Songs and sadness

I heard this great song today that made me think of Nolan.  Be Still by The Fray.  I put a link of it in this post. 
http://www.bubblews.com/news/8007979-yoga-tears-and-my-son

I'm sad, as always.  I just look at his picture and cannot help but feel I failed him.  How did I not know that something was wrong?  How?  How can God create a disease like Myocarditis and not give us a fighting chance?  It's not fair. 

I cannot believe it has been almost two years. 

How is that possible?  I miss Nolan so much.

Sadness

I look at your pictures, so full of life, and I cannot believe this is real.  it's been 18 months.  some people might say "get on with your life!"  and they do not know.  they cannot understand unless they have lost a child. I will never simply get on with my life again.  my life as I knew it is over.  this is a new worse life.  that's the fact jack.  it's worse.  I hate that.  I hate it for my other children.  but I can't help it

I still look at these photos of my sweet Nolan and sometimes I think it has to be a nightmare.  how can this be true?  how can something so horrible be true?

 I worry about my other children.  I see how I try to distract myself from the pain and I worry about them doing the same as they grow older.  I hpe that as children they are not effected the same way as me.

Unfairness and Reality

The unfairness of it all continues to rear its ugly head.  I think it will continue to do so for the rest of my life. 

grief is tiring. 

the reality of it is that grieving mothers do not get over it.  some may be excellent at putting on a fake face, but the reality is that we hurt inside.  and we always will

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.

ciara

I worry so much about their health.  I think she might have heartburn, but she doesn' tknow how to explain it to me. 

The World of Nolan (his blog)

So, for scouts, Nolan started a blog... he only has 3 entries.  if I can remember what I used as the password, I may start uploading some stuff to it.  if I can't, I will just put it on my own blog.  Nolan is such a creative child.  I have all sorts of artwork that I want to upload for everyone to see.  He did these funny comics/cartoons... I always laughed about how cool he was because he would be drawing religious art one moment and the next doing some silly boy humor cartoon... he was all boy, but a boy with heart and a strong faith...  so anyway, I plan to start doing that... not just bombarding you all with all my pain, but letting you see his immense talent.  he started writing so many times, writing books.  and they were great.  but he never finished.  he was a kid after all....  I truly believed that somewhere in there was a book/novel that would be written/completed.... 

I had this plan to write a book myself, kind of a judy blume-ish book geared towards the younger set (ala tales of a 4th grade nothing)... silly, boy humor...  It was (is) called "the Bully"  and Nolan was all set to illustrate it for me.... I guess I took too long to actually write it.  we have no guaranteed tomorrows do we?

anyway, today I am going to link you to Nolan's little blog.  it has 3 entries.  he had all sorts of stuff he wanted to write.  I just love the voldemort one because I am a huge harry potter fan... yes, I am.  I admit it.  I love harry potter!    so here's Nolan's blog.
 http://worldofnolan.blogspot.com

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

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?