I’ve been avoiding writing since Jonathan died. I think about sitting down to write a blog
update all the time. I seem to always
find something else to do instead though.
During Jonathan’s treatment writing often was therapeutic for me but now
what do I have to write about? Everyone
already knows this part is hard. I
almost don’t know what to say. I think I
also haven’t written because I’m afraid to share what I was writing about 6
weeks ago. As Jonathan was passing, I
sat down each night and briefly wrote what happened each day. I wanted to remember so I could tell the boys
as they grew about when daddy went to heaven.
But as I read through what I wrote and think of what the last 4 days of
his life were, it is very hard to read.
His last few days were mostly horrible.
So I want to warn anyone reading this, that what you are about to read
is awful. I’ve been around death a
little, and heard people talk about death of their loved one. This wasn’t peaceful and was nothing like how
Jonathan and I wanted this to go. I have
a hard time thinking about it. I’ve
debated on even sharing this, but one thing I have done through this entire
journey is be open. Real. Raw.
Friday Aril 1st
Tonight I sit on the couch, in my makeshift bed, wide awake
as I watch Jonathan. I close my eyes for
a minute but I can’t sleep because I can hear him gasping for air. He is asleep.
He says he is comfortable. He tells me he isn’t in pain. But as I watch him breath I can’t imagine how
he could be comfortable. He takes a
large quick breath in and then pushes it out with such force. This is followed by a motion where his
shoulders raise and his chest presses back as you then hear a high pitch
whistle sound. I wonder how long can
this go on? I got up on the hospital bed
with him that hospice brought. I just
held him for a while. I began to cry and
I can tell that upsets him and his breathing becomes even more labored as he
begins to cry. I know he gets scared of
the feeling when he can’t breathe, so I try to gather myself and keep him calm. He whispers to me “I’m Sorry you have to go
through this.” I told him I would do it
all over again. He is worth it and I
will miss him beyond what he could ever imagine. He tells me he feels sort of afraid. He doesn’t know what this is going to feel
like to die. Then he jokes, “Well you
know, no one has really ever lived to tell about it.” After he falls back to sleep I make my way
back to the couch where I sit now typing.
I can hear Jax in the next room coughing in his sleep. I begin thinking about our incredibly sweet
boy. This morning I told the boys as
they had breakfast that I think it might be time to say goodbye to daddy. I would have grammy come get them and they
could play there until daddy goes to heaven.
Jude was totally content with that plan.
Jax on the other hand, looks at me and says “I don’t want to do
that.” I told him that I don’t know what
is going to happen and I don’t want him to be afraid or see anything that might
make him afraid. He says “Mom, if I feel
afraid I can go hide in my room until you tell me it is ok to come out.” I told him that I would talk to daddy about
what we are going to do but that I want him to know I hear what he is telling
me he wants, but that what we decide to do is what we think is best for
him. Later that morning I began to tell
Jonathan what Jax said. I think he heard
me because he came out of his room from getting dressed and walked right up to
Jonathan’s bed. He looked at his dad and
says “Daddy, I want to be here to help you.
I want to be here when you die and go to your new body. If I feel scared, I will go into my room
until mom says its ok. Can I please stay
with you?” Jonathan and Jax both began
to cry and Jon gave Jax a big hug. He
told him he was so proud of him and he is so brave and kind to want to
help. He told Jax to let us talk about
it and we would let him know what we decide.
I’m worried about what he may see, but I’m also worried he will hold
anger at me for not letting him stay with his dad. So I talked to the therapists and we told Jax
he could stay. We are going to take this
minute by minute. We will try to explain
what he can expect the best we can. He
has been helpful today. He sat and read
books to Jonathan. He did legos for
hours on the floor by his bed. He made
daddy a note and put a picture on it for him.
He helped turn on and off the nebulizer and the oxygen when daddy needed
extra breathing treatments. Until
Jonathan told him he had to go play outside for an hour or so, Jax never left
his side. He truly loves his daddy, and
not so surprising that he has a very similar heart as his daddy.
Saturday April 2nd
Today was difficult.
Jonathan is becoming agitated and not totally aware of everything. It is weird because at times he doesn’t seem
to understand certain things. (Like why he can’t shower because he can barely
stand so he gets mad and throws a towel at me saying a swear word… This was the
first time in our marriage he swore at me!)
Other times he seems totally normal and coherent. My dad followed me to my room to comfort me
after one of Jonathan’s outbursts as he knew that bothered me. He wasn’t acting like my Jonathan. He never raised his voice at me and NEVER
would swear at me. My dad reminded me
that this isn’t Jonathan. This is the
medications and warned me it may get worse.
Luckily that didn’t get worse today.
He is completely aware of awkward moments and tries to crack a joke as
usual. Today the nurses decided they
needed to give him an enema because he hadn’t went to the bathroom for a few
days. He can’t walk very well and
refuses to go on the portable toilet. My
dad told him he would help Jon get to the bathroom because Jon didn’t want me
around to see this. So as my dad held
him on the toilet Jonathan made sure to tell him he ordered a 2 for 1
special. Next it was my dad’s turn. My dad enjoyed the joke and has always loved
Jonathan’s sense of humor. I’m so
grateful to have my dad today.
Jonathan was so uncomfortable and I feel like I’m starting
to give him so much medication. The
nurses are trying so hard to help me get him comfortable. Jonathan seems to be metabolizing the
medications far faster than the typical patient. He is not resting peacefully, and doses are
maybe making it half the time they should.
I don’t understand this suffering and hope Jesus will take him
soon. But tonight as I write, I can tell
you why Jesus hasn’t taken him yet!
Jonathan feels like tonight is the night. As in the night he gets to meet Jesus. He told me he wanted to tell the boys
goodbye. So he had Jax crawl up on the
bed and Jonathan told him so many special things. They both cried and embraced for a
while. Then it was Jude’s turn. He crawled up on the bed and once again
Jonathan told Jude everything he needed to say.
They cried and held each other for a while. I then noticed Jax had went to his room so I went
to make sure he was ok. As I walked in,
he was walking to me with a book. (This
is a salvation book I bought a few years back that Jon and I have each read a
handful of times to him. There is a
prayer at the back of the book where you accept Jesus as your personal
savior. We’ve told the boys when they
are ready to say this prayer that they can tell us.) Jax looked up at me and says “I’m ready to
say this prayer mommy, can I say this prayer with you and daddy tonight?” So tonight Jax and I sat at the foot of
Jonathan’s death bed, and Jax accepted Jesus Christ as his personal
savior. He just gave Jonathan the best
gift you could ever give a parent. It
was incredible. Then as Jonathan hugged
Jax for the last time, like every night before, he whispered into his year, “I’ll
see you first buddy.” Tonight it brought
an entirely new meaning. He will not see
him first in the morning but will be waiting for Jax in heaven. As I put Jax to bed, he whispered in my ear
that he was ready to go to grandma’s house and he didn’t want to stay
anymore. I told him they could leave
first thing in the morning. I hope
Jonathan has a better night and goes quickly.
My dad is going to stay up with me as he is noticing that this is
beginning to get too hard for me to do alone and I’m exhausted.
Sunday April 3rd
Jonathan is still with us.
Last night was awful! He can’t
get comfortable, I’m giving him as much medication as I can and he isn’t
sleeping. He has been calling out to God
to take him, he is ready to go. My dad
and I tried to take shifts last night but he always is calling out for me. He just wants me. It is so sweet, but I’m also so tired. I think I was able to sleep from 2 am to
3:30. My dad tried to let me sleep at
like 5 to 6 but Jonathan started to get really agitated again. I finally just had to call the nurses to help
us. This is just too much. I also called Jonathan’s Mom and told her to
pack a bag to come over as well. This is
becoming a two person job and we need to be able to have a break. I think a team of 3 is now a minimum
requirement. The nurses arrived first
thing in the morning and are beginning to give him enough meds to tranquilize a
horse. It is working for a little while
but the nurses are shocked at how fast he is metabolizing these meds as well.
I am grateful for a few moments of lucidity that he had
today. Again today we had a few awkward
moments that Jonathan quickly lightened with his humor. In a state of agitation he must have ripped
off his condom Catheter he was wearing.
So he ended up peeing the bed when he thought it was still on. So my dad helped me get him up and cleaned
off. I got the sheets changed, and so as
I was in the bathroom cleaning the urine bag, Jonathan was laying out on the
bed totally naked. I hear him yell at me
“Hey hun, don’t hurry or anything, it isn’t like I’m laying here with my dick
out of anything!” So I hurried along and
got everything ready to put on a new condom cath. As I was putting this condom thing on him I
look up at my dad to say, “Well this is awkward… never put a condom on a guy in
front of my dad.” Jonathan quickly took
the opportunity to pipe in. “Well Randy,
you know if my pecker wasn’t so big I wouldn’t have shot the first one off in
the first place!” He still has his sense
of humor just minus a filter apparently!
Later that day He held me and kissed me over and over as we both had
tears pouring down our faces. He was holding
my face to his so he could feel close to me and I just feel like he was saying
goodbye forever. He never said it, but I
could feel it. He told me how much he
loved me. This normally would feel odd
to me kissing so much with people watching as my dad and his mom sat on the
couch next to the bed and saw the entire thing.
He even turned and apologized to all of us in the room for taking so
long to die. He just didn’t know how to
do it and he was so sorry to put us through this. (I know right?) So Jonathan and I together decided to stop
giving him water and food. He needed
sips of water to swallow pills but I told him if he asked for food or water
beyond that I would not let him have it.
(My last photo with Jonathan)
Most of the day I would try to lay beside him in bed. My ear is beginning to really really hurt
from laying and crying. I think I’ve
gotten fluid in my ear. My dad has been
an absolute angel to Jonathan through this.
These Hospice nurses have been awesome and Jonathan’s mother was just
what I needed. I knew that if I left the
room for a moment he was being loved and taken care of with the most
compassion. The support system I had in
place was perfect. Jonathan kept asking
today if the boys knew he was going. He
often asked if Scott knew what was happening.
When his mom wasn’t there he would ask if she knew he was going to
die. If I wasn’t there, he wanted me to
be there constantly. The nurses from
hospice stayed all day trying to get his medication regime down. In fact they are scheduled to stay until 1 a.m. tonight. Amy the nurse told me I needed
to go sleep. So I’m going to hit the pillow
for as long as I can. I pray his
suffering will end soon. But for now he
is actually sleeping so I will try to do the same.
Monday April 4th
Jonathan went to meet Jesus today. I’m incredibly sad for me, but so glad he is
no longer suffering. These last few days
have been awful. I spent most of the
morning laying with Jonathan. He sleeps
for an hour or so before he wakes and is moaning in pain. He can’t see really, he is unable to swallow
now and we are having such a hard time with meds. He keeps choking and this is almost
unbearable to watch. At times all 3 of
us are required to help him. It has been
nice having 3 of us as well as a nurse. We
often need a break. After pastor Joe
came to visit I went down for a quick lunch.
When I came back up Jonathan’s breathing began to change. He was asleep and I think his heart must have
finally began to give out. I held his
left hand as his mom held his right. We
cried as he took his last breath. I took
the ring off his finger and put it on my hand.
As he started to change color and his hand began to get colder I knew
this was not what Jonathan wanted me to see.
He had left his vessel and was no longer there. So I went down stairs and walked into the
back yard. It had been raining all
morning and was windy and cold. But as I
walked into the back yard the wind stopped.
I had my head down, my eyes closed and then I felt something warm on my
face. As I opened my eyes, the clouds
had parted and the sun was coming through the tall pine trees behind our house. I just sat there for a minute holding my face
where I could feel the warm sun touching me.
It was exactly what I needed. It
was my message. He was with Christ now,
and he was ok. He was perfect, and I
finally experienced peace just for a moment.
Then the wind picked up, the sun went behind the trees and suddenly I
was cold again. I turned around and my
dad was waiting for me at back door. We
hugged and cried for a bit before I asked him what I was supposed to do
now. We decided to sit down and just
take a second. I needed to catch my
breath and figure out what to do. We began
discussing how the boys should be told.
I wanted them to come home, I needed them now.
My dad called my mom to tell her how we wanted to tell the
boys. She and my older sister and
brother told the boys shortly after we called.
They decided they needed to tell dad they loved him before they came
home. So uncle randy got them some
balloons to send up. Then they were on
their way home to me.
Scott and Heidi came over and helped clean the house up
after they took Jonathan’s body. They
wanted the house to be back to normal when the boys got home. Tonight the boys are on each side of me in
bed. I couldn’t be alone tonight.
Today May 16, 2016
I will continue to blog and let you know how we are doing
now. I've been feeling guilty for not writing. I’m trying to be normal but lately
it seems so forced. Nothing feels
good. There are so many things every day
that make me think of Jonathan and why I miss him. I think I'm about 4 pounds away from the weight I was when I gave birth to Jax. I seem to be eating as a coping mechanism... So I'm now trying to get a grip on that! I hate that I don't feel normal. Things I used to enjoy I just don't. (Unless it is a cookie apparently) The boys are doing ok. We talk about daddy all the time. They miss him. Often Jude will ask if Jesus will let daddy come back for just one more day. Jax says he wants to go to heaven so he can be with daddy. He is much more sensitive and isn't doing as well. But all things considering we are putting one foot in front of the other.
I do want to share a couple of things
though. For those of you that missed
Jonathan’s memorial, I’ve uploaded it to youtube for you to watch if you
want. It was a beautiful service. Here is the link: https://www.youtube.com/watch?v=JLWcbZRU8-g&feature=em-share_video_user
Also, we are trying to make sure we have everyone’s emails
for Cancer Can’t so we can make sure you are getting updates on everything we
are doing now. Things are getting
busy! This is a great way to keep me
busy and possibly avoid my problems. But
the entire reason this program started was so Jonathan could feel good by
helping others. I’m going to follow his
example. So if you aren’t getting emails
from Cancer Can’t, Please sign up here: https://www.facebook.com/cancercant.info/app/100265896690345/
