The Grief Chronicles: 1123

I just wrote this on my other blog
https://thegriefchronicles.wordpress.com/2016/01/29/1123-days/

I wish I had Faith

Faith would help.

Not only is my faith in shambles, I am cynical.

I want to believe.  I need to believe.  But I don't think I believe in anything anymore.

A New Post...

i guess due to google/blogger's annoying issues with adsense, i haven't written here in awhile.  i'll share a post i wrote ELSEWHERE.....

https://wordpress.com/read/post/feed/36926556/893795453

My Dad and my son

My dad is a wonderful grandfather. He loves each of his grandchildren dearly. I feel so blessed when I watch him with my children. He always had a special spot for Nolan. Oh, I am sure he has a special spot for each of the grandkids. But there was a special bond between him and my son. They would talk about coin collecting, play the piano together, talk about scouts, music, birds. It was beautiful.
When Nolan died, one of the hardest things I had to do was call my parents. How do you deliver such awful news over the phone? I opted to call my dad on his cell phone rather than my mom. I thought it would be "easier" for some reason. One of the many things from that horrific day that will forever be burned in my memory is telling my dad and hearing him scream "no!" then crying to my mom that Nolan was dead. Then she was screaming too. The agony in their voices was so immense.
My dad has always been a sort of poet. Every year he writes a Christmas poem in the family Christmas letter. He'll jot down other little rhymes here and there. After Nolan's death, he wrote a beautiful poem to honor Nolan. I'd like to share it with you. Not only will you read the love of grandfather for grandson, but you will also get a sense of who Nolan was.
Poem for Nolan
by Winston Johnson
When I see an eagle
In beautiful flight
A natural wonder
A natures delight,
I'll think of our Nolan
Who loved things so right.
And watching them soar,
With all of their might.
When I see a boy,
With a sly impish grin
And a trick deck of cards,
Or a tack or a pin,
I'll think of Nolan,
Who joked with his kin
And really, at times,
Was ornery as sin.
When I see a young man,
With a smile on his face.
Helping his mother,
With love and with grace.
I'll think of our Nolan,
With never one trace
Of bad in his heart -
Nor any disgrace.
When I hear a piano,
Swaying away.
To "Away in a Manger"
Asleep on the hay.
I'll think of our Nolan,
And our Christmas day -
The joy he would bring,
As he'd grin and he'd play.
When I'm on the prairie,
Out there alone -
No cars passing by,
No TV, No phone.
I'll think most of our Nolan.
In hills of Flint stone,
I'll bet he can hear me.
Out there in God's zone.
When I see a boy scout,
Show red, white, and blue
And make his folks proud
Of whatever he'll do,
I'll think of our Nolan
And how he just grew
To be a young man
So straight and so true.
Whenever I'm stuckin
The muck and the mire
And later I'm struggling
Right down to the wire.
I'll think of Nolan laughing
And I shall move higher
To a place warm as toast
Like a warm, cozy fire.
Photo Credit: My own
Poem Credit: with Permission, by my dad, Winston Johnson
+Grief +Grievingmother +Grieving-mother +Poetry

St Patrick's Day without You

sad days.... always sad days

here's a post from my other blog
http://www.bubblews.com/news/9898691-missing-him-a-little-extra-today

Jealousy is Ugly

yet another story being shared of a child who we are praying for who is getting better. 

it's not that I don't want that child to get better.

I do.

I just don't understand why we couldn't get a miracle.  I don't understand why we didn't even have a chance.  My son died in his sleep with no warning.  How the hell is that fair?

Dates Don't Mean Much

Here's a post from one of my other blogs.
http://www.bubblews.com/news/9745841-dates-don039t-mean-much

More Links to Bubbles about you

http://www.bubblews.com/news/9765117-grieving-in-the-days-of-online-social-networks
http://www.bubblews.com/news/9760006-strength
http://www.bubblews.com/news/9759907-i039m-not-visiting-the-cemetery-today
http://www.bubblews.com/news/9757984-potato-soup-and-fear
http://www.bubblews.com/news/9757469-two-years-ago
http://www.bubblews.com/news/9751746-a-birthday-party

fear sucks almost as much as losing you

in bed, scared.  2 years ago you went to bed and didn't wake up.  we had no warning.  no real warning. 

you were 13

now liam is 13.  and he is always worried that something is wrong with him.  what if someday something actually is wrong and I miss it because he has always worried for no reason?  what if?  that scares me.  i'm scared of losing him.  i'm scared of losing all of my children.

I hate that you are gone Nolan.  it's not fair.  it's not right. 

I miss you.  I love you.

two years.

Christmas Eve

Two years ago, I had five living children in a house too small for their growing bodies.  There was rowdy wrestling, loud boys laughing, happiness. 

Christmas Eve was a lovely evening at mass then home to get ready for bed for what would be our final Christmas as a complete family.  We had no idea. 

How could we have known?

A Prayer

Please God, Sickness now frightens me.  And it's not a normal fear.  It's irrational, yet very rational because I know what the sickness can do.  But please, please, please.  I beg of you.  Let the sickness pass us by this year.  Help me to be better about keeping my kids away from germs.  Please.  And if we do have to get sick, please let it not kill us again. 
Please.

I Hate Being Sick

Viruses are now potential killers and it scares me.  I hate the fact that I am queasy and feel slightly achy.  I hate it.  I hate worrying that my kids might die.  That I might die.  That Patrick might die.  That my folks, my friends, my family might die. 

Why would you invent something like myocarditis God?  Why?

The Fear is Too Much

The fear is too much.  Sometimes I just cannot handle this.  I wonder how to go through the next however many years of my life with such fear coursing through my body all of the time.  You add the fear to the grief and i  think it is taking such a toll on my physically, mentally, spiritually.

Get Me Through This (Then What?)

The expectations of getting through the holidays when you are grieving can be a bit much.  You know everyone is wondering how you are doing.

 You know that you wonder how you are doing.  But you keep "doing"  

And there is this build up. You know it's not going to be "right," but you try to make it wonderful for everyone, especially the kids. 

And honestly, even for yourself.

It's bad enough that God took your son, should He take all of your happy moments too?

So you try to enjoy it because you always have. 

 Christmas is your favorite time of the year.  And it still is.  Yet it is the most difficult time as well.

But let's face it.  EVERYTHING is difficult now. 

Saint Patrick's Day parade:  difficult

Summer Vacation:  Difficult

Swimming at the pools:  Difficult.

Party with friends:  Difficult.

 So the fact that the holidays are "difficult," really doesn't make them any different than the rest of your life these days. 

Life as you knew it is gone.

You have now entered "the new normal."

 In some ways, the joy of the holidays provide so much other distractions that those moments of distraction are pretty good. 

That doesn't mean you don't cry. 

That doesn't mean, in fact, that you aren't crying more this month of December.  you are.

After you make it through this, the second holidays, the second death-iversary, then what?  Does it get easier?  Some folks say it does.  I'm not sure that "easy" will ever describe this. 

It's like a man who loses his leg.  He will always miss it.  He learns to live without it because he has no choice. 

But he will always walk with a limp. 

Viral Myocarditis Brings Fear

Two years ago, I had never heard the words "Viral Myocarditis."

 What I would give to go back to that time before I knew about it.  What I would give to go back to a time where I didn't know how it can ruin lives.  What I would give. 

Myocarditis killed my son. 

Myocarditis is an inflammation of the heart that can be caused by numerous things, but the most common is a virus. 

Is it some bizarre unusual or rare virus?

NO.

Sadly, it is not. 

Any virus that strikes any person can decide to go haywire and attack the human heart.  And without warning, your child can die in their sleep. 

When this happened, the doctor told me that it is just so rare.  So rare. 

Yet, I joined a group on Facebook and I see many, many people who have experienced the same thing as I.  If their child or loved one didn't die in their sleep, they collapsed in front of them, never to wake. 

Some survive. 

Some are conscientious of their symptoms and seek medical help in time. 

The problem is the vagueness of the symptoms. 

There can be chest pains, of course, but sometimes there are not.  There can stomach aches, flu symptoms, headaches, fatigue.  The heart rate will most likely be elevated. 

But guess what?  So many other viruses have those symptoms that it is often missed! 

So now I live in fear. 

 

I fear for my other children, my husband, myself.  I am so scared of contracting any virus.  so scared. 

 

I can't seem to become one of those people who remember to use the hand sanitizer constantly, but that is what I want!!!  I don't want my children to touch anything. 

 

Of course, I can't stop that.  We are social creatures who interact with others on a daily basis. 

 

If we don't, my husband does. 

 

I pray and pray and pray that God will let all the viruses skip us this year. 

 

Because I am so freaking scared.

 

 

I Was a Zombie Last December

The overwhelming power of the grief was debilitating last fall.  I felt on the verge of a nervous breakdown.  Thus I felt compelled to seek medical help. 

Due to constant anxiety attacks and an inability to function, I started taking a daily prescription drug for anxiety and depression.  My brain is foggy at the moment, but I think it was Zoloft. 

As it set in, I noticed the anxiety begin to subside. 

However, so did the emotion.

I am an emotional person.  I like to cry.  I know that sounds odd, but I do.  It feels like a release.  I love a good sentimental movie, song, or book that brings the hot, salty tears to my eyes. 

As the medicine flowed through my system, I felt incapable of crying.

By December, I was completely ON the meds.  As I reached first after first after first, I felt sadness.  Yet the sadness merely simmered beneath the surface.  The tears just wouldn't come out. 

I felt like a zombie. 

I didn't like it. 

I don't remember the date, but sometime after the holidays I began to ease off the daily meds by cutting the dose in half.  At some point, I was done completely. 

By this point, I was exercising again and keeping the anxiety SOMEWHAT at bay with that. 

I cannot stand the anxiety that makes me feel incapable of functioning, but I also could not stand feeling like a zombie. 

So here we are in December of 2014 and I am hitting second after second after second.  (along with the occasional first as well).  And there are tears. 

And I suppose that there should be tears. 

If this has to be my reality, which I wish to God it wasn't, but if it is, then there must be tears.

The Gripping Fear in the Back of my Mind

 The human body is a complicated thing.  And it's a scary thing because something can seem so harmless yet still kill you. 

 Or there are those things that can be SO many things:  chest pains can be stress, heartburn, imagined, or something fatal.  Tummy aches can be just about anything. 

 I've always been a hypochondriac, so I never wanted my children to worry as much as I do.  When they would tell me things were bugging them, i'd worry, but I would tell them it was nothing.  With four children with asthma, we were often at the doctor (were/are).  If their chest hurt, it usually was an asthma thing.  Chest is such a big area.  Is it chest?  is it heart?  is it lungs? 

After Nolan's death due to a heart condition called Viral Myocarditis, the other four children had complete, thorough check-ups.  We took them to heart specialists.  Two of them wore monitors.  One in particular has said off and on since Nolan's death that his heart hurts.  Another says EVERY SINGLE NIGHT, "do you think my heart is going to be ok?" 

We have had them checked.  Everything looked fine.

The problem is that something like viral myocarditis isn't a lifelong condition.  It can come on from a virus, suddenly, and you can be dead in a week with ZERO warning.  Or the warnings are so vague that they could be the flu, asthma, anything. 

So I am filled with fear CONSTANT FEAR that it's going to happen to another one of my children.

My second son just told me his chest is hurting and it has been.  He is the one who seems to think something is wrong constantly.  I am sure it's nothing, but then again.... I could be wrong.  And my mistakes can be fatal.

This sucks.

Pictures of You

I'm thankful for photographs of your beautiful face.  How I wish I had more.   There are days when I am looking through old pictures and I notice one with you in the background.  I get to see an expression on your face that I haven't seen in nearly two years. 

 Even the blurry photos of you are meaningful to me.  I have on on this post that is blurred, but it is you in the middle of being silly.  I look at it and want to see you act silly again. 

I do not know how anyone could ever think that a mother gets over the loss of her child.  I've heard the words "letting go" and "moving on" too many times from people who have never lost a child. 

People have often said how lucky I am to have so many photos of Nolan.  It's true.  I do feel grateful to have so many pictures of his beautiful face.  There are moments that I look at them and suddenly it hits me that the photos are all that I have.  I'll see his sweet smile and suddenly feel sick to my stomach.  I'll remember that he is gone

It's not that I ever forget that he is gone.  However, some moments I am actually in the moment of what is happening in the here and the now.  Then a physical feeling overcomes me.  I am not sure how to describe it, but it is an actual feeling that my body experiences.  It is sort of like a chill that travels through my entire body, often originating in my stomach, and it has a hint of nausea to it.  Then it reaches my throat and sometimes it makes it hard to breathe.  Other times it makes me feel like throwing up.

Two years later and I still experience this often. 

A grieving mother does not get over it. 

She learns to live with it because she has to.

Too Much Information

I'm not sure what this person was thinking.  Well, actually, I guess I sort of do because it is a place to let it all out (our grief, our pain.). 

I have this Facebook group that I joined for people who have either lost someone from Myocarditis or who have suffered it themselves (and survived.)   Mostly it is folks like me who have lost someone.  More often than not, people do not survive because there are such vague, easily missed symptoms.

A couple weeks ago, I posted a question asking other members how many of their loved ones had actually died in their sleep without warning like Nolan.  This post has had an enormous response creating quite the thread.  Most were told, like me, that he most likely simply died in his sleep peacefully. 

You know the fears I have, right?  Fearing that he awoke, scared.  Fearing that he suffered, afraid.  I have imagined that for these 678 days with such agony. 

Yet, everyone says, he was peaceful.  He died in his sleep. 

This woman commented on my thread today.  The spouse of her married adult son was in bed with him when he awoke in the middle of the night.  He bolted upright in bed making gurgling sounds before falling over in a slump. 

Now I am imagining this for my sweet Nolan.

His bedroom is next to mine.  The night he died, I thought I heard a few noises in our hallway or something, but we have pets.  So I often hear things.  He was found in bed on his stomach. 

I won't ever know, but now I have a new horrible image stuck in my head. 

I wish this other mother would have thought about that before sharing so much information, but I also understand why she did. 

The whole thing sucks, for me and for her.

677 Days

Today has been 677 days without my precious Nolan.  I have such a hard time wrapping my head around that still.  Yes, I have accepted it.  I have no choice as it slaps me in the face each day.  I may have to live with it, but I still hate it with every fiber of my being. 

Here's a poem I wrote today as I thought about the last two years.
http://www.bubblews.com/news/9336739-677-days-a-poem