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

What is there to do now..............

But quote Joe Purdy, and his sentiment "hard times, they last too long"

In fact it would seem at times, they are never ending, or that at the very least, they never completely dissapear.

Hard times are still marching on.

Sometimes we forget they're there, but they rest beneath the surface of our temporary peace and serenity, always bound to resurface. Always.

I'd like to tell you friends that in time grief itself passes away, but it simply is not true. Grief is invincible, it never dies, it can't be killed. The very best you can hope for is that you can endure your life with grief riding on your back, and that from time to time it will hop off for a spell and grant you a temporary sensation of relief. But grief I have learned, will always hop back on.

It's been three years since grief moved into my heart, well, nearly three years, just a few short weeks to go now before our anniversary, and I can't report to you all, grief and I are still going strong, our relationship has been consistant and dependable. Grief it seems will never leave me, no matter how much I wish it would.

Three years ago tomorrow, my identical twin sons were born. At 5:33 and 5:40am, pink and wailing with heads capped with dark brown hair and precious little features. Three years ago a dream came true. And in just a few weeks we'll solomnly remember that 20 days after our beautiful sons were born, one died. He spent his entire life struggling, he endured too many medical interventions and procedures to list, and he died. The next day we brought just one baby home, one baby, and grief who would fill up every empty space in our home and our hearts.

There's a part of me who is deeply ashamed of the mixed emotions I've been balancing since December 7th 2007. I've been trying to host joy and anguish in my heart simultaneously for just about three years, and it's an incredibly unnatural sensation to try and be loyal to both. I am joyous for Landon who has brought warmth, love and peace beyond measure into our family and into my badly broken heart. He is a miracle, it is by God's grace alone he is alive and perfect and lighting our lives each day. But at the same time, I cannot pretend that life is all sunshine and roses and rainbows just because I have two very lovely and amazing children I would not change for this world. I cannot deny that I grieve. I cannot deny that I long for the one that God took back. I cannot deny that my heart shattered and splintered and has never been restored. I cannot tell you I do not hurt. It would be disloyal to Everett to deny that his birth and his death have impacted my life like a meteor, leaving a giant crater on my soul.

I can't devote myself to joy entirely.

I can't devote myself to grief entirely.

I am a woman divided.

Counting my blessings.

Counting my losses.

Praising the God who gives, struggling with that I am supposed to also praise him when he takes away.

And I am often ashamed, that I can't figure out how to love and honor both boys with the perfection they deserve.

At 5:33am on November 17th 2007, Everett came into his life. He was 17 inches long and weighed 5 pounds and 4 ounces. Landon joined him seven minutes later, at 5:40am, he was also 17 inches long, he weighed 5 pounds and 6 ounces. They were perfection.

On December 7th 2007, sometime after 8pm, Everett left his life. He was 20 days old. He was 17 inches long and I estimate somewhere in the range of 4 pounds when he left us. He was perfection.

On December 8th 2007, Landon came home alone. He was 17 inches long, weighed 5 pounds and 11 ounces. He was lovely. He was like salve to a burn.

What am I to do now?

What reality to I embrace, what reality do I deny? Can I have them both simultaneously?

Will you understand when I am in tears on the day I celebrate Landon's birth? Will you allow me to celebrate the gift they were together and the joy Landon is now, while at the same time allowing my heart to break over the loss of Everett, who was also a gift and as much a source of joy as his death was a source of pain?

Will you remember on this happy day, now that years have passed, that it's not just Landon's birthday, but rather a season of confusion and hope and fear and desperation, of loss and of grief. Will you be mindful that grief lives here still?

Because I cannot forget.

Even in good times, hard times persist.

Even in joy, pain still exists.

Katie

It's that time of year again......

How bittersweet it is.

In just a few days, the birthday celebrations will begin. First comes Avery, we'll celebrate her turning five years old. Then comes Landon, who will be three, and Everett, who will never be more then 20 days old. It just hit me that past few days, why I had been experiencing an increase in tears, aside from being pregnant, my subconsious has been aware this time was approaching, even if I didn't let myself become aware until just now. Now it's time.

Time to balance sweet celebration with bittersweet memories of birth and death intertwined. Time to remember the joy of the delivery of my beautiful twin babies and to relive the sorrow of saying goodbye to one forever, just 20 short days later. Time to celebrate the lives of two of my children, while mourning the loss of the third. Time to put on a happy face for the party and the public, and cry until my tears dry up in private.

From November 17th to December 11th I walk an emotional tight rope. Reliving the most surreal and unbelievable weeks of my life. Birthing babies, sweet tiny babies with pink skin and dark brown hair and beautiful and unending potential. Then sick baby, small, weak, frail baby. Great big surgery on tiny little sick baby. Blood and tubes and bandanges and nurses and doctors, and terror. Fear unending. Driving. Crying. Pumping. Snuggling healthy babies ,barely touching sick baby, can't pick him up, can't hold him, can't change his diaper, can't help him. Tears. More surgery. More tubes, more blood, more fear. Prayers. Mad, frantic prayers. Denial. Brain bleed. Despair. Meeting death face to face. Goodbye baby.

Time to fake my way through this time of year again. Somehow I always manage to do it. I'm not exactly sure how. My sweet beautiful brown eyed children, boistrous, lively, spirited and smart, they most surely help me through. Just as certain as I have something to mourn, I have something to celebrate. They are the life savers that keep me afloat when my grief threatens to drag me beneath the surface.

Happy Birthday to all my babies.

Katie

I am a rambling fool.....

Of all the wounds left unhealed, on my heart and on my soul, many can and will be healed by time.

But there can be no healing for the gaping wound that has been left by the passing of Everett from this life into the next. The most unnatural of wounds, with no known cure, it will forever remain open and exposed, and succeptible to flare ups of pain and tears. And this is perfectly fine with me.

The presence of pain, of sadness and of distress has become familiar, and in a peculiar way, it has become a comfort. Though Everett has no physical presence in our lives, he still has a very real and tangible presence. We feel him daily, by way of our sadness and longing, by way of memories, and by way of pain. It's not entirely melancholy, though I can see how some may see it that way. It is exactly as it was. Beautiful, but painful. Good but bad. Beautiful and ugly. And this is how it still is.

If there can be no Everett in our arms and in our lives, then his memory, and our sadness, and our grief is all there can ever be of him aside from the 20 days he was here to touch and hold and take in.

If this is all there is, then this is good.

And if this is all there is, and this is often sad and pained, then said and pained are good, and I will welcome them as manifestations of Everett come to visit, come to sit by me a while, come to make me feel. And I will welcome the presence of heart ache and the company of tears and cradle them like my baby son long gone to the arms of the Lord. I will treat them like a blessing, like a gift from above, like a small window in time, where the separation between me and Everett is as thin as cellophane, and I can practically feel how it felt to be near him, where I can feel the same emotions I felt on the last day that I held him, and that intense pang of grief will connect us once more.

There can be no healing for this eternal wound. And this is good.

The miracle lies in how time, and how God, and how life have banded together to make grief a beautiful thing, and a positive thing in my world. It could so easily have been a force of destruction. Even more miraculous, grief has born hope. Where my world burned like the surface of the sun and when it was done nothing but ash remained, God worked. God worked and from that ash grew faith and hope so strong that they could not only tolerate, but thrive alongside grief and longing and an inconsolable sadness. Miraculous.

We're always surprised when a storm hits close to home, when it devastates our lives, like these things only happen to other people. We are genuinely shocked then the sky above our own heads blacken and violent winds shake us to our cores. And we cower away and pray that God would have this storm pass us by, and when he doesn't, we shake our fists at the sky and curse him, or renounce Him, declare Him powerless or imaginary, because we had to feel a storm.

Where did that notion arise?

In truth, we all face storms. We're all shaken and rattled by raging winds. And in the end, the sky clears, and the clouds part and across the recently blackened heavens, delicate shades of red and orange, and yellow, and blue, and violet arrange themselves just so among the clouds. And we are appeased. We praise God for the rainbow, but what of the storm? Was he not equally in power then?

When hardships happen, we want to believe they are random. When rainbows dance across the sky we want to believe that God placed them there just for us. In truth, He placed the rainbow, but He also placed the storm.

The trick? To be thankful for both.

Katie

Bittersweet

Today we held a fund raiser, in Everett's memory, benefiting the NICU at our local hospital. It was a jewelry party, all proceeds being donated, and it was really successful.

We celebrated with cake.


And it was unexpectedly emotional.

As I stood there divvying up the cake, I felt my eyes readying for tears. I could feel them heat and water and my chin quivered just a bit. At first I didn't understand this tidal wave of emotion, but then it hit me. This is the very first cake I've served with Everett's name on it. He's never had a birthday cake.

He'll never have a birthday cake.

The need to cry stuck with me through the afternoon. And when no one was looking I stole away to the bathroom to cry for all the birthday cakes Everett will never have.

Then I came out and celebrated the money we raised in his memory, and started planning all the good we'll do with it.

I miss my baby so deeply today.

Katie

It's a heartache......

I'm channeling some Bonnie Tyler this afternoon with these song lyrics:

It's a heart ache, nothing but a heart ache,
Hits you when it's too late,
Hits you when you're down.
It's a heart ache, nothing but a heart ache,
Love him 'til your arms break...........

I've been missing Everett a lot lately. Not to say that I've been missing him more then usual, but perhaps more intensely then usual. This happens, the grief ebbs and flows, intensifies then pacifies.

It hurts in a peculiar way some days, when his name sounds foreign to me, because it hasn't been used the way the other kids names have been used, it's been years since we spoke it to him, it's been years since we spoke it and spoke about him in the present tense. That is, it's been years since the name accompanies a presence. The name alone, some days, feel hollow, like an empty promise.

It hurts to see his picture on the wall and to know that he's an important member of our family, he's on of our children, yet we don''t have him to hold, to touch, to raise, to love, and to raise. Again, it feels hollow, it feels empty, and it feels strangely disconnected. The absence of the connection is what hurts. It hurts to feel distant from him, the weight of his body in our arms, the sound of his cry, the feel of his skin under our kiss, the softness of him. That these are just memories is what hurts so much when the grief rises up.

Where have those feelings gone? The ones we hoped would never fade.
We swore we'd always remember how he felt in our arms, how he sounded, how he smelled, how he looked, what it felt like to love him and parent him. But those feelings have faded without our consent. The memories too. The biggest agony I've felt since losing Everett is feeling as though he is becoming a stranger to me. That he is becoming just a memory, he's not the intense presence I always hoped he'd be. That is a pain I did not anticipate.

I'm trying so hard to cling to the feelings that connect us to the time where we had Everett, when he was real and tangible and touchable, and that often means pouring myself into the deepest of grief and resurfacing the most painful memories to bring up real, painful and still deeply connected emotions, clinging to his memory, wanting to be holding him, holding him so hard my arms would feel as though they could break.

Is it possible, that more frightening then a broken heart is a healing one?

Katie

It was what it was....

Today, and probably more often then I realize, someone somewhere in the world looked at a picture of Everett.

They came across it on Facebook, or on my blog, or found our newspaper article online, and their eyes looked upon my son.

Maybe he was sleeping soundly in a sleeper and knit blue cap, all tucked in with blankets at Sick Kids, before surgery.

Maybe he was wide eyed and curious sporting nothing but a diaper and some monitoring wires.

Maybe he was intubated, hooked up to ECMO, sedated and bleeding.

Maybe the saw the picture of he and I holding hands on his very last day here on earth.

Doesn't matter either way.

They saw him.

They saw him in all his tiny delicateness, they saw his fragility and the precarious nature of his battle.

They saw his beauty, the fineness of his features, his future handsomeness already apparent.

They saw his affliction, they saw what he was up against, and they saw his bravery, and what he was fighting.

They saw him lose.

They saw us break.

They saw him, and us.

Somewhere out there, someone saw my son, and they got it. They felt something for him and for us, and it's a strange but good feeling.

They saw the reality.

They saw the untouched photos, and they aren't pretty. It wasn't pretty.

But, it was what it was.

It was sad, and scary, and filled with panic and desperation.

It was painful, for us and for him.

It was bloody, and messy and complicated and uncharted territory.

It was heart breaking.

It was life ending and life changing.

It was tragic.

It was horrible.

And today, and on many other days I am sure, someone saw that.

And I feel somewhat validated, because I spend a great deal of time feeling like the vast majority of people we know, aside from those who saw it first hand, just don't get it. They don't know what it was. Their minds have cleaned it up, prettied it up, made it nice and neat and easy, but it wasn't. It was exactly what it was.

But here's what else it was.

It was life changing, it was love filled, it was hope filled, it was heart breaking but soul saving, it brought us to our knees in pain but led us to prayer, it was perspective changing, it deepened our capacity to love and to care and to feel. It was crawling over hot coals and coming out on the other side scorched, burned, blistered and bleeding but knowing that we did it, and we could do it again if we had to, and we'd do it again in an instant if we had to. It was bad, but it was good.

It's inexplicable.

But, someone today saw a picture of Everett.

And they pondered him.

They thought about him, and his fight, and our loss, and our broken hearts.

They said his name, either out loud or in their heads.

And that is also inexplicable.

It's inexplicably touching.

(I've got nothing on you baby.....)

Katie