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?

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.

 

 

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.

Heartbroken

Celebrating birthdays together, as a family. 

 We will never be complete, ever again. 

 This crack in the foundation of our family is irreparable. 

 How do you mend a broken heart?

 You can mend one of those romantic heartbreaks. 

 The heartbreak from losing your child is total destruction of your soul, your spirit.

 The heartbreak from losing your child is brutally painful.

 The immense hole in your life cannot be filled and will forever remain empty.

 There is a hazy cover of sorrow that shadows you, always.

 The days of being happy go lucky are no more.

 The days of belief and understanding of the world are gone.

 There is nothing you can do to fix it. 

Joyous Grief?

How do you put the two together?  Joy and grief?  How? 

Grief often feels like it is swallowing me whole. 

I've talked about the physical feelings of it.  It often feels like I am drowning. 

I miss my son so much.

Yet....

He's not my only child.  I have four other children who do bring me joy. 

I smiled today as I watched the youngest run down the hall nearly naked because she needed to reach the bathroom.    Seeing her chubby little legs moving like that brings me joy. 

My eight year old son is still so young and sweet and innocent.  His voice still has that childish quality that makes me melt inside when he says I Love You.  He brings me joy when he snuggles next to me on the sofa.

Then there's the eleven-year old daughter who loves to be helpful.  And you can tell just how much she still needs her momma and daddy.  Her smile brings me joy.

Of course, there is sometimes discord between the thirteen year old son and myself, but I love him.  He is fun to sit and talk to as he grows up.  He still likes to snuggle in next to me on the couch.  He brings me joy.

But I am sad.  I have a hard time rectifying the two. 

I do put myself in the here and now most of the time.  Then I feel guilty because sometimes I push Nolan's image out of my head.  I am sad when I look at him.  I miss him, I want to look at him. 

It's not easy.

And it's not right.

A mother should not bury her child ever.  The child should bury the mother.  When they are both old!

Thirteen years was not enough time with my son.

Worries for the PTSD Mother

 

I'm tired of worrying so much.  I have always been a worrier.  Before I even had children, I had a friend who called me "The Worrying Walrus" (because she had read a children's book titled that).  Add children to the mix and then, of course, I worry about them.  Add the death of my son to our lives, and worry has become an enormous weight. 

So many fears exist now, fears that, perhaps were there, but were miniscule. 

 

My twelve-year old (who turns thirteen next week) worries me.  First of all, I have this worry that I will lose all my children at age thirteen.  It's an unreasonable fear.  I have no valid reason to feel that way.  I'm just scared. 

 

However, my twelve-year old has been complaining of neck pains for almost a week now.  I seriously think it is probably just a pulled muscle.  He feels fine otherwise.  He even remembers when it started, specifically, like he pulled something.  However, it's just not getting any better.  Again, it is probably just a pulled muscle. 

 

But what if it isn't? 

 

I don't know what else it could be, but I'm still scared. 

 

I hate the fear that is in my life now.  I hate it.

Post Traumatic Stress

I suffer from post-traumatic stress because of the death of my son.  I am certain that my children do as well.  I'm not sure about my husband.  He keeps his grief pretty close to his chest.  He also has a much stronger faith than I which seems to help him.

Finding my son dead without warning is an image that is embedded in my brain.  I still hear the screams of my other children.  I still hear my husband saying, "Nolan, don't be dead!" over and over and over.  It has faded a bit after nearly two years, but it's there.  It:  the memory that I never wanted.

Finding out that Nolan's heart simply stopped because of a condition called Myocarditis which was caused by some random every day virus makes raising my living children filled with this big question mark, this huge stress, this worry.

My twelve-year old often complains of chest pains.  He has been to the doctor, the er, a cardiologist many times since Nolan's death.  Everything appears healthy and normal.  Of course, Nolan's heart probably appeared healthy a month before his death as well.  How can I reconcile this?  How can I try to tell my living son that he has nothing to worry about?  I don't want to turn him into a hypochondriac. 

My eleven year old daughter didn't sleep much for the first year or so after Nolan's death.  At some point, she started asking me at night if her heart was ok.  She said it hurt, it felt funny.  We also took her to the specialist for evaluations.  She seems fine as well. 

My eight-year old doesn't seem to worry at this point.  My three-year old was young enough when it happened that I don't think she was phased by everything.  Oh, she misses Nolan, but she didn't understand what was happening when she saw her mother scream and fall to the snow-covered ground. 

Part of the worry I have gives me this horrible feeling of wishing my children would hurry and grow up and move out of the house.  I will always worry about them, always.  But I get so tired and exhausted from the sight of Liam putting his heart over his chest and Ciara asking if she's going to be ok.  I understand it.  And I love them so much.  And down deep, NO, I am not ready for them to grow up and move out.  It's just the stress on top of the grief. 

This myocarditis stuff isn't as rare as you would think.  I am currently a part of a group of people who have been affected by the condition.  This group has over 800 members.  There are many times this is misdiagnosed.   The numbers are much higher than that.  I hear story after story that is like mine where someone went to check on their loved one and he/she was simply dead in bed with no warning. 

It's not fair.  It's not right.

This is my silent scream

because you know I need to scream

inside I yell always

I tell myself that I HAVE THE WORST STORY OF EVERYONE!!!!!!! MY LOSS IS THE WORST.

outside I know that all of our losses are horrible

but i'm selfish

I only care about my loss of my sweet Nolan

he should be here and I am silently screaming at all times

yes, it has been 18 months and for those of you who do not have a heart, let me tell you that IT HURTS JUST AS MUCH TODAY!!!!!!!

this is hell

the other day

my mind was full of thoughts to put here.  where did they go?  my mind isn't the same since Nolan's death.  motherhood, in general, has given my brain a run for its money.  add in the death of my son, and my brain is just a little bit of a mess.  I can't remember to mail bills.  I am overdue on things all the time even when we have the money to pay the bills.  i'm a disaster on two feet who'd like to just lie in my bed. 

Linking to an article about a Mother's Fear

http://www.bubblews.com/news/2930461-fear-of-a-mother

elusive sleep

since Nolan's death, my sleep has been messed up.  initially, there was a real fear that made me incapable of sleep.  that eased up a bit, but I still couldn't sleep.  it's been fifteen months.  sometimes there are nights that I feel scared as hell.  I watch the other children sleep.  I check their breathing.  I still do.  will I always?  other nights, I just can't sleep.  my brain won't do it.  I try.  other nights, I fall asleep, then I wake then I can't fall back to seelp.

sleep has been so troublesome since Nolan's death.

it makes my everyday life difficult.  getting up and facing the day is hard.  we sleep too late.  getting u pfor anything important is very iffy.  we hve overslept manytimes the past fifteen months.

I hate it.

I hate everything about this.

fear

I've voiced my fear many times on this blog.  Tonight the fear feels fresh. We have a tummy bug.  I fear for everyone, but mostly logan because he has been fighting a different bug for over a week now.  so his immune system is already weakened, his lungs are weak from his asthma, now he has the stomach virus.   but I am scared for all my kids.  I keep checking to see if they are breathing. 

Grief

http://www.bubblews.com/news/814483-grandparents-and-grief

myocarditis

what happened to Nolan is not as rare as it sounds and not as rare as it should be.  I recently joined a facebook group devoted to myocarditis.  it is so scary how often this happens.  sometimes people survive.  somehow they figure out something is wrong before it is too late.  but most of the stories I have read have been almost identical to Nolan's.  so many parents had no warning, just like me. 

I go to bed scared every night.  scared of my children, my spouse, myself dying... and now I see it's not so farfetched.  I met a woman on this group who had two children get myocarditis and one died and the other had a heart transplant....  TWO CHILDREN IN THE SAME FAMILY HAD IT!!!!    yes, i'm scared.  it makes me want to become like Monk from that tv show and make the kids crazy about washing their hands and germs....  I've always been so laid back about illness because I've always been told that it helps to develop immunity if they catch what is going around.... the ones who are sanitizing everything aren't building that immunity.  geesh.  I just dont' know if I can change to that person.  but I need to. 

Nolan's wasn't for sure viral.  but it was myocarditis.  and it can be various things.  but my dr did seem to think since we had been sick that it was probably viral.  it just hit him differently.  everyone I know was hit hard by bugs this year.... It was one of those years.... yet no one else had a child die because of it....

i'm scared.  and I don't know how I will ever rest easy again. 

we are all scared.

tonight, just a few minutes ago actually, instead of saying "goodnight, I love you mom" ((like he usually does and he did earlier)) Liam said "i'll see you tomorrow mom"....  it's like we are all trying to convince ourselves.  Ciara says that too a lot at bedtime.  It's scary as heck as for me.  So I think of what must be going through the minds of the kids.  They don't talk about being scared.  But I know they must be.   Just realized on vacation that Logan is checking everyone to make sure they are breathing.

Our dog is sick.  We aren't sure what's wrong.  Going to the vet tomorrow.  Liam and Logan both started to cry tonight when I talked to them about the possibility of having to put willie to sleep.  I just wanted them to be warned. 

A pet's death is the first death a child should have to handle... not a sibling.  But now, I don't want them to have to deal with a pet dying either.