My superheroes

 

 

This year was the first year that Rigg wanted to wear a costume and "go get candy."

until VERY recently Rigg was extremely uninterested in anything dress-up, costume-y,  or otherwise not normal attire.

 

So when I asked him if he wanted to dress up for Halloween this year I was a bit surprised with his enthusiastic reply.

He said "YES! as long as I can be Iron Man and Ryder can be the Hulk."

 

 

OK, little one, I think I can make that happen.

So I became the mom of two superheroes.

 

 

The boys got the costumes two weeks before the big night... and Rigg has wanted to be Iron Man a lot... before Halloween and after.

 

So not only did the Iron Man and Hulk make and appearance for the Night of Candy... but have also run errands with me and been seen around the house "saving the world.

 

 

I love having little boys.. Ahem... I mean... superheroes.



So a long time ago (like the end of September) we finally celebrated Heaven Day!

So, you know how I posted about Caden's Heaven Day on Caden's Heaven Day?

 

Because I was, for once, timely.

 

But there were no pictures...

that was because we had yet to let the lanterns fly... and we had to wait for good weather to do so.

 

When that day did finally arrive... Rigg and Ryder were so excited!

We had been talking about Heaven Day for awhile, why we do it, what it means...

 

 

You can read about that here.

 

The night we were able to get together was great. The weather was perfect and all the lanterns took flight! I buy extras...because one sky lantern does not a celebration make!

 

So not only are we able to let one fly for our sweet Caden, but for friends who have lost loved ones recently too.

A gift we can give from afar!

 

 

Rigg and Ryder have spoken of the lanterns almost daily since. They love Heaven Day!

 

I love that God has allowed me to visually teach my boys about Heaven and about the Joy of eternal life.

 

 

I look forward to the day I can rejoice with Christ for all eternity!

And be with all my sweet babies... together!

 



I took a trip to New York, the Captain took a trip to the ER

A couple of weeks ago I took a vacation... just me. No kids. No Captain.

 

It was great.

 

I went to visit my sweet, amazing friend Julie and her family in New York.

You might recall, if you have been reading this blog for awhile, that the last time I ventured into Julie's neck of the woods, a part of a New York mall ceiling fell on my head.

No such injuries occurred on this trip.

 

 

I was able to hang with Julie, Sherwin and their kiddos... and sleep in, and drink an obscene amount of coffee... and go shopping, and eat out and drink coffee... hot coffee. Go on long walks in the gorgeous New York fall weather! Have really good conversation about God and how I am processing my life...

Did I mention the coffee?

 

 

 

 

Her kiddos are the cutest... and I was there for Miss M's birthday!

 

 

 

 

It was a really great relaxing visit. A nice trip away from my joyful/stressful every day.

And I got to ride on a plane which always makes me feel grown up and like I am going on a big adventure....

I don't get out much.

 

When I got home the Captain was not feeling so hot... in fact.. he was feeling downright terrible.

So the very day I returned home I scheduled a doctor's appointment... which we didn't keep because Andy's condition was deteriorating so rapidly we opted for the ER instead.

Once in the ER the Captain became so lethargic and practically unresponsive that they had to help him into a wheel chair to get to triage... then they discovered that his blood pressure was low.

Way low.

like 77/43 and dropping fast.

So they quite quickly zoomed him into the big boy crash cart  room where many, many lovely people with much purpose attended to him.

 

 

 

After a few scary minutes, and two bags of rapidly administered fluid, he started to reach normal again. Because the cause for such a speedy drop in BP was not known, he was then admitted.

I took the advantage of his admission to speak about any and all symptoms/problems/inquiries involving the Captain's health. They ran test after test and found nothing... everything came back normal.

 

 

Which is such a HUGE blessing... but I would be lying if I said I was not disappointed. I really wanted an answer as to why he has been feeling SO terrible for so long.

I am aware that he has brain cancer... but somehow that was not a good enough answer for me...

However, that is the answer we left with... the nature of the beast is he wont feel well.

I was unhappy. I just feel like 4 hours of awake time/ up out of bed time during the day was on the low side of things... He always feels bad... no energy, out of breath, no color...

 

 

So when it was time to see the oncologist again, I brought it up again... she ordered a chest CT. turns out... the Captain has many small blood clots in his lungs.

A gift from his tumor.

The kind of evil tumor growing in the Captain's head produces blood clots in it's victims...

So now... we have an answer to why he is feeling so poorly... and the Captain has to shoot himself twice a day with blood thinner... another drug to add to the arsenal against this cancer.

 

 

We are thankful for answers, super thankful there is a plan and something we can do about it.

But sad and frustrated that the list of drugs and things just keep coming.

 

It's hard to be content in hard situations. I want to be, because that is what God wants me to be... content. But I fight against it... I struggle to be 100% OK with all the drugs, hospital stays, infusions, tumors, confusion, fatigue, lack of energy, lack of conversation... lack of Andy...

I want what I don't have.

 

But we all struggle with that, don't we. Wanting what we don't have... being content with what God has given us, when we desire more... or less... or different...

 

My prayer, along with a constant prayer for the Captains healing... is God's will be done, with the Captain, with how our lives look and are walked out...with my heart.

Which means, lately, I have been praying that God helps me be content with what He has given.

 

Philippians 4:11-13

Not that I speak from want, for I have learned to be content in whatever circumstances I am.  I know how to get along with humble means, and I also know how to live in prosperity; in any and every circumstance I have learned the secret of being filled and going hungry, both of having abundance and suffering need.  I can do all things through Him who strengthens me.

 

So I count my blessings and I strive to focus on Christ.

Because I may not know what my future holds, but I know who my God is.

and I know He can be trusted.

 



A bit about where we are

 

 

Sorry for the silence.

Life has been happening, and it is busy enough to blog about... but also busy enough that in my down time I don't want to think enough to process through a post.

So the blog... and my few readers suffer in silence.

 

Since my last post we have had an MRI.

 

I'll start this story about three or four weeks ago.

Andy has really been feeling poorly. He has been sleeping a lot. Not involving himself in much of anything. He has had trouble carrying on conversations, finding words... tracking what people are saying. I have seen a cognitive decline over the past few months. His energy is LOW. He complains of headaches and stomach pains almost daily.

 

So pretty much... just feeling terrible. It's been hard to watch the slow decline of his health. I find I am doing more myself, taking on more of the load. It's been pretty stressful.  I struggle to find the balance between wife and caretaker... of when to push him to do more...to try to motivate... and when to leave him be and let him rest.

 

So with all of that going on, both the Captain and I, along with other family and friends who have been witness to our lives over the past two months, thought there was some major tumor growth happening.

The morning of the MRI the Captain even said he fully expected bad news.

 

By the time the doc came in with the results, Andy was in the restroom. She waltzed right in and proclaimed that the MRI LOOKED GOOD!

I was stunned. Actually, I think I stared at her with my mouth agape for over a minute. She politely asked if I was expecting different news.

Uhhhh, yeah.

It was just amazing news. The swelling, that was so massive it was pushing the left hemisphere of his brain into his right hemisphere was almost all gone. The necrosis was healing itself and was almost gone... it really looked so much better. There is still a rim of tumor/necrosis in his tumor bed... but we are hoping the chemo and the trial drug he is on keeps regrowth at bay.

So we talked about how Andy was feeling. What drugs he was on, what we could change, tapper off of, get rid of... what we could be doing. 

 

So he has been tapering off a massive does of steroids the past two weeks... and adjusting other medications.

I have seen slight improvements. He is more active, not sleeping as much. Wanting to go out more, (he went to church the past two Sundays) doing more with the boys.

He is still complaining of headache and stomach pain. Still having trouble with memory and conversation... still very tired. But I keep reminding myself... he is still in the throws.... still taking chemo, still recovering from a couple months of some strong meds... he needs time to build strength.

 

I have struggled with this chapter of my life. This limbo of not knowing where the Captain's cancer is going, how long it will take... what to expect. I have had bad attitudes... hissy fits... moments of breakdown, feelings of being totally and completely overwhelmed. And at each instance God has granted me time to take a shaky breath and grab some perspective.

 

Some days I am just too close. I have been living too close to see the improvements... the good things... the glimpses God gives of "old Andy". I get so lost in the day... Making the boys breakfast, rushing Rigg to preschool, being a mommy, doing dishes, folding laundry... checking to make sure Andy took his meds... all his meds... at the proper time...I get so caught up in the "urgency of now" I forget to take a step back and see what God is doing.

 

Because He is still busy at work I my life... in my boy's... in the Captain's. He is doing something. He is stretching my faith... He is teaching me to loosen my grip and let go, again and again and again.

 

God has a plan, not just for Andy's cancer. He has a plan for this in-between time... this incredibly hard and trying season of my life has purpose. He is preparing me, teaching me....hopefully, despite my daily failures, using me to accomplish what only He can. He has the bigger picture. And I need the reminder, so often, that in Christ, nothing is wasted. God is/will be using this. All of my hard things. God has a purpose.

 

So as I struggle under the weight of being a mommy, taking care of a sick hubby, obedience in my heart attitude and my words and actions. As I try to live rightly and love my family... as I try to let go... If I can remember that God is building something with all of my life... building something I cannot see... building something glorious and wonderful so people will see Him... If I can remember that, it is easier to rest in Him, to press on with a joyful heart... not complain and be uber thankful for all that He has blessed me with. Because, really I have so much!

 

It's all about perspective...

And really, this life is so fleeting. when I think of how fast it can go... and how Heaven awaits, the load seems so light.

It will be over soon. And we will be with Christ and have rest and peace.

 

I can't wait!

 

This is a video that was passed along to me weeks ago. I have listened to this so often I might have worn YouTube out!

It is such a great reminder and such an encouragement to me.

 

http://youtu.be/qyUPz6_TciY

 

 

 



Against all odds... I enjoyed the ocean

The Captain, the boys and I just got back from a trip. I say trip and not vacation... because we took the boys, which are still quite a bit of work... and work plus little to no real relaxation equals a trip and not a vacation.

 

We traveled by car to Hilton Head Island. Which is lovely... if you have never been... I highly recommend it. Blessed by the gift of a free place to stay for the week, and us with no previous engagements... made for an opportunity we couldn't have acquired on our own. It was super close to the beach so we were able to go at least once everyday... if not more. It was a bit cloudy and rainy.. but that didn't stop us. The boys loved playing in the sand and chasing the seagulls... so clouds and rain were of no consequence.

 

We did have a few obstacles in our way... Rigg and Ryder both had fevers for days. Rigg was so feverish and lethargic at one point I panicked (aided by a call to the physician on call back home) and took him to the ER... resulting in a very kind Dr. telling me he was sick... but had to other declarative symptoms... I would just have to watch him

 

 

He became right as rain the very next day.

Only for Ryder to fall victim to the ugly virus.

 

 

 

And then Ryder took it upon himself to up my stress level by bringing out his inner artist... and coloring on the wall... of a house owned by friends... who were kindly letting us stay for the week.

I think I still have a twitch.

 

The boys might have had a fever, but it did not stop them from playing  and enjoying the beach.

 

 

 

 

 

 

We were able to go with some close friends... which was a life saver for me.

With a husband who has very little energy, sick kids who seemed worse at night and needed lots of attention... having 2 extra sets of hands and two other kids for the boys to play with was such a blessing. Not to mention I love them like family and it was so fun to share memories...and 12 hour drives with them.

  Cristi and I have been friends since 8th grade, so it is fun to now share our families and kids with each other. I love that.

 

All too soon it was time to pack up and head home. They boys and I spent our last afternoon at the beach in hoodies and "real clothes" because of the drizzle. They built 900 sandcastles, or I should say Rigg built them... Ryder demolished them. They chased birds and looked for "treasure". I sat, watched them and soaked up the waves and the big, big, ocean for the last time. We said about 45 goodbyes to the waves, the ocean the sand and the birds... and then we went back to pack...

and then I got a fever

and didn't sleep.

 

But we got everything packed up and in the van.

The Captain was feeling well enough to help out with the drive back. Which was nice because I drove the whole way there... and with a fever driving for 12 hours by myself seemed daunting.

 

We got home, put the boys to bed and my parents and In-laws have saved the day(s) since.

I have had almost 2 whole days t recover from my vacation trip fever... whatever.

 

I am so glad we went. It was so much fun to show God's big, beautiful ocean to the boys for the first time. They loved it. I had a good time, despite life trying to get me down, and the last two days of resting have been really nice.

 

Maybe I should get sick more often.

 

Just kidding...kinda.

 

 



Caden's Heaven Day

 

5 years ago today my baby girl went to be with Jesus.

 

It was the most horrible experience I have ever lived through... watching her die.

 

But God has done amazing things through her brief life and her death. I can honestly say I am at peace with her being gone. That wasn't always the case. There were many months of heart wrenching grief... of tears, of trying to find balance and purpose in life again after she was gone. However, God has done so many good, awesome things since then... I have seen people turn back to Christ, I have seen others delve deeper into their faith, I have seen God work and bring peace and comfort not only to me and Andy... but to our families. I have seen others step out of their comfort zones to care for others... to care for me. I have seen the power of prayer come to life... I have seen God change my thinking.... mend my heart.

 

I struggled for a long time with how to address this day... the anniversary of a death.

 

I always felt sad celebrating her birthday after she was gone... it seemed wrong to celebrate when she wasn't here. I know that is a feeling and a decision that is very different for all families who have lost loved ones... but for me... it was too sad.

 

But as God healed my heart and gave me what I can only describe as a gift of a Heavenly perspective... The Captain and I decided we wanted to celebrate the day Caden cast off the burden of this life and ran into the loving arms of her Father.

We do it for us... but mostly we do it for our boys.

 

 

I want the boys to learn that, for a believer in Christ, death is not to be feared... it is not creepy or scary. For those who know Jesus, who have placed their faith in Him... death is a celebration. It is the day when they have finished the race and can finally rest in Jesus' arms. They are home.

And it is a beautiful thing.

I want my boys to have a good memory attached to their sister... not just the knowledge that she is dead.

 

So each year, on or as close to the day Caden went to Heaven, we send up floating lanterns. AS a way to honor her, thank God for her... but mostly to Thank God for sending His Son to die in our place, so we do not fear death.

 

 

This year our lanterns will be sent up a little late... The Captain, the boys and I are on vacation. We are dipping our toes in the ocean and feeling the sand underfoot. We are soaking up sun and family time.

And even though we are postponing  our lantern send-off... we are remembering our sweet, sweet girl.

 

Caden Joelle Chastain made me a mommy for the first time.

She taught me about selflessness, about love, about purpose... She brought joy and happiness and laughter into our home... and into our hearts.

And although we do not get to enjoy her sweet smile today... because of Jesus and all He has done we will get to for all eternity.

Here is last year's post about Caden's Heaven Day. 

 

striving to remember

 

My Mother is a saint.

She has taken my boys and watched them, played with them and entertained them for so many hours this week, just so I could get a few things done.

She deserves a parade.

 

I just give her hugs... doesn't seem like enough.

 

The past few weeks have been stressful. Some of it is just the normal life of a mother of young children, some of it is paperwork...endless paperwork and details, some of it is me, just realizing... comprehending...truly seeing that I am doing more and more by myself. Which in turn means the Captain is doing less and less.

Not because he doesn't want to... but because he can't.

 

I'm not sure what to contribute it to. Medication... swelling, necrosis, cancer, lack of motivation, a big hole in his brain that shouldn't be there... a  combination of all of the above.

He is very tired most of the time.

Sleeps many hours a day.

Doesn't really partake in conversations anymore.

And just over all doesn't feel well.

 

We have a doc appointment today. We get to see and chat with his oncologist and he will have a second infusion of a drug that is supposed to make him feel better.

It did not really help last time.

 

I find that each day I am just a inch away from tears. They might be tears of stress, the feeling of being overwhelmed, sadness, or anger and frustration... depending upon the minute of the day.

 

I think the weight of the past few months, and the reality of our situation has just hit me. Part of me thinks I was holding reality at arms length so I would not have to deal... another part of me knows there has been a physical and cognitive decline in my husband the past couple of months.

And it scares me.

It makes me sad.

 

I still do not know what God is doing, I do not know if this is a hard patch and with time, medication and rest the Captain will bounce back.( After his first brain surgery we had a period of two months where he had major trouble talking and forming sentences because his brain was forming new pathways for information... and he bounced back.)

 

Or if God is preparing us... stretching us, growing us for more hard that is to come.

 

I just don't know.

And it is so frustrating.

I keep thinking if I just knew what to prepare for, I could make it through this weird limbo/transition time with more energy...boldness...hope.

 

It's this in-between-ness that is so hard. The slow road, where each day you feel like your pack is a bit heavier than the day before... not sure if your destination leads to relief or sorrow.

I feel weary.

 

But God.

 

Two words that save the day... God uses others to comfort me. To care for me, To lift me up. He uses His word to sustain me, to bring peace and hope.

He reminds me of all that He has done... His faithfulness to me in my life... He whispers through His word...

 

remember

 

remember

 

remember who I am , remember what I have done, remember all I have promised.

Remember I love you, I am there before you are...I have a purpose for all of this.

 

Nothing is wasted, friends.

 

So even though each day feels heavy, my God continues to amaze me with rest He gives, the love He shows and the joy He restores.

And each day I am made aware of how little I deserve the Grace He gives.

Yet, He refuses to stop giving.

 

So today, I will strive to keep my focus on the One who brings the good... the one who promises peace and rest... the One who is faithful to the ends of eternity and brings me Joy.

 

Life can be hard, but we are never meant to walk it alone, carrying all the weight ourselves.

 

So for the 12th time already today I will "hand it over" and try to get lost in His goodness.

Today I will strive to remember.

 



Printed Joy

I can't believe how excited and (more than slightly) nervous I am to write this post.

 

I have been slaving away at a personal project for months and months... and months.

You get my drift... it's been awhile. And I'm (pretty sure) it's ready.

 

I have prayed for awhile now that God might provide a way for me to help out with our finances a bit. With a sick hubby and two young boys to raise... and hardly anything coming in, it's a struggle not to fret.

 

 So, in order to assist with our income... and have a bit of fun in the process, I started an etsy shop.

It is my desire to design and create cute, happy art that helps point us to Christ.

 

 

So without further ado, I present to you....

 

(drum roll....)

 

Printed Joy

 

www.etsy.com/shop/printedjoy

 

And because I am so kind, I will give you a few samples here to view!

 

You're welcome.

 

(Most prints are available in a variety of different color choices!)

 

 

 

This is just a small sample of what the shop holds. Right now I have over 30 prints ready and waiting to print and ship!

Please, head on over and check out my shop!!

 

www.etsy.com/shop/printedjoy

 

 

 

 



Playdates and preschool

As always, I am almost ashamed at how long it's been since I've put up a post.

No other reason than I've been spending days with the boys and nights with the Captain.

 

Sometimes you just need a break from all the extras in life.

That, and it was taking all I had to keep up on my housework and family. I have discovered that when life hands me stress, I strip my "to-do" list down to the bare essentials. I seem to cope better that way. It does not escape my attention that this blog was a tool used in processing and working through my grief after the death of Caden. I would enjoy nothing more than to sit down each morning with a cup of steaming coffee and type my thoughts and feelings about life and how God is walking me... us, through it all. However, when Caden died, she was our only child... and I was a stay at home mom... I had TIME. An element I lack in abundance during the course of this new trial.

One day, I may have the required amount of time and time management to write and express all that I wish... now does not seem to be that time.

 

However, God has been faithful to provide other joyful pastimes throughout my days. The boys are filled to the brim with energy and curiosity, the laundry still refuses to do itself and, of course, there is the Captain to spend time with.

 

 

 

 

 

Last week had the added pleasure of almost three whole days with out of town friends. New York and Chicago gave up some residents, and I welcomed them with much squealing of delight.

 

In college, over the course of 2 years, three other girls and myself all inhabited the same dorm room. Room #359. We, the #359 girls, have stayed close. I grew up with one... so when Julie comes home to visit family I steal her as much as possible. The other two I do not see as often, but Jennie and Michele are far from strangers.

I was thrilled to have Julie and Jennie, as well as their kiddos, in town for a few days. Michele was greatly missed, but having just birthed her third baby a few days prior... we let her off the hook. We are nice like that.

 

 

We trekked the kids to the park, had a picnic, to the Children's museum... well past naptime, had another outdoor meal while all the littles played in the water, We also went to the zoo and road the train and the roller coaster... and played in the water again. The kids had a blast, and the mommies tried to get as much catching up and important news relayed in between redirecting, disciplining and quieting our children. As you can imagine, there were many unfinished conversations....

 

 

 

 

 

 

Although incredibly sad to see them go... the Captain and I had another big event to look forward to.

Rigg, the big 4 year old, started preschool.

I KNOW!!!

Crazy.

He was so ready. The Captain and I talked to him for weeks about school. trying to prepare him. Rigg is the kind of child that cannot be hurried or forced into anything, if it is not entirely his idea, or to his liking... it will not happen without a fit or many tears. We took him to back to school night, to meet the teacher night, showed him his classroom, his cubby, got him a new back pack... new shoes.  We talked up the big day as much as possible.

The night before I laid out his clothes and gave him a list for the next morning.

I told him that he was going to get up, eat breakfast, change clothes, brush his teeth, take a picture (had to put that in there or he would refuse) and then GO TO SCHOOL!!!

the last part was said with such enthusiasm on my part that strangers would have been excited to go to school.

On the first day Rigg woke up excited, breezed through his list of things to do and announced when it was picture time. I was beyond thrilled, because... it's Rigg, and although he is super sweet and delightful... he can pout and refuse with the best of them.

 

 

When we pulled up at the drop off at school, I told the principal, who was standing outside welcoming the kids, that Rigg might need help finding his classroom. He called over an older girl (6th grade maybe?) and asked her to walk Rigg to his class. Rigg hopped out of the van and jogged up to the door... entered the building not once looking back. He was ready.

 

I picked him up later that day. He was all smiles. However, when asked about his day he said "Mom! We just played, OK? (exasperated sigh)"

It was like interviewing a teenager.

-exasperated sigh-

 

Today was no different. He awoke excited, zoomed through his to-do list and demanded another picture. Funny boy.

We shall see if in three weeks he is still as stoked. -wink-

The Captain is slowly improving. Less fatigue, more energy, no headaches... no fevers. We pray the medicine is working and God is doing a miracle inside that lovely bald head!!!

An MRI is scheduled for September 5th, so we should know more then.

 

Andy was prayed over by the elders at church. It was a comforting moment. I do not know what God is doing. I do not know If He will choose to heal Andy and let us rejoice in His power and mercy, or if He will choose a different road and let us praise Him for His faithfulness and sovereignty and holiness. I do know that not a day of this trial, not a moment of this hard thing is wasted. God is using us to show others His faithfulness. He is using this circumstance to shape the Captain and myself... however uncomfortable that might be, into the people He wants us to be.

 

 

This cancer... no matter the outcome, is a work of God.

And it is not wasted... He will use this, my permission or not.

So I pray each day that I can let go... and let Him do what He wants done. 

No matter what.

 

*still... stupid cancer...*