Entry 6: Is God in All of This?

Disclaimer: If God talk isn't your thing, you may want to skip this blog.

I guess with death people expect you to act or behave in certain ways. I am receiving a lot of praise lately for being strong. I say thank you but I also say I am doing the only thing that makes sense to my brain and my body at this time.  Also, I guess with death some people get angry. Mostly angry at God.  Maybe people are expecting me to be more angry and less bubbly.  Does this mean I am not sad? No.  I am insanely sad but still just going through the motions that feel right.  However, anger with God isn't anything near what I am feeling because He has been everywhere!   Let me show you what I mean...

1. Brian didn't want to die. Two months ago, midday at work I received a text from Brian, out of nowhere, that said "I don't want to die".  When things were going well in Brian's treatment plan and he was feeling good and acting normal, death was not in the front part of my thinking. Unfortunately for Brian he couldn't escape those thoughts creeping in more often.  Because of us thinking he was dying in January 2015, we had a lot of the hard talks. No matter which way we sliced it, we didn't want Brian to die.  That being said, in the end, Brian was at peace. HOW?!?! Sure there were days where Brian was confused. Yet, he had many lucid days in Hospice where he joked, and loved, and laughed. He did not act afraid or upset or even cry.  My only explanation for that is God was there. The WHOLE time. The peace that filled him could not be explained any other way.

2. After losing weight this summer, Brian's wedding band no longer fit. We of course got some cool metal that couldn't be resized. Therefore, I got him a silicone, Qalo ring for Christmas. He loved it.  The first day we were in the hospital he held up his hand and we realized he didn't have it on. So when it was time to pick clothes to bury him in (no fun!) I was searching for the ring and had not idea where to find it.  As I was about to finish the search and walk out the door for an appointment at the funeral home, I located it right on the dresser. Thanks God!

3. I am a crazy person and when my life is out of control I feel the need to clean/organize.  Even in Hospice, I would organize the room every morning. After getting home, since my brother was here to help, I decided to start with the garage and attic. While I was out running errands and taking care of business, Stephen pulled everything out of the attic. This was no easy task because Brian was Heman and would put the heaviest things at the back of the attic requiring Inspector Gadget reach  (or a garden hoe in my brother's case).  Stephen, Mom and I worked hard making a trash, donate, and sell online pile. (Before you think I am insensitive, the things I was sorting had been in the attic for 5 years and had no emotional attachment).  You may be asking so where is God in this?! First, imagine two people that have strong opinions and don't mind sharing them. I am sure this is not hard for you to imagine because you are just visualizing two of me.  Surprisingly, my brother and I work shockingly well together. Also, after organizing the piles and feeling pretty good, we pull into our neighborhood and there is a community garage sale sign for the very next day.  God's timing. Love it!

**Also on the organizing train. I was freaking out about the size of the tiny storage unit that my brother worked really hard to get for me. As we are signing papers and talking to the guy the very next day, I casually mention that I wish there was a little bit bigger one knowing he had told my brother the day before none were available. Guess what?! One opened up that day!

4. Let me reiterate another point I already made in an earlier blog. When I told Harper the truth about what was going on during the thirdish day we were in Hospice, after saying Daddy will be dead, she said "In the ground?"  HOW?!?! How does she know this?!?!?! Don't say TV cause I am pretty positive Peppa Pig hasn't buried anyone lately. Again, this has to be God. 

5. Things have been falling into place. I utter a need and it is fulfilled. I say Harper is having a mermaid party and magically Uncle Bug has Ariel show up. I don't want to look at cemetery plots because it freaks me out and our best friends Suzy and Trey pick out the perfect spot, that happens to be under a tree that looks like the tree of Brian and my shared tattoo. I didn't think until last minute about getting photographers for both services we did, yet both had photographers there to help preserve the memories. 

6. Don't even get me started about lightning bolt symbols in the sky. 

7. The music minister texts me suggestions for songs for the memorial and "Suzy's song" otherwise known as "Thy Will" is on the suggested list. Did I mention this is the same song I made Suzy blare on the ride home from Hospice the night Brian died. And also this is the song Suzy sang a month ago at Barnes karaoke hence why Harper named it Suzy's?!  "I'm so confused..."  I mean....The BEST! 

                 

8. I can't lie. It has been rough on Harper. Not necessarily crying about Daddy but emotional break downs that last too long for this Momma's heart.  Harper asks to go to Daddy's grave. She asked to go see Hospice, so we went today. The nurses were incredible. They let us look in the room to help Harper process that Daddy wasn't there. She got a flower from them.  After being spoiled rotten and opening a ton of gifts the day after her party, she opened a surprise gift from "Daddy".  When I asked Harper what she wanted to give Daddy to have in his coffin, she picked a penguin Beanie Boo (that Carm originally bought).  After, she asked for it a few times but was always comforted when I reminded her it was with Daddy.  Well she got a matching penguin in the midst of getting fabulous mermaid toys. She hugged it and rubbed her face on it and was genuinely happy.  (Let's leave out the part where Fletcher took it and tore it up moments later. Don't worry Amazon Prime will save the day). I can't help but know that God is helping Harper cope even if it is super super hard on her.  

9. There were a ton of answered prayers that were super specific before we even knew how bad it was. For example, when I had a gut feeling that something wasn't right, I prayed and prayed that it would not happen until after Christmas.  That's just one example but there were many. 

10. The texts, cards, and support continue to pour in and hit me at just the right moments. The nicest card from Dr B. that makes me feel good about everything I did, neighbors making treats, a silly comment from a church member, a donation from my brother's work, surprise shirts at the Mason Dixon tournament, a large plant showing up at the door, an offer for family dinner, surprise guests at the memorial, friends flying in and out on the same day basically just to squeeze your neck, typed out emoticons from my pastor, the amazing people I inherited because of Brian, and so so so much more. All God.

11.  Did I mention I found how he proposed to me? A simple piece of paper just floating around in the night stand? That happened.

I know I am forgetting so many "God things". And yes, my heart aches. Maybe I just watched the slideshow all the way through with my mom and Harper before bed and cried my eyes out. I miss Brian so much. My life does not feel real right now. I save his gigantic shirts to sleep in. I sleep on his side of the bed.  I take pictures of funny things he writes on folders.  I put his pictures all over the house, on my Apple Watch (that he gave me for Christmas) and on my phone.  I am sad. But am I angry. Not even a little. 

Entry 5: The Third Day

The day following Brian's death have felt like this:

Day 1: It's kind of fun. The oncologist is the first person to call you in the morning when you wake up because he is amazing. Period. The best medical professional around. He cares and still wishes he could do more for Brian even though he couldn't have done anything better for us or differently. Just love him!  Your best friends come with you to do the hard stuff at the funeral home and make you feel like you are making the right decision. You visit the plot that your other besties picked out and it couldn't be more perfect. Last, it's fun because your freaking straight edged mom is getting a tattoo. Although she says I asked her the night I got home from Hospice and she had to say yes because of my vulnerable state, this is not what happened at all!  All of your friends come.  Your mom's new hashtag is #badassGeGe. You get your husband's signature tattooed on your foot. Although you may have previously thought tattoos didn't hurt that bad, you may change your opinion. Nevertheless, the day is awesome and one you will always remember it forever and ever as the day after.


Day 2: You are still busy busy!  You start to feel physical anxiety and get a little too upset when you cannot find the list you just made for Target. You have the most incredible graveside service aimed at your daughter but really it made your heart happy. Friends share stories and say really ridiculously
nice things, you make them kiss paper lightning bolts as if they are building a bear at Build-a-Bear. You say, "It's too bad we didn't meet when we were 10. Oh wait that would've been gross cause he would've been 18!"  Your daughter plays and is happy throughout the graveside service. Your brother tells you stories that you never heard.  Everyone is sad but full of love. You release balloons that had a 100% chance of getting stuck in the tree, but they all make it through and Harper says they are going to see Daddy.   (side note: I know it is environmentally irresponsible to release balloons. Next year we can do a beach clean up on the anniversary to make up for it.) His song, Release plays at the perfect moment. Then you eat Cruisers because what could be more delicious.

Day 3: You lose your shit.  Over nothing. Over a storage unit maybe not having a walkway for you between your boxes.  Your brother and mom have helpful ideas but you snap at them anyways.  You are MAD at work because the FMLA paperwork run around makes you angry.  You end up at the doctor and have to check the box widowed and you may be crying in the waiting room cause seriously...you are a widow! UGH!  You get it all squared away but are still on the verge of some emotion. Your brother works his ass off to organize the garage. You didn't realize it would make people think you were moving.  Your daughter gets in the car after school and says, "I miss Daddy."  I said, "Me too! I miss his great hugs and because he was always silly."  She says, "I miss him when he says RAWR and has candy in his mouth!" (referring to a memory at Halloween when Brian would make vampire teeth with candy corn and allow her to do it too even though we had a not candy rule.) Your heart smiles because your baby has good memories of her Daddy and can come up with them unprompted.  She is clearly impacted because of her more than usual use of the word no, increase in meltdowns, and harder time going to bed. You continue to snap at the people closest to you even though you really don't want to.  You have a serious need for control and feel totally out of control and it makes you feel like a crazy person.  Friends reach out left and right but because you don't even know yourself right now you have no idea what help you need.

So three days after losing Brian, don't feel sorry for me. I know I will get through. Today is just a sucky day where all I want is him.

Entry 4: The Amazing Human Body

Watching someone you love die is insane and surreal. It was incredibly calm.  So calm that I almost slept through it while sitting in a chair and holding his hand and laying my head on his bed. Luckily a friend had the sense to wake me up.  After this experience I am in awe of the human body and what God does for us.

Imagine going 6 hours without a meal, you feel pretty cranky right?  Imagine having to ask for help every time you needed to use the restroom. Pretty frustrating I would assume.  Imagine not drinking anything for a few days. Wouldn't you feel like crap?  With any of these three things would you be able to even form a coherent thought?!?!  It amazed me that Brian hadn't been eating, didn't drink much water, and needed assistance yet he remained calm, happy, and kind.  Because of what our bodies can do and the knowledge of sign language, Brian communicated and moved up until his last 12 hours. He continued to joke, pulled people in for hugs, signed message that were ridiculous and others that were truly touching.  He threw balls at the heads of crying friends. He taught people a new invented inappropriate sign.  THIS truly is the biggest blessing. We got to have our Brian with us. On the last morning he was alive, he rubbed my face as I cried over him and told him all that I love about him and how well taken care of his girls would be, even giving him permission to go.  In the next minute he was reaching his hand down my shirt and grinning and nodding when I asked if he was trying to touch my boobs. This is literally a few hours before he became unresponsive.

With that being said, as sad as death is and as lonely as it may feel sometime down the road, my Brian was his thoughtful, silly self until the end. His body endured and his sense remained.  His death was not full of crazy noises or an awful tragic episode.  He was surrounded by his mom, wife, and very best friends when he took his last breath.  I will cherish those last 12 days and continue to give thanks and be amazed by the strength of his spirit and the phenomenal abilities of the human body.

Also, two songs in my brain that won't leave are "Thy Will Be Done" and "It is Well with My Soul".  Maybe these will give you a happy healing cry like they do for me.

Love to you all.

Entry 3: You Watch

So maybe one important thing you should know about me is death terrifies me.  Even with a strong faith in heaven and God welcoming you into Heaven, I have fear.   Like the kind of terrify where if I lie in bed and think about getting older, I start feeling panicky and have to try to shake off the bad feelings by trying to sing two songs in my head at the same time. Try it. It's tough and takes concentration. If that doesn't work I typically turn on the TV no matter what time at night.

Knowing that you will understand the difficulty of The Watch.  Luckily, the loss I have experienced with grandparents never required me to do the watch. So I've been pretty protected from this.  So what people don't tell you is at Hospice is that you watch. You watch as your loved one declines. You watch as the jagged breathing begins and since you read the book you swear it is the end. You watch as friends hear the news and run in instead of running out (weirdos!).  You watch Monday night and swear it is the end. You watch the antics of your hilarious man shine through as he rebounds. You watch Wednesday night with more peace since he already fake died on Monday and you prepare. Then you watch as his true personality continues to shine through. You watch him throw things at people and continue to say he hates Victor. That's how you know he's feeling normal.  You watch your community come out in full force.    You watch your man because the beauty of sign language allows him to continue to communicate when it is too difficult to form words.  You watch as sweet sweet grown men breakdown, rub your husband with gentleness and kindness, and leave the room to try to be strong for me. You watch yet again a crash after 36 amazing hours.  Although these hours are amazing and joyous they are also a dagger to the heart because you know the inevitable is coming.

You just don't know when.....so you watch. So as terrifying as death is to me, I will continue to watch.

Entry 2: The Roller Coaster

So what else was I not prepared for?

The rollercoaster of Hospice....even though I read the book.

The night we got here Brian perked up. The next two or three days (honestly who can remember?? they all run together) Brian was in and out of sleep and conversations but didn't really remember what was going on or who had come to visit.  Monday night he had a weird breathing episode that made me think it was the end. [FALSE ALARM! Brian still tricking people even towards the end and making me miss The Bachelor.]

The following day, I met with social workers and figured out how to talk to Harper.  I was sad and sad and terrified to tell her and sad. However,  that girl is amazing. After my speech about, "Some people get sick and don't get better. Most of us get sick and get better. Daddy has cancer and his body won't get better. He will die soon. He will be dead."  You know what that sweet almost three year old said to me?!  She said, "In the ground?" How the hell she knew this is beyond me.  Everyone says from TV but I am pretty darn sure they haven't been burying anyone on Peppa Pig as of late.   She even came and gave her final goodbyes. Heart crushing and heart filling at the same time.  She handled it like a champ. The amazing thing is how fully she trusts me. Gah!

Another prize today! Decals delivered from Julie Stinson!

So what does Brian do after looking like dying and final goodbyes from his daughter? RALLY!  That's right.  Thursday and Friday he put on a show!!! He was talkative even though he wasn't always understood. And let me just say, thank God for sign language. Without it we would not know what he was truly trying to communicate.  even if he was telling me it was time to break up.   He recognized and acknowledged every face that came into the room.  Even though I have been here round the clock, he accused me of sneaking in and out.  He said the nurses were exaggerating and he still said he hates Victor.  He remembered jokes from 10 years ago.  It is/was quite remarkable.

While this rally was amazing for all involved it is also so sad. I wish this was not something that was irreversible. That rally gives hope when we know the end will come.

Last night he dropped off a little again. He finally fell asleep after his two day party. He has a bit of a headache and took pain meds for the first time since being here.

He still says thank you constantly, signs I really really love you to his buds, and shows expression when he's excited about visitors like his cousins from overseas or rolls his eyes when the jokes we say aren't up to his standards.

As a control freak and someone that likes to know what to expect, I hate the roller coaster, the mixed emotions, the wild mood swings, I don't want to get off but I do but I don't.  I wouldn't trade this life with Brian for anything. I'm thankful for the peace that continues to surround him and the love that hasn't left my side.

Our friends near and far are truly incredible. I am so thankful they are on the coaster with me.  Who knew the coaster would have to be this big to fit so many?!?!

Love!

Entry 1: The Unexpected

After sending ridiculous texts to my friend Mary I decided to start a silly or serious or delirious blog about dealing with death.

Entry 1:

So no one told me that I would literally watch death happen. I always knew it was likely that cancer would take Brian from me eventually. But never knew about this part.  As a planner that sucks. Someone should've warned me.  In the same thought, Hospice is amazing and totally shitty all at the same time.

So here are my random thoughts for how to deal with it all.

#1: Read the Hospice provided book called "When the Time Comes: A Caregiver's Guide".  It may make you think your loved one is dying before they actually are but better to be prepared than surprised.  #readthebook!  I also don't think it is a terrible idea to hang the book on some string with some chart paper and a marker on the door telling people who enter to sign that they have read the book or are entering at their own risk, which in turn waives their right to be scarred for life by what they might see or experience.

#2: One thing Hospice doesn't have a book for is "The Crazy Caregiver: What to expect of the psycho who stays on the couch and doesn't leave".  Although this is a work in progress and hasn't been published here is just a start.  1.  The caregiver will more than likely need Imodium at midnight on any random night.  The fear on being on the toilet instead of bedside in times of need, may cause excessive crying over digestive issues no matter if the room is full of men.  2. The person will act drunk constantly.  They may be telling a sad fear and then notice a grape on the floor that needs to be pointed out without taking a breath between thoughts. This may or may not happen but is more than likely. 3.They may be good at doing the hard stuff and making it all seem like a business transaction but then lose their marbles when they see a stretcher. 4. The caregivers teeth may feel like they're wearing sweaters even though they are brushed constantly. Just go with it. This too shall pass??? 5. May feel the need to organize the room or make a color-coded plan for an upcoming event. This too is normal. Accept your color on the chart and praise the hard work.

#3: Accept all the things. Gifts, money, food (not really cause this is great weightloss plan, unless you're already skinny of course, then eat those cocoa covered nuts), new earrings, free LulaRoe pelican leggings, a mermaid for your daughters party, raffling your upcoming football tickets for double their worth, etc.  You get the gist.  Be careful what needs you speak aloud because most likely someone will know someone who does the random thing you need or asked for and then it magically appears. Kind of like a genie lamp. So be careful with your wishes. 

#4: Basic Hospice Rule: No matter how long you are here it's "Everyone gets what they want week." Even if that means grabbing the cashew out of the thumb finger grasp of your bestie who is trying to remain on the Whole30 diet through this madness. It's allowed. Cause in Hospice everyday is supposed to be the best day ever. So everyone gets what they want. 

#5: When dealing with utility companies go for shock factor. Use the word death/dying...often. It may get them to bypass their insane privacy standards so that you can add your name to a bill. It works. 99% of the time. And then your stuff will not be shut off causing you to have to reactivate.  As the social worker advised when dealing with Harper, "gentle honesty". Works with the companies too.

#6: Turn things around on people when dealing with things you never want to deal with.  The phrase, "If it was your family member, what would you do?"  This works! Do it!


That's all for now. Clearly I am not anywhere near the expressor and writer Brian is. But this was therapeutic. Love ya! Did I mention, #readthebook!