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Sunday, September 29, 2013


One of the most difficult things about losing a child, ironically, is having more children at home.  I  know that seems to be in direct conflict with mainstream thought, because it's been suggested more times than I'd like to count that I "get better" or "continue living" for my other children.  However, one who has never been in this situation cannot possibly know the pain and fear brought on by the "other" children at home.  They are potential for more pain, pain that you know better than anyone else.  The truth is that IF someone CHOOSES to live beyond that moment that changed their entire world, it is because they themselves make that decision every minute of every day.  I assure you that it's not one you make and then are free to simply forget your other options, and I'm not suggesting that the choice to truly live is the right one for everyone.  As scary as that statement may be for some, for me and anyone else who's lived here, it's simply truth.

I've learned that nothing in life is coincidence.  None of the people we meet come into our lives purely by chance.  When I was about 16 years old, I met a woman whose name I wouldn't actually come to learn until many years later.  I remember that she walked up to me with her beautiful little two-year-old daughter bouncing on her hip.  I was wearing a crown at the time, (small-town fodder to be used at a later date, when I find it more amusing) and she asked if I'd be willing to take a picture with her little girl who was pretty convinced that I was a real princess.  I smiled and reached for the baby and we took the picture.  When I returned her to her mother's arms, I noticed that their smiles were identical.  They had those "whole face smiles". You know, the kind that makes it impossible to do anything else but smile with them?  I remember thinking, even in my 16-year-old ego-driven brain, that this was one of the beautiful moments. Their identical eyes smiled back at me, and I knew I'd witnessed something great.   I watched as that woman carried her daughter away, and she was giggling and whispering to her precious, cherub-faced mini-me.

I've thought about that moment a lot over the past year.  At the time, I'd known that it was special, but I'd had no idea how much those two people would come to mean to my life.  That sweet little baby girl has grown into an incredible young woman. A young woman who's had to become incredible without her mother because she was taken from her entirely too early.  Although her youth suggests that I would be the one teaching her about life and loss, I'm amazed daily by what she teaches me. I know, because of her, the value of a child's time spent with their mother.  I see the pain of the little girl who misses her Mommy, while at the same time she shines as a woman who's choosing, each day, to honor her mother's memory by becoming something incredible.  She's still beautiful.  She still captures my attention with that smile, and she still boasts those unforgettably identical eyes.

My husband and I decided to take each of our "other" kids on a special trip this year instead of having birthday celebrations.  They each got to choose a destination and we bought three tickets for each trip, one for the child, one for Daddy, and one for Mommy.  These trips were meant to focus on them individually, so we left the other two with family.  We were never able to do things like this when their brother was alive because he needed such constant care that my being away from him for more than a day at a time proved impossible.  And even if I'd allowed for a brief time away, my thoughts were always consumed with him and his well-being.  This weekend happened to be our youngest daughter, Morgan's, trip.  She chose Disney On Ice.  I don't know what it is about that man that built a world around a mouse, but his healing powers cannot be denied.  She loved every second.  We spoiled her rotten.  Price tags don't exist on these trips and the tears we typically seem to find daily, give way to hugs and giggles every time.

This morning, in the last few moments of our one-on-one time, she climbed into my bed while I was reading, and opened her own book.  We lay like that for a while before Daddy came down to find us.  He asked her what she was doing in his bed and reached to tickle her.  She laughed and begged him to stop because he was moving the blankets and it was making her cold.  He said, "You sound like Mommy, now.  She's always stealing the covers because she's cold."  She didn't hesitate, but looked straight at him and said, "I AM Mommy."  He told her that she did look very much like Mommy, but she shook her head and corrected him again.  "I AM Mommy."  How many times had that other baby girl thought the same thing, and wished for one of these moments?

Daddy left the room and I looked over at my beautiful baby girl, the one who looks so much like my forever baby that sometimes it's painful to do so.  I reached around and tickled her until we were both laughing so hard we could barely breathe.  Then she looked over at me, sleep lines still not completely gone from her cheek, and in all her 6-year-old innocence said,

"Mommy, there's a tear in your eye."

"I know, Baby."

"But why, Mommy?"

"Because my heart is so beautifully broken and full all at the same time."

Although she probably didn't totally understand, her response was perfect.  She simply reached up and caught the tear as it fell, then snuggled closer.  And in that moment, that crossroads of the beautiful moment given and the one that will never be, I couldn't help but think of that baby girl and her Momma.  So, to the woman who brought her wide-eyed, giggly girl to have her picture taken with a princess fifteen years ago:

Thank you for that day.  Thank you for this moment with my own daughter.  And thank you for the opportunity to know and love YOUR princess.  I assure you, she's everything you'd ever dreamed of and more.

Friday, September 20, 2013

The Pillow

I asked for a dream and I got one, but it was the kind of dream that makes me want to scream when I'm told to try and "get some sleep."  This is what happens when I try...

It was a strange mix of two women experiencing something at the same time. The two women being my "now" self and my "dream" self.  In the dream, I knew that Easton was going to die long before that day ever came.  The "now" me knew the twisted agony of loss and kept encouraging my dream self to cherish every precious second, to soak up every scent from every fiber, and to trace every line with my finger.  At times he could even speak and would ask questions that suggested that he didn't know he wasn't going to have a future.  Other times, he was that baby that I knew. He was the one that I was nursing as he was staring up at me with such innocence.  You know how your baby looks up at you mid-meal and when they catch your eye and smile, milk runs out of their mouths and your whole being is consumed with love for this little person?  It was that moment, and in that moment I was telling my dream self to forget the idea of wiping away that milk that would soak my clothing as it dripped from his mouth.  I urged the dream me to envelope myself in that moment, pulling him closer to me, letting him nurse longer.  Forever wouldn't be too long.  In fact, forever would be perfect.

When he was able to ask questions about a future I knew he wouldn't have, my now self told my dream self to just answer as if we had all the time in the world.  Tell him that someday he'll be begging for a car and that first taste of freedom.  Tell him that the books will get heavier as he nears graduation.  Tell him that you'll be there on the day he tells you he met the love of his life, and although you vowed you never would, you'd secretly pester him about grandchildren. Tell him these things and save the pain for later.  Save it for when you alone are experiencing it and he is in a place of peace.  Carry the burden of relentless pain over the "never wills" on your own and spare him that moment.

Then I woke up, my body shaking violently, wracked with sobs.  The sleep stupor gave way to the harsh slap of reality (as it always does) and the realization that he was already gone settled in once again.  There was no longer a dream self.  There was just that now self.  The one who'd already cried a thousand tears.  The one who'd already isolated herself from the world she'd once known.  My now self raged with anger as I cried myself fully awake.  My face hot, and my tears hitting my burning cheeks, I rolled to my side to crush into my pillow and bury the sound of sobbing because the now me had already woken too many in the middle of the night with her pain.  No reason to do that again.  Instead, I cursed whatever silent power had allowed me to dream in such a painfully paralleled way.  In my head I was screaming at how unbelievably unfair all of it was.  Of course I'd asked for a dream, but did everything have to come with an edge, a knife just waiting to dig into a still very open wound?

But, as I lay there letting my body regain some semblance of control, I began to see the dream from a different perspective. This is how it could have been if you would have known. At one point, we could have learned of his disorder, but because he didn't fit the bill, the doctors didn't pursue it.  Babies with this disorder DIDN'T get better.  The first hit should have killed him.  I remember when we finally did test him, and I sat alone in his room with him, reading what a positive result would mean.  I clutched his hand and BEGGED for them to say they'd gotten it wrong and that he actually had cancer.  PLEASE say he has cancer.  PLEASE tell me that we are fighting a disease that said that though our chances are small that we at least have SOMETHING to fight.  TELL me he needs an organ.  I have all of them, and he can have any one of them.  Just give me that chance, because I know that this particular disorder means one future.  After that positive result there would be no begging, no pleading, no last glimmer of hope.  There would only be pain and impossible decisions.  And that's exactly what happened.  How could a "yes" carry with it so much undeniable "no"?  It meant no more possibility.  It crushed my being in a single moment.  It wiped away any hope of any "prayer" being strong enough to save us.  This was it.  This was reality and living it for the next 12 hours was indescribable.

So, maybe this dream was yet another "gift."  Maybe it was showing me how it might have been had I been forced to know that each moment no longer represented the joy of a "first", but instead came with the sting of a "last."  Maybe someday my gifts won't come with such excruciating pain.  Maybe I'll be allowed to learn a lesson covered in goodness and light instead of being shrouded in unrelenting dread. Maybe my dream self and my now self will feel loved and protected enough to really sleep again.  Maybe. But for now, the pillow still catches the tears and stifles the screams...for both of us.

Wednesday, September 18, 2013

Forever Baby

Your friends are in school now.  Did you know that?  Three-year-old preschool has begun.  They wear their new backpacks and tennis shoes and spend a few hours learning their colors and shapes.  Some of them cling to their parents' sides and others race ahead, not wanting to wait another second to start their school day.  And I get to watch all of it.  I get a front row seat to what will never happen.

Sometimes I imagine the things I'd be doing during your school hours if you were still here with me.  I assume I would have had that same look of mixed emotion about letting you go that first day.  I'm sure I would have mentioned that you were growing up too fast.  But, now when I hear that from others, my immediate thought is that it beats the hell out of the alternative.  I don't think anyone actually wants that "forever baby" that they think they do.  I have one and it doesn't mean what they think it would mean.  It doesn't mean that you get to keep all of the wonderful parts of infancy and complete dependence.  Instead it's a never-ending list of "never get to" moments. I didn't get to see your little face looking back at me as you joined your friends for a day of playing and learning.  I didn't get to laugh at your silly choice of backpack.  I didn't ever utter the words, "he's growing up too fast" or "what will I do with two hours to myself?!"  Those things didn't happen, and they won't.  But why?...

Your "class" is made up of all of those babies we used to see waiting for siblings to get out of school.  They're still here.  They grew up.  Why didn't you?  I know some will throw out the name of a disease at this point, but that isn't a sufficient answer for me.  I need to know why I won't be getting a puzzle piece picture frame of a curly-haired little boy.  I want to know why my fingers won't stick together as I try to separate  3-year-old works of art.  I have to know why the moms around me get to do these things we all imagined were inevitable and I don't.  Why?  Didn't I want it too?  Didn't I complain about the same stupid things they did?

I still pause several times daily and marvel at the fact that you're not here.  A stoplight can cause a violent burst of fresh tears as I realize the silence of my empty car is now supposed to be the norm.  A momentary lapse of memory can leave me curled in the fetal position for an entire day when I accidentally turn your favorite show on, but then can't find you smiling up at me from your Elmo chair.  And seeing those babies run to their mommies after preschool will inevitably take me to my knees.

I don't know how we got here, you and I, to this place of seeing each other only through signs and dreams.  I suppose I was given what everyone else claims to wish for, right?  I have a "forever baby."  Well, I have a new wish and it doesn't involve you being frozen in time.  I know I'll never see an updated picture of you.  I'll never clean the glue off your fingers after a day of popsicle stick art.  We'll never sing "Wheels On The Bus" as I drive you home from school.  But, if you could, allow me to sleep long enough to dream of your beautiful three-year-old self.  Please give me at least the illusion of my curly-headed monster running through the school parking lot to be wrapped up in a hug. Let me feel your arms circle my neck and squeeze the pain away.  Let me get lost in one sweet moment of a promised future, a growing boy, and no sign of that coveted forever baby.