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

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.

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.

Details of Your Last Day on Earth

You played airsoft guns with this neighborhood kid named Jacob that I disliked.  (not to be confused with the neighbor friend named Jake whom I do like.)

 I remember yelling at you that you knew I didn't want you playing with him, but you wanted to play airsoft. 

I grounded Liam that day for some reason from playing outside. 

I regret that because that's the last day on earth he and you could have played together like you had for the previous eleven years.

So instead you spent time with that other kid. 

 I felt like crap that day and actually took a really long nap which is unusual.  I NEVER EVER NAP!!!  Ella cooperated and slept with me.  I was in bed for probably four hours that afternoon.

I regret that.

Your last day on earth with me and I slept.  And when I woke, I was grumpy.

 For lunch we had taco bell and you were so grateful.

For dinner, we had leftover potato soup.  Although you often liked potato soup, this wasn't my best.  You weren't thrilled (no one was, not even me). 

You used the restroom around dinner time and it was a number two and was the most foul smelling number two ever.  I remember saying something to you about it.  I remember wondering if that was a sign something was wrong.  (after the fact)  Being that it was your heart, I doubt it, but who knows.

You told me to look at your teeth because they looked whiter.  I paid very little attention.  I hate that.

Your dad worked a long, long day.  He was barely home with you on your last day.  I am sure he regrets that too. 

Ella behaved horribly at mass that day.  Horribly.

We watched the Avengers. 

I was in the middle of reading Lord of the Rings for about the fifth time.  I haven't read it since. 

You prayed with your dad before going to bed. 

Ciara, Liam, and Logan all slept in the living room.

My house was a mess. 

I replay that day often.  My last day with you.  It was actually kind of a crummy day.  I didn't know.  How could I have known?  I often wonder what if you had collapsed that day when we were all awake. 

What if?

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.

Family Nights, Saturday Nights, Not the Same

As I have mentioned before, grief is exhausting.  I'm sure some of you know this for yourselves.  Those of you who don't, feel blessed.  I had no idea how tired I would be all the time from this hell. 

Today I was thinking perhaps we should play board games tonight as a family.  We haven't done that forever.  I don't think we have even done it since Nolan's death.  I am not sure.  I think one night we played charades briefly.  That's all I can remember. 

We didn't play board games as often as we should have before Nolan died, but at least we tried to sometimes.  We were supposed to that night actually because it was New Year's Eve.  That was the plan.  Junk food and board games.  Instead we had death and sorrow.

So today I thought about it.  I thought how much fun board games can be for the family.  I thought how we spend so much time at home just sitting in front of the tv or in our own rooms or on a video game or computer.  Then I felt tired.  And I remembered that it takes energy.  Especially with my three-year old around.  She takes a lot of energy.  And I'm just so tired. 

Therefore, I have a feeling we won't play board games tonight, even though it would be nice.

Warped Thoughts that I Might Think, but Will Never Speak

As I woke the children to start our school day this morning, I walked by the bedroom in which my husband was sleeping (we seem to play musical beds in our house, so today he was sleeping alone in one of the children's rooms.).  As I saw his still body, my brain said to myself "He's probably not dead." 

Seriously. 

Who says crap like that?

Oh yeah, me.  The one who has to face every morning with the fear that I might just find another child dead in his/her bed.  Normally, my husband is awake before I am.  Thus, I am normally not faced with that thought of "is he breathing?"  Today, however, he slept a littler later than I. 

It's really a sucky thing to have to think about each and every day.  There is this fear that is just THERE.  Some mornings it is worse than others.  I think today was worse because I went to bed worrying about my twelve-year old. 

I've also thought things like:  would Nolan still be alive if I had ran away a few years earlier?  (btw, my husband and I had just hit a rough patch like all couples do, it never actually neared divorce... just some less than perfect days of marriage).  But I do wonder if I had changed MY path, that would have changed Nolan's.... and he would have not been anywhere near that HORRIBLE virus that attacked his heart.  So it stands to reason that he would be alive.

What if we had moved?  In 2010, my husband was offered a job in New Mexico.  I had NO desire to move there (neither did hubby).  However, had we moved there, Nolan wouldn't have been near the same germs.  So we would be living in New Mexico as a complete family.  Nolan would be alive if Patrick had taken that job.

I've had other messed up thoughts, but I'm too tired to share them right now. 

Grief is exhausting.

Photo credit:  my own

The Day my World Stopped

December 31, 2012, my world stopped.  Everyone else just kept going, some of them sad, but their world was still moving, going. 

It has been 16 months, I think.  Funny how time has become so confusing to me.  I think I'm calculating this nightmare correctly.  16 months since my beautiful son died.  16 months since my world changed forever. 

My world is still stopped. 

I now have two lives.  One before Nolan's death when life was good and normal and happy and filled with ordinary pain and suffering and stress and things.  And the second life is post 12/31/12.  Post-Nolan.  How is it I lived 30 years without him before his birth, but living without him the past 16 months is unbearable.  Post-Nolan life is confusing, vague, nightmarish, void, bitter, painful. 

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.