and just like that... Rigg is 5.



Today is Rigg's 5th birthday.

Something in me just doesn't believe it. And, yet, the calendar says it is June 19th 2014.

Well, that and Rigg himself has been counting down the "dark naps" (nights/sleeps) for what seems like decades... so I guess the reality is, I have a five year old.

Rigg isn't big on cuddling. That's Ryder's gig. But Rigg loves his daddy. He always has a nice big hug for his daddy. 

 This year he saw the ocean for the first time and has been talking about it ever since. He loved standing in the waves and watching the water climb up his legs... but mostly he loved digging in the sand. So many holes... and always room for more, a little boys dream.

 

I'm trying to impress upon Rigg the importance of being a big brother. He does not yet take the job very seriously, however there are moments when I look over and see him patiently showing Ryder how to work a game or how to build a tower.

It is a prayer of mine that my sons are close friends all throughout life. I pray they learn to appreciate and enjoy each other. Rigg tells me often that Ryder is his best friend... I hope it never changes.

 

 Rigg truly discovered the "super hero" this year. He is enthralled with all manner of super hero's. He loves the idea of "beating up the bad guys" and saving the day.

He obtained an Iron Man costume and wore it out many a time.

I recall one such occasion when we were out and a fun cashier leaned down to him and said "hello there, Mr. Stark!" He looked up with a puzzled expression and loudly proclaimed "I'm Rigg!"



One thing I love about this child is how expressive he is. He tells a great story with awesome hand motions and amazing facial expressions. I'm still clueless as to where he gets some of them... they must just be his. 

Rigg started preschool this year. I was afraid he would be the child that was excited the first 2-3 days and then tire of it. But he surprised me and looked forward to it almost everyday. He grew and learned so much this year. It happened slowly as well as faster then I could take in.

Rigg has been learning how to help me more. He is a deep thinker and very intuitive. He knows and senses things are changing. He asks questions and we talk about things. He wants to talk about Heaven a lot, about Caden living in Heaven with Jesus. He is smart and has a big, sweet heart. He makes me think before I speak and helps me to have a bigger faith.

and he's adorable...

He loves his daddy... have I mentioned that? He would rather sit and show his daddy all sorts of things then hang with Mama.... I'm cool with it. I love that He loves his dad. Rigg needs your full attention. He wants your eyes looking at him when he speaks. He needs time to feel loved. Andy is better at slowing down and giving Rigg his full attention... I will learn.... Rigg is teaching me. "Mom, I'm talking to you, you need to look at me... no MOM! I'm not done!"

I'm getting there...

Rigg loves to pretend he is a super hero. He does a lot... A LOT... of ninja moves and fighting-type choreography throughout the house. He has developed some wicked skills! 

 Also... Rigg kinda loves to dance...

and I kinda love to watch him!



We are super blessed to have Rigg as a son. He is an amazing little guy. He loves big. He plays hard. He thinks deep and his smile brightens a room!

Happy Birthday Rigg!

We love you to pieces!



the starting line

 

June 12th turned out to be a day that changed my life forever.

 

The Captain had an MRI, and when we saw the doctor, we got the news we knew would come one day. Treatment is no longer working... the tumor is growing.

we sat and talked through options... really there were only 2.

1. continue with treatment we know is not stopping the growth but may slow it down

or

2. Stop treatment altogether.

 

The Captain was able to understand all that was said. I asked him what he wanted to do.

He chose option 2. And I support him 100%.

 

So on a nondescript Thursday afternoon... my life changed forever.

 

There is no good time frame. The doctor said "months".

So we will try to plan all that we want to do as soon as possible.

We will try to soak up time. Make memories... see people.

 

People keep asking me how we are doing.

I respond with OK.

Because it's true. We are.

We have our moments... those waves of sadness or desperation that grip your heart and squeeze... but they ease, they pass, and we remember that one day, we will sit and cry and grieve because we miss the Captain. One day will be a day of sorrow because he is gone...

But friends, that day is not today.

So we will chose to live... while we can.

 

I think one reason I am doing as well as I am is because the news wasn't something that I was completely unprepared for.

I feel like the past year and a half we have been walking... marching toward a starting line. Keeping it always on our horizon. It is there... this starting line, whatever else I am doing... I have thought about the starting line, mentally prepared for the starting line (as much as one can for this kind of thing), made plans regarding the starting line...

And last Thursday... June 12th 2014, we not only reached the starting line,

we broke the tape.

We began the journey to the finish line.

 

And because I have always had the starting line in my thoughts... I am not so shaken.

The decision to stop treatment just made it real, no longer a "when" it is a "now".

 

The idea of a man dying at such a young age, leaving a wife and two little boys is heartbreaking... when I think on it, it can overwhelm me.

I get caught up in the sadness of it all. And the how will I's...

I think of my boys and what they will miss, how this will shape their lives.

But when I can look up, away from myself long enough to focus on Christ and the things I know to be true, I am reminded of this:

 

I do not know if God has allowed this to happen to us, as He allowed Satan to touch Job's life, or if He has ordained this Himself, like the man born blind in John 9:1-3.

And, quite frankly, I'm not sure it matters.

What I do know is this.

I am a born-again child of God.

The Captain has been covered in the blood of the lamb.

We are saved.

And because of this God says,

"And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Romans 8:28

 

God will use this for good. He is not only working and orchestrating things now for us...but He has already been at work long before today. Preparing us, shaping us, teaching us, and putting people in our lives to guide us, and help us finish well.

 

God is a gap-filler. What we see as deficits, God sees as opportunities. What we look upon as bad or horrible, God sees His purpose and plan.

 

I have already, long before the brain tumor, put my trust in a faithful God.

I choose not to take it back just because I do not know what my future holds.

God holds my future... therefore I will not fear.

 

God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea.

Psalm 46:1-2

 

 

 

 



The last 4 weeks in Insta's

Life got super crazy right after Easter.

 

First, let me just say... Easter was great... the boys... Super handsome.

And to prove it...

 

 

 

THEN.

 

Then life turned upside down and went nuts.

 

It all started on a beautiful Sunday evening on April 27th. The boys were in bed. The Captain and I were sitting on the couch watching TV. It was actually kinda relaxing.

Then Andy raised his hand.

Which seemed strange.

So I asked him if he was ok.

He didn't respond.

So I asked again.

Then the Captain went into a seizure.

At the end of which he was completely paralyzed on his right side and his speech was gone...

So I dialed my friendly 911 operator.

Who was kind and told me help was on the way.

 

 

 

We spent a few hours in the ER.

They ran tests.

Blood work.

scans.

x-rays.

CT.

and everything came back with-in normal limits.

But still he couldn't move or speak.

(well, to be clear, he could speak... just no one could understand what he was saying.)

Which was pretty frustrating. T not move or have anyone understand what you are trying to say.

It was a long, hard night.

He was given extra anti-seizure meds and admitted for observation.

 

 

By morning we was able to walk (very unsteadily) and move his arm and hand a bit. Much more than the previous night... but still so little compared to before the seizure.

He was then evaluated by Speech, Occupational Therapy and Physical Therapy... all of whom said they recommended acute rehab.

The Captain was in the hospital almost 4 days before they could transfer him to the rehab facility.

And while he waited for red tape and paperwork to go through...

He worked.

 

 

and the boys played in his room while we visited.

 

 

He was finally transferred to his new home away from home.

Then the activity of each day went up a notch.

I was/am trying to juggle being two places at once.

Being a mom and doing mom and house stuff...

And being a wife and being with Andy.

And it makes me tired

All.day.long.

So I've upped my coffee/sugar intake... and so have the boys. (by proximity)

While Andy goes to 3-4 hours of therapy a day, we go to preschool, work and Bible study.

When we go up to see daddy (at least once a day) we have dinner, lunch, play games, do puzzles and take him outside to sit in the sunshine and watch the boys race.



A sweet friend made the Captain a super hero cape.

which the boys love.

They wanted to give it to daddy while wearing theirs.

There was a lot of super-mighty powers in the Captain's room that day.



And we were encouraged and starting to see the light at the end of the therapy tunnel...

Then the Captain got sick.

I went to pick him up one morning and take him to get his chemo and drug infusion and he had spiked a fever and was vomiting.

This lasted for 3 days...

(chemo was canceled... obvs) 

 



 

Then on Saturday the 10th of May the Captain had 2 seizures within an hour.

The seizures took away all movement that he had regained in the past two weeks.

Again. (copy and paste from two weeks previous)

We spent a few hours in the ER.

They ran tests.

Blood work.

scans.

x-rays.

CT.

and everything came back with-in normal limits.

But still he couldn't move or speak.



It took almost 24 hours to regain some movement. Which was minimal in his leg and shoulder.

They kept him at the hospital for 3 days.

Then transferred him back to the rehab facility.

Where he started all over.



I did pick him up last week and take him to the Neuro-Science center to get his infusion.

I told him I take him to all the nice places.

It was my fist time pushing my husband around in a wheelchair for most of the day.

I told him I prefer my dates walking upright... so he was going to have to work a bit harder.   :)

Since then he a=has been at the rehab facility "getting strong", as I tell the boys.

He will be there another week at least.

We go up at least once a day to see him and encourage him.

He still has no movement in his right arm or hand. He can walk (gets tired very easily) and can move his right shoulder but not his elbow or hand...

He desperately wants to come home.

So we try to lighten his load and brighten his day.

We are blessed to have so much love and support. I have been showered with offers of childcare, food, and help of all kinds.

I point people in Andy's direction.

He needs encouraged and reminded that he is not forgotten (easy to think when you see no one most of the day and you're "trapped" in a rehab hospital)

So I made him a new email account.

 

encouragethecaptain@yahoo.com

 

and the emails have been amazing.

loving.

encouraging

and He loves them

so thank you!

 





I have found that I an continually amazed at how BIG God is. He is coming in and taking care of our needs... when we are not even sure what they are... He is bringing hands, and loving words, and letters and gifts and filling in gaps where we need help...

 

So many cards and emails have come to us from people we do not know or have never met in person... but they are praying for us... and they write of how they love us and our little family...

 

and I am beautifully overwhelmed.

 

So thank you!

 



The boys are doing well.

They are so young, they don't know much different.

We have had or share of fits and meltdowns... but mostly...

they are champs.

Rigg just finished his last day of preschool.

So our summer is WIDE open.

and I am lovin' the sound of that.

 

 

No if I can just get them to do all the yard work... and maybe the laundry....

 

 

Psalm 27:13-14

I would have despaired unless I had believed that I would see the goodness of the Lord
In the land of the living.
 Wait for the Lord;
Be strong and let your heart take courage;
Yes, wait for the Lord.

 

 

 

 

 

 

 





April 10th

 

April 10th is my parents wedding anniversary.

It is also the anniversary of the Captain's first brain surgery.

5 years ago today was Good Friday.... and a day that started off very early and in a waiting room.

It started off here, with the tumor.

Then a request for prayer and surgery update 1, 2, and 3.

and then many posts that follow documenting his recovery from what we would, many years later, come to call "his first brain surgery"

 

Weird and awful that someone would have one... let alone two.

 

It's interesting. Just this past weekend marked the anniversary of Andy's first seizure... and almost the exact date (give or take a few hours) the Captain had another one. Early Saturday morning the bed shook again and I rushed for the lights... by the time I flipped them on it was over. Andy was disoriented for a long time afterward. It took over forty minutes for him to tell me his name, my name and what year it was. it was a very long forty minutes.

 

After I monitored him for a while longer, I let him sleep. I, however, did not. I was too amped up. I was trying not to worry, trying not to cry, trying hard to see what God was doing with all this. Because, to be quite frank... sometimes I look at all this cancer and drugs and fatigue and single parenting and I just see a mess.

and not a beautiful mess that is all the rage to call your crazy, hectic yet very fulfilling and enjoyable life...

but a messy-mess that is ugly and hard.

 

As I sat there in the dark, staring at Andy and letting my mind wander over all these things, I thought of the first seizure...

the one almost 5 years ago to that moment... and how I always, always, inevitably link it to Easter. Because his surgery was on Good Friday, because Easter morning I spent by his hospital bed reading all four gospel recordings of Christ's resurrection... because I remember how I felt in that moment. That realization that sweeps over each Believer as we read about Jesus' death and the conquering of it... complete awe and befuddlement that He did it for me.

I remember that feeling. I remember being swept up in it. I remember looking over at Andy, asleep with his head bandaged up so he looked like a mushroom from Super Mario Bros, and thinking... If God loved me enough to die in my place... I can live this life, this hard uncertain life and future the best I can, to point others to Him.

I meant it in that moment.

Most days I still want to do just that...

many days I fail.

 

But in the dark, watching Andy's chest rise and fall I remembered.

I remembered Easter and the incredible Hope that it brings.

In the dark that morning I felt the heaviness, weariness and loneliness that comes with this sort of trial. But as God brought to mind the Captain's first seizure and first surgery I was reminded of Hope. The Hope of Heaven that is mine to gain because of Jesus and the cross.

 

I sat there for awhile after that praying. Thanking God for His faithfulness. Thanking Him for the things He has taught me, the things He graciously teaches me again and again when I forget to remember. I prayed for my perspective and focus, I prayed for God's will to prevail. I thanked God over and over and over again for Andy's salvation, for mine... and for the assurance and peace that it brings to my heart. I asked for rest, not just sleep... but rest, because I am a bit worn thin these days.

But I always returned to thanking Him for the knowledge that whatever happens, with Andy, with me... we are saved.

 

And after a long while, I felt calmer.

 I would be lying if I did not/ am not concerned at all for what our next MRI might show... But remembering God's faithfulness and His work and the Hope He promises gave me courage. And I slept.

 

For a half hour before Ryder was up with the sun.

It was a loooong day after that.

 

I think there is a gift in how Andy's first surgery reminds me of Easter and how his second will always remind me of Thanksgiving.

This brain cancer is hard...but I have Hope and I am to give thanks.

 

Sometimes I look around and I have no clue what God is doing.

But I know who He is.

He is my Savior who Brings the Hope of Heaven.

 

Happy April 10th.

 

Happy Easter.

 

He is risen!

 

 

 

INSTA-monday

It's been almost a month...

and although its been crickets here on the blog, I do use the Instagram daily-ish.

(you can follow me if ya want to, I'm carichastain)

 

So... to keep you up to speed, I thought it was time for an Insta-Day...

Insta-days are just me posting my Instagram pics on the blog and telling you what we've been up to... If I was a really great blogger, I would do it once a week... but you know, I'm just a so-so blogger. (I'm embracing the real me)

 

 

Rigg has a knack for making the cutest gestures and faces... I truly do not know where some of his mannerisms come from. He is growing up... I both simultaneously love and despise it. 

 

Ryder is still, well..., Ryder. He is everywhere, all the time...into everything and doing it with great pleasure and gusto.

He's also very messy.

all.the.time.

My kiddos are early risers.

I bought this happy coffee mug because it was delightful... and happy.

The sentiment of said mug does not apply to the wee hours of early pre-dawn that my boys think is wake-up-and-play-loudly time.



The Captain and I usually have our dates at a hospital or hospital type setting. It involves me reading or scrolling through Pinterest or Houzz while he gets poked and prodded and injected and infused.

Good times.

Ryder is crazy.

that is all.

My sister, Sara, came in from LA earlier this month for a long weekend.

She and I got some stellar sister time without kids... which means we shopped and chatted and tried on clothes and shoes and chatted and all things lovely.

by ourselves

without kids.

ahhhhhh.

 





Even though Sara came sans kids, she did have to hang out with mine a bit while she was here. The boys love Aunt Sara.

They also love waffle house and bacon...

(but who doesn't?)

If you live anywhere near the Midwest you might have heard whispers of people being over the winter. And by whispers I mean loud angry exclamations of how much we are done with winter.

Done.

But winter is not done with us.

Spring tried really hard for about 2 days... giving 70+ degree weather... just to plummet headfirst back into winter with below freezing temps and more snow.

Rigg and I were not amused. His astute assessment of snow after being able to play at the park without a coat...

"snow is dumb."

He's a smart boy.

Chemo happens once a month around these parts. The Captain usually feels all sorts of terrible after chemo and usually becomes a permanent inhabitant of the bedroom for a little over a week. After such a time he emerges slowly and starts to eat again... gaining energy only to do it all over again.

The boys miss their daddy whilst he is hibernating. So they hang as close as possible some days.

Rigg and Ryder both love BSF. Last week we studied Jesus' return. They left with trumpets. Rigg has been blowing his at least twice a day since to "see if Jesus is comin' back to Earf."

Its super loud and kinda annoying... but also amazingly sweet and awesome.

I love what the boys soak up each week. I love that I can talk with them and get excited with them about God's word. I love that He is working in their little hearts by the stories and songs and verses they learn.

The Captain is starting to get treated at the schmancy new Nuero-Science center. It's shiny and new in every stinkin' corner.  I was super excited... it's like getting invited to hang with the cool kids... being high class brain tumor patients...

He thought I was a  bit crazy....

Also, in fun Captain news, He has been feeling a little better lately. He even had friends over to play (eat pizza and watch basket ball... it is March!).

He had a really good time. He smiled and laughed...it made my heart happy.

I realize in all the pictures of Rigg he is wearing his coat and hat (we spoke earlier about the stupid winter... see above)

That, and he, Ryder and I are always on the go... it is a season of being in the car going from here to there. I like to sing in the car... loudly and with much feeling... Rigg however told me just this morning to stop singing. I turned (as much as I could while driving) and gave him my most offended face. He responded by delivering this line, in a most convincing tone, "Mom, I really love you, but, I don't want you to sing."

 

Some people just don't know true talent when they hear it!

 

 

Happy Monday!

 

 

 

 



Turn my eyes upon Jesus

My house is silent.

 

So quiet.

 

 

This might be the first time in a month that I can sit and think.

 

 

I know many of you want to know how the Captain is doing, how I am doing... how we are doing.

 

The short answer is OK. Fine... about the same.

The long answer is much more detailed and imprecise.

 

How is Andy? He is about the same. What does that mean? Well the past 3 MRI's have been stable. Which is great news. It means the tumor is not growing. However that does not change the day to day aspect of his fatigue, physical and cognitive decline that we have experienced the past 6 months. He is the same today (give or take the level of fatigue, a headache or nausea) that he was about 2 months ago. That is when I would say changes and symptoms leveled off a bit. Now he sleeps most of the day and night (16-18 hours, normal for a brain tumor patient) and seems his most perky in the evening.

The drastic change in him and our lifestyle was hard for me at first. Well, is still hard some days, but God has been faithful on so many levels. Conversations with really good friends, family, doctors, have helped me process and cope accordingly. God working in my heart to soften and change my attitudes and desires about my days and my purpose.

 

To be brutally honest.

I hate what this tumor has done to my life.

My days are so drastically different from anything I would have wanted or requested... from anything I once dreamed.

About a month ago, Andy and I were getting ready for bed and he looks over and says "I'm sorry I have cancer."  I told him I was sorry too. He then said " I know it has crushed the dreams you had for your life." I told him it crushed his too. We are in this together... and what we had thought our lives would look like... well, God had a different plan. One that is taking some adjustment and time to wrap our minds around... one that takes more letting go and giving up than is comfortable.

One that has a bigger purpose and meaning, I pray, than one I could have conjured up myself.

 

I have to trust in that... to believe that God is using this for His good. He even states in Romans 8:28 He works all things together for the good of those who love Him, who are called according to His purpose.

 

I trust that God is bigger than me; that He knows more... that He sees what I can't; that He works for and in circumstances that I do not understand...God says in Isaiah 55:9

“For as the heavens are higher than the earth, So are My ways higher than your ways And My thoughts than your thoughts.

 

There are times when I get upset, angry, overwhelmed... and these are the truths that I cling to, this and knowing that there is more... there is better awaiting me. Clinging to the truth that this life is fleeting and temporary and knowing what lies ahead is more than glorious.

 

2 Corinthians 4:16-18

Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison,  while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal.

 

 

And God is faithful... each day that dawns He fills with encouragement and grace... and mercy. He sustains me little by little each day, each hour as I walk (sometimes begrudgingly) through this trial.

 

Nobody likes hard things... things that hurt, or take away from what we want. Nobody likes enduring...while the struggle is upon them.

 

But just like anyone else who undergoes transformation during a struggle, and athlete striving for a better time or perfected skill, a person losing weight, a group finally working together as a team, a choir blending their voices and sound perfectly... all these things, after all the time and hard work and struggle and labor they can reap a reward.

 

The same is happening in my life, I am sure of it... the only difference is God is doing the work. He is shaping my heart according to His purpose... and the Glory will be His.

 

So on days when I feel crushed under the weight of it all, when I am completely overwhelmed... I go to God's word. I remember these things. I ask for clarity, for wisdom... for openness to His will. Or on days when I cannot do it myself, when I am dragging a kicking and screaming kid from the store, when I am mean to my boys after an hour of trying to get ready and out the door, when I snap at my husband for no reason... and I cannot seem to get ahold of my own emotions or redirect myself... God is faithful to bring me alongside others who gently push me back to Christ.

 

I want God to use me, to use my life to Glorify Him, to build His kingdom... to point others to Christ. And I know that I cannot do that while grumbling, complaining... while dreaming and wishing away what God has laid before me. I need to accept what He wants for me. I need to allow Him to do with me what He deems appropriate.

 

Today I am not flattened under the weight of struggle. Today has started with hot coffee and a quiet house. Today seems calm and easy... but it's only 8:31...

Surely I will have to re-return my focus today.

and again

and again.

 

As the hymn says

"turn your eyes upon Jesus.

Look full in His wonderful face.

and the things of earth will grow strangely dim,

 in the light of His glory and grace."

 

God is faithful to calm my heart each time.

 

 He is shaping my heart according to His purpose... and the Glory will be His.

 

 



6 years ago today

6 years ago today I became a mommy for the very first time.

 

 

Caden Joelle would have been six today.

 

She has been gone for so long, yet she is not only in our thoughts daily... she is the topic of many conversations in our house.

 

 

Because of Caden I can talk openly of Heaven, Jesus, and even death with my boys.

They know they have a sister...

and they know she lives with Jesus.
They know one day, if they believe in Jesus and the work He did on the cross, they will get to meet her.

 

 

Rigg was telling someone just the other day about his sister... and how he "loves her a lot."

Sweet boy.

 

There have been so many days when I have wished she were here... and all the little things that come along with that. Some days the sadness is still intense... but it is brief. Because God has given so much through Caden. Her life and her death have been gifts and blessings.

Because she is gone, I have a deep, deep longing for Heaven. I have a deeper faith in what God has promised. I know God can be trusted with anything... ANYTHING.

I can share with others about what God has taught me.

I can tell my children about Heaven.

About Jesus.

about life...

 

 

Caden was our first precious, sweet, snugly blessing.

A blessing that God continues to grow in ways I never could have fathomed or desired.

 

 

She is still talked about, smiled over... and rejoiced over.

 

Today 6 years ago God began a work He is still completing. In my life God is using my baby girl's life and death to teach me about Himself everyday.

 

 

6 years ago today my life changed for the better.

 

 

and I am so thankful.