He's Officially Older

Today is a day I have dreaded.  Today Liam is officially older than Nolan ever became.  Nolan died 9 days after his 13th birthday, somewhere in the early morning hours.  We don't know the time.  They never told us.  It could have been 12:30am.  It could have been 7:30am.  We don't know.  Would it help if I knew?

Anyway, today is nine days since Liam turned 13. 

He's already bigger than Nolan ever became.  He already has started puberty and I don't think Nolan had.  He was probably close, but he didn't have any body hair.  Liam is covered in hair and has already shaved his teeny mustache a couple times. 

Nolan is frozen in time as my sweet thirteen year old boy. 

He will never grow older.

He will never kiss a girl.

He will never marry.

He will never fall in love.

He will never become a father.

He will never go to a college party.

He will never learn to drive.

He will never go to high school.

He will never wave goodbye to me as he leaves for college.

He will never get a first job.

He will never hug me again.

I miss him so much.  None of this is fair. 

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.

guilt

Grieving parents feel guilt.  I have read numerous writings by parents who have lost a child and every single parent feels guilt.   Sometimes there is a valid reason for some guilt, but mostly there's just the feeling that we should have done something different poor noticed something that was hard to notice....

I feel guilt.  Patrick feels guilt.

The other night I was watching tv with the kids and these thoughts settled into my head....I thought "perhaps if I had hugged Nolan more tightly before he went to bed, I should have noticed his heart was beating funny. Then I could have taken him to the hospital and we wouldn't be living this nightmare."

I have lots of other feelings of things I did wrong that day, but that was a new one...

I know that there's probably no way I would have noticed his heart was beating funny, but what if???

Guilt

old people should die first

Today I read that Edith bunker died.  A favorite actress from my childhood.  Sure it is sad.  But I can't help but think. "Why did she get  to live to 80?  Why not my sweet son?   Why did he only get 13 years on earth?"  It doesn't seem fair.  I'm certain both, my mom and my dad, would gladly have switched places with Nolan.... they are merely 70 and 71 years old....still full of life.  I hate the thought of losing them....hate it.  But I know they wish they had gone first.  The day after Nolan died ((hate, hate, hate those words!!!!!!))  Our wonderful ninety-something priest went to the hospital, it was serious.  My first, selfish, selfish, selfish thought was. WHY DIDN'T HE DIE INSTEAD OF NOLAN!!!! I love this priest....love him.  But he should have gone before Nolan.  He should have.  It would have been sad, yes, but his death at ninety-something would make sense.  Nolan's death does not, cannot, will not, EVER make sense.
I had someone ask today how I was REALLY doing.... not many people ask that question.  This is an acquaintance who has really touched my heart since Nolan died.  She's one of the few who blatantly asks about Nolan and I love her for it.  Not related at all to my above commentary.... but this woman whom I barely know just seems to"get" me more than so many other s.... she asked today if it was ok for her to mention Nolan...I said YES!!! Please talk about him .  Please say Nolan's sweet name

taco bell

We ate taco bell for lunch today.  It was the first time since the day before Nolan's death.... on Dec 30, we went to church.  We were minus daddy, but plus a friend of ciara s.  We drove her home after mass.  Nolan sat in the front seat, next to me.  The kids were thrilled with my announcement of lunch at taco bell.  Daddy hates taco bell, so we don't have it too often.  Nolan had two bean burritos, his favorite.

Today, we went through the busy drive through and all I could think of was the last time we were there... how 24 hours later my world had come crashing down....  taco bell.... forever I will think of it as part of my last day on earth with my precious son.

am i ever going to sleep easy?

every single morning i wake up scared... scared to check on my children... scared that one of them will be dead.  it's a horrifying way to live, really.  is that every going to fade?  i just don't see how it will... i honestly think that will be how i wake up every morning for the rest of my life... every night i go to sleep thinking of the same thing, but i also go to sleep worrying that i may be the one to die and then they would find me and be further traumatised.  what a terrible way to fall asleep each night.  i know many of you out there would just say that i need to pray, and yes, i know i do.  but that is just hard right now.  I tell my daughter not to worry so much... I know I am worried too.  Even more than she is because I understand genetics. 

autopsy results and more

today, ciara asked "what if we have the same thing as nolan?" or "what if it's contagious what nolan had and we get it?".... she doesn't even know about genetics.  she doesn't even know that i am so fearful of this exact thing (not the contagious part)....

today, we received verbal autopsy results... patrick has been calling every monday.  it has been 10 weeks.  70 days.  70 days.... how can that be?  seventy days since we lost our son.  seventy days, well 71, since i hugged him.  since i heard his voice say "i love you mom"....

autopsy results:  the results said "natural causes".... yes, you heard me right... natural causes... a 13 year old boy died in his sleep, after going to bed seemingly fine, from NATURAL CAUSES....   what absolute utter crap..... yes, crap.  or shit.  or f....d up messy shit.  yeah, this makes me cuss.  yes it does.   and i hate cussing.  i hate the F word. 

so... what is next?  we will do genetic testing on nolan.... that will cost us around $3000.... and it is not even an all-inclusive thing... it will test for various heart genetic stuff.   there are other genetic things too..... but it gets expensive.  we can't afford more than the $3000 for this heart stuff.  then after testing nolan's dna, if it tests positive, then i guess we test the 4 other kids.  but nolan's test will take around 6 months.  what if someone else dies in 6 months?????

nolan's autopsy results were never going to bring him back.  they were never going to make me feel "good".... but now, knowing that his heart JUST STOPPED.... well, i am scared as hell for my other children.... any single morning i may wake up to another dead child.  or one day, liam could be playing soccer and he could drop dead on the field.  or i could die.  and my poor children could wake up to find me dead.  then how would they handle life?  i am already scared for them.  dealing with this loss of nolan... dealing with this crazy feeling. 

i think how their world has been turned upside down.  i think how you try to make your children feel happy and secure in life.  i think how you try to create a safe world for them.  i think how you tell them when they are scared to go to bed in their room at night, scared of shutting out the lights, that nothing can hurt them.  that mom and dad are right in the other room and that they are safe....

yet..... they woke up on december 31, 2012 and their 13 year old brother was dead. 

how do they reconcile that?  how????? i honestly don't know how they can ever have faith again.  how?  

ciara (before the loss of nolan)  "mom i am scared"
me (before the loss of nolan)  "we are right in the other room, nothing can happen"

nothing can happen.... 

your 13 year old brother can go to bed after praying the rosary with your dad, then watching doctor who/ and monk with us, kiss his mom goodnight... say i love you.... and die. 

what am i suppose to tell you?  what??????

so now we wait for children's mercy.... we wait and pray.  and wonder if we are going to lose other members of our family.  we wonder how to move forward when we are grieving AND we are scared.  it's not fair.  the worst part is the grief.  i will never get over losing nolan.  ever.  but i have to fear on top of it.  i have tyo be scared as hell.  i'm so scared. 

is it any wonder i want wine every night?