And earth has nothing I desire besides you.  My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  Psalm 73:23-26

Yes, that's my everything.