Tuesday, June 30, 2009

No words tonight.....

I can't write a coherent sentence tonight.

I'm too sad.

I'm too mad.

I'm too on edge.

I just can't express a single feeling in words, and thats frustrating.

I'm too on edge to even go to bed.

Gaah!!

Katie

Wednesday, June 24, 2009

Took the words from my mouth!

I just love Joe Purdy! He's got an amazing voice, and a talent for saying exactly what I want to say, only better. I just keep finding more Joe Purdy songs that speak for me, and its really interesting to hear someone totally removed from me and my life sing my thoughts and feelings. Really cool.

Tonight Elvis is working nights, the ideal time to sit down at the computer and deal with some thoughts and feelings, the way one might tackle a big load of laundry, sort through the pile, tackle the heavy duty dirt first, and hopefully when you're done, it all comes out clean. I find its best I tackle my emotional dirty laundry when Elvis isn't here, because you never know whats going to "come out in the wash", things tend to get a little wild on laundry day.

I've got nothing specifically nagging at me today. I'm not busting at the seams to get something out or let some particularly painful feeling loose. I just feel compelled to write and just see what comes. The kids are tucked nicely into bed, and I'm neglecting any household chores I could be doing to listen to some songs I like on YouTube, check out my mommy message board, and just be alone with myself and my thoughts. I'm listening to Joe Purdy, as the title of this post may have already given away. Rainy Day Lament is the song I am listening to right now, I've never heard it before tonight, but its great. Its slow, and draggy, and full of emotion and despair and sadness, as the title may already have suggested. Here's my favorite lyrics from the song:

Gotta get my head together, yeah
Gotta get my thinkin' straight
Gotta keep my mind from racin'
But it might be too late
Well it might be too late

Cuz these demons in my head
They just won't wait
They just won't wait

feel just like a failure
Well maybe I am
Say it and give you somethin' better
But I don't think I can
Well I don't think I can

Cuz I got nothin' else
In my hands
Yeah in my hands

And all these things I'm feelin'
Maybe I don't wanna say
Maybe I'm just tired
Or maybe I'm not brave
Well maybe I'm not brave

Well maybe I'm afraid I can't
Maybe I'm afraid I can't

So come on over here
I don't wanna be alone
But if you're busy dear
I'll see you later on, yeah
I'll see you later on, yeah
I'll see you later

I feel like these words sort of represent how I feel about expressing myself and my emotional and physical state after losing Everett. Scatter brained, demon haunted, failure, not brave, scared, lonely, the song sings about them, and I struggle with them, practically each and every time I'm alone with my thoughts and my memories.

So, thanks once more Joe Purdy, for singing about my heart and my life, its great to have music that you can apply to your life, like my own personal soundtrack. If my life were a movie, Joe Purdy would be my soundtrack, along with some Killers, maybe some Cat Stevens, and my movie would probably make you really sad, and depressed, you'd probably cry.

Anyway, moving on.

My sister Courtney is visiting for a few days, she doesn't live too terribly far away, but we don't see her as often as we would like. Her handsome traveling companion is her 8 month old son, my gorgeous nephew Xavier. Its always so good to see them. They're special people.

Courtney and I are 11 months apart in age, our relationship has cycled from close in young childhood, to a bit more distant as school aged kids, to very close now in adulthood, and I love it. She's definitely more then just a sister to me now. She's been very supportive to me throughout Everett's illness and his death, and still is throughout the healing process. She's one of those people I talked about in a previous post, who were right there with us on the front lines during Everett's time at Sick Kids. We camped out at her place, and she often watched Avery for us while we were visiting Everett, so she'd be there waiting for us when we got back so we'd have a child to hold and love before we fell into restless sleep. She waited in the waiting room with us while Everett was in surgery, she was anxious and worried and scared along side us, and she was there when Everett was baptized, and after he died. She held him when we held him, after he had died, and she let her emotions wash over her like we did, she was overcome, she hurt, she couldn't handle it, and I was touched. I was touched by how deeply she felt it, I was honored that he meant so much to her that she could grieve like that for us, and for him, and I was appreciative that I could rest assured that she truly, and deeply "got it", I would never have to explain anything to Courtney, she already knew. As much as it pains me that anyone had to feel this pain with us, it is of some comfort to know that she will always understand me on a level that not many others will. Aside from my mom, and Elvis, Courtney, and Elvis's sister Jeanette, I don't think anyone really knows how bad it was.

Courtney had Xavier on Pregnancy and Infant Loss Awareness Day the year after my boys were born. He was 5 weeks early and his birth was traumatic and scary and we're all really very lucky sweet Xavier is here with us today. She gave him the middle name "Everett" in honor of my sweet baby, another way that I can tell that Courtney really cares, and understands, and loves Everett too. Xavier is a healing baby I think. He can't erase the past, and no baby can replace another, but Xavier is very special. I love him very strangely, because I love him very much like I love my own kids, there's a very thin line differentiating the two kinds of love. He's my first nephew, though Elvis has many nieces and nephews, so this kind of love is very new to me. He's my sisters baby and I love him like he's an extension of my own family, and I think Courtney feels the same towards my kids too. Next to me, Courtney is the "mommiest" to my kids, she's like me in many ways, from how she talks, to how she cares and mothers, and I wonder if thats how Xavier will see me when he's older. Risking getting completely off track here, my mom's sister, my Aunt Martha, is very much like my mom, from how she talks, how she cares, and even how she looks, and I've always felt particularly drawn t her, like next to my mom she was the "mommiest" person I knew. Having a nephew of my own has given me lots of insights these days, Xavier has been healing and good for my brain too!

But what I mean by healing is this, he's came at very special time in our lives, when we as a family needed something good and happy, and he gave everyone something new to focus on. He's also sort of living proof that sometimes miracles do happen, and he's a precious little reminder that life goes on (unlike some of life's uglier reminders). His middle name is Everett, thats special. He also provided me with a less painful way to deal with Everett's stuff. Tackling Everett's things was a very difficult thing to do, but it needed to be done, I had two of practically everything. I was able to give Courtney Everett's crib, and some other items and rather despair over how my baby never got to use them, I was able to give them to a baby I would love and be happy that they were put to good use. Xavier did all these things for us without having to "do" a thing, just his presence in our family has done so much good. We'll never expect him to "do" anything, we love him just because he is Xavier and he is incredibly lovable. I'm not trying to hamper him with a job by calling him "a healing baby", its something he is, but not something we expect him to be. I hope that makes sense. Just like Landon was a healing baby, I don't expect either of these little guys to fill up spaces in our hearts or magically mend our hurts, simply by being here with us they've worked wonders and thats all we could ever ask of them.

Just look at this amazing baby:

Seriously, I can't believe how precious he is. My sister is a very lucky mommy, and I am a very lucky Aunt.

I'm also a very lucky sister. I have to go back to talking about Courtney for a moment, because I'm feeling like I could never say enough how good it is to have her. You may think that most family members would "get it" or have some innate understanding and show you extra sensitivity and support, but its just not true. "Getting it" is the exception, not he rule. Though you would think most people are capable of trying to put themselves in someone else's shoes and rustling up some extra compassion, it just does not happen that way. We've been hurt and disappointed by a lot of people we thought should "get it", friends and family alike.

Shortly after Everett died we were at a large gathering and I overheard something that was a painful reminder that the loss of our son didn't bring everyone's world crashing down, just ours. A pregnant woman discussed with another woman that she had originally thought she was having twins, the non pregnant woman said "Oh, did you want twins?", the pregnant woman gasped, "Oh God no!!" At that very moment I crumbled into a million pieces and scattered across the floor, though I am very certain neither of them noticed.

The world just can't see our pain anymore, on the outside looking in I guess we look better, or at least healed a bit, thats why Courtney is special, she's on the inside, and she knows how it really is. I love that I don't have to pretend at all with her.

I know I'm rambling on and on, this post must be getting terribly long, and at the risk of becoming nonsensical, I'm going to go on a bit longer. I'm feeling rather sentimental right now, all this talk about love and family and the value of surrounding yourself with people who "get it" has started me thinking about other people who make me happy, or warm my heart.

My Mom was a rock for us when Everett died. I know she experienced incredible pain and still grieves to this day, losing him crushed her too. She mothered and loved me so much during the time he was in Sick Kids, and right after he died, she dished out comfort and guidance and love like she had a never ending supply. She was there for us like a mother should be, and to this day she can detect an "Everett moment" and comforts accordingly. I can't say too much about my Mom without getting too overcome with emotion, and then I'd have to stop this post right now while I sob hysterically over how much I love my Mom and how happy I am that she loves me (because I realize that not all moms love like my Mom does). She was and still is a rock, and she is also one of those people who "gets it", she's on the inside with us, and I am grateful for her.

My little sister Kerry never met Everett while he was alive, and I know that pains her. She wasn't able to come to Sick Kids to see him, but I know she wanted to and that means a lot too. She cried at his funeral, her hurt clearly displayed for all to see. I know Kerry loved Everett and I know her heart broke for him and for us. I know she still thinks about him more thens he says, and I am thankful for her. She'd go to bat for us if we needed her, she'd be the first to get riled up if someone were to say anything remotely hurtful or offensive or ignorant in regards to us and Everett and his story. She's passionate and strong and outspoken and I have a big giant soft spot in my heart for Kerry. I bet I love her more then she knows, I should probably tell her more.

I know my Dad is highly unlikely to ever read my blog, so I'm going to say a lot of sappy things about him that I would never say to his face, because I would cry (like I am right now) and we just don't go getting sappy like that with Dad.

He saw Everett just once. When he was still at our hospital, still brand new and still believed to be totally well. He saw Everett when he was pink and healthy, though on a respirator and not looking much like a "normal" new born. When my Dad met Everett he expected that he'd be coming home with Landon in a few weeks, and he'd wait until then to get to know them. My dad doesn't like hospitals, so he met Everett once, then stayed home.

My Dad also doesn't do funerals, or large social gatherings. He never came to Everett's funeral, and I didn't expect he would. He stayed home and watched Avery for us.

My Dad is a introverted guy, he's the strong and silent type. I've never seen him cry over Everett, or express his sadness over his passing. He's never wrapped his arms around me and offered me comfort when I was falling apart, but none of this has ever made me thing my Dad wasn't bereft like the rest of us.

I know my Dads heart broke over Everett, I know this change of "plans", going from two babies to one, three grandkids (at the time) to two, it hurt him deeply in a way he'd never be able to express. But I know it. My Dad is an incredible Dad. Not perfect, no one is and no one should be expected to be. My Dad is imperfectly wonderful. He's an even better Grampa. He's a much loved and sought after Grampa, Avery and Landon and Xavier adore him, Everett would have too. I know he knows that, and I know he thinks of Everett and how the loss of Everett hit our family like a meteorite leaving behind a massive crater of hurt and grief. Because my Dad is very smart, I know he's not unaware of our hurt, and because he's my Dad, I know he cares and is effected. He doesn't need to say it, or show it, we know it.

My Dad was never on "the inside" though, he was a bystander in this train wreck, but people he loved were on the train, and you can't watch such a catastrophe unfold, powerless to change it or stop it without being permanently changed by it, you just can't. You can't watch life go from this:

To this:


And not get hit with a little shrapnel. I just really love my Dad.

There are some other people I could thank, God knows that so many people reached out to us as our world came falling down around us. But I can't go into detail about why each and every one of those people is special and amazing, so maybe I should stop here.

I started this post off not knowing what I was going to talk about, because I had nothing in particular on my mind, I just wanted to write. I'm thankful that my mind seemed to go a different direction then usual, rather then think about the hurt and pain, which is the most natural thing to write about when writing about life after the death of a baby, I'm grateful my mind decided to direct my hands to talk about love.

My life is filled with it,

I love so many people so much more then they know, I am so filled with love,

I love my Mom, and my Dad, and my sisters, and my kids, and Xavier,

I love my friends, and of course, I adore Elvis,

I love Everett, and miss him,

I love that there are people in my life to make it easier to love him and live without him,

My cup is truly overflowing with love,

And now my eyes are overflowing with tears,

Time to go.

Katie

Sunday, June 21, 2009

In Pursuit of Heaven

I have written, deleted and re-written this post three times already. Apparently tonight I just don't know how to say what I want to say. I've got all kinds of thoughts and feelings racing through my brain, but it seems that they're too big, or too disorganized to be expressed in any kind of coherent form. I'm frustrated.

I went out to Everett's garden tonight with Avery. While she played I took pictures, some of her, and some of the garden which is growing quite nicely, its overflowing the tiny perimeter we gave it and spilling out to the yard, its really pretty. Nestled in the over growth is the tiny angel statue we bought to represent Everett in his garden. Its quite photogenic, but a poor stand in for the real thing. In cases like tonight, when I'm looking for Everett wherever I can find him, it'll do.




I have to say, it takes a pretty picture. Its sweet, and soft and represents what we all hope for as parents who have said goodbye to their babies, who have held them after they breathed their last breaths, and who have attended their own child's funeral. A baby snuggled peacefully in angels wings, safe and happy in a beautiful afterlife. Heaven.

From now until the day I die, I'll be in pursuit of Heaven, and what this benign little statue promises. My baby safely held, until I can be with him again. I'll do all it takes to ensure a reunion, so that one day I won't have to be satisfied with representations, likenesses, mementos, and memories.

I've deleted and re-written this post over and over, and tried repeatedly to word my thoughts appropriately, I feel I've still been unsuccessful, so maybe I'm not ready to say what I think I need to say tonight.

When Everett died, and I sat holding him in the hospital's family room, before I needed to leave and go back to my new life, I was consumed by the "goneness" of him. Being angry with God was short lived phase in my life that ultimately led to an incredible bloom of faith which as provided me with amazing comfort and hope. Everett no longer seems "gone" in the same sense because I now feel confidant I know where he is. Faith and some education on the matter of Heaven have made me feel secure in that I know how to get there one day, and I can hope and believe in a reunion with him some day.

Hope and faith and thoughts of Heaven have helped grind down the edges of my grief, the pain is duller, and less acute when I keep my thoughts focused on one truth, our goodbye was not permanent, and I'll hold Everett again in Heaven.

So from now on, I'll live my life in the pursuit of Heaven.

Katie

Friday, June 19, 2009

A tale of two friends (and two necklaces)...

Somewhere in the continental USA there are two amazing ladies, two very dear friends of mine, who have each been deeply touched by Everett, and our loss, that they have sent me lovely little gifts to show me that they're thinking of me and of Everett.

They're wonderful ladies and the support they have showed both when Everett first passed away, and still, is amazing and affirming. Both of these ladies are so thoughtful and generous, and I am so grateful to call them friends of mine. And both of these ladies sent me this necklace.....



When the second necklace arrived my first though was "Oh no, how sad, I already have one of these!" I felt badly for my friend who sent the second necklace, she had no way of knowing that another kind hearted friend had sent one too. But after some thought I realized it wasn't sad, or unfortunate at all that someone had sent me another of these beautiful keepsakes, especially once I had thought over the necklace and what it represents. It now seems quite lovely, and quite fitting that I should have two of these.

This necklace is called "The baby tears memorial necklace" and is part of series of jewelry designed to bring comfort to woman who have experienced a miscarriage or infant loss. The website describes it as a symbol of "all the tears cried, and not cried when we lose a little one". How perfect that I received one when my grief was fresh and new, permitting me to cry and express my grief outwardly, and to receive one now, when my grief is more subdued and mature, and less noticeable now, reminding me its still okay to cry and to grieve outwardly. Each of these beautiful necklaces has helped usher me into a different and vital stage of the grieving process.

The first one came at a turbulent time, and in a sense helped tame my pain, it broke me down a bit when it arrived, I cried when I opened it, because I was touched by thy thoughtfulness of my friend, and because my emotions were still so electric and haywire. I wore it proudly, displaying my hurt for the world to see.

The second necklace ushered in its new phase more gently, it arrived quietly, in a quiet time when reminders of my grief and that people are think of us are coming less frequently. On the inside my pain still comes in waves, rough and turbulent at times, quite and calm at others, but outwardly, the waters seem still. This second necklace came at a time when we needed (though maybe never knew we did) to know that people are still thinking of us and our baby, and that its still okay to reflect whats happening on the inside to the rest of the world.

Two necklaces

Two friends

Two important messages that came in two relevant times of our lives

I don't believe it was an accident or a coincidence that my good friends both thought of me when they saw this necklace and thought to themselves that they should send it to me, because it may help me to feel better, or cared for, or thought of.

I like to believe that the arrival times of these beautiful necklaces was orchestrated by God, who knew precisely when I'd need "nudges" to help me move on, and my beautiful, thoughtful, amazing friends were his instruments to help this process along.

Another word on my lovely friends. I've never met either one of them. I've never laid eyes on their faces, or heard either of their voices. And yet they are two of the most wonderful friends I could have! I have a lot of friends like these ladies, who have never spoken to me on the phone, or gone for coffee, or had our children play together, and yet they've demonstrated amazing love and kindness and friendship to me in the best and worst times of my life. I'm so lucky to have stumbled upon this amazing "virtual" living room filled with amazing women I am proud to call my friends.

So, thats the tale of my two friends, and the two necklaces they bought me. Friendship, love and thoughtfulness are alive and thriving in the world, and at this very moment, I feel incredibly blessed.

Katie

Wednesday, June 17, 2009

A work of art!

Isn't he? He's a masterpiece don't you think? For a change of pace, I decided to do something fun tonight, something inspiring, so I fiddled with a free trial of a software that can make pictures look like paintings, and I "painted" Everett. I think I did pretty good for a first try.


I have 30 days to perfect my technique and get something worthy of hanging on the wall. But, I don't think I could ever do him justice. No one could. You just can't reproduce this caliber of amazing. Its fun trying though.

Katie

Tuesday, June 16, 2009

Good news!

I stayed up way too late last night, got up way too early this morning, have a crazy headache and am too tired to think, so tonight should be a better night then last!

Sometimes when I look back at previous posts, I'm surprised by the intensity, and even the desperation of my emotions coming through in them. At the time those emotions are so strong and relevant, they consume me, but its odd how just 12, or 24 hours later, those feelings seem so faded and distant. This is good though, it helps me to continue to move forward, when I hit an emotional speed bump, I hit it hard, process it, work it through, and move on to smoother roads. I'm relieved to know I can hit such horrible depths and still bounce back the next day and carry on like a normal human being.

Writing is therapeutic, it really helps me sort through the jumble of emotions I go through.

Music helps too, I've found so many songs and artists that I connect to that really help me make sense of my feelings.

I've got amazing friends who are always willing to pick me up when I'm hitting emotional rock bottom. Through virtual hugs, e-mails, private messages, phone calls and little surprise gifts in the mail, I've gotten a lot of support from some amazing people, I'm grateful God placed them in my life.

I've also got some great family, some who really get it, who understand completely and who I don't have to pretend in front of. Some who witnessed Everett's story unfold first hand, who hurt right along side me and who really feel our pain, I think I am most grateful to them, because I know there are a few people aside from Elvis and myself who experienced the process of watching Everett deteriorate, they know exactly why we're so damaged now, and they completely get why we still hurt with the intensity we do. I'm sorry they had to feel even a fraction of the ache we do, but I'm relieved to know that there are people out there who don't need anything explained, they already know.

I don't talk about it too much, but I've got God to help me through, and I didn't always, but I'm thankful that I finally gave up being angry and blaming God, and turned to Him for the comfort he was always willing to give. There's a part of me that holds back a bit in expressing how grateful I am to God, because I think maybe people won't get it, or they'll think I'm crazy, or deluded in being thankful, or faithful after what we went through. Its hard to explain. Before having the boys, or losing Everett, I always half heartedly believed in God. In that sense that most people who aren't atheists do. I believed in Heaven, and prayed when times were hard, but that about sums up my spiritual life. When Everett was sick, really sick, and reality was setting in, I prayed harder then I ever have before, and my prayers went unanswered. I was so angry and lost that I decided that if there was a God, he was either powerless to help, to decided not to, and either way, I didn't need a God like that in my life. I turned away.

But, whether or not I believed in God, my life's circumstances were exactly the same. I was still grieving, my son was still gone, and I was in dire need of comfort. I found myself starting a prayer and then stopping myself, as though I was remembering I was still giving God the cold shoulder. I knew I needed comfort that only God could provide, I could feel it, but I was denying it, and I continued to feel isolated and alone and hurt. One night I decided to stop. I decided to stop blaming God and to stop being angry with him and to "talk" to him again, grudgingly at first, but I was making the first step. I prayed for comfort that night. I prayed for my thoughts to be quieted, for the hurt in my heart to ease, and to have a good nights sleep, for the first time in months. And I did. I was comforted. From that night on, it was like a switch had been flipped, and I experienced what it truly felt like to believe, I know now that I never really did before.

The next logical step to us was to find a church, and we found an amazing one, and our education in God, and his promises, and what it means to be Christian really began. Its been enlightening, and easier then I ever imagined. Its brought a lot of hope to our lives, and really eliminated a lot of fears and doubts and sadness. Now that we have church and God and his comfort in our lives, I wonder why we ever thought this sort of thing was so difficult before, I wonder why we never found this out sooner. I feel guilty that I don't share this more often, with more people, its really a great thing, and God and his grace have been a huge source of healing to us.

God, friends, family, self expression and the love of my children are all forces in my life keeping me afloat and moving forward. Its easy to trip and stumble in my grief, and easier still to want to wallow in it and get lost in it, but thankfully I have so many reasons to pick up and carry on when the wallowing is done.

Katie

Monday, June 15, 2009

I thought I was done, but I was wrong..........

I thought I had gotten it all out of my system, but apparently I was wrong, forgive me, here I go again...

I am so angry! I am just so mad that this is our reality and that we don't have both our babies here with us. I'm so angry that other families got their miracles and we didn't, I am angry that we had to be the worst case scenario, and that we just have to deal with it, there's nothing we can do about it!

I don't know why I torture myself, but I was just looking through a group on Facebook for parents of preemies. Why shouldn't I look? I have preemies! My boys were born at 34 weeks, so I didn't think I'd have any problems. But, you don't have to look too far to see smiling parents holding both their twin babies after a long NICU stay, "home at last", gaah! That should have been us! I am so angry that everywhere I look it seems there are families out there living my dream and rubbing it in my face. I don't begrudge them their good fortune, but what happened to mine?

I try really hard to be composed and resigned, I try to be at peace with the hand we were dealt, I try to take comfort in knowing there was a bigger plan and purpose in place, but sometimes its hard to be consoled.

There's no sense in wishing things were different, past experience has showed me that wishing is a waste of time. I can't change a darn thing, nothing, and that makes me so angry! I endured the complications and discomforts (along with the joys of course) of a twin pregnancy. I did my part, I managed to pull off a picture perfect, healthy pregnancy and carried to a reasonable time. I prepped a beautiful nursery and my life to receive our beautiful baby boys. I delivered without complication two stunning, and healthy baby boys. I had twins, and I WANT TWINS!

Gaah, this is pointless, but its better to just let it out. Admittedly, I'm having a rough night, but I've had worse and I imagine come tomorrow morning I'll feel better, like tonight never happened.

I'm grateful to have an outlet for these feelings.

Katie

Here I Go Again..............

Its 8:10pm. The kids are both in bed. Elvis is working all night. I baked a pan of brownies and I've already eaten a whole row of them, the sad music is playing on YouTube, and I can feel some very painful and raw emotions stirring. Its going to be one of those nights. I just can't seem to be alone with my thoughts without coming apart at the seams. Some days I can manage to avoid total hysterics with avoidance tactics early on. Facebook chats, interesting posts on my "mommy's message board", reading other peoples blogs, phone calls, eating yummy treats, ect... But none of that seems to be panning out tonight.

Truthfully speaking, I don't really want to talk about it. I'm not going to call anyone up and tell them I'm on the edge tonight, that I'm hurting and need to talk. I'm not that person, I've never been that person. And I don't want to talk. I want to write about it, eat because of it, and cry over it, cry a lot actually. I don't really WANT to cry, but, it seems to be the catalyst to getting "over it" for the night. Its a necessary evil I guess.

These feelings started brewing early this afternoon, I can pinpoint the actual trigger, but I was too busy/preoccupied to deal with it then. But now here I sit, alone, without distraction, or duty, and in relative silence. There's nothing to drown out my thoughts, or suppress my emotions any longer, so here they come! This happens a lot, a lot more then I think anyone realizes. Some nights when I'm at my computer desk in absolute shambles I wonder if anyone I know is at home wondering if maybe Katie's at home falling to pieces, I seriously doubt that thought would ever cross their minds, but man, it happens more then I'd like to admit.

Everett died 19 months ago. When you see it written out like that, it seems like a long time ago, but in my heart and in my head, its a flash in the pan, its no time at all, and on nights like tonight, my sadness feels brand new. I guess I have the choice about whether or not I indulge this urge to dive into grief. I technically could do something else. I could walk away from my computer, I could watch a movie, I could have a bath, I could play some online arcade game, but they're only temporary distractions. Eventually I'm going to have to go to bed, and then there's no escape from these nagging, lingering feelings of loss and loneliness and hurt. Bedtime has always been a precarious time for me, often times when Landon was just a young baby I'd make it just fine through our day, and get into bed, turn off the lamp, roll over and pull the blankets up over my shoulder and burst into tears, real bed shaking sobbing hysterical tears. Elvis wouldn't know what hit him, some days neither did I. Its the silence. The silence gets me every time.

There are a few things on my mind tonight, irking me, concerning me and leaving me unsettled. The first is that I think I foresaw all this, from early on in my pregnancy with the boys I was concerned about Everett, and I wonder now if there's not something to mothers intuition. Secondly, I read a disturbing article today in Parent's Magazine, and its haunting me, and I'm worried that we unknowingly exposed Everett to unnecessary pain before he passed.

I always worried about Everett, even before he was Everett and he was just baby A. His heart beat was always harder to find then Landon's, I always had trouble with the doppler at home, and even our Dr. had a hard time getting him. It sounded different too, but I guess its not uncommon for two babies hearts to sound different, after all, we all have different rates and rhythms. In hindsight, I wonder if we weren't hearing his defects right from the very start. He moved less then Landon, he was always very subdued. And he was nearly impossible to capture on ultrasound. We could see him, we knew he was there, but he never showed his face like his brother did. We called him elusive. Landon showed us his adorable mug, Everett showed us his feet, his back, even his little bottom. But, we could always see his heart, the ultrasound tech checked at every scan, and they always commented on both babies having beautiful four chamber views. Meaning they can see two atria and two ventricles on each baby, and this is the determinant of a healthy heart to them, but its a false beacon of health, its unreliable, and in Everett's case, it flat out lied to us! I sensed all along that something was wrong, but I allowed myself to be comforted with each ultrasound, because all appeared to be well.

The article I read to day in Parent's Magazine was about making medical procedures and surgeries as pain free as possible for babies and young children. Seemed pretty benign when I started, but I was disturbed to the core when I read that up until the 1980's open heart surgery was done on new born babies without any form of anesthesia at all, just paralytic drugs to keep the babies still. I cried immediately. This was apparently due to the belief that babies didn't feel pain! The first thing I did was gasp, and then I made a mental list of all the medication I KNEW Everett received, but I couldn't recall any mention of pain medication! I was just sick at the thought of Everett enduring what he did without any pain medication, thank goodness I know that Sick Kids would not ever do that to any child, I know he was taken care of and didn't hurt.

I hate being trapped on this roller coaster. I hate going through these painful evenings. I hate that my emotions boil up out of me and I can't control it. I hate the emotional hurt, and I hate the physical side effects that come along with it, the headache, the sore stomach and the tell tale swollen eye lids that show up almost immediately. I hate feeling so frail and unbalanced. There isn't anything about living without Everett that I don't hate.

I sometimes wonder if the rest of the world, on the outside looking in, wonders why we're still so stunned, why we're still so shocked and horrified and bereft over the loss of Everett. I hope they'll understand that we didn't see this coming, it was like we were hit by a bus stepping off a curb, we never knew what hit us. Until the day he was air lifted to Sick Kids we thought he had a heart murmur, a benign heart murmur, and our Dr's weren't worried. We had a healthy pregnancy and a picture perfect delivery and had two beautiful baby boys to show for it. We had a beautiful nursery at home awaiting, we were on cloud nine, and then we fell off, and plummeted into a reality darker then I have words to describe.

It took us seven months before we had the strength to address our twin nursery. Everett's crib stayed in place, and filled up with mementos, his name stayed on the wall, and for seven months we ducked in and out of that room, trying not to let our eyes wander and see all the reminders of Everett that would trigger pain so strong it would make it impossible to care for Avery and for Landon.

Seven months after he died, we had to face the devastating task of taking his name off the wall....


It was like saying "Goodbye" all over.....


We also had to deal with all the stuff we had accumulated, shower gifts, Christmas presents, sympathy cards, bereavement gifts, we have a lot....


Stuffed toys, baby books, hats he wore, cards Avery made with my sister, we had to finally "do" something with them all.....


We had to face the fact that our twin nursery was not a twin nursery anymore. We had to make it Landon's room, not a shrine to what we expected and lost. As badly as it hurt, and it hurt a lot, we had run out of time to live in "suspended" time, leaving things as unchanged as we could. Time to change...





Welcome to our new twinless life.

Anyway, I think this post is becoming less and less focused and so is my thought process. On a brighter note, I feel less on edge now then I did when I started this post, writing is definitely therapeutic for me, maybe I won't fall to pieces tonight.

Katie

Thursday, June 11, 2009

When he's not an angel anymore...

Last night around 12:45am, I was up with Avery for a potty break and she was feeling rather conversational. I have some pretty amazing conversations with her. So, we were discussing potty training, and the little fringe benefits it brings, namely, treats from the potty bunny (Avery came up with this little character, not me I promise). Anyway, she was discussing how the potty bunny would bring treats to various babies we know when they get big, including her brother Landon, baby cousin and then her brother Everett. She talks about Everett so much, sometimes it really makes my stomach hurt.

"Everett won't need to potty train" I told her

"When he gets big he will" she said with sleepy, heavy eyes.

"Honey, Everett won't ever get big, he's an angel remember?" I tell her, softly, not sure how much she can comprehend at this time of the night, but she persists.

"When he's not an angel anymore he will, right?" she asks, I change the subject all together.

Based on conversations I have with her, Avery clearly doesn't quite "get" the whole death and Heaven business. She thinks its temporary, she thinks we can go there, she thinks he can come back. I like her version of Heaven more then reality some days. Wouldn't it be great if there came a day when Everett weren't an angel any more? When he came back from his little Heavenly vacation?

Yeah, that would be wonderful.

Katie

Tuesday, June 9, 2009

He's the rainbow.....

This is my sweet boy Landon....


I'm told that God works all things for good in our lives, even tragedies, and I'm not sure I could believe that, if it weren't that Landon's living proof. But here he is, a beautiful boy whom we love so dearly, a gift from God that we're thankful for each and every day. He came home from the hospital a day after Everett passed. The day after the worst day of our lives, we brought home the most beautiful little miracle, he's like a rainbow after a storm.

Landon's a miracle on so many levels, but on this one I think you'll agree. He's a miracle because he has a normal, healthy, strong little heart. Everett and Landon are identical twins, they are what is known as monochorionic-diamniotic twins, two babies from one egg, sharing their outer sac, each with their own inner compartments. They're genetically identical in every way. Everett's heart defect was not genetic, for that we and Landon are blessed. It could have very easily been the case that we lost both our babies, but it was in God's plans to give us one baby to raise and love.

Not that Landon is a consolation prize, and not that one baby could ever replace another, but it certainly softened the edges of the pain. We never get used to have only one baby where we know there should be two, but I am grateful that Landon is here to hold and love and care for, in many respects he's helped to heal our broken hearts a little faster and little gentler, because our arms have never been truly "empty".

I'll never be able to claim to understand God's plans for us, and our family. I could never presume to understand why he gifted us with twins and then took one back. I'll never wrap my head (or my heart) around why Everett was allotted only 20 days in this world, I'll never comprehend why we were allowed to experience such gut wrenching pain, and I'll never understand why our hearts keep beating after the death of a baby. I don't think I'll every understand, God's unlikely to ever let me in on these secrets, its better to resign myself to a life time of wondering. Rather then agonize over all these "what ifs" and "whys" and "I don't understands", I think I'd be better served by focusing on life's roses, rather then its thorns.

I have so much, I am blessed beyond words with friends and family and church, and my three lovely children who fill my heart with more love then it would be possible to explain. The loss of Everett has intensified my love for everyone in my life, and has made me even more grateful for friendships and support that God has placed in my life. My heart has softened, and I am now more capable of sympathy and of caring for others who have experienced similar losses. I love my children harder, I value my friends and family more, and I desire to give comfort to grieving parents like myself. Surely I can see how God is working our life's biggest tragedy for good, He is helping us take dirt and grow flowers. Its comforting.

This is my wee boy Landon, in the first days and weeks after losing Everett, he was like salve to our wounds. He was medication to our broken hearts.






We're careful never to put pressure on Landon to be anything more then a blessing in himself. Whether we were given him on his own, or in a pair like he actually came, he's 100% amazing in his own right. We would be thrilled to have him, no matter what the circumstances. How could we not fall madly in love with him?

He's a sensitive personality, he's tender and easily hurt
He's funny and silly
He's the strong, silent type
He's brilliant but doesn't flaunt it (he's so humble)
He's passionate and strong willed
He's a living, breathing miracle
He's like sunshine after the rain

Katie

Monday, June 8, 2009

It was about a year ago this time.......

That I was struck with the urge to do something big for Everett. It started small, but a seed had definitely been planted in my mind, to do something special, to commemorate Everett, and do something good and honorable in his name.

Our grief was just six months old, very new, very raw, very irrational (as it often is, but to a lesser degree), and I was grasping at straws, trying to control things I couldn't control, trying to master things I didn't understand. A part of me thought, back then, that I could control how deeply I hurt, or how badly I longed for my baby, by doing grand gestures, and helping others. I imagined that if I could do something incredible and admirable, in the name of our love for him, and raise awareness about his life and his battle, then I could offset the pain somehow, and I would feel proud, or validated, rather then crippled with grief and loneliness for my lost baby.

Sick Kids was an obvious choice. He was treated there, he died there, and they fought like mad to save him. They did everything possible to keep him with us, and though I never thought to search their faces for signs of pain when he died, I know they felt it, I know they felt defeated, and hurt, and sorry for us. Its an amazing hospital staffed with phenomenal people. Raising money in Everett's name, for them, felt like the most natural choice.

Don't ask me where the idea to host a gala came from, since making that choice I've lamented that no sane person makes their first fund raisng effort a gala! I should have started with a lemon-aid stand. But hindsight is 20/20, and one could argue whether or not I am actually sane, so there you have it, I chose a gala, and in my head it was magnificent.

I asked my good friend Allison to design me a logo, which she did, an incredible logo, which my other talented friend Marj turned into a stunning invite. Sophisticated, elegant, beautiful, the image in my head of my gala was captured perfectly by these designs. I envisioned dancing, elegant table served dinner, light hearted conversation, music, eduction (on heart defects and Sick Kids), and Everett. I'd introduce the room full of guests to my son, his life, his battle, and our loss. I'd have a captive audience of people to tell all about our experience with having an amazing pregnancy, a glorious delivery, two beautiful healthy twin boys and then the life shattering experience of losing one. The ladies in the room would stifle back tears, men would be effected but try not to show it, and I'd feel validated, because I had made X amount of people aware that I had twins, beautiful, healthy, fabulous identical twin boys, even though you can't tell by looking at us now. The emotion in the room would be high, but we'd shift the focus with music and conversation over dinner, and then the auctions and the raffles would begin. The tone set at the start of the event would have people feeling touched and emotionally connected to Sick Kids and all they do, and they'd want to help, donations would start rolling in. By the end of the night we'd be exhausted, both emotionally and physically, but we'd be proud, and we'd be excited to hand over a handsome donation in Everett's name. We'd be a success.

With this day dreamy image in mind, I planned our event. Slowly over the process of a year I made plans, selected the menu, ordered the centerpieces, arranged the music, ordered the tickets, started advertising, and waited for the requests to roll in.

For reasons unknown to us, this event was never meant to happen. Ticket sales just never took off like we hoped. And we had to make the decision to let it go. This is feeling painfully similar to our entire experience with Everett. It started off beautifully, with high hopes, and for reasons unknown to us, it just didn't work, and we had to make the difficult decision to end it, oh my, irony maybe?

Whatever it is, its done. The Everett Peca Gala for Brave Hearts will never be, though a lot of people were rooting for us, it never got off the ground. We're trying to resign ourselves to this, we're trying hard not to feel upset, or disappointed, or angry. We're instead trying to feel relieved. As we realized in the past several weeks, that things weren't going our way, we panicked wondering if we'd have to cancel, we dreaded having to make that choice, because in our heads and hearts it meant failing, it meant letting Everett down, and Sick Kids, and our few devoted cheerleaders and volunteers. Canceling felt like giving up, and we're so emotionally connected to this, that we couldn't see that giving up on an event wasn't the same as giving up on Everett, so we resisted, and pushed on. It weighed on us. It was an unseen pressure, a looming deadline, and an unavoidable future failure, it became something very different from what it started as. It made us hurt.

And now its over. We've been relieved of the pressure, and the deadline, and the fear, and the angst, and now, if we can resist wallowing in the hurt and the disappointment and the anger, then we should feel liberated, freed from our burdens. I know in my heart that Everett is un-bothered by all of this, and I know God knows we tried our hardest. I know that is "Okay" that this dream was never actualized, and I know there's a reason, I just don't know what. And I know, for future reference, that I don't have a career in fund raising.

Canceling our gala hurt, it was a loss and it stings like all loss does. It was the death of a dream, of a plan to do good in our sons name, and we're struggling with how it never came together, but we have such experience now in coping with loss, we'll handle it like pros.

Onward and upward right? On to new things, new plans, new hopes to make the world aware of Everett, and how precious and life altering he was. Maybe not such grandiose plans though, in future attempts, when we're ready, we'll keep it very, very simple. My heart can't take another failure, or another dream not attained, I don't know if I have the strength to put myself or Elvis through something like this again.

"There's nothing I can say, there's nothing I can do now.........."

Katie

Sunday, June 7, 2009

So big, yet so little...

My daughter Avery is a pixie. She's seriously a tiny little thing. We didn't know it when we named her, that Avery means "Elf ruler", and given she was nearly 9 pounds at birth, we had no idea how fitting her name would be. But, now she's 3.5 years old, and 3 feet tall, and 28 pounds even as of this morning, she is most definitely elf like, sweet little pixie!

Avery's got a great personality, its big when she's very little. She's loud, she's rowdy, she's intensely intelligent, and incredibly funny. She's also very strong willed. Avery is due to start kindergarten in September, and we're both excited and nervous about this. We're confidant in her ability to excel academically, she knows he alphabet, her colors, her numbers, her shapes, she can spell her name and recognize many words by sight, school work isn't going to be an issue for her at all! What we are worried about, is the potty. Avery's been a potty training hold out.

We started training her last summer when she was 2.5 years old. It worked beautifully. In a matter of a few short weeks we had Avery completely potty trained, she would even pee on the little toilet at the mall, we were so impressed. Then Avery got sick, really, really sick with a terrible bout of gastroenteritis. She was laid low for two weeks, she was lethargic, and felt horrible, and experienced all kinds potty accidents that you would expect to come around with a stomach bug, poor baby. And once that passed, she wanted nothing to do with the potty at all. We gave her time though, she was still young, there was no rush, we assumed she'd come around again soon, so we waited. And we waited and waited and waited some more, she never came around again. This brings us to now. She's 3.5 years old, sharp as tack and ready to start school in a few short months. We need to get this potty business back on track. Plus, I hate when people ask me "is she still in diapers?!" with horrified looks on their faces. I want to snap back "so what! She's absolutely brilliant and healthy, who cares if she hasn't mastered the toilet yet!" But I don't, because I know they've got a point, she really needs to learn, but she's my baby.

She's my first born, my little princess, I can't believe soon she'll be all potty trained and in school! Where did the time go? Maybe I've been holding her back a little, so now I guess I really have to cheer her on, she can do this, I know she can, time to let her grow up just a little and reach these milestones. I'll just sit home while she's at school and pour over her baby pictures, and her baby book and reminisce (sniff, sniff).

Today we started a 3 day potty training blitz. Friends of ours who have tried this method fully stand behind it and rave about their successes. I'm excited and encouraged, hopefully 3 days from now, Avery will have made the transition from toddler on the verge, to full fledged big girl. Bitter sweet.

Just look at this little angel? Isn't she precious? She makes my heart skip a beat, if she'd let me, I'd hold her all day long.

She's got amazing brown eyes, deep, thoughtful eyes, they're hypnotizing! This big brown eyes may serve her very, very well in school, lets hope he teacher has a soft spot for puppy dog eyes ;)

Who in their right mind would be able to resist, or deny my sweet girl? Not me, not ever! She'll forever be my baby, even when she's 18 years old and insists she's not, even when she's old and grey and has babies and grandbabies of her own. She'll ALWAYS be my baby....

Seems like just yesterday she really was one. (Sniff, sniff.... I'll be okay).
Katie

Friday, June 5, 2009

There will never be enough..

I take pictures, a lot of pictures, its what I do. I take dozens and dozens of pictures of my kids a week, I've coined the nick name the "Mama-razzi", I document everything they do. I enjoy taking pictures of other peoples kids too, capturing moments of their childhood and personality forever, its what I do.

It makes me really sad to think that I won't ever take another picture of Everett. There'll never be anything new for me to share or show off. I'll never say, "And here are some new Everett pictures" to anyone. Its weird, because I'll continue to love Everett and be his Mama, and I'll continue to think of him a million times a day and count him among my children, but unlike all my other children, current and future, I'll never have him in front of my camera again, the pictures I have of him are all I'll ever have. That stings.

I have some great pictures, 20 days worth of Everett, some really sweet ones, to really sad ones, but they're him, and they capture his life and his story accurately. But I want more. I wish I had have known to take more. Had I known then what I know now, I would have set him up for some nice "photo shoots", and the staff would have let me I am sure, because they all knew what we were up against, even when we didn't. I would have done some nice black and whites, some slightly posed stuff, and maybe even requested a NILMDTS photographer to come in too, and give us some really great pictures, since I didn't have the camera then that I do now.

But, even if I had more from back then, I think I would still hunger for "new", for more of Everett, I think I will always want more. To think I am always going to have this longing for him is a little foreboding, I'll never be satisfied with the amount of time I had with Everett, or with the amount of pictures and mementos I have of him. There could never be enough.

And all the "things" and pictures put together, no matter how you arrange them, will ever equal the baby I lost. I won't ever be able to pile up pictures and hats and hospital bands and make Everett, no matter how much I wish I could.

If I were to actually lay out for you all the things we have to commemorate Everett, there are actually a lot, you would be amazed. We have dozens and dozens of cards, his hospital bracelets, his teddy bear, his Baabsy (toy lamb that matches Landon's), his hats he wore, his socks he wore, his first Christmas gifts we bought before the boys were born, the casts of his feet and of our hands, the folder from Sick Kids with explanations of his condition, his star certificate, his birth registration, his death certificate, his baby book (partially filled out), his baptismal certificate, gifts from friends, including a bracelet, a plaque, a cute little canvas with a picture of us holding hands, and so many pictures. I have a lot of stuff to pour over when the need hits, but, it won't ever be enough, ever. When the mood hits, to bury myself in Everett, I don't want to read cards, or hold stuffed toys, or read incomplete baby books, I want to wrap my arms around him, I want to bury my nose in his neck and stoke his hair, I want to look into his big brown eyes and hold his hand, and touch his toes. I want to change diapers and dress him like his brother, I want to load my double stroller up with my TWIN boys and take a walk with Avery walking along side, like it was supposed to be. When a big wave of grief hits and I am looking for something to keep me afloat, these memento's are like rocks, I grab on to them out of instinct, or desperation, but they don't help, they just drag me under. They pull me deeper into the sadness because they only remind me that there's no hope of ever getting Everett back. They remind me that all that is left of him are gifts that will never be played with, empty hats and socks, baby books that will never be finished, and a finite amount of pictures to which I'll never add to. When mourning comes, as it often does, these "things" are not enough, they can't pull me out of it, they can't ease the pain, in fact, they intensify it.

There will never be enough Everett....

There will never be enough "things".........

There will never be enough pictures......

There will never be enough words......

Thankfully, there's enough comfort in my family, friends, and God, to bring me back to the surface once the storm of grief passes.

Katie

Thursday, June 4, 2009

In just a few short weeks.......

We'll be hosting the first, and maybe the only, Everett Peca Gala for Brave Hearts. This event will both honor Everett and his life and his battle, but it will also raise money (hopefully) for the Hospital for Sick Children (Sick Kids) where we received such wonderful treatment in an attempt to make him well.

We've been planning this gala for a year now. And way back last June it seemed so easy, we expected it to just all fall together nicely. Now that its just a few short weeks away, we're in panic mode. Nothing is falling into place like I hoped, in fact, it feels as though its falling apart instead. Don't get me wrong, we haven't been slacking. We've got a venue, a menu, advertising and tickets. We've got raffle items, we've got silent auction items and door prizes. We've got a few great volunteers and plenty of cheerleaders, what we don't have is guests. You can't have a gala without guests, not a successful one that is.

I'm not sure what went wrong. With want ads placed online, posters distributed all over town, a beautifully written news paper story (front page!), and word of mouth, you'd think we would have sold a bunch of tickets, we should be laughing and relaxing and preparing to party. Not so. We have about 95% of our tickets remaining to be sold. I'm nervous.

But, thankfully, there's hope still! We received an e-mail yesterday morning from a local TV network, and they want to interview us LIVE to talk about our gala and Everett. Our first instinct was "NO WAY!", Elvis and I are not "TV" people. We're not public speakers, and we're pretty socially awkward. But, lets me honest here, we're not in the position to be turning away publicity at this point, and it's come at such a direly needed time, I can't say for certain it isn't God sent, and who would turn that down? So, on June 12th, I'll get off work at 7am, drink a few energy drinks and arrive at the TV station at 10am, to do a live interview at 11am! I hope I don't come off looking like a zombie!! I hope that this will help us spread the word about our cause, about our son and about the great work Sick Kids does and why we want to help them continue to do it. I hope we'll sell out on ticket sales and that we'll be able to stop panicking and start dress shopping! I hope this is the help we need that saves us from having to cancel our beloved gala. Wish me luck!

I have to remind myself, we're doing this for them.......


And mostly for him. So no one forgets that he was, is, and always will be one of our babies. His life was short but incredibly important, he touched hearts, changed lives and made an imprint on so many. God had a plan for him, and we're watching it unfold before us. We're doing this for him. And in the end, we know it will be worth it!


Katie