Tuesday, December 6, 2011

Once upon a time....

Once upon a time, I never knew what it meant to grieve.

Once upon a time I had never lost a thing that was of real value to me.

Once upon a time I was blissfully and ignorantly happy, unaware of all the loss and grief my future held.

But that was then.

Life has brought me numerous blessings, it would be ungrateful not to awknowledge how full and amazing my life truly is.  But, it would be a lie to deny that the world has also brought me blow after blow, and loss after loss, it would be a lie to say I'm not feeling grief and agony along with that joy and gratitude.

Tomorrow is the four year anniversary of Everett's last day on earth.  It marks four years since experienced a truly unanswered prayer, four years since we said goodbye and walked out of Sick Kids with empty arms and shattered hearts.

Its been a rough four years, I can't deny it.  Its been a time filled with sadness and guilt and grief and longing and pain, all mixed it with joy and love and healing and blessings of course.  It's been a rollercoaster of emotions.  And I've grieved Everett at will over these four years, whenver the need struck me, I'd cry, blog, and grieve as the pain came, so as to not hold anything in, so as to not let it fester and become more grief then I could process.  I miss him with every single beat of my heart, and I am constantly aware of his absence in my life, and I know he would be just amazing, like his brother and sisters, but that's not my reality, it's not his either.

All I can think to do now, with this grief and with this pain, and with these memories, is to share it with the world, and to do good things in honor of Everett, so his brief but very special life continues to have meaning, and he can continue to touch hearts and make an impact on others.

He was so incredibly special.  So tiny and delicate, so wonderfully made.

He was precious and loved and an absolute amazement, for such a small and unhealthy little boy, he fought so very hard for his time with us.  He fought and held on and gave us 20 days of faith building love and memories.  I wanted more, but those 20 days were an incredible gift, I know it could have been much, much less.

I can't predict what tomorrow will bring, if it will hold tears or peace for me, I expect it will be a combination of the two, but I'm hoping to be able to remember with a calmness of heart and with gratitude, because Everett changed me in ways I never knew possible.

Indeed life is hard, but its also very beautiful.  Some of the most amazing blessings in life are brief, gone before you know it, but that makes them no less miraculous, and no less life altering.  He's in my heart and on my mind always, and I think I can credit much of my strength in the healing /grieving process to him, who is my inspiration, for there was never a stronger or more inspiring boy.

Love you always Everett.  Always.  -  XO, Mama

Katie

Sunday, October 30, 2011

Futile

Every "I wish"

Every "I'm so sorry"

Every "If I could only go back"

They're futile.  They're pointless.  They only serve to punish myself.

I wish I could hold him again, I wish I could change it all, I wish we had done it differently, I wish he never died.

I'm so sorry, Everett, I'm so sorry we messed up, I'm so sorry you paid for it.  I'm so sorry we failed you, I'm so sorry you're not here, I'm so sorry I couldn't fix it.

If I could only go back, I'd do it all differently, if I could only go back I'd tell them to take cautious, slower approach, I'd tell them to give you time.  If I could only go back, I'd hold you more and kiss you more and tell you more how much you mean to us.  If I could only go back, maybe I could save you.

Wishes don't come true.

I'm sorry doesn't change a thing.

And I can't go back.

And where does that leave me? Grieving and in pain, with nothing to do but cry out in pain, and in prayer, and let God do what he's been doing since we first lost Everett, hold me up. 

God please, hold me up, when I'm swallowed up in the futility of it all, when my grief is consuming me, hold me up.

Katie

A grieving season...

Leaves are falling, there's a chill in the air, and fall is in full swing.

Halloween is coming, and soon we'll be counting down to Christmas.  This has always been one of my favorite times of year, where fall ushers in a season of celebration and joy, from Thanksgiving through to Christmas, the weeks are packed with fun.  But, nearly four years ago, a change ocurred, which dramatically altered the season.

Now its a thanksgiving season.

It's a trick-or-treating season.

It's a kids birthday party season.

and it's a grieving season.

It was November 17th 2007 when I delivered my much anticipated twin baby boys, this marked the seasons start.  It ends on December 11th 2011, the day we burried one of them.  Each and every year, our hearts react the to coming of the season, where similar events and situations spark memories and emotions and bring them to the surface in an incredibly vivid and tender, even painful way.  This is not meant to imply that we don't grieve all year round, but this grieving season is when it all hits home.

It goes like this.

November 17th, we celebrate the birth of our amazing twin sons, we remember the awe and the joy and their delictate perfection.

November 29th, this is the anniversary of the day Everett had his first open heart surgery.

December 5th, the anniversary of his second open heart surgery.

December 7th, we remember the day our world shattered and fell to the ground, the day Everett died.

December 11th, we remember his funeral, the day we held him in our arms last, the very last day our eyes could look upon him, and for many of our family and friends, the only day their eyes would ever look up on him.

And every day since has been a day of remembering, falling apart, building up, looking for comfort, looking for a reason, grieving, and starting over. 

Sitting here, nearly four years after the birth of my boys, I can tell you that, at this minute, I'm okay.  I've been rebuilt and healed enough at this point that most days are okay.  I miss Everett always, there's a tiny place in my heart that calls out for him always, and there are tiny stings of grief each day.  But if you saw me, you'd think I'm pretty well healed.  But grief is a funny creature, and it comes and goes, like the tide ebbs and flows, like the seasons, it always comes back around again.  November is almost upon us and I'm already trying to mentally prepare myself to handle being simultaneously happy and bereft.  Because I'll celebrate the birth of three of my children this month, and I'll also be welcoming a new baby niece, and I'll be mourning Everett, and recalling the details of his birth and his death at the same time.

I'll light birthday candles for Landon and watch him blow them out, and I'll be grieving all the birthdays Everett will never have.

I'll wrap up Avery and Landon's birthday gifts and cry over the fact that I'll never get to pick out that something special I just knew Everett would love.

I'll watch others celebreate my living kids and my heart will hurt because I'll look into their eyes and wont see a hint of sadness or grief there, and I'll know they aren't thinking of Everett at all.  To them, life without him, it's normal, and I'll grieve harder knowing I'm doing it mostly alone.  I know they loved him, I know they wanted him to live, but they don't feel it like we do, they don't get it, nor should they.

While I'm waiting for the first snow to fall and awaken that child like wonder in me, I'm waiting for the first pangs of sadness to arrive and awaken the memories that sit just beneath the surface.  I'm waiting to feel it again, to really feel those emotions once more,  and in them, feel closer then ever to Everett.

My tears bring me closer.

My pain brings me closer.

My breaking heart brings me closer.

So close to how I felt back then, when it was happening, so close I can almost see him, almost feel him.

And that is the joy in the grieving season.

Katie

Friday, October 14, 2011

Dear Everett...

Dear Everett,

Tomorrow is a dedicated day of remembering for grieving parents everywhere.  Tomorrow is a dedicated day to awknowledgement, for how many parents out there have a child, or children in heaven, but you should know, I remember you every single day.  In fact, I remember you every single second of every single day.  You're on my mind constantly.  Your face flashes through my mind non stop.  You face stares back at me every single time I look at your brother.  My heart beats your name, Everett-Everett-Everett-Everett.  Your pictures are on the wall, you hands and feet are tattooed near mine.  I take you with me EVERYWHERE, I speak your name and tell your story at every opportunity I get.

I don't need a dedicated day to remember and awknowledge you, but on the eve of a very significant day for so many families, I find myself even more eager to share your name, your picture, your memory, your story, with the world.  I want them to know you, to see you, to hear you, and to understand that you are still so much a part of our lives, and how the loss still echoes through us.  We're still grieving you, I know we always will, and though outwardly we seem to be living our lives and doing well, there are still so many moments, so many silent moments of awknowledgment between your dad and me, or your aunt Courtney and me, or your Gramma and me, where we don't need to say a thing, but we know our hearts are still aching, still breaking for you.

You should know that Landon knows you.  He may not ever remember being near you, but something inside of him KNOWS you.  That bond, that brotherly bond, that twin bond, it wasn't broken with your death.  His heart beats your name too, you are significant to him, even though he doesn't know why just yet.  He talks about you now, and it's an indescribable pain, and joy to hear your name spoken in his young and innocent voice.  He's grappling with the concept of heaven too, he doesn't get it all, someday he will, but I think I like it best this way, because he's not sad at all, he doesn't know that there's sadness attached to you, and I think that's good, he just knows you're his brother.

Avery gets it, and sometimes she's sad about you, but mostly she just remembers you, and includes you EVERY time she tells people who's in her family.  She's a very smart girl, she knows too much for her age, and she sounds so worldly and mature whens he explains to someone that she has a brother in heaven.  She loves you and misses you, but heaven scares her, because she understands that you can't come back from heaven.  I feel bad, because she's aware of death and it scares her.  That's not your fault, it's mine, I fell apart too many times in front of her, she knows there's pain attached to loss.

I'm sure you know of Stella, maybe she met you in heaven prior to her departure to earth.  I like to believe that.  I like to think we all start there, then return in the end, I like to imagine you two knew each other before she joined us here, and no one will ever disprove it for me, so I'll hold on to that thought because it comforts me some. 

I still struggle so much, daily, the aftermath of losing you is chaotic.  Tonight I was fine, and then I started looking through your pictures on the computer, and in a random folder I found a misplaced video, one I hadn't seen in a while, and I did the foolish thing, and I played it, and within seconds grief consumed me, like a vaccuum, I was swallowed up in pain and tears.  Irrationaly I fought against the reality of you being gone, and pleaded for you to be returned to me, my thoughts demanded that the injustice of your death be reversed, and I knew it was ridiculous to think such things, but it can't be helped.  I watched you breathe on that video, I watched your little stomach heave as you labored for each breath.  I watched your eyes open ever so slightly as I spoke to you.  I saw you live again.  And it was agony, because I WANT YOU.  I want you in my arms, I want to hold you and kiss you and stroke your soft skin and hair, I want to hear you cry, I want to mother you, I want to do all the things that your death robbed from us both.  I want to change your diapers and dress you and nurse you and comfort you and nap with you on the couch, and I never will.  This stings in a way I won't ever be able to describe. 

You should know that we miss you and love you and that we wish that things had gone differently every single moment of the day.  You should know we tell the world about you and that we love you every day along with your brother and your sister.  You should know you made us better people.  You should know that we're doing good things with your memory and with our grief.  You should know that I tattooed your hand by my hand and your feet by my feet, but God tattooed you on my heart, and you and I are never apart.  I don't know what I believe about your experience in heaven, I'm not sure if you can see us or not, I'm not sure if you think about us or not, I suspect the glory of heaven is more then a little distracting, but I pray with my whole heart that you feel me up there, that you can feel my love for you always, and that we are not truly seperated at all, but that our love is a bond that remains unchanged even though we are not together.

I miss you so much, and as silly as it sounds, I wish you could write back.

I'm confidant though, that you're in good company there, in heaven, because sadly my pain mirrors the pain of so many other moms and dads, and you likely have many other baby companions up there with you. 

I love you more then words can tell,
I thought you should know

Mama

Monday, September 26, 2011

Discussions of grief can arise unexpectedly


Yesterday we took our children to see The Lion King in 3D at our local theatre.  They were excited and so was I, because I loved that move when it first came out and I was eager to watch it again with fresh eyes, and to see my kids enjoy it for the very first time.  We all had a great time and rode home in the car talking about our favorite parts and our favorite characters, it was a really great family outing.

Later in the day though I was standing at the kitchen counter and Avery came up to me, a little more subdued, and asked some more serious questions.

"What happened to Mufasa, Simba's dad?"

He fell I told her, and died.

"Ya, and went to heaven too, and then talked to Simba in the clouds, and lived in Simba forever"

That's right I told her, nice observation.  One of the lines of the movie, was "he lives in you," when explaining to Simba that his father will never truly leave him, because his strength and courgage and love live on in him. 

Avery continued, "Everett lives in me, because I remember him too, but he's not in the clouds".

Silence.

You're right, I told her, he lives in all of us, because we are all so full of love for him.  I went on to point out that perhaps we might see him in the clouds, or the sky, we've never really looked.  Satisfied, she went on her way, but she left me standing there amazed at how often she ponders Heaven, and Everett, and God, and the logistics of it all.  She gives in genuine thought, she mulls it over and asks such insightful questions, she really does want to figure it all out.

Since she clearly thinks about what happens to us after we die, and she clearly wonders about the capabilities we have once in Heaven, to interact with our loved ones on earth, I may need to share this quote with her, it may just "click" with her bright little mind.

“Perhaps they are not stars, but rather openings in heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.”

 

Katie

 

Thursday, September 1, 2011

Going back...

The night Everett died, we walked out of Sick Kids (The Hospital for Sick Children), with empty arms and shattered hearts. We were broken people, and in our broken state, we felt overwhelmed with anger and pain and grief, and needed something, someone, or someplace to put all those feelings on. We took our anger and we put it on God, who we thought should have saved him, should have cured him, but didn't. We took our anger and our grief and built walls with it, trying to block out the rest of the world, who seemed to carry on normally when our world had fallen to pieces. We took our love and we put it on our surviving children, who were like salve to a burn, they soothed and healed and took away some of the sting. And we took the unnamed negative feelings, the negative associations, the memories of what Everett endured in his time on earth, and we put them on Sick Kids. Though they did so much for us, and for him, and though they treated him so amazingly well and we were so grateful for how hard they tried to save him, we came to associate them with death, with pain, with loss and with the moment we had to leave Everett behind and go home without him.

For years, I lived in fear of having to return to Sick Kids, for any reason. Their commercials on TV made my heart race, and seeing pictures of the hospital, even happy pictures, made me panic. I developed a full aversion to the place my son died, even though I had fundraised for them and believed in their work and their staff, to me, it was the place my baby died, and I couldn't bring myself to reconcile to it.

The other day I made a trip to Toronto with a friend, for a day of fun with her and my new baby daughter. Plans changed unexpectedly when my friend, who works at Sick Kids, had to made a stop in to work, and I panicked at the prospect of having to go with her, even for a short while. I panicked imagining us driving on the streets near the hospital, I imagined the familiar scenery and my heart beat faster. I imagined the parking garage, the elevators, the cafeteria, the murals on the walls, and I cried at the very thought of it. My friend and I decided that to avoid any discomfort for me, I would wait at a nearby coffee shop for her, but as we drove closer to Sick Kids, I found I wasn't panicking, my heart wasn't racing, and I made the huge decision, to go in with her. I made it through the parking garage, through the elevators, through the hallways, through the cafeteria, and I was shocked at what I felt.

Not pain.

Not sadness.

Not panic.

Not grief.

More like relief. More like a pleasant familiarity. Something near to comfort. Some much like peace. How incredibly strange.

I sat in the cafe, just like I had years before, it was exactly as it was back then. I watched the people come and go, Dr's, nurses, patients, parents, volunteers, I watched the elevators go up and down, and I stared up at the floor that Everett was on. I stared up at the spot that we had stood at and stared down from so many times during Everett's stay at Sick Kids. I held Stella and looked around wide eyed, and it was all so much the same, but I felt like I was seeing it all for the very first time. My eyes never welled with tears, and my heart never raced, my breathing never quickened, and sadness never overcame me.

And I felt like some divine plan was falling into place before my eyes, and that I was supposed to come back to this place, at this time, with my baby girl in my arms, to teach me something about healing, and to help me see our experience here at Sick Kids with new eyes.

For more then three years I dreaded ever setting foot in Sick Kids again, because it was the place where Everett died.

Now I saw it as the place where Everett last LIVED!

I used to see it as the place we lost our faith.

Now I see it as the place God used to really lay the ground work to build on it.

I had been thinking of Sick Kids as the site of the event that sent our lives spiraling out of control, and sitting there again, years later, I could see that God used it to set us upon a new course, perhaps a painful one at times, but one that would ultimately teach us so much about love and faith and grace and the importance of cherishing life.

Driving to Toronto with my friend, I wrongly assumed that it would be so difficult to set foot inside that building, but sitting there alone with my baby, surrounded in familiar sights and sounds, and memories, I realized that it would be so much harder to leave it. The pain would come from walking out the doors again, not in. Because there in the cafeteria of Sick Kids, I felt closer to Everett then I ever had in the past three and some years. I felt near to him, and more peaceful and content in his memory then I could have ever imagined. Leaving felt like walking away from him again, but this time it didn't make me fall to pieces, and it did not bring me tears. And this time I did not walk out hoping to never go back again, but rather looking forward to a time when I could go back, and feel that closeness once again.

When Everett was alive and being treated there, I bought myself a necklace in the gift shop, a Bravery Beads necklace with a bright red glass heart pendant. And on my return trip there this week, I went back to the gift shop and bought myself the matching bracelet, it only seemed fitting that I not walk out empty handed, and I walk out with another piece of "bravery" jewelry, to reward myself for taking the monumental step I took, and facing a fear I had been holding onto for too long.


So here's to doing things I never imagined I could do.

Here's to feeling things I never imagined I could feel.

And here is to Everett, who continues to change my heart and my life, each and every day!

Katie

Monday, August 29, 2011

I'm thinking of you....

I'm thinking of you today Everett. I do every day, but today, my thoughts refuse to leave you.

I remembered something painful, and I can't get it from my mind. I can see it in my head when I close my eyes, and it hurts as badly as it did when it first happened.

I pictured handing you over to the nurse at Sick Kids, when the time had finally come to leave, and through tears and sobbing, I uttered the words "Bye Everett", I could barely get them out. I can see myself that day, I can see the agony, and I can hear the grief in my voice, it's like I'm watching someone else. And I still just can't believe that was you and me.

I'm so sorry you had to go, and if I made your departure harder by holding on too tight, I am so sorry for that. I remember I whispered in your ear and begged you not to leave me, as if you ever had a choice. I'm sorry if understood that your leaving would hurt me so badly, I'm sorry if you had awareness that you would leave a hole behind. I hope you left with comfort, and assurance from God that he would take care of us left behind.

Oh God how I miss you, today and always. My arms still long for you, and your memory, your picture, your name, they all still bring me to tears, though that's not a bad thing, those tears bring me closer to you I think.

God knows how losing you has changed and shaped my heart and life, God knows how badly I still grieve, but you should know I'm striving to take that pain and use it to lessen the pain of others, in some small way. You should know that though I hurt, we are all the better because of you. You should know I pour myself into grieving you, just to feel such intense emotion, such intense love, it feels like we're together while the tears are streaming down. It hurts, but that's the point.

I'm thinking of you Everett, each and every moment of each and every day, and I promise I always will.

I love you so much more then I have the words to tell, and I pray I can feel you near when I need it the most.

Love your Mama, always


Tuesday, June 7, 2011

In the name of love....

How do you parent a child you never get to see?

How do you show your love for a child you never get to hold? Never get to kiss? Never get to tuck in at night?

How do you pour out your heart and your gratitude for a child God gave then took away?

These are questions that plague me, and all parent who have lost a child I suspect.

How can I keep Everett a part of my daily life? How can I love him like I love his sisters and brother? How can I continue to parent him? How can I still be his mother and help make the best of his life?

The answer? It's complicated.

I got his name and his footprints tattooed on my ankle. His handprint is tattooed on my wrist.

His picture hangs on the wall in the livingroom, there are tiny memorials to him sprinkled throughout the house.

He has a baby book.

I made him a Shutterfly photobook just I like I did for the other kids.

We made him a memorial garden in our backyard.

We planted a tree in his honor.

I think of him every hour of every day.

But it still doesn't feel right.

I can't take him to school with his brother.

I dont' get to kiss him goodnight.

I don't know how it feels to rock him to sleep.

I've never put a bandaid on his boo-boos

I've never seen his name on a birthday cake.

I've never watched him unwrap a Christmas present I just knew he would love.

I've never read him a bedtime story.

I don't get to be his mother in the way I want to, physically, tangibly.

There aren't too many ways I get to show the world my son, the one who died but I still love dearly. But I've found a way that feels good, as good as grieving can feel, and I've decided the best way I can show the world my love for Everett, and make the best of his life, is to fundraise in his memory.

It's awkward though, to implore people, the ones you know and the ones they don't, to support my cause, which doesn't mean the same to them as it does to me. It feels strange to ask for money to honor him, and I worry that I just can't communicate properly to them the how's and why's of our efforts.

But I can't NOT ask you to support me in this. I can't NOT tell you how important your support is. I can't NOT want you to attend, because I love Everett, and this is important to us. It's one very small way we can show him, you, God, and ourselves, that we have figured out how to cope with losing our baby, that we know a good way to take that pain and make it beneficial in some way.

I'm motivated by my grief, to make some good from it. I'm eager to take the scenario that broke my heart and use it to touch others. I want him to break your heart, I want you to feel a pang of something for him and for us, and then I want you to take that little something you feel and help us do something with it.

The NICU is full of babies. Some will have short stays and go home healthy. Some will have longer more complicated stayes. Some will never go home.

Then there are their parents. Mother's, newly post partum, who have found themselves parked in the NICU beside an isolette instead of resting in their hospital rooms having guests fuss over their new baby. Mothers who are pumping breastmilk every 2 hours and bringing it to the NICU so it can be given to their baby via naso-gastric feedings, rather then nursing in that glider rocker in their nursery at home. There are mothers and fathers sleeping on cots and pull out chairs in waiting rooms and at bedsides, while they wait to hear how their child did in surgery. There are parents who finally leave the hospital, babyless and broken hearted, like we did.

And I can help. In some small way, we can help them.

Our donation, no matter how small, can do good. Last year we had a charity Stella & Dot trunk show, just like the one we're doing this year, and we raised appx. $800 for the NICU. We took that money and we had two beautiful custom rocking chairs for them. And at this very moment, some new mother is being handed her baby for it's first feeding at the breast, some dad may be getting his very first cuddle with his baby, maybe their sleeping in one of our chairs at night while they hold their bedside vigil.

Our chairs helped. Our intentions helped. Our loss has helped, and therefore has become more then just a painful experience to us, but something more. We can see it now as part of a grander plan, we can see now that we are, and Everett was, part of a complicated weaving of lives knit together. We can't see how it all fits together, but we know it does.

On June 18th we're fundraising again. Same format, because it was so successful last year. But I'm afraid. I'm worried we won't be successful again. I'm worried that people aren't being touched by Everett the way they were, I'm worried his memory, and his impact are fading out. I'm worried that I'm not doing my job as his mother and honoring him and his life the way I should. Because if people aren't moved and inspired by him, I am not doing my job right.

I'm praying God leads hearts to support us. I'm praying my backyard will be full of supporters on June 18th, and I'm praying we'll be able to help in some small way, parents and babies in the NICU, by giving a donation in Everett's honor.

It's what I have to do, in the name of love.



Katie