Family pictures

 

 

Back in the very beginning of  July we got all dolled up and had our pictures taken.

 

You might remember the last time we got pictures taken... I LOVE these because this was when Andy was still Andy... when he was walking and talking and throwing the boys around. These pictures hang in my bedroom and I see them everyday.

 

And these new pictures are no different... I am in love with these too... probably because this was one of the final times the Captain was really feeling ok... and because these are most likely our very last family pictures ever.

 

 Rachel Vanoven is the talent behind the lens. She was fantastic. I cannot say enough about these pictures, about how they capture the boys personalities... about how I am SO THANKFUL that I have ones of Andy with the boys, with me...
about how The Captain smiled and cried when he saw them.

She took  A TON... so I have lovingly narrowed it down to 16 for your viewing pleasure.

 

~swoon~ ... right?
 

The past couple weeks

The past couple weeks Have been a mix of ups and downs.

I am trying... some days struggling, to balance normal everyday things, like parenting and laundry and dishes and work, with not so everyday things, like cancer and grief and preparing little minds for all that awaits them shortly...

 

It is a up and down that I do daily.

 

We have regular moments like everyone else. Happy tickle fights, playing in the rain, dance parties in the kitchen... I'm trying to keep life looking as normal as possible for the boys. Which includes keeping up with Ryder and his abundance of energy.

 

 

 And some days there is whining, throwing of fits, disobeying and fighting... and that's just me... the boys have bad days too.   ;)

 

However, I have been blessed and encouraged by so many things... One of which is a HUGE outpouring of love and scripture. I get a handwritten verse in the mail every other day or so. It is so refreshing and comforting.

 

 

I also have a sweet friend who made me a quilt. Not only is it ADORABLE, but she used pictures of my little family. It has become one of my very favorite things.

 

 

Each day I struggle mentally with wanting to spend time with Rigg and Ryder and wanting to care more for Andy. It is very hard to do both... really impossible. I cannot spend as much time with Andy as I want... and give the boys the attention and care they need. This is one of the main reasons he moved to his parents home. It has been a wonderful blessing for all involved... but I still want to do it all... feel like I should be doing more...

 

I miss him being here.

 

 

However, life does not stop. School is starting soon and Rigg loved showing Ryder all around the school. Parenting is hard...but moments like this remind me it's all worth it.

 

 

 

The Captain is up and down too these days. He is sleeping more and more; 18-19 hours a day easy.  He has some alert and awake times, but they are few and far between. Usually only last for 20-30 minutes before he is nodding off again.

He is also battling more pain. Usually it is his head that hurts. But some of it has to do with the arm and hand he can no longer move. The muscle is not being worked and therefore atrophying and causing some pain. We are trying to keep ahead of it so he can rest more comfortably.

 

Andy still loves seeing the boys come by each day. They never fail to bring a smile to his face. A friend of ours came and built a ramp so we can wheel Andy out to watch them play outside. He has been wanting to watch Rigg ride his new bike; now he can. He usually falls asleep in his wheelchair before we can get him back inside... but he never complains.

 

 

The boys enjoy the ramp too!

 

 

 

Even if Andy is not up and awake when we are there they boys go in and love on him. They miss having their daddy at home too.

 

 

This past weekend we had a reunion picnic with our former Sunday School class. It was/is a LOT of young families with a TON of children. every time I mentioned it, Andy perked up and I could tell he really wanted to go. However, he is just not up for it. So after the picnic we traveled out to him. We prayed and sang a couple hymns. He nodded off through some of it... but it was a sweet time and I am always greatly encouraged and overwhelmed by how much love we are shown.

And the kids made quick work of covering my in-law's driveway with sidewalk chalk.

 

 

 

The past couple weeks have been hard. They have also been normal(ish)... and wonderful and heartbreaking and joyful. It is the tension we hold as believers in Christ. We have a big and mighty Hope in a big and Mighty God who is crazy faithful and amazingly loving... and He has shown himself to be big, mighty, faithful and loving the past couple of weeks... and I know He will continue to do so.



hard things

Andy has been on hospice now for a month.

Because of this new transition and the foreshadowing of something heavy and hard that awaits us, we have had to deal with a couple of heavy and hard things already.

hard thing 1.

Because of his worsening condition he was moved to his parents house last week. This was a decision Andy and I made long before it came to pass... when he as still able to think through things and understand what was happening.

His mother can take better care of him there and the boys have a little distance, so their memories of him will not be tainted by aids helping him with everything, and watching him deteriorate. Also, they can still run and play and be loud little boys at home now... I did not want to be shushing them and shooing them away all the time so Andy could rest. 

We visit the Captain everyday... for long stretches of time.

And even though this was the plan he and I made together... and even though it was time, it was one of the hardest things I've ever had to do. To pack up all his things and move him out of our home, knowing he would never be back. It broke my heart. Every time I would go back into the house for one more thing he might need, I would break down all over again.

 

When the boys and I went to leave and go back home, after getting him all moved in and situated at his parents, Andy thought he was going too. His face fell when I had to explain to him all over again that he was staying... that he would not be back home.

The Captain came to the door to wave goodbye to us... it is a memory seared into my mind. I cried all the way home.

 

 

And now my house is full and loud and messy from little boys, but it is also empty and silent and clean from the absence of my husband.


hard thing 2.


It occurred to me that although my boys and I talk of Heaven and of death a lot... we had never discussed the actual, tangible, physical things that happen. Specifically that when you die, if you believe in the work Jesus did on the cross, you will go to heaven but your body stays here.
When I realized the details I had been leaving out... I quickly became concerned that the boys, Rigg especially, might become confused.
So I took them on a field trip.
We went to Caden's grave and discussed what happens to a person when they die.
I explained that your body stays here and just your spirit goes to Heaven. (try explaining a spirit to a 5 & 3 year old!)
I went on to tell them that the body gets put in a box, buried in the ground and we put a stone with your name on it above where it is buried.
I used Caden as an example.
I told them that when Caden died, we put her body in a box, buried it and put her name on a stone above it. I reiterated that her body was in the ground but her spirit was in Heaven.
Rigg had a million and one questions.
"who puts the body in the box?"
"is it heavy?"
"how long does it stay buried?"
"what color is your spirit?"
"Can Caden's spirit hear us?"

As far as Ryder goes... I spent more time telling/yelling at him to not climb on the headstones.
~sigh~
 Rigg asked why they couldn't climb... to which I replied that it was disrespectful... and he came back with "why? they are not here... just their bodies."
I was struck silent for a moment, and then said...it is disrespectful to their families...
this seemed to suffice.
Rigg really amazes me sometimes.


hard thing 3.


I was hanging out with Andy one morning, just him and me.
We were watching a rerun of Fresh Prince, laughing at Will Smith in his neon nineties zoobaz pants when the Captain looked over at me and asked me a question.
Now, Andy doesn't speak so well anymore...like, actually not really at all ever... so when he tries, you stop everything to listen and try to make out the words.
I turned off the TV and gave him my full attention.
He very slowly asked "what is wrong with me?"
Which he has asked before... but he has always meant something different than the actual question.
But this time I could see in his eyes that he was really asking.
I took his hand and asked him if he remembered that he had a brain tumor...
I saw the recognition wash over him and then his eyes welled with tears. I squeezed his hand and asked if he was sad... he nodded. I asked if he was scared... he nodded.
Then we just sat and cried together as the knowledge of what is really happening to us washed afresh over him.

He forgets things so easily now. This is not the first time I have had to deliver bad news to him... news he had heard before. It's like a really horrible practical joke; having to give the same bad news to the same person over and over.

It is hard to watch him weaken, to see him being slowly erased from the Andy I once knew. However, he holds on to his joy and delight in the small things. He never complains, gets angry or frustrated. He is accepting and peaceful. The Captain is still silently leading.

2 Corinthians 4:16-18
¹⁶ Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. ¹⁷ For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. ¹⁸ So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.



Rewarded

Almost everywhere I go people ask how I am.

If that has been you... thank you for asking. Thank you for caring.

Thank you.

 

However usually my response is "we are OK"

which is true.

Life doesn't look much different today than it did 2 months ago.

And I suspect as life changes we adjust our sails accordingly and absorb the slight shifts.

 

I also do not think there is a way to prepare for grief.

So most days I awake to the boys already being loud and stamping about.

We eat, play, clean and do.

Andy sleeps.

A lot.

And we all live the day before us, hopefully, to the best of our ability.

 

The only changes I have really noticed since we decided to stop treatment are the slight increase in the Captain's sleeping and the slight decrease in his ability to move his right leg well.

He falls about 2 times a week. Give or take. He has yet to hurt himself, praise God. And it takes great effort by both he and I to hoist him back into an upright and standing position.

 

We have received so many cards, emails, texts, messages. It is overwhelmingly amazing. We feel loved and cared for and blessed. If you have sent me one... please know, I have read it, I have most likely responded in my mind... and then my hands and brain start to do something else and your sweet correspondence gets buried in my list. I know I have let some fall through the cracks... and I apologize. Please know I have read everything... and been blessed by your kind words of encouragement and prayer.

 

 

Since the decision to stop treatment... which is a phrase and an action people, in general, do not like to hear or accept... the reality of what is before us has begun to take shape.

Andy is dying.

It was not a decision made in haste. It was not made lightly.

And it was not made without thought or guidance.

And even though I am 100% confident that the decision we made was best for our family, for us, for Andy... It is still heartbreaking.

 

However I have had many moments of encouragement these past weeks. A sweet lady was sharing what she knew to be true of God in her own life... and her words have raced around my mind for over a week... following my thoughts and entering my conversations.

She said:

 "Heaven is our reward, not our consolation prize."

And I fell in love with it.

Because it is exactly how I had been feeling, how I had been thinking, how I wanted to tell people Andy and I were viewing this situation but couldn't come up with the proper way to do so....

But there it is... beautifully succinct and wonderfully stated.

 

 "Heaven is our reward, not our consolation prize."

 

And then Sunday the sermon was on Ecclesiastes 7:1-6

And I heard:

7:1 A good name is better than a good ointment,
And the day of one’s death is better than the day of one’s birth.
² It is better to go to a house of mourning
Than to go to a house of feasting,
Because that is the end of every man,
And the living takes it to heart. 

 

and was reminded that:

Psalm 116:15

Precious in the sight of the Lord is the death of his faithful servants.

 

This is the view I hold on Caden's death... I mean, we even have a celebration on her Heaven day...

Because in my heart I know that the day she went to Heaven to be with Christ forever was far greater than the day she was born.

 

And so it will be with Andy... Because Andy has accepted Christ as his personal savior... when he dies he will go to Heaven, to be with Christ... to be with Caden, forever.

 

However, we are human. And with this knowledge and belief we also know there is pain with the death of a loved one. There is a tension to the death of a believer... between joy and grief.

Because, quite frankly, it hurts. It physically aches to miss someone you love.

But that hurt will be mine... not Andy's.

and, I know, the pain does not last forever.

God is gracious in that way.

 

So although we know what is in store... we talk about it openly... we discuss what it means for me, the boys and our families... we do not lose heart, instead we take courage because we know...

 

Heaven is our reward, not our consolation prize.

 

 

 

if your interested in the sermon I spoke of, It's available here. 

Upside Down - Biblical Better and Worse

2014/07/13

Speaker: Jym Gregory

Series: Words of Wisdom 5

Scripture:

Ecclesiastes 7:1-6

 

 



a decade of marraige

Today the Captain and I have been married 10 years.

 

10!

 

 

When I thought of writing this post, a lot of things came to mind.

I thought of doing a timeline of pictures, complete with commentary about said pictures and how God was shaping our lives.

 

I thought about showing you all pictures from our recent trip to Colorado and just telling you it was our anniversary celebration for this year.

 

I considered just posting an insane number of pictures of me and Andy, and commenting on how these past 10 years have changed not only our appearance, but our heart and our perspective.

 

However between real life (taking care of my boys, my hubby, my dog and my home) and my procrastination... you will get none of those very detailed posts.

 

What you will get is a video of our wedding reception.

Which I'm pretty sure I post every year.

(sorry)

 

It's about 10 minutes long.

Well worth it.

 

As Rigg said this morning while watching it "Daddy is talking! He doesn't have that cancer in his brain!"

Which is true... a fact, when pointed out by your beautiful son, makes you cry.

 

 

A few things to know before watching the video.

I was skinny... and very blonde.

The Captain had HAIR and liked to chew gum.

Our wedding party was big.

It was CRAZY hot and humid that day.

It rained so hard during the actual ceremony we didn't think we would have our reception.

But the rain did stop...

Because of the wet and humidity... our reception was mostly cake, chatting and dancing... we "forgot" the toasts, and all other formalities.

 

Jon is one of Andy's best friends who was serving in Iraq, not able to be with us.

My sister is giving her "belated" toast wet, because some bridesmaids jumped into the pool too... just not on camera.

(and, per her toast, I should mention, we fought a lot growing up... but are good friends now)

 

OK...

Enjoy my wedding day!

 

 

 



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.