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.

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.

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. 

Sometimes it hurts to look at your face

how is that possible?  but sometimes looking at pictures of you gets my heart hurting, my soul crying, my brain aching.  I look at those beautiful images and realize that is ALL that I have left.  I look at the ones from just days before your death and I think WHY DIDN'T I KNOW SOMETHING WAS WRONG????   now that I see them, you look so skinny.  of course, we had all been fighting a bug.  I didn't know such a horrible virus could kill my son. 
even though it hurts, I will never stop looking at your face though.  I need to see you as much as I am able.

Linking to an article about a Mother's Fear

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

This is the stuff that scares me

here's a link to info about myocarditis, what killed Nolan.  if you read the symptoms, they are so vague.  how many times have my kids had those very symptoms?  it sucks.  it really sucks that something like this exists!!!!

http://www.myocarditisfoundation.org/about-myocarditis/

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. 

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.