my last day with nate

i have no idea if this blog is appropriate, but this is for me. this is my therapy. all my life i journaled at night and since having kids, thats totally gone out the window. but i need this. i need to type this out. i need to be able to look back on this and not forget any details. it was absolutely, without a doubt, the worst and most beautiful week of my life… or as nate used to say of his diagnosis “its the worst best thing thats happened to me.”

it all started on monday of last week, january 28, 2019. the day after cal had left to go back to seattle. i told him “this isn’t a good idea to leave” but he promised he’d be back when i needed him. every morning i take a LONG bath (that i don’t ever feel bad about) and i open the windows beside the tub. i watch the squirrels chase each other through the trees, i watch the birds come and go, i watch the woodpeckers peck, and on a great day i see my (guardian angel) hawk in the tree above me…sometimes he even sings to me. i usually read my devotional, meditate, pray, and just soak in God’s glory through those windows. its my favorite part of the day. the kids get iPad time and i usually get left the hell alone. ha! but on this morning, i heard loud footsteps crunching the leaves in our yard. these sounded different than the normal morning sounds. i jumped up and looked down to the ground to see a pack of coyotes in our yard.

it was amazing. i loved watching them and what a special treat. i’m very into native americans and how they find meaning in earthly signs. i immediately begin to google the meaning of coyotes. i found lots of info that was fascinating but read “they believed the coyote was said to bring natural shifts in balance, causing an end, and making way for new beginnings. essentially, the coyote is the “way-maker” of new direction as it went about its symbolic role of representing the cycle of life/death in nature.”

i don’t take stuff like this lightly and really hold on to God showing me things. next, i heard a SHIT TON of birds and about 20 blue jays flew into my trees. i’ve never seen a flock of blue jays, never EVER. first of all, blue jays were a joke with nate and me. he had someone ask him to paint a “blue bird” a while back and he painted a blue jay. we all laughed and told him that was a blue jay and not a blue bird. i said “nate, blue jays are like the biggest bird assholes. they take over the bird feeder, shove other birds out of their way, they’re loud, and honestly just annoying. plus, the mock hawks and hawks are MY ANIMAL.” my mom chimed in and agreed with everything i had said. nathan laughed at us and said “i don’t care, i like them.”

and right before i’m about to get out of the bath, my hawk came. he sat so majestically up in the tree and stared into my window. he sang a little for me and then left.

i had an appointment to be at, a shoot, and wanted to spend some more time with nate because i knew things were getting worse by the day. i had sweet friends volunteer to babysit (thank you katy, mackenzie, and lorraine!) so that i could get all that done. as i pulled out of the driveway, i saw my hawk was back and he was watching over our home.

i drove away with tears in my eyes and thought “is today going to be the day we lose him?” it wasn’t the first day i had thought that…trust me.. there’d been many… but that hawk brought me peace. i knew God was watching over us. i head to my appointment and as i’m about to leave i call my mom and say “hows nate? whats going on?” i called her about 15 times a day for updates. its so so so so hard to have three kids, with their dad across the country, and be a mile away from your dying brother and want every second with him but also can’t because you can’t have a babysitter 24/7. so i learned to be ok with calling mom for constant updates. this time when she answered she said “you’ve got to come quick, we’re watching the coolest thing on the monitor. nathan has an aura dancing around his head!! the nurse is giving him a bath but wherever she moves him, it goes!!!! we’ve tried adjusting all the blinds and everything but it doesn’t change anything.” and you guys, the sun was directly overhead because this was noonish, so it COULDNT be direct light. i had her send me a few videos and i could kind of see it but wanted to see with my own eyes.

i get there and grab the monitor and am    B L O W N    A W A Y. mom and debbie we’re right, there WAS an aura dancing.  i sat and watched while his hospice nurse, stephanie, checked his vitals.

it looked like an electrical storm of blueish white sparkles that moved and changed shape, but always following his head. it was ALIVE! i made my own video of the monitor and then decided to go in and see if i could see it with my own eyes in the room. i greeted nate, and for the first time EVER, was not greeted back. i filmed elizabeth sitting and holding his hand to see if my phone could pick up what we’d seen on the monitor but it couldn’t. and when i walked back out to check the monitor again, it seemed to be dying down. i walked back in the bedroom and sat beside him.  mom and elizabeth were going through his t-shirts and pulling out the ones they wanted to get rid of that weren’t special (even though they all felt special to me…i’ve got some enneagram 6 in me.) as they folded and sorted the 142918048 t-shirts nathan had packed for knoxville, i saw his entire body begin to convulse. i had seen nathan have several partial seizures but (thankfully!) had never witnessed a grand mal until this day. i yelled “he’s having a seizure!!” i laid my hand on his arm and liz ran for the liquid ativan. she put it in his gum line and he made a horrible face because he HATES the way it tastes. the last grand mal he had, he spit it in her face and even remembered doing it later.  i look at the clock (which he made us have EVERYWHERE!!!!) and begin to time the seizure. it started right at 4:15, which was when i was supposed to leave for my shoot, and lasted until 4:17. as his body slowly began to calm down he started to groan, it scared me and i thought he wanted something but couldn’t tell us. he wanted elizabeths hand. she grabbed his and he squeezed her hand three times. i told her it was probably “i love you” but she said it felt different that time, more rhythmic and involuntary. i had my camera in the car and said i wanted to get a REAL pic of them holding hands. mom wanted one too. i told nathan “i promise i’m not getting your face, don’t get mad at me. its just your hand.” he didn’t respond. then elizabeth offered him some water, which had to be thickened with thick-it so he wouldn’t aspirate. i felt like he had calmed down enough for me to leave and was glad he was finally having a drink. i told him i loved him and patted his feet and headed out the door to work just like he’d want me to do.

the shoot was strangely warm for january, but as the shoot went on a chilly breeze picked up and storm clouds began to roll in. i felt the symbolism creeping in. after i left the shoot, i immediately called mom for my update. she didn’t answer. i called 3 more times and no answer. i was starting to get panicky. i called my step-mom and she answered in a whisper and told me nathan had been puking up all the water we had given him when i left. this had also happened the day before and it really upset me…that his body would reject one of the most crucial parts of sustaining life. she told me she would have mom call me when she left.

mom planned on staying that night with one of her best friend’s who lived in the same neighborhood since there was a chance of snow. she wanted to be able to get to nate if she needed to and not be snowed in at home. i got home from my shoot and had nothing planned for dinner for the kids. my brain was fried and i thought “lets just go get zaxbys, those commercials for the caribbean jerk chicken looked really good.” i get fast food literally MAYBE 2 times a year. not because i have the best diet, but if i’m eating junk food thats not what i’m picking…give me all the pasta or chips. i load the kids up and we head to the zaxbys closest to home…they say “were out of caribbean jerk sauce!” i speed out of the drive thru PISSED. i told the kids we’d try another zaxbys because that sauce was THE ONLY reason i was willing to go to zaxbys. we drive 10 miles away to another one just to be told “we’re out of caribbean jerk sauce.” i was getting too tired to care anymore. i ordered the food and said “lets have a car picnic.” vance refused and said he’d ONLY eat home. while we were eating my mom called and said that she was finally leaving my dad and debbie’s house and heading to the Blount’s to stay the night. when we got home, i got vance’s food all ready for him and said “boys, i need to go relax and take a bath to calm down from today. when vance gets done, y’all come up and get in the bath.”

i had been in the bath maybe 10 minutes when my dad called and said things with Nathan were declining RAPIDLY. he said he didn’t really know what was going on but that it wasn’t good and they had called Stephanie (his hospice nurse) back over to the house. at this point, stephanie is off work. the hospice company would typically send whoever was on call but SWEET stephanie came over during her time off….she had never even gotten to eat her dinner. dad calls back again a few minutes later and says “if you want to say goodbye, i think you better come on.” i frantically called cal’s mom and she rushed over to babysit for me. i jumped out of the bath, threw on my favorite grateful dead tee and ellis came up and said “uh mom, you forgot to give us a bath.” i said “well buddy, i am actually going to go hang with uncle nate for a little bit.” he said “oh dats fine. i will take care of my brothers.” sweet el was ready to babysit everyone haha.  i told him “remy” was coming to babysit and he ran downstairs to tell vance and simms. simms said “sooooo this is our FOURTH babysitter today? okkkkk.” like some kind of annoyed teenager. cals mom arrived within minutes and i could feel myself starting to have a panic attack as i head out of the house.

even though the storm clouds had been rolling in at my shoot, it didn’t start raining at my dad’s until i pulled back in for my goodbye. i immediately thought of the rain as tears and remembered how Jesus wept for lazarus. i walked in and jumped up on the bed beside nathan’s bed. i will probably have trouble describing these moments because, honestly, they were the most traumatic of my life. his hands and face were blue. his breathing was HORRIFIC. his heart was beating as fast as if he was running a race. he was running a race, his last race. i could feel the heaviness of the room and it felt like it was crushing my chest. i thought “what do you do in a time like this? do you sit and watch him struggle to breath and gasp for air? how do you cover up the sounds of his lungs filling with fluid? do you mindlessly check instagram to try to distract yourself from the horribleness happening around you? what THE FUCK do you do?” debbie came in and said “would you like some champagne?” i said “why not!” she brought me a glass (or 3?) of chandon (which was a wonderful vineyard that we visited with nate and such a great memory) and i drank it like water. then debbie started offering everyone sandwiches.  we all laughed and said she was like the grandma in “bad santa” always making those sandwiches. i’m sure debbie was having the same thoughts as i was and she chose (like she often does) to serve. she made sandwiches for my mom, elizabeth, and stephanie. i was getting to the point of watching nathan all i could. up until this point, i had continued to lower the bar for what version of nathan i was ok with, as long as it meant he didn’t die. i could handle him losing his running ability, then his walking, his speech, his ability to eat real meals, and on and on and on. i didn’t want to let him go and would continue to be ok with his declining condition. i just wanted him here forever….until that night…january 28, 2019. when i saw nathan that night, it all changed for me. for the first time i thought “Lord take him.” stephanie informed us that nathan was in a coma, his blood oxygen was 50. she assured us that he couldn’t feel anything happening but that they would continue to give him pain meds every 30 min to keep him comfortable. it was getting close to be 11 pm and we sat down for the “how much time do we have?” talk with stephanie.

the problem was, stephanie didn’t know. he was the youngest glio patient she had ever had and MOST DEFINITELY the most physically fit patient. nathan’s fears (of having a super healthy body and a failing brain) were coming true and it was crushing all of us. debbie called my AMAZING step-sisters in laws, brittany and diana,  (is that a thing? they’re basically my sisters) who are both PAs to come take over so stephanie could go home. stephanie sat us down to talk while we waited on them to arrive. she said she didn’t know how much time he had…it could be minutes or hours or days. she just didn’t know. all we knew was that he WAS dying. i said “well, if you knew nathan as REAL nathan, he was ALWAYS in a hurry to get to the next thing. he didn’t have any patience and was already ready for the next thing.” everyone laughed and agreed with me. brittany and diana got there and stephanie went through everything with them. it had been 30 minutes and it was time to give him his next pain med dose. elizabeth put it in his gum line and began to massage his jaw, like she had been taught and done before, but he started to cough and choke and gurgle. at this point, i’m going into a panic that he’s about to die right there in front of me. brittany and diana jump in and re-adjust his airway and massage and get him calmed back down. elizabeth said “well y’all are in charge of that the rest of the night. i’m done!”

this was such an UNREAL gift that brittany and diana gave her. on nathans last night, she was able to step away as caregiver and just be a wife. it made my heart happy. everyone left the room and we were discussing leaving. snow had been forecast to be on the way and i didn’t want to be snowed in there. since everything was uncertain, mom and i decided we’d go back and rest. i walked into the room, where nate laid alone, and told him the last things i had to say and i kissed him on the forehead and walked out. i knew it would be the last time i saw him alive. i just knew. i looked at his clock (that was a little fast of course and it said 11:11)

when i started the car i saw it was still 11:11. i didn’t have any wishes left to make. but john 11:11….

“11 After he said these things, he added: “Lazarus our friend has fallen asleep, but I am traveling there to awaken him.”

Jesus was coming to take him home. For most of this whole journey, i’ve been pretty numb. the former over-emotional teenager has grown into an emotionless adult.  but on my drive home, i wept. i pulled out of the neighborhood where we had played as kids without a care in the world and thought “how will i go on?” it rained the whole drive home. i told cal’s mom to leave her phone on in case something happened in the night and i wanted to go back over and she graciously obliged. i got in bed and couldn’t decide if i wanted to keep my ringer on or off. i played out both situations in my head and before i could truly decide what was best for me i fell asleep. at 2:50 am something woke me up, i don’t know if it was Jesus, an angel, the Holy Spirit…i don’t know! but it was the kind of awake where adrenaline is pumping and you think “did someone break in?” i was WIDE awake and frantic. i grabbed my phone and thought “did i miss it? did he die and i missed it?” i had no calls and no texts. i sat the phone back down and it lit up the room. mom was calling. she told me he died and she was heading back over. i called cals mom and she said she'd be over in 5 minutes. i got dressed, went to the living room, and fell to my knees in prayer. i don’t even remember what i prayed, to be honest. i felt like i was living someone else’s life. mary got here and told me to take my time. i told her i wouldn’t stay long because i didn’t want her to get snowed in, but we laughed because it was still only raining.  i grabbed my bottle of “trauma life” oil and took deep breaths and headed out the door.

when i got back over to the house, i still didn’t know if i wanted to see nate. i was afraid….afraid my last memory of him would be a horrible one. how could anyone want to see their brother dead? but i put one foot in front of the other and walked in that bedroom. do you know what i saw?  IT WAS PEACE. my fears were laid to rest, i wasn’t watching nathan suffer anymore and i was finally watching him REST. it was one of the most healing experiences i have ever been a part of. God knew i needed that and i am forever thankful that he woke me up out of a deep sleep so that i wouldn’t miss it. we all covered ourselves in trauma life and laughed about how we needed to bathe in it. but in that moment, i didn’t feel trauma. i truly felt peace that surpasses understanding. i kissed him on the head one final time and left to go home.

i got home about 4:30am…or maybe it was 5… i really don’t know. i tried to fall asleep, but this time, really struggled to. i had probably been asleep 30 minutes when the boys said “mommy!!!! look outside! its snowing!!!!!”

i jumped up and looked outside and it took my breath away. it was absolutely beautiful outside. i jumped in the bath for my typical routine and glanced out to see nate’s favorite bird…..

only a God full of love could bring so much beauty during the worst week of my life. i have made it though this week only by God’s grace and all my family and friends supporting us. you guys have prayed for us, fed us, got us hotels, brought champagne, babysat, sent flowers, sent songs, planted trees in isreal with nathan’s name, and on and on and on. i am so incredibly humbled by your all’s love. thank you all for being steadfast during this 43 month journey. you are OUR people and i hope i can be at least half the friend back to each of you.

lastly, i’ve had tons of people wanting to see my song of songs that i compiled for nathan’s funeral in written form. i hope you guys will find these songs and think of nate as they play…

This is the day that the Lord has made, let us rejoice and be glad in it.

Let’s not forget these early days

Remember we begin the same

We lose our way in fear and pain

Oh joy begin (DMB)

Pictures and photographs 

Memories and windows 

Goodbyes and epitaphs 

Heartbeats and hellos (Vertical Horizon)

And don't we have photographs

Taken a long time back

Of the seasons we have known? (David Wilcox)

I always knew that you'd do great things 

I didn't ever want to slow you down 

I was there when you learned to use your wings 

And I saw you leave the ground (Blue Merle)

I've got friends here that love me 

I've got all this mercy beating in my blood 

And I've got friends here that love me 

And that's something good (Bebo Norman)

I don't want to sound preachy, make it feel all wrong

Just want to write some kind of lyrics, sing a feel-good song (String Cheese Incident)

Do you remember

When we were small

Do you remember

When we believed

There was gold in the river

And ghosts in the attic

Don't go up there alone

The enemy's coming

We will take cover

The odds are against us (DMB)

I remember when we used to sing, we danced outside in the pouring rain. (Not too late, moon taxi)

Ride my bike down that old dirt hill

First time without my trainin' wheels (DMB)

Here's the old man who used to be the child

So long ago, not so very long though

Look at the memory, think of all those years

Looking through the sparkle of the sunlight in the tears (David Wilcox)

As all the ravens fly away

They leave nothing

But the sun and endless blue day (Sean Watkins)

Oh, I've seen fire and I've seen rain. I've seen sunny days that I thought would never end.

I've seen lonely times when I could not find a friend, but I always thought that I'd see you again. (James Taylor)

These times can take their toll sometimes and I know you feel the same way too (Drive By Truckers)

If we were vampires and death was a joke

We'd go out on the sidewalk and smoke.  (Jason Isbell)

—

How 'bout you take a ride with me

We could kill some time, shoot the breeze (DMB)

I'm gonna take you to a special place

That nobody knows

Baby get ready, ooh

You and me going fishing in the dark (Nitty Gritty Dirt Band)

further down the river, further down the river (Incubus)

When we see fishes

When we go fishin

......Thoughts meander

Risin' all around us

Rise and fall and rise again

Oh, we stop and talk about it (Widespread Panic)

The mountains win again (Blues Traveler)

—

all i wanna do is be by your side

take a little ride (DMB)

And we're rolling down the windows for this ride

And there's not much time to take things slow (Widespread Panic)

Because the streets are alive with the sound of Boom, Bap

Can I hear it once again (Michael Franti)

turn up the woofers so I can feel the beat

vibrate my belly like a bomb in harmony (Michael Franti) 

Singing' don't worry 'bout a thing

'Cause every little thing gonna be alright (Bob Marley)

Screens popping out the dash

On pellissippi speeding fast (Mr Mack)

I glance in the cut and see my homie Nate (Nate Dog and Warren G)

You said good friends are hard to come by

I laughed and bought you a beer

It's too corny to cry (Indigo Girls)

Way up high

The little folks zooming by

Ask them why

Or if they know the way we're goin' (Bela Fleck)

At the waffle house

Under these cobalt skies

The drivers with bloodshot eyes, hallucinating

At the Waffle House (David Wilcox)

We were heathens in their eyes at the time, I guess I am just a Heathen still (Drive By Truckers)

—

You know where I want to go

Straight down the Mississippi River

To the Gulf of Mexico (The Band)

I dig my toes into the sand

The Ocean looks like a thousand diamonds (Incubus)

she was a girl, he was her boyfriend,

soon to be his wife, take him as her husband, 

a surprise on the way any day any day,

one healthy little giggling, dribbling baby boy (DMB)

Jack was really a jester

Who held his one good eye on the queen

And there sat the king beside her

He's pointing his sword up and down with every scene

And the wizard's in the corner

Catching peanuts between his teeth

And the dogs lying in the shadow in the archway

There's one good dog sleeping 

filled with good ol' dog dreams (Widespread Panic)

—

And when we walked into the day

Skies of blue had turned to grey (Widespread Panic)

The world is blowing up

The world is caving in (DMB)

we just try to ignore the elephant somehow (Jason Isbell)

So many roads, I tell you

New York to San Francisco

So many roads I know (Grateful Dead)

From california to new york island

From the redwood forest

To the gulf stream waters (DMB)

Could I have been lost somewhere in Paris (DMB)

And you are not the same

It hurts my eyes to see the change

I'm seeing through you

I'm seeing through you (Blue Merle)

confusion never stops

closing walls and ticking clocks (Coldplay)

Racing to the end, won't give up without a fight

I don't know how you do it, a never-ending light

I can't see it from your view, couldn't imagine if I tried

Staring down the dark, with your eyes open wide (Moon Taxi)

When you show me love

I don't need your words (John Mayer)

In this scene set in shadows

Like the night is here to stay

There is evil cast around us

But it's love that wrote the play...

For in this darkness love can show the way (David Wilcox)

Brother, lay your head down

Sister, don't you know?

Ain't no rest in worry

Troubles come, troubles go

I have seen the sparrow

I have watched it fly

Though she does not worry

Tell me why should I? (Pat Barrett)

When you're flyin' high, take my heart along

I'll be the harmony to every lonely song

That you learn to play (Nickel Creek)

But I know its time 

Yes I know its time 

It's time to go home (Michael Franti) 

All my days I prayed and prayed and now I see the finish line

Oh I'm gonna finish mine (Chance the Rapper)

Your broken body, it cannot weather

The years your youth still longs to spend

So go down graceful, sleep with the angels

And wake up whole again (Bebo Norman)

We need the light of love in here

Don't beat your head

Dry your eyes

Let the love in there

There's bad times

But that's OK

Just look for love in it

And don't burn the day away (DMB)

Until we meet again

Until it's like it was

Until then

Until the answers start raining down

Until the skies open up until the trumpet sounds

Until then (Citizen Cope)

Far away, but the message somehow carries

Beloved, it is time for you to rise. Time for you to RISE UP... (David Wilcox)

Tonight I rose up with the moon,

And looking down from high above

I saw a world carved and confused

Into valleys deep in need of love

And falling down all thick with grace,

Heaven's cloud of mystery

Was filling every empty space,

Down to the depth of human need

This love that heals, it's deeper still (Bebo Norman) 

I fix my eyes on the Author of my life

May I realize that Your glory far outweighs this simple life

Oh may I, may I open up my eyes

Lord open up my eyes (Shane Bernard)

Know it's a wonderful world, if you can put aside the sadness

And hang on to every ounce of beauty upon you

Better take the time to know it (Drive By Truckers)

You see you got magic

So just sit back relax

Enjoy it while you still have it

Don't look back on life man 

and only see tragic (John Butler Trio)

But it never did occur to me to leave 'til tonight

When I realized he'll never be alright (Jason Isbell)

when it seems that death has won

buried deep beneath the snow

where the summer leaves have gone

the seed of hope will grow (David Wilcox)

i live my life beyond each death

from the deeper well of trust.

to know that when theres nothing let

you will always have what you gave love. 

in this life the love you give

becomes the only lasting treasure.

so what you will lose will be what you win

a well that echoes down too deep to measure (David Wilcox)

Angels whisper so as not to wake you

There's nothing else in this whole world for you to do

But follow on to where your dream may take you

To see your footsteps from an eagle's point of view (David Wilcox)

Sometimes we have a hard time letting go, letting go. I love you, I love you one more time just so you know, just so you know (Moon Taxi)