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.

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.

the basement

Nolan, I wish you were here to see what I have been doing in the basement.  I have been working so hard to make it a space we can actually use.  I have cleaned, decluttered, painted, bought too much stuff, hired someone to build a wall and do some electrical work. 

Today, I sat down there for a few minutes and all I could think of was  you.  I was thinking how you need to be here to enjoy it.  I was thinking how you would be begging for it to be your bedroom.  When you were here, we were falling all over each other in our small house.  We needed more space.  Then you were gone and our house felt empty. 

It still feels empty.... you aren't here.  there's an emptiness that is unbearable. 

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

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.

hell

I'll be brief.   This is hell.

found a poem today

found a letter tonight, in the process of getting ruined thanks to a spill in the basement, Nolan wrote it to us while he was at scout camp in the summer of 2011. He wrote a little poem in the letter that seriously could have been written today, part of was unreadable, but I think I got most it. here it is:
I miss home and you
In the days that have gone
Many things here are new
As things are to a faun
I've been here so long
But home does not fade
I remember you guys
As I sit in the shade
I know that I will see you soon
And by and by
And I can't believe I'm lucky enough to tell you
I love you and goodbye.

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?