Tuesday, July 31, 2012

This Stage of Grief

I've always heard grief comes in stages.  I'm becoming a believer.  Just when I think I've gotten to the point where I'm able to handle the pain better, waves of grief come over me I didn't expect.  For the past two weeks it's been one wave after another.  Some of those waves are so large they knock me down.

My Mama has been on my mind constantly.  I see her in everything.  Going to visit the cemetery has become so important to me that I go into a panic if I can't find someone to take me.  I still cannot explain why it's so important to me I go.  I don't even stay that long.  I read her headstone and make sure it's not all dirty.  I look to see how the grass isn't growing very well on her grave.  I "fluff" the flowers in her vase and look around to see if I can see a color scheme I might like to do her next bouquet in.  I wrestle with the thoughts of wanting to change the flowers now verses waiting until her birthday in September.  I can hear her telling me it would be a waste of money to do it now, but my heart says money spent on flowers for her will never be a waste.  It's the only thing I can still do for her.

There are so many things I should have done for her while she was still living.  I should have insisted she gone to the doctor the day before she died.  I should have told her I loved her before I hung up the phone the last time I talked to her.  I should have gone to see her the weekend before like my gut (a.k.a. the Holy Spirit) was telling me to do.

So many "should haves" and now there is only one thing I can do.

This birthday she will spend with Jesus, and it will be the first birthday ever I'll have to spend without my Mama.  I cannot explain how much the wave of grief that comes over me when I think about that hurts.  Tears immediately start pouring out of my eyes.  You see, we share the same birthday.  I was born the day my Mama turned 21.  This year there won't be a race to see who can wish the other "Happy Birthday" first.

I dread it with a passion.

I miss her.  I had no idea you could miss someone this much.  It's the worst pain my heart has ever felt.

If your gut is telling you to call someone, to visit them or do something for them, do it.  And always make sure those you love know it.  You never know when the moment will come the chance to do it is gone forever.

This stage of grief is harder than the one before and I have no idea why.  One would think each stage would get easier, but really it just gets harder.  I think the reality of knowing she is really gone it settling into my heart more and more.  It's still sort of hard to wrap my head around, but more and more my heart is realizing she really is with Jesus.

I have to keep reminding myself there is no greater place for her to be.

Monday, July 30, 2012

18 Years and Counting

It was my senior year in high school, and I was sitting in Speech/Drama class.  My friend Lisa and I were passing notes, and she was giving me a hard time about being picky when it came to guys I would date.  She asked me exactly what sort of guy was I looking for.  As I was thinking, I looked up and saw Nathan sitting diagonally across from me.  I drew an arrow towards him, and wrote "someone like Nathan".

What I didn't know is she showed Nathan that note.  Several days later he asked me out, and I said yes.  I already had plans that weekend, and he had plans the next weekend.  It ended up we never went out.  Neither of us are really sure how that happened.

Three years later my friend Dianna was getting married, and she had a class with Nathan in college.  Somehow my name was brought up during a conversation she was having with a group in her class about her bridal shower.  She and Nathan talked, and the next day she called me.

"Hey, I know someone who wants to go out with you, but he doesn't want you to know who he is because he's afraid you'll say no."

I had just broken up with a guy who treated me terrible.  The guy before that, well he treated me pretty crappy too.  I had decided I just wasn't going to date.  I reminded Dianna of my decision.

"I told you I have sworn off dating, and I'm certainly not going on another blind date."

You see, the guy I had just broken up with was a blind date that had been set up by my hairdresser.

"Yes, but this is different.  You actually already know this guy.", she said.


"Well, from high school."

I have no idea where this came from, but I asked, "Is it Nathan Twitty?"

It was.

"Oh, he's harmless.  Tell him to call me and I'll go out with him."

A few days later he called, and that weekend we went out.

I had seen Nathan out and about since high school.  He worked at a pizza place I often went to for lunch with co-workers.  His mom told me when I was still working at a fastfood place right after graduation, he would have her go through the drive-thru just so he could see if I was there.  We would wave and say "hi" when we saw each other.  A couple of times when I would go to refill my drink he came over and asked how I was, but the conversation was always short and sweet.  When the pizza place closed, I didn't see him anymore.

Until he walked up to my door carrying a single rose to pick me up for our first date.

It was the sweetest date I had ever gone on.  He had put so much thought into every detail.  He took me to dinner at the last place we had seen each other.  It was the same building where the pizza place had been, but then it was an Italian restaurant.  He took me to a play ... "The Sound of Music" ... and after we went for ice cream.

On the way to take me home he asked, "Shall we do this again?"  Without even giving it a second thought, I said yes.

That was July 31, 1993.  The rest, as they say, is history.

We saw each other every day after that, and spent hours talking, either in person or on the phone, about anything and everything.

November 4, 1993 he picked me up for lunch and took me on picnic.  In 46 degree weather, sitting on a blanket by the lake, he asked me to marry him.  Even though it had only been a few months, I knew he was the one I was supposed to spend the rest of my life with.

July 30, 1994 in front of God, family and friends, we promised to love each other forever.  We vowed to love and honor each other through every circumstance that would come our way.

Today we have been married 18 years.  Little did we know on that day the struggles we would have to face, nor did we realize just how much we truly did love each other and how through those struggles our love would grow.

Nathan is the most amazing man I know.  My Mama was a litmus test for people's character.  I don't know how she did it, but she could tell you not long after meeting someone if they were trustworthy or not.  I don't ever remember her being wrong.  There were so many times we disagreed about someone, sometimes for years, but in the end her warnings proved to be true. Not once, not to me or anyone else that I am aware of, did she say anything negative about Nathan.  I actually would accuse her of liking him more than she liked me.

I don't deserve Nathan, but I am so grateful to have him.  I am so honored to be his wife.  Nathan is honorable.  He's a man who is honest and trustworthy.  He is faithful and longsuffering.  He has shown me so much grace and mercy when there were so many times he easily could have walked away.  He has been quick to forgive for so many stupid mistakes I've made.  From the first day I got sick, he hasn't left my side.  He has spent so many nights sleeping in a hospital chair beside my bed.  He took 3 months off of work to stay home with me so I wouldn't have to go to a rehab center.  To do this day, he takes care of me.

He always there.  And as my brother pointed out once, just having Nathan there makes you feel like everything is going to be okay.

He's the father to our girls that I wish I had when I was growing up.  He loves them unconditionally and has a gift of embarrassing them.  He's the first to rise up to protect and defend them.  Nathan is a calm, easy going person, but you don't want to be the person who does something against one of his girls.

Most of all, he loves Jesus.  It because of his love for Christ, he's all of those things I've pointed out.

I love you, Nathan.  More today than I did yesterday, but not as much as I will tomorrow.  Thank you for loving me, and wanting to grow old with me.  Happy 18th Anniversary!

Saturday, July 28, 2012

My Heavy Heart

This past week my heart has been so heavy.  The grief has been intense.  My mind has been focused on my Mama a lot.  So much so that I have dreamed about her every night.  I never knew it could hurt this much to miss someone.  My heart has hurt greatly for almost 25 years over loosing my Nannie, but loosing my Mama is much more painful.

I was responding to a Facebook invite my aunt had set up the other day, and I noticed in the sidebar a list of suggested invites.  My Mama was at the top of the list.  Hot tears started pouring out of my eyes, and I slammed my computer shut.  It's not fair.

I honestly don't know how people survive loosing someone they love so much without Jesus.  And I can't imagine not knowing ... I mean being as assured as I possibly can be ... that my Mama's is with Jesus.  The grief would be unbearable.  The only way it's bearable for me is because of Jesus.  It's only because of Him I can have moments where I smile or times I can enjoy with my family and friends.  I still have to "pretend" I'm okay a lot.  I've learned it's easier to fake a smile than to have people avoid you because your doubled over in pain.

Last Saturday I had a long conversation with my uncle, and he reminded me that if she were given the choice to come back she would choose to wait for us with Jesus.  I know he's right, but my selfishness wants her here.  I know He loves her far more than I have the ability to love anyone, but  I want my Mama back.

I long for Heaven.

Wednesday, July 25, 2012

He Grabbed Me Up

When I looked at the calendar yesterday morning the first thought that went through my mind was, "It's was four months ago today we buried Mama."

My eyes began to sting and my nose began to burn.  Before I realized it my gown was wet and snot was running where I had cried so hard.  Not a pretty sight, but it's an all too familiar one.

Today is week 17.  I still don't understand how my heart can hurt as if this is the Wednesday she died, yet also feel like it's been years since I last heard her voice.

It still doesn't seem real, but the overwhelming pain in my heart reminds me it's true.  She's gone.  Forever.

The pain has not lessened.  My heart still hurts to the core of my being, and is as raw as the day it happened.  Tears constantly hinge on the edge of my eyes just waiting to fall at any moment.  I would say I handled it better some days than others, but that would be a lie.  The truth is, I can't handle it at all.  The pain is way too intense, and my heart is so heavy.

I'm also struggling with loneliness.  A loneliness that at times becomes all encompassing.  I know that sounds weird.  I am surrounded by people who love me, but even though I know that is truth, I feel all alone.

In the first few weeks following my mom's death, people were constantly asking what they could do to help.  Nathan carried in stacks of cards from the mailbox every day.  My phone was either ringing or alerting me to a text message every few minutes.  I would open my email or Facebook account and find messages from friends full of promises to be there for me.  The oath my family took to stay close to each other, to get together more often seems to have already been broken.

Where did everyone go?

Now, I know all I have to do is pick up my phone and dial any of many numbers and the person on the other end would come running.  I know that I have many ... many ... friends who would do whatever they could to ease the pain.  I know this to be true because it's happened time and time again.

But it doesn't always feel true.

When I wonder where everyone went, I'm also including the Lord.  He has promised to never leave me.  Never.  I often feel as if He has left though.  Left me in this awful pit of pain I can't seem to get out of.

But then I think of Peter and how when he took his eyes off Jesus he began to sink.

Peter said to Him, “Lord, if it is You, command me to come to You on the water.” And He said, “Come!” And Peter got out of the boat, and walked on the water and came toward Jesus. But seeing the wind, he became frightened, and beginning to sink, he cried out, “Lord, save me!”  Immediately Jesus stretched out His hand and took hold of him, and said to him, You of little faith, why did you doubt?” ~ Matthew 14:28-31

My faith is little.  My faith is so frail.  I hate admitting that, but it's true.  If I'm going to be completely honest, my faith sometimes even comes with conditions.

Lord, as long as You keep showing me I can trust You, I will.

This morning I was reading the story of the man who brought his son, who was mute and suffering with convulsions, to Jesus asking Him to heal him.

And one of the crowd answered Him, “Teacher, I brought You my son, possessed with a spirit which makes him mute; and whenever it seizes him, it slams himto the ground and he foams at the mouth, and grinds his teeth and stiffens out. I told Your disciples to cast it out, and they could not do it.”  And He answered them and said, “O unbelieving generation, how long shall I be with you? How long shall I put up with you? Bring him to Me!”  They brought the boy to Him. When he saw Him, immediately the spirit threw him into a convulsion, and falling to the ground, he began rolling around and foaming at the mouth.  And He asked his father, “How long has this been happening to him?” And he said, “From childhood.  It has often thrown him both into the fire and into the water to destroy him. But if You can do anything, take pity on us and help us!”  And Jesus said to him, “ ‘If You can?’ All things are possible to him who believes.”  Immediately the boy’s father cried out and said, “I do believe; help my unbelief.”  When Jesus saw that a crowd was rapidly gathering, He rebuked the unclean spirit, saying to it, “You deaf and mute spirit, I command you, come out of him and do not enter him again.”  After crying out and throwing him into terrible convulsions, it came out; and the boy became so much like a corpse that most of them said, “He is dead!”  But Jesus took him by the hand and raised him; and he got up. When He came into the house, His disciples began questioning Him privately, “Why could we not drive it out?”  And He said to them, “This kind cannot come out by anything but prayer.” ~ Mark 9:17-29

Lord, I do believe, help my unbelief.  I know it's not "if" You can heal my brokenness, but "when will You".  I do trust You, but Your not doing this my way.  I don't like Your way.

That's what it comes down to.  I don't like the way God is carrying me through this pain.  It still hurts too much, and I want my heart healed now; well, actually yesterday would have worked better for me.

If it weren't for the Lord's boundless grace, I wouldn't be able to get through the next moment.  I'm not kidding when I say the pain is way too much to handle.  I can't do it.  I can't just pull myself up by my boot straps, wipe away the tears and march forward.  I can't even take my next step.  Putting one foot in front of the other is completely impossible without Him.

Where did everyone go?

I am all you need, Robin.  My grace is sufficient, and My mercy is never ending.  I haven't left.  I'm still right here, but you have taken your eyes off of Me.  When you do that, you are going to sink into the pain.

I like how The Message translates Matthew 14:31 ...

Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"

Jesus didn't hesitate to grab me up this morning, hold me in His arms and remind me He hasn't left me.  My eyes must stay fixed on Him.  In His time, He will heal my brokenness ... He's even going to heal my broken body.

And where are all of those people who made promises to me?

Well, they are just a phone call away.  But they can't give me all I need, only Jesus can do that.

Jesus has stretched out His hand, took hold of me and asked me what got into me that I would doubt Him.

Jesus Christ is the same yesterday and today and forever. ~ Hebrews 13:8

Wednesday, July 18, 2012

The Yuck Flowing Through My Heart

I was just beginning to get over having the flu ... the H1N1 flu ... when suddenly I was the sickest I have ever been in my life.  I had chemical meningitis 20 or more times while I was getting IVIG treatments, but this was far worse.  My fever was just over 105.  My body ached something awful.  Nathan and I got into a huge argument because he wouldn't let me take any more ibuprofen.  I had already taken beyond my quota, and he was trying to keep me from overdosing.  I just wanted the body aches to stop, and kept thinking, "If I just take a couple of more that'll do the trick."  I yelled, well probably more like screamed, at Nathan when he told me I couldn't have any more.

Needless to say, it wasn't one of my finest moments.

When Darryl discovered how sick I was, he sent me to the ER for a chest x-ray and to have some lab work done.  I could barely hold my head up, so in order to sit up on the gurney Nathan had to raise the head of it up for me to lean against.  The nurse practitioner informed me my fever had gone down to right at 101, and my chest x-ray was clear.

"I'm not saying there isn't anything wrong with you, but you don't look sick to me.", the nurse practitioner had the audacity to say to me!

I didn't look sick to her, therefore I must not be.

Before the rooster crowed the next morning, my phone rang.  It was someone from the ER calling to let me know I needed to come back in immediately.  I refused to go back after the way I had been treated the day before.  She told me how sorry she was that had happened, and if I would come back in she would personally take care of me.  She explained the preliminary results of my blood work had come back, and I had an infection that needed to be treated.  I still refused to go, and when she told me it was extremely important for me to be seen, I told her I would just go see Dr. Richards.

Over the next half hour there were telephone calls going back and forth between myself, Darryl and the hospital.  A lot of that is fuzzy in my mind, but I clearly remember my phone conversation with Darryl.

"Robin, you are going to the hospital to be directly admitted through the ER."

No one had mentioned a hospital admission to me.  I hate being in the hospital, so I begged him to just let homehealth give me the IV meds.  They were already scheduled for a visit that day.

In a tone of voice I've never heard before, he said, "Robin, if you don't go to the hospital you are going to be dead in 2 days."

So, I went.

When I got there they immediately took me back in the ER and within about 2 minutes the room was full of doctors, nurses, lab techs and representative from the company the nurse practitioner from the day before worked for.

You know, the one who said I didn't look sick to her.

I was septic, and they couldn't identify the strain of infection I had because it kept growing.  Every antibiotic they gave me I had an allergic reaction to, so they were scrambling to find something that hopefully the infection wouldn't be resistant to.  It took 4 days for the infection to stop growing, and by the grace of God, the antibiotic they finally settled on giving me began to work.

My perm-a-cath site was infected and since it's a direct source to the blood supply, it had caused me to become septic.  When they took the dressing off of my perm-a-cath site, it hurt so much I screamed.  It was red and puss was oozing out of it.

The blood that was flowing through my heart was infected, but on the outside of my dressing ... on the outside of my body ... I didn't look sick.  My skin and the dressing covering my cath site were hiding the yucky stuff in my body.

Just like the smile on face hides the yucky stuff in my heart today.  It covers up how much my heart really hurts.

At the beginning of worship service this past Sunday, my friend John began to play, "Wonderful, Merciful Savior".

It felt like someone had ripped off the dressing that was hiding the pain in my heart and the tears began to flow.

My friend Robyn sang this song at my Mama's funeral.  Until Sunday I hadn't heard it since that day.

As I flipped through the bulletin I noticed that we were going to be singing that song.  I was sick.  I pointed at it, and Nathan just put his arm around me.

In that moment, Nathan said a thousand words to me.

I got through the first verse, but once the chorus started I had to bolt.  As fast I as could go, I left the sanctuary and headed to the bathroom.

Thank you, Jesus, no one was in there, and no one came in while I was in there.

I fell against the wall and cried so hard my stomach is still sore.

Lord, I want my Mama back.

Just before going into the sanctuary before worship service began,  I had 3 people tell me how I looked like I was doing so much better.  I just smiled and said thank you, and then thought, "You have no idea", as they walked away.

They couldn't see into my heart.  They couldn't see the pain is still there and it grows with each passing day.

I came out of the bathroom with every intention of having someone go get Nathan so we could leave, but when I peeked in the sanctuary, he and Hannah were on stage with the mission team they had just returned from Joplin, MO with, and they were telling about what they had experienced during the past week.

Still, I wanted to leave.

But the Holy Spirit showed me I needed to be at the hospital.  The only hospital that will ever clear the yuck out of my heart.  So with blood shot eyes and a nose as red as a tomato, I went back in and sat down.  It wasn't easy.  I truly wanted leave, but the Lord had a different plan.

Today is Wednesday.  The very dreaded day of the week.  A day I'd rather spend with people I love and who love me right back.  But today, God had a different plan and I'm home alone.  It's 12:30 and the first thought that comes to mind is, "Mama will be calling in a little bit."

She won't be though.

She now been gone for 17 weeks, and it still hurts like no other pain I've ever felt in my life.  Sure I smile and laugh.  I can even have a great time with friends and family.  I can look at my Mama's picture and smile as the thought that passes through my mind says, "I love you, Mama".

But it still hurts.  And I miss her more and more every day.  The pain continues the grow in my heart, but God's grace and mercy keep me putting one foot in front of the other.  His grace and mercy allows me to truly enjoy time with family and friends.

I long for Heaven, and my prayer every day remains, "Come quickly, Lord Jesus.  I beg You to come today".

But while His plan is for me to wait, His love ... only His love ... cleanses the yucky stuff in my heart.  I never have to be concerned about overdosing on His love, mercy and goodness.

Thursday, July 12, 2012

Meeting Samuel

Last week Mary and I made plans to go visit Robyn on Monday after I was finished with my visit with Dr. Keith.  I hadn't been able to meet baby Samuel yet, and I've been desperately wanting to get my hands on that sweet baby boy.  It actually worked out for Sara to go with us too.  Hannah is currently on a mission trip with Nathan, so she didn't get to go with us.  We had the sweetest afternoon with Robyn and the boys.  It was so fun and just what my heart needed that day.

For those of you who don't know ... Robyn is one of my besties.  We've been friends since 5th grade.  We were only 10 years old when we became friends, and this year we will be *cough* 40 *cough*.

For 11 years every doctor Robyn went to see told her it was impossible for her to conceive.  She was told she would never have children.  Well, she is now the Mama of 3 precious little boys.  Daniel will be 5 in September, Joseph is 3 and Samuel was born June 5.

God blessed Randy and Robyn with three miracles.  I cannot even explain what it's been like for me to have a front row seat in watching the Lord work in her life.

They say a picture is worth a thousand words.  So here is a sample of our day in pictures.

Daniel, Joseph and Samuel

The boys and I.  These are two of the sweetest boys.

Sara with the boys.  I can't wait to get a picture with all 5 kids when Robyn comes for a visit in a few weeks.

Notice how Joseph is holding tightly to my phone.  He started out wanting to play games, but when he got bored with that, he put his photography skills to use.  He took 243 pictures with my phone.  Here is a look from Joseph's view of our afternoon ...

I love that cheesy smile!

He told me to say, "Cheese".

Joseph took over my phone, while Daniel held tightly to Sara's phone.

There are about 50 pictures of just Robyn's rug on my phone.

Samuel's burp cloth

He took about 20 pictures of himself.

If you look just above his feet you can see a foot print in the rug he took a picture of.

Daniel has the look on his face that says, "Will you stop with the pictures?"

He's such a cutie!

He wanted Sara to take a picture of the 3 of them.

Daniel playing a game on Sara's phone.

Samuel's swing.

Some of his photos are a bit blurry because he just couldn't be still and would move on to take the next picture before he finished snapping the one he was already taking.

His mommy.

Mary and Samuel

Sweet baby boy!

Robyn convinced him to let her take a picture of them.  She was trying to show him how to turn the camera around so he could see himself.  He got it!

Samuel slept just about the entire time we were there.

That was a small sample of the over 200 pictures he added to my phone. : )

I did manage to get one picture of Samuel awake, but Sara had to take the bottle out of his mouth for me to get it.

Daniel is such a great big brother!  He gives Samuel a kiss on the forehead about every ten minutes.  He says he's his best friend.

Joseph reminds me so much of Robyn's brother, Darren.  He has this bigger than life personality and is such a ham!

Robyn and I before we headed out for dinner that night.  Randy was so sweet to watch the boys, and we got to have dinner with just the girls.

This is a video I took of Robyn talking to the boys.  Joseph started telling bible stories and Daniel (a.k.a. Batman) would chime in from time to time.  It's so cute how they start blending stories together.  The ending of the video is hilarious!

It was such a fun afternoon, and it blessed my heart so much!

Wednesday, July 11, 2012

16 Weeks

It's already Wednesday again.  The dreaded day of the week.  The day I have grown to hate.

Today marks 16 weeks.

She should be calling me right now.  She would be asking a million questions about how things went at the sleep center last night.  Then she would move on to wanting to know if I saw the news last night.  She would then want to know if my laundry is caught up and lecture me on how she would make the girls do this and that.  We would move from topic to topic, and before I knew it, we would be on the phone for 2 hours.

"I'll talk to you tomorrow", would be what she would say just before hanging up.

I never thought those would be the last words I would ever hear her say to me.

She's not going to be calling me today ... or tomorrow or any other day.

That's a hard fact to swallow.

My heart is still bleeding.  It still aches to the core of my being.  I still cry a lot.  I'm sad.  I'm angry.  I desperately wish she were here.  

But I can rest.  I can rest because I know she's with Jesus.

I keep seeing the sweet picture in my mind of our pastor carrying precious Averie up and down the aisles at church on Sunday singing, "Jesus Loves Me".  I just imagine that has to be what it's like for Jesus to carry us.  Hold us in His arms as He sings to us.

The Lord your God is with you, the Mighty Warrior who saves.  He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.” ~ Zephaniah 3:17 

Sleep Study: The Next Chapter

I've just spent the night at the Sleep Center, once again.  The first time around was to see how I am breathing when I am sleeping.  This time was to titrate me on a C-PAP.

I had a super sweet girl taking care of me.  When we walked into room she asked if they had explained what I was there for this time.  I said yes, and told her I had been told my results for the sleep study were really bad.

With big eyes, she shook her head yes, and told me my numbers were the worst any of them have ever seen.  The worst they had seen was 117 and his O2 sats only dropped in the lower 80's.  Mine was 153 and my sats dropped in the lower 60's.

Nathan has always said I was a person of extremes.

She explained the type of mask she would try first.  She was going to start out with just the nasal mask because I am severely claustrophobic.

There is the "extreme" coming out again.

She wasn't sure if it would work because I was going to require so much pressure, and she might have to switch it to the mask that covers my nose and my mouth.

I just kept praying, "Please, Lord, no.  Please let this be easy."

She hooked me up and turned on the air.  She wasn't kidding ... it was some heavy pressure coming for that mask.  If I opened my mouth I felt like I was smothering.  Dr. Keith had warned me I might require pressure so high it would do that.

Talking with that thing on is not an option.

She finished up, it was lights out and time to go nite, nite.

So, I laid there thinking I was never going to be able to go to sleep with that contraption on my face.  Plus, I was hooked up to all those wires for them to be able to monitor me.  Comfortable I was not.  The more I breathed, the tighter the mask felt around my nose.  I laid there for what seemed like an hour solving the world's problems in my head, but she told me it actually only took me about 20 mins to fall asleep.  It might not have taken me that long if I didn't have this head cold and had a coughing fit a few minutes after I laid my head down.

I woke up in a lot of pain.  A LOT.  I asked to go to the bathroom (You just speak out into the air that you have to go potty and suddenly she appears.  Weird), and when she came in to unhook me she told me I had been sleeping for almost 3 1/2 hours.

That explains the horrible pain.  If I stay in the same position for very long it causes a lot of pain.  Normally I can only lay in the same position for about an hour without the pain increasing to levels I would rather not go.

After I went to the bathroom and got a drink, she hooked me back up, and I settled back in to go back to sleep.

It wasn't happening.  I was in too much pain, and I had started having some terrible muscle spasms in my feet and legs.  She had to come back and unhook me so I could take my meds.  Once I finally got settled back in the bed again, my mind went back to trying to solve the world's problems.

I woke up to air blowing hard into my eyes.  I had moved around in my sleep and somehow knocked the mask off.  I barely remember her adjusting things.  Then next think I knew she was waking me up.

It was 6:30 a.m.  She first settled me into to bed around 11:00 p.m.  It's been a long time since I've gone to bed that early.  It's been years since I've slept that much.

Years.  No joke.  Probably not since I was getting IVIG, and I had to have so much medication for the chemical meningitis I got with each treatment.

I can't say I feel wonderful today.  My body hurts from being in the same position too long and having air swiftly pushed into my nose didn't help this head cold any.

But I am hopeful.  I need to figure out a better way to deal with the pain.  Maybe a med adjustment will help.  I still can't believe I slept that many hours.

And in case you missed it, the Lord answered my prayer.  This could have been a complicated process.  The technician was expecting it to be.  It wasn't.  I was able to keep the nasal mask, and she said I didn't require as much pressure as they thought I would need.  She was actually able to lower it some from where she started.

I went to Dr. Keith for a knot behind my ear, and I ended up finding out I wasn't breathing half of the time I'm sleeping.

Like Mary said, the knot is what He used to get me to go to see Dr. Keith, but ultimately that's not why He sent me there.  Yes, I probably should have listened to Darryl for the past several years as he has tried to get me to have a study done, but the Lord's timing is perfect.  This was the time.

I am still in shock at the results of my study.  I never imagined it would be that bad.  But I know the Lord will take care of me.  It's probably not going to be in the way I want it to be, but it's going to be in the way that's best for me.

Tuesday, July 10, 2012

Unexpected Test Results

Yesterday morning was the long awaited appointment to get the results of my CT scan and my sleep study.

What a morning!

I hadn't been seated in the very full waiting room for more than five minutes when the guy who did my CT scan came to the door and called my name.  As he began to walk me past the examining room doors, I quickly realized something was up.

"Ummm ... you're not taking me back for another CT scan are you?"

"Yes, I am."

I screamed on the inside, I don't think so.

"I am not here for a CT scan.  I'm here to get the final results of the last one I had and for the results of my sleep study."

He told me to go back and have a seat while he checked on it.

About five minutes later he came to the door and shock his head no.


Then we sat for the next hour.  While Mary and I sat and chatted, I became more and more anxious to get out to there.

You see, we had plans to head to visit my friend, Robyn, and to meet her newest little miracle, Samuel.  Time was ticking, and I wanted to get on the road.

Finally I was called back ... only to wait for another 45 minutes.

His nurse discovered they didn't have the results of my sleep study yet and had to call to get them.  They hadn't even been typed up, so we had to wait until they finished the report and faxed it to them.

Patience is not one of my gifts.

Just as I was about to stick my head out the door and ask if they had forgotten me, Dr. Keith and his nurse came through the door.

He sat down and gave me the results of my CT scan.

It was normal.  The mass behind my left ear is actually fatty tissue.

Praise the LORD for that!

But then he gave me the results of my sleep study.

Let me preface this by saying, I don't even remember sleeping that much.  It seemed like I dozed for a couple of hours, and it felt like a very long night.

He told me that my results were the worst he had ever seen.  "I might have seen worse, but I don't remember if I have."


In one hour, I stopped breathing 153 times!!  That evens out to every 2 1/2 minutes.  My O2 sats dropped into the 60's.

I looked at Mary to see if I was hearing him correctly.  I could tell by the look on her face I had.

He told me most other people's numbers are around 30.

For the next 10 minutes or so he spouted off a treatment plan.  Not an appealing one I must say.

I need to be titrated for a CPAP/BiPAP machine ASAP, he told me.

Surgery maybe needed to remove my tonsils and do something to my palate because it hangs low.

And I may need a trach at some point.

I had to tell him to stop.  All I needed to know was the next step.  My heart was beating out of my chest, and I started sweating.

Mary said he was trying to get across to me how serious this really is.

Once he finished he walked me up to the checkout desk.  He rattled off a bunch of instructions to the girl at the counter about making an appointment with a pulmonologist and a follow-up appointment with him.

While she was on the phone making my pulmonary appointment, I heard him talking to the nurse manager.  He told her my appointment for my CPAP/BiPAP was urgent.  I needed to get in within the next few days and if they didn't have an opening, he needed to talk to them.

I felt like I was in a dream.  I had gone to him for a knot behind my ear that wouldn't go away, and this is what I find out.

So tonight at 8:00 p.m. I go back to the sleep center to be titrated.

I'm going to be honest, I'm scared about this whole situation.

Darryl has urged me for years to have a sleep study done.  Mary told me last night that every time she would be with me overnight she would go home and tell Darryl he needed to make me have something done.

He would adamantly tell her he couldn't make me do anything.  My stubbornness and my "I think I know better than you" attitude often gets in the way.

Ugh, I'm so full of sin!

I get it now.  I get the seriousness of my situation.

At least I don't have a malignant tumor behind my ear, and it's not a blockage in my carotid artery that's getting inflamed.  I'm so thankful for that!!

I pray the machine works, and the next step doesn't have to be taken.

Jesus, now would be a perfect time for You to come.

Monday, July 9, 2012

Sharing Jesus

Friday night I gave my testimony in front approximately 30 women at a Titus 2 fellowship with the ladies in my church.  It's not easy to sit in front of a group a women who have all eyes on you and spill your guts.  Ladies who I love and adore look mighty intimidating from that angle.  As someone said to me yesterday, giving your testimony of how you love Jesus is one thing.  However, having to share all of the hard stuff surrounding that isn't so easy.  Who really wants to confess the horrible things they've done and the ugly things that have happened in their life to a group of women?

Not me.

But you know, the Lord was so gracious, and He gave me the words to say and the courage to say them.  I don't remember most of what I said.  I asked the Lord for at least two weeks to show me what He wanted me to share, and as I sat down to begin talking, I still had no clue what that was.  I had to trust Him and just open my mouth.

What I want more than anything is for those ladies to have walked away that night seeing the grace and mercy of Jesus.  I want them to see we serve a God who redeems all things, and how truly loving and forgiving He is.  I pray He was glorified Friday night.  I pray they saw Jesus and not me.

Yesterday my sweet friends, Deborah and Ian, had their little girl baptized.  Averie's eyes did not wander from Caleb as he walked her up and down the aisle singing "Jesus Loves Me" after he baptized her.  It was one of the most beautiful pictures I've ever seen.  As I watched Averie lock eyes with our pastor as he carried her around the church singing "Jesus Loves Me", I began to wonder if that's what it will be like when we see Jesus.

Will we be so mesmerized we can't take our eyes off of Him?

We should be now.  Our eyes should be so fixed on Jesus that we see Him in everything.  Even the hard stuff.

Watching Caleb carry her in his arms as he sang of the love of Jesus, I saw a picture of what it looks like for Jesus to carry to us.

It still brings tears to my eyes thinking about it this morning.  The Lord has carried me through so much in my life.

As I sat there yesterday I began to pray, "Lord, give Averie the want to want You.  Draw her to You.  Give her the desire to turn her heart over to You as she grows."

Maybe one day Averie will sitting in front of a group of ladies in our church sharing her testimony.

Friday, July 6, 2012

Suffering For A Little While

I opened up my email this morning and discovered this ...
Joni and Friends Daily Devotional
 July 6, 2012
Dear Robin,
Two Lenses
Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to the children of men.
Lamentations 3:32-33

The Lord took no pleasure in my broken neck. Like any father who has compassion on his children, it pained His heart to see me hurt. Yet at the same time, it pleased the Lord to permit my accident. My spinal cord injury was something He sovereignly designed in and for His good pleasure.

God's ways are so much higher than ours, He has the capacity to look at the world through two lenses - through a narrow lens and a wide angle one. When God looks at a painful event through a narrow lens, He sees the tragedy for what it is. He is deeply grieved. In Ezekiel 18:32 he says, "I take no pleasure in the death of anyone." God feels the sting in His chest when a child dies of cancer or a husband is killed in an accident. However, when God looks at that same event through His wide angle lens, He sees the tragedy in relation to everything leading up to it, as well as flowing out from it. He sees a mosaic stretching into eternity - it is this mosaic with all its parts, both good and evil, which brings Him delight.

In the span of a single verse, the Bible asserts "the Lord brings grief," yet "He does not willingly bring... grief." God tried this out on Himself. He willed the death of His own Son, but He took no delight in it. God saw how Jesus' death would demonstrate His incomprehensible mercy, as well as bring His people to glory. God often wills what He despises because - and only because - He has a wide angle view on the world.

Lord, too often I have only a narrow-lens view of my world - give me your perspective and may I rejoice in the beautiful mosaic I will one day understand.

Joni and Friends

God's timing is always perfect, and this is just one of a billion examples of how He gives us what we need at the exact moment we need it.

Tonight I am giving my testimony at a Titus 2 fellowship the women in our church are having.  All week I have prayed and asked the Lord to show me how much I need to share, and how much I need to leave out.  I only want to focus on the parts that will show how glorious, loving, gracious, merciful and forgiving He is.

It's all about Him, not about me.

I still have no clue exactly what He wants me to share.  If I focus too much on how I have no clue of what I'm supposed share, I get all knotted up in my stomach and start getting anxious.  This is just another one of those times when I'm going to have to walk in faith.  If He gives us grace for each and every moment, at the exact moment we need it, surely He will give me the exact words He wants me to say.

This devotional helps answer a question I've been asked many times.  I don't believe in coincidences.  I believe in a sovereign God who ordains all things.  A God who has a plan for every circumstance in my life.  He's my Redeemer who will use everything I've ever done, every experience in my life for His glory and my good.

So it's no coincidence this devotional popped up in my email this morning.  God ordain it.

I do know that part of my testimony will include being diagnosed with CIDP.  I'm just not sure what parts of it or how much I need to focus on it.  I do want others to know God did not make me sick.  He's not the one who struck me down and caused this long struggle for the past 4 1/2 years.  Nor did He cause all of the other yucky stuff in my life.

However, He did allow it.  Honestly, that's hard to swallow sometimes.  How could my Heavenly Father allow horrible things to happen to His children?

I don't have an answer.

But I do know that hard things in my life are the things that have shown me how glorious He is.  I've experienced His mercy and grace.  I've been forgiven of horrible things.  I know His love for me.

I know it sounds crazy.  On one hand I don't understand how He can allow devastation, but on the other hand I see His glory.

The best way I know how to explain it is this ...

My depravity deserves hell.  But He loves me so much that He sent His Son to die for my evil, wicked sins.  He paid my ransom.  He rescued me.  He saved me from hell.  Instead of burning for eternity, like I deserve to do, I will spend my eternity with Him.

That's mercy like no other.  A forgiveness I will never fully comprehend.

And because He loves me, He gives me the grace to endure the hard things in this life.

And He uses those hard things to show me more and more of His love for me.

God doesn't delight in our suffering.  He doesn't want us to suffer, but because we live in a fallen world we're going to hurt.  Paul tells us that in this life we will have pain, we will have tribulation.  But as we suffer, we will understand more and more of the sufferings Christ.   The suffering He chose to endured for us, and it's through our suffering we become more like Him.

"When God looks at a painful event through a narrow lens, He sees the tragedy for what it is. He is deeply grieved. In Ezekiel 18:32 he says, "I take no pleasure in the death of anyone." God feels the sting in His chest when a child dies of cancer or a husband is killed in an accident. However, when God looks at that same event through His wide angle lens, He sees the tragedy in relation to everything leading up to it, as well as flowing out from it. He sees a mosaic stretching into eternity - it is this mosaic with all its parts, both good and evil, which brings Him delight."

In 1 Peter will are told that although we may suffer for a little while ...

I asked in Sunday school last week why uses the phrase "for a little while".  His "little while" and mine don't match up.  It seems like my suffering has lasted a long, long time.  It was explained to me he is using "a little while" in comparison to eternity.  I suppose if you look at it that way, this is such a short time of suffering compared to the glory that is yet to come.

I long for Heaven.

Come quickly, Lord Jesus.