Not so bright & Shiny: January 2012

I feel like it should all be out in the open by now. it’s been a year and a half….(how did THAT happen?) I’m growing more and more tired of all the interruptions, surprises and constant emotional drain.

I’m ready for that magic switch to be flipped.

forever…

I don’t even truly know what that would mean or look like…but I just feel like by now in my journey it should be some what familiar…somewhat predictable.

why isn’t it predictable?

today I’m just over it. all of it.

I started my taxes…I had to officially delete Conner from our families financial reports…he is no longer a family member of ours in the eyes of the government. seriously, last year was hard to file taxes putting that he died on it. but this year, I had to physically check the box that he died and I had to delete him.

I had to.

that lovely computer program didn’t do it for me.

and that was the first thing I had to do. so talk about having a fun 4 hours working on taxes after that introduction. and I’m not even finished yet. much more to do.

stupid program keeps saying things like “congrats you get a $2000 tax credit for your two children….” HELLO I have three…

but I guess one doesn’t count anymore…

but to me…he counts.

he matters.

do you know that I honestly don’t remember what I felt like to be his mother. I don’t remember how it felt to hug him or kiss him, or comfort him, or protect him. I often find myself looking at pictures of him or our family and I just don’t remember him being here. it’s like it’s a dream. like it never really happened.

am I the only one who feels this way?

I feel like he’s been gone longer than he was here, and that is so very far from the truth, I know it…but I don’t feel it.

once again my heart and head won’t connect.

they don’t agree.

so I get confused, I feel like I’m a shell of who I used to be. it’s strange.

amidst cleaning out my tax drawer (which this year I WILL be better at organizing so it’s easier!) I found a few cd’s that had pictures of his last bday party and his last day on earth on them.

those were so difficult to look at.

his birthday, as I looked at each picture I was overwhelmed with the exact emotions I felt that day. I smelled the smells, I remembered the voices, the laughter, the bittersweetness of it all. I remember it all down to the smallest detail. our grass was mowed, I remember there being a smell of fresh cut grass mixed with the smell of the new cedar chips we had put down under the new play equipment. I remember setting up all the hawaiian décor. I remember seeing him struggle so much to breathe, but he had the most beautiful smile on his face you could imagine…his heart was full of love and his eyes were full of wonder.

it was perfect…

when I see pictures, strange as it may sound but they are my proof that I’m not just imagining him. maybe others who have lost a child understand that…maybe not. but after awhile nobody says his name anymore. no one asks about him any longer. nobody even realizes the burden of pain you carry with you each and everyday. and after awhile…as his mom, I get used to people forgetting.

and seeing picture is proof for me. it helps me to just remember those moments that get lost in the business of living…raising two other beautiful boys, being a wife, and tending to normal everyday needs.

he was here.

we had a connection that can’t be explained. it went above and beyond a normal parent/child relationship. I think that’s true for any child with chronic disease. I didn’t just care for his everyday needs…it went deeper than that. I never gave up…not even the day he died…I remember knowing it was near, but still not believing it was that day…I was still fighting, I wasn’t anywhere near finished.

but he was…bless his tired heart…he was finished. and he waited…the craziness of that day, the chaos of all the people stopping in and out, pastors praying, friends of ours and even friends of his coming to say goodbye…it flew by…yet time stood still. that was the longest day of my life. and he held on…until we let him go.

I wish so much that more bereaved parents would speak up about what its' like.

I feel so alone most times…somedays I feel absolutely crazy…like there’s absolutely NO WAY any other parent still feels such raw pain. shouldn’t it be a bit easier now that it’s 2012????

it’s like an underground society where it’s all kept hush hush. in the beginning stages of grief people express themselves openly, they are raw and vulnerable…but once the world moves on…why do we get quiet?

I feel like if I don’t say Conner’s name, nobody will. if I never bring him up, nobody else will. and if nobody will talk about him…then it’s just another reminder that not only is he gone…but that he’s not coming back…EVER…and nobody truly, really cares like we do. (I don’t expect anyone else to…) I guess what I’m saying is, it contributes to that crazy feeling that he was just a dream.

and living without him has been just a nightmare…

many days I want to write. I will open up my journaling program…maybe jot a sentence or two…but I stop. like tonight. today was so overly emotional, with the tax issues and all, really it was way more than that…but that was my breaking point.

I opened up my program and I just stared.

I don’t write for sympathy. nor empathy. especially not for pity.

I don’t write for people to read my words, or feel my feelings, or hear my heart in it’s rawest form…

I don’t write to tell a story, I don’t write to waste time.

I write for sanity.

for me.

I have to get it out sometimes.

writing is soothing to my soul…it helps me to cry when I’m long overdue…it helps me to put life back in perspective again…to regain balance.

I write for me.

so there are many days where I just need to spill my heart out onto the keys…but I fear what many may think. here’s why…because honestly I don’t care what people think of me…but what I do care about is others reading my blog on a particularly bad day I may be having…and a person believing that I’m giving up, or who may be in a similar situation…and maybe it pushes them over the edge…does that make sense?

not every day is bad. not everyday is bright and shiny…I need to write on THOSE days…not the happy days. those days are the easiest ones to get thru…with or without child loss, you can agree…when life is going well, what is there to vent about??? but a build up of enough bad days, or string of events…or days of being so emotional and exhausted from crying your eyes out at night, or tossing and turning, or dreaming of him…or helping your 6 year old understand why his life is so different now than it was just a year and a half ago…enough of those days…I have to get it out.

and I’ll admit…because I know…it’s not pretty.

I’ve never once felt so sad or so desperate or so broken where I felt like giving up. not even one moment. but when I have bad days, some ugly stuff that’s been building up comes out, and I never want people to see that and believe that lie. writing for myself is still an extremely large responsibility. because I do know how many people read this blog, whether sporatically, or even for the first time. and I take that seriously. if one doesn’t know me, authentically KNOW me…they may see only the darkness, when there really is so much LIGHT in my life…

but those aren’t the days I need to write…

so here’s some of those ugly truths…

I’m so tired of crying

I’m so tired of feeling incomplete, inadequate

I wish that my heart could regenerate that chunk that’s forever gone…

I’m trying so very hard to stay involved in the CF fight…but each day it’s getting more difficult to…I pray Conner’s not upset…

I hate not hearing his name anymore…

yet somedays I hate hearing it because it hurts so much that he’s not here

I’m sick of some of the lessons on living that I’ve been thrown into learning…I know, I know…I wouldn’t have signed up to find out any other way, but I’m still so tired of all the change

I hate this season…seeing everyone gear up for their CF walk…and all I can recall is the last one that meant ANYTHING…

and just wishing to remember that passion again…

I’m tired of wondering where a few people I love greatly have disappeared to…but knowing that my heart doesn’t have the strength to find out. I just can’t take anymore loss…how sad is that?!

I hate having hard days with my husband because he and I are both missing Conner and handle it so different…yet I hate to have those days full of smiles and laughter because I feel Conner should be with us enjoying it.

I still hate how people say what they feel are helpful comments…but really…it hurts. because truth is…

I’m human, I’m selfish. that’s how god created us…imperfect.

I’m a mom without her son. I don’ t care if he is celebrating life in heaven…I’m human and I’d rather have him HERE…

I don’t want him in pain anymore…but honestly…I don’t want him breathing free because that means without me… (yes for now…but now is soooo long!)

I’m trying really hard to be happy about the new CF drug that was fda approved today. and I know that my heart is so happy about it. but on a surface level…what it really does to me is remind me of those many days I spent sitting on my stairs (yes I remember it down to the finest detail) calling a cf dr in denver, calling the CF foundation for other drs’ information…anyone who could possibly have access to those drugs back when he was alive….and I remember being told no, over and over again. and now…now it’s released.

uuuhhhggg…see how ugly I feel sometimes? it’s scary to feel these feelings….to write them out is even scarier. sometimes I just start typing and when I read what I’ve written I’m shocked at how I really feel…my mind protects myself most days…coping mechanism…because these feelings, while obviously they hold some truth in my life or I wouldn’t feel them…they are not who I AM…they don’t tell of my love and my joy and my hopes and my trust in God. feelings are deceptive. but my heart, my soul, is simply trying to make sense of all that has occurred.

and it’s trying to find a way thru it all…

at the deepest level of it all I’m really just a scared, broken hearted woman…who held her sweet sons hands as he exhaled the last breath from his lungs. who endured more pain and more unbelievable situations after that day…and I’m just looking for peace.

I find it when I expel the ugliness from my heart when it’s necessary…because when I let the ugliness go…it gives my heart more room to grow in LOVE and in truth. and when I hold it in for too long then as you probably can tell it gets kinda ugly Smile

I pray my next rant is about something happy…because most days I’m happy, joyful…and content…those days I enjoy from sun up to sundown so there’s no time to write anything…but I will make a conscious effort to do so and soon…while I write to get life off my chest, I do also need to show other bereaved parents that it’s not all dark and twisted…that yes there are many bad days…and that will never go away…but with some hope and trust (and some amazing friends!) even the darkest day a little light can shine on thru…