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

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

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

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

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

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

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