no matter how much I "move on"....

I can't stop thinking about what I have lost.  I can't hug my son.  My sweet, first born son.  How can I not hug him?  How can I not kiss him goodnight?  Or hear his voice?  Or see him laugh at something silly? 

Nolan was such a good boy.... but he was a boy... he'd think some of the strangest things funny.  He'd pick on his sister.  He'd grumble when I asked him to do dishes. 

but he'd do the dishes.... and he would do them well.  He always did a good job at the jobs that he was given....

and he would apologize to Ciara without my prompting when he realized he was being a little mean.  He wanted to do what was right.  He wasn't perfect, so he didn't always do what was right... but he tried.  He'd make up for it when he realized he didn't.  And he'd usually feel bad about it.  He had a strong conscience pulling him in the right direction. 

I try to push myself to be strong... to accept this loss.  to accept what has happened.  because, well, let's face it, what choice do i have?  it happened.  it is our new reality.  i choke back the tears several times a day because I don't want my kids seeing me cry all the time.  even though i'd like to cry all the time.  i turn my thoughts from Nolan to something trivial like a tv show or pinterest (or a tv show pin on pinterest) trying to forget the hurt I am feeling.  because it is a constant stabbing pain.  it's there. always. 

i'm still struggling with sleep.... some nights I get just a couple hours... often, i will make up for it the next night.  night before last i probably had 2 hours sleep, but last night, i slept probably between 6-8.  but the lack of sleep on top of the sadness and pain makes me grumpy.  i want to kick myself when i hear the grouchy tone i take with my kids because you would think i would learn my lesson that i'm not guaranteed a tomorrow with them....

that's the thing, we are not guaranteed a tomorrow with our kids, with our parents, with our spouses, with our friends.  i learned that the most horrific way possible.  without warning or reason.  i lost my son.  he's gone.  i didn't get all the tomorrows i thought i would.... most of my regrets about what i thought i would do "soon" with him are trivial, yet significant to me because they should have been done or could have been done.... and now never will be done. 

yet, i still find myself not being the best mom to my remaining on earth children... i'm grouchy, grouchy, distracted, busy, grumpy, not the kind of mom i have ever wanted to be.... yet i am.  i lost Nolan, yet I am still not being the kind of mom I should be to my children.... why?  why can't i?   let's face it, even before Nolan died (i hate those words), i wasn't the best mom.  i was often grumpy, distracted, busy.... i am rarely cheerful.  what is wrong with me?  i know right now i have reason to lack cheerfulness.... but i need to be cheerful for my children.  period.  last year, someone on facebook posted this thing at new years about picking one word to be your resolution for the year... i chose cheerful.... did i do it?  nah.... why don't i smile more?  why?  my kids need a mom who smiles.  remember in the little house on the prairie books?  laura was always talking about her mom's smile... i bet you'd never hear my kids talk about my smile.... i need to change that.... in my "moving on" and getting on with my life, my new normal as they call it, i need to smile more... even though right now, in the new normal, smiling is hard as hell.  it's probably more important than ever....

how horribly we need answers

i know i have already said this & i don't want to be a broken record.... however... i just have this fear that i am going to lose all my children, one by one to some genetic something or other... whatever took my nolan....  i'm so scared.  i'm TRYING to allow myself to sleep, knowing that being awake really can't stop genetics from happening... however, as i talk to my kids and say "when you grow up"  or "when you are married" or "when you have kids" or "when you go to college".... all i can think is "will they?????"  will they have the opportunities that nolan didn't?  will they grow up?  will they get to be married?  will they go to college?  will they have jobs?  will i get to be a grandma?  i'm so, so, so scared.  we called the coronor today, still NOTHING....

my boys are dancing to gangham style and working up a sweat, working out their cardiovascular system... and instead of thinking "how awesome?"  i am thinking... oh please, don't let them die tonight.  i hate this. 

i worry because of her worries

Ciara....my sweet girl.  her fears since Nolan'sdeath are making her miserable.she worries constantly.   if Liam and Logan go to the playground,she watches the clock until they return, asking the whole time "do you think they are ok??"   she'll ask me to go check on them.

if i leave the room to go to my room or the basement or just anywhere that doesn't see me, she starts yelling for me or looking d for me.

she always feels funny or weird, her tummy often bothers her.

she still asks every night at bedtime if she is going to die tonight,if anyone in our family will die tonight, if everyone is ok.  she gets up to check if Liam is breathing.  she will finally fall asleep sometime after midnight.

she hasn't sat in her room and just played dolls since Nolan's death.  my sweet girl

Logan

tonight Logan put on some of Nolan's footie pajamas that are four sizes too big for him,but he said"I don't care, I want to wear them because they were Nolan's".... i wonder what goes through that sweet,innocent six year old mind.   Logan is a perfect combination Nolan and Liam....i see both of the big boys in my baby boy....

it is Saturday

i went to target today....even target makes me sad.  how many hundreds of times have i taken Nolan to target with me?   the recent memories make me sad because ....

 Nolan had recently purchased himself a chameleon which he named rango.  boy, did he love that creature!   for his 13th birthday, all he wanted was a bigger habitat for him.  he took such good care of him.  he bought crickets from petsmart to feed him.  I'd let him walk to petsmart to buy crickets...giving him some freedom as he was growing up,growing so responsible.  he loved petsmart, he asked the employees how old he'd have to be to get a job there.  other times, I'd drop Nolan at petsmart while i shopped target.  he'd buy his crickets then meet me at target...I'd see his lanky boy body walking toward me,I'd always feel a bit of relief when i saw him.  it was hard giving him that bit of freedom, but it was good for him and he liked it.   i looked down the aisle today at target thinking Nolan should be there, walking toward me with his bag of crickets.

such a difficult day

i don't know how to be happy anymore.  my home just feels so dark and sad.  i can't seem to breathe right. it's stifling, oppressive.everyone else goes back to normal.  the sympathy cards have stopped.  the constant asking my kids to play slowing down.  everyone else can just move on.  i can't.  nothing can take away the emptiness that fills me now.  how can i be happy when I'm so empty

snow

I hope that someday my first thought when it snows isn't about the day Nolan died.  I have always loved snow.  It's such a beautiful thing.  I've always loved to live somewhere with 4 seasons.  Yet, the way Nolan was found that awful morning will always be etched into my snow memories now... Liam ran to tell Nolan it was snowing with such enthusiasm as I was about to rush out the door to do some grocery shopping before Ella awoke. 

Liam told me once a few weeks ago that he is glad it was snowing the day Nolan died because that meant we found him sooner rather than later.  We may have just thought he was sleeping late & well, it would have been later.  I do like the fact that Liam looks at it that way, with a positive spin on it.  I'm grateful for that.  I was afraid he'd look at the snow in a bad way too. 

At some point, I want to think of happy snow memories... Although with my crummy memory, who knows what I will ever remember... I do remember Christmas Day 2009 we stayed here & it was so snowy & we sledded in our backyard on & off all day as a family.  That was a great day.  My favorite snow ever.  Patrick probably has better snow memories because he is the one who would pack up the kids & take them sledding on suicide hill.   He was able to do that with the kids a few times.  I wish we lived close enough to walk to some good sledding sites.  Our neighborhood is very hilly.  I always say I think that there should be one street that closes off on snow days like today. 

Nolan loved the snow.  No, he loves the snow... He's still alive in Heaven & his love of nature is still alive as well.  So Nolan loves the snow.... just like he loves the hot summer days when he can be outside in a pair of shorts and nothing else.  Just like he loves springtime flowers and autumn leaves.  Nolan has always appreciated God's beauty. 

why didn't i.....

listen more that last day, December 30, 2012.....

play a game with the kids like apples to Apple's....

smile more that day...

have a long meaningful conversation with Nolan....

turn off the freaking tv....

put away my dang kindle and phone....

make him sleep with us....

get up earlier and check on him...

at the hospital,after his death,my insides were screaming to climb  on that gurney and hold my son in my arms...for some reason, i was trying stay in control...so i didn't. why? why did i need to stay in control? my son had just died.  no one expected me to be in control.  why didn't i follow my heart and hold my son???? why?

broken heart

i was reading today about how grief can literally break your heart and you can die from it.  i see that.  i physically feel awful and i know the lack of sleep can't be good for my health.  i need to be healthy for my other children though.

we picked out Nolan's gravestone today.  this just truly sucks

denial?

today i tried to just not think about Nolan...i made a conscious effort.  it made me feel like such a traitor to even try.  some days all i it's wallow in my loss...today i just tried some moments of denial.

the thing is i want to t think about Nolan,i want people to share memories or stories about him.  no one is doing that.i want friends to want to listen to me talk about him.  i need to talk about him.  i was writing memories in my Nolan journal and i can't find the darn thing.  i need the memories.

the denial attitude can work for an hour, a few minutes, whatever you need, but it is no long term solution...long term, i need talk about my son,listen to others too

need distractions

distractions, keeping busy, loud kids, pinterest, facebook, tv, movies, words with friends, occasionally real friends stop by, cleaning house, shopping, drinking some wine...distractions.  i need them.  they help.  they keep my mind occupied and sometimes the pain gets pushed an inch,not much,  but  a little.  sometimes,the day is just so extra horrific that no distraction helps.  but i need life to distract...when my mind goes to the fact that Nolan is gone, that i can't hug him, that i can't talk to him, that we buried his beautiful body, i feel like my life is over.  so i need distractions

Siblings, Happiness after our Loss

I read something last night in about the best grieving book that I have read so far.  It is called Roses in December and it's the first book that I have read that has actually had a more hopeful tone to it.  The author is strong in her faith, which I think is key to surviving something like this, possibly even thriving.  I can't imagine myself ever "thriving" again, but who knows....

Anyway, there's one chapter in the book written by the older brother who has lost not only one sibling, but three.  He says something about how it's normal and natural to grieve and be sad in front of your kids.  However, at some point, the kids shouldnt' see mom and dad always being sad.... At some point, mom and dad need to be happy again.  Otherwise the siblings will think something like "well gee, only so and so could make mom and dad happy, I guess I'm not good enough to make mom and dad happy".... And really, that does make sense.  They see mom and dad sad for years, then they will feel like the family's happiness was all tied up in the other child.  And that isn't fair to the kids. 

Our grief is still so brand new.  It's still just raw as hell.  I honestly can't imagine ever feeling hopeful again.  However, reading this book, this mother lost 3 children over the years.  And she sounds hopeful.  She's still sad.  She still misses her children.  But she has found a way to be happy.  And the sibling was happy.  That's so important. 

rough day

i miss you Nolan, I love you

the unknown

it is hell losing your thirteen year old son....hell.  the hole is so immense, the pain unimaginable.  the heartbreak is so unbearable.  but then to have this big question of what caused it hanging over your head is enough to drive you crazy.  i go to bed in fear every single night.  so does my nine year old daughter.  I'm convinced now that i have what Nolan had and that my kids are going to lose their mother.  I'm scared,so scared,that my other four children all have it and that one by one I'm going to lose them.  I'm scared that Patrick could be the one with this awful genetic thing and that my kid s will growup without a father.  the fear is its own hell.  so I'm living in two hells

the joys of being a child

today the three middles or three oldest depending how you look at it have friends over.  we met at Mass for Ash Wednesday.  the three extra kiddos rode home with us.  first we stopped by sonic for fish sandwiches for lunch.  now children are playing happily.  there is just a simple joy in spending the day playing with your friend.

since Nolan's death,the kids have remained fairly busy with friends which is a blessing.  they need it.  they need to be happy kids.

if only ciara had a friend to see right up until she falls asleep....then perhaps every single bedtime she wouldn't be asking if she's going die in her sleep that night or if someone else in our family is going to.  every night.  several times each night.  it is horrible.

i fear, truly fear that we may be looking at this genetic heart condition that has some big word....but it essentially leads to enlarged hearts, arrhythmia,shortness of breath.... it causes those expected deaths on the basketball court, those we hear about, but it also strikes in your sleep.  the reason i think we will find out that this is it be cause of my own health..... now i need to call myself a cardiologist.... our insurance is barely insurance....so not looking forward to more bills.

in the meanwhile today my kids feel some happiness which brings me a little happiness as well

genetic testing and cardiologists

today i have the three youngest at children's mercy cardiology dept for ekg, echos, General heart listening stuff.  Liam already had all this done about four weeks ago.  he is currently wearing kind of weird monitor.

on top of this,we still await autopsy results.

i communicated with the children's mercy geneticist today.  looks like post mortem testing is not covered by insurance.  so we are looking at approx three thousand dollars to test Nolan's DNA.  wonder if other four Will be covered

days without tears

at this point, there are none.... there are tears every day.  some days, though, i make it the whole day without one of my extremely big losing it moments...  those usually happen a couple times a day or at least once a day.... but i have had, oh, maybe 2 since that horrible, horrible day 6 weeks ago, where i managed to just shed normal tears.  but there hasn't been a day without tears.  i don't think there ever will, to be honest.  there will always be moments through the day that will make me think of what should have been, could have been.... but what isn't... and yes, there will be tears.  tears for my handsome son who should be growing into a handome man.  he's not here.  and that is the most horrible thing in the world. 

normal

having some normalcy today.....it feels wrong, but i know it has to happen.... Nolan, you are always, always in my thoughts.  i love you so much

friends

i wonder what you think, Nolan, about the enormous outpouring of love and support that we have been receiving.   we talked more than once about me being lonely, wishing sometimes the kids were in school so we could be a part of s school community.  you would simply encourage me to get to know other moms better.  you might say"what about so and so?"  i miss our .  talks.  honestly, we didn't have big deep talks much (i think you saved those for dad & i would have the deep ones with Liam)....but we always talked.... one of my biggest regrets is that i was often distracted or busy.  every conversation we had the last day or two, i was distracted.  i keep thinking of those.    gosh, i hope you could tell how much i love you

God please, please let us know what caused this

tonight i couldn't keep my eyes open.  i fell asleep holding this kindle fire in my hand.  exhausted as i am however, i awoke within minutes, stepped out of bed to make sure that Liam was breathing.  i placed my hand on his chest and breathed a sigh relief at the feeling of his heart beating.  how many times since becoming a mom have i checked their precious heartbeat, their breathing?  mostly in that first year of life when i have feared sids, but sometimes i have checked even as they grew older.  did i ever really think i would experience that moment of horror that i experienced on December 31?

Ciara and Ella are both sleeping with me.  i their breathing throughout my sleepless nights.  Patrick is sleeping with Logan and I'm sure every night he is doing the same with him.   i know he checks on Liam too.  this will go on for the near future, but how far into the future?  this is taking a toll us.

today i heard of an acquaintance who has a friend that lost her nine year old child about a year ago unexpectedly in his sleep, like Nolan.  their autopsy results came back inconclusive.  they have no idea what caused their child's death.  they too have other children to worry about.  how can this happen?

i'm so exhausted.  i pray that God allows us to have an answer....a medical answer

today was so wrong

the weather was gorgeous outside this afternoon, one of those winter days where everyone is in shorts, and, if you boys have your way, barefoot.  this was your kind of day Nolan.  you would have taken a walk in the neighborhood, then i would have made you take Ella for a walk in her stroller.  you would have climbed the tree in our backyard.  you may have walked to petsmart for crickets.  you'd have played with your shut soft gun and perhaps shot your bow and arrow.  you would have tried to convince us to start a fire in the pit after dinner.

you would have been living life like the outdoorsy thirteen year old you are.

through tears, i said to ciara that you were enjoying yourself even more in heaven.  however,that doesn't make our life without you any easier.  i just hope there are some awesome trees that you get to climb..

thirteen

there is nothing about this that seems right,  nothing.  how can the death a beautiful thirteen year old boy be meant to be?

but you know that saying about how our children are merely on loan to us from God?

as i try to find some teeny,itty bitty bit of solace, i think of something that almost makes "on loan to us" thing seem like it really applies to Nolan.  the day Nolan,my sweet love,my boy, died, December 31, 2012, was exactly thirteen years since he came home with us.  he was brought home from gottlieb memorial hospital December 31, 1999, exactly thirteen years before he was taken from us.   i find something about that striking.

Nolan wasn't growing the last two weeks in my womb.  if my Dr hadn't been very thorough on that Dec 21, 1999 appointment, Nolan would have died.  he was born nearly six weeks early, but was the size of being eight weeks early.  he was three pounds, twelve ounces, a sweet tiny boy.  i loved him immensely immediately.  he only had to stay in the hospital nine days,then they sent him home with two parents who knew nothing about being parents, but knew we loved this small being more than we had ever loved anything before.

at four months of age, Nolan spent a few days in the hospital with rsv, breathing problems.   we were so scared.

he came home with us.  we enjoyed him for thirteen wonderful years.  thirteen was not enough time, not even close.  but i still find the exact time of thirteen years something to ponder.

grieving parents

I've joined two Facebook support groups for grieving parents.  there's something to be said for finding solace with others who have experienced same horror...because it is a horror that your closest,most supportive friends cannot imagine no matter how supportive they are.  lucky for them.

some are comforting....parents who are now five years down the road who give hope.

others not so much.....eight years later and still barely functioning.

i know that thirty years from now i will still hurt, i Will miss Nolan, i Will hate that he isn't here.  but i do pray that our family Will be joyful at times, that we Will be close to God, that we do function as we should.  the hole Will forever be here.  but i hope to feel even more strongly Nolan's presence in my heart.

attempting to have faith again...

Last night, Patrick and I (and of course, Ella) spent the evening with a wonderful priest, Father Hansen.  Let me back up a bit....
I think it was Friday night that I was talking to a friend, Valerie, on Facebook.  She had asked how I was doing.  It progressed into a conversation about, among other things, how this tragedy had made me doubt everything, how my Faith was shaken, or even just plain GONE....  Valerie asked if I had talked to the priest at the parish we have been attending.  And though I do like him a lot, I explained that he's just not that priest that I feel like I can talk to... maybe I'm wrong & I could.  But I just didn't feel comfortable having a lack-of-faith conversation with him.  So then she mentioned Father Hansen whom I know from the church where we do our Friday Co-op.  And I said that yes, he seemed like someone I could talk to.  So at Valerie's suggestion, I mentioned that I may want to talk to him to Katy Christy.  Katy proceeded to text him & he said he'd call me. 

Let me say that part of the reason for my like of this priest is that he seemed to know Nolan just from the few short months he knew him at Co-op.  Every week at Co-op, the kids have an opportunity to go to confession.  From what I have learned since I lost my sweet boy, Nolan was always the first kid in line for confession every Friday.  He truly did take his Faith seriously.  What a great kid!  What a huge loss...... 

So on Sunday afternoon, I get a text from Katy saying "hey, I'm going to come pick up your kids so that Father Hansen can come to your house & talk to you and Patrick".... a few minutes later, I get a message from Father saying he'll be here around 6 or so.  Funny thing is, Patrick knew none of this.  He was at work Sunday, didn't know when he'd be home.  He knew about the conversation I had with Valerie, but that was about it.  So everything worked out pretty well.  Katy arrived a little early, Ciara was still at a playdate.  She finally got home, then Patrick got home.  He had already been to Mass.  So we were good to go.  Katy to the kids to her house.  Patrick had a bite to eat.  Then Father showed up. 

Here's the thing... I'm hurting so much right now.  So much.  And I'm angry with God.  I'm doubtful about everything.  And that is all, all, all negative.... The hurting, well, that's just going to happen.  but one thing I realized in talking to Father is that the pain isn't going to improve if I don't try to trust in God again.  And how am I going to do that unless I make an effort by praying?    What good does it to do me to sink deeper into a black pit of despair that exists because I have no faith?   

Father spent more than 2 hours at our home.  When he left, I didn't have some huge epiphany.  However, I did have a slightly renewed hope.  It's going to take me awhile to feel joyful about God again.  But I think that I can...  That's something that I didn't feel 2 days ago. 

I had 13 wonderful years with Nolan.  I could have only had 2 years with him.  Or 4.  Or 1 month.  I do thank God for 13 wonderful years.  They were the best years of my life. 

sleep arrangements, revised

due to the fear that at least a few of us are feeling, we have been sleeping in various arrangements.  mostly, it has been the girls in my bed, Patrick and Logan in ciara's room.  Liam in his own.   is it stupid that i wish Liam wanted sleep with one of us?  i get up a couple times a n ight to go check on him.  i think Patrick does the same.  he is wearing a heart monitor.  if something unusual happens, we should hear it.  however, as exhausted as we are,  i fear that it could go off at a time that I'm actually sleeping soundly.  it will only go off for a minute.  so i could miss it.  i need a baby monitor too.  doors are now all open when lights are off.

i can't help but have the what ifs about Nolan..... if he hadn't been alone that night, would be here now?  if i hadn't slept with my bedroom door shut, would he be here? if Nolan's door had been open?   so many little what ifs that could have possibly saved our son, our sweet child.

dreams

i wake up from my teeny bit of sleep each day and do not remember dreaming.  perhaps I'm not.  I'm sleeping so little.   maybe I'm getting any of that stage of sleep.  i just wish I'd have some Nolan dreams, even if it disappoints me to wake up and find myself back in reality with no Nolan.  i just need something to hold on to.  i have heard people talk about feeling the presence of their loved one or have visions that seem real...why can't i?   Nolan's absence is so absolute.

how can it be real?

i live in a state of constant horror now.  i awaken with a feeling of misery, pain, yet disbelief.  i still have a vague sense of shock enveloping me.  i will imagine Nolan in life and it will hit me like a ton  of bricks that he is gone.  there is this hazy blanket, a fog, shading all i do.   I'm still finding it hard to function each day.  the routine tasks like paying bills,returning library books, are forgotten.  i want to forget the reality of it.  i zone out as i browse online, watch tv...i don't forget,but i try to.