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Saturday, November 15, 2014

Phantom Picture

I had a dream about you a few nights ago.  I'm sure you know.  I've had sporadic dreams over the past couple of years.  Some were nice, some horrific, and some just confusing.  Always, I'm left craving more and am usually hating that I'm even capable of dreaming.  That was still true this time, but something was different.  You looked different.  I've had dreams where you appeared to have more capabilities than you'd had here.  You walk, talk, run.  But, even in those dreams you always look like my boy, my baby, your curly hair and blue eyes an unmistakable reminder.  This time however, you were not the baby I held.  You were a man.

 The next part is so vivid. I was sitting on the arm of a couch and looking over at you.  I had gotten a camera out of my purse and took a picture of all that was laid out before me. I'm so glad that I did, because that snapshot has created a sort of phantom memory.  A large window was directly behind you and the sun was shining in brilliantly.  The curly mop of my ornery baby boy had been replaced by a thick wave of dark brown hair. I could tell you were tall, like Daddy, even though you were seated at the time.  You were sitting at a piano,  your body turned slightly toward me.  Your smile was so big as you played the lively, upbeat song and called to them.  Them. Your children.  I barely saw them as they danced, giggled and twirled just out of the frame of my picture.  I remember the dress of one flying through the air.  They'd been waiting all day for Daddy to get home from work, so they could show Grandma how they danced while he played.  Work.  You had been working.  You wore long pants and a lightly striped button down shirt.  Your tie had been removed and thrown over the back of a chair.  The two top buttons of your shirt were now open.  Work was over, and you were playing and relaxing with your children.

When I woke up, most of my dream was gone.  I can't recall many of the things that happened, but the picture that my dream self captured is still so crisp and clear in my mind.  I'm so glad she took that picture.  I've been looking at my last pictures of  you today.  I've even watched a few videos, because although it is so very painful to do so, I craved another look so much I was having trouble breathing.  Sometimes when I watch them or look at the pictures, I'm so confused about the fact that they're my last ones.  Why didn't someone tell me that?  I can't even imagine how many I'd have now if I'd known that I wouldn't have the chance to take any more.  It's so foreign to me that no matter how many times I look through them, I'll never see a new one.  In fact, sometimes I expect to be surprised by one I haven't seen.  It would be one of your current 4 year old self.  Did you grow?  Is your hair longer?  Would I be buying bigger shoes?  I don't know, because it's still not here.  That new picture just doesn't exist.

So, I'm keeping this phantom picture locked away in my mind.  And I write this description so that I can recall it with as much detail in 20 years when the craving for my son, the man, is just too much to bear.  I'll be able to see him again, sitting at his piano and laughing as his children dance through a sunlit living room...


Tuesday, November 11, 2014

November

Today is a significant date for my family.  But for me, dates hold less meaning than they once did.  I'm aware of important/painful dates, but because every day and every movement is so difficult, they affect me no more than last Thursday or next Tuesday.  Dates are important to my husband.  They renew his grief.  He feels the pain deeply on days of significance and that's how he deals.  That's how he remembers.  Neither of us is right or wrong.  We just process differently.

So, what happened two years ago today?  Today is the day we actually lost our son.  It was the last time we truly saw his eyes.  The last time I heard him say, "Mama."  The last time he ate ice cream.  He had been doing relatively well in the PICU, and was sitting up and waving at the nurses as they walked by his room.  He was a shameless flirt, and they encouraged it.  The new night doctor asked if we felt comfortable moving back to the neurology floor, which was typically our home base.  I looked over at him and he smiled at me, as he played with a toy.  He looked like he was doing slightly better, I guess.  He'd been playing.  He'd been eating.  And he'd certainly been flirting.  But, something inside me said no.  The truth is, I'd been hearing this guiding voice within myself for much of his journey,  but hadn't fully recognized it at this point.  Still, I trusted the feeling and asked if we could stay just....one...more...night...

Forty-five minutes later, it happened.  Easton had been laughing at a card someone had sent him.  When you opened it up, it played a song with silly high-pitched voices.  Jeff and I were cracking up at how funny he found that card.  Suddenly, he seemed to shift his eyes to the right and kept them there.  We thought he was playing.  No violent movements, not even a tremor.  After a few seconds, his eyes returned to their original position and he laughed at the card again.  Jeff and I exchanged a confused, but not overly alarmed look, and continued playing with him.  Then, a minute later...the same "game."  His eyes shifted and wouldn't come back to center for any reason.  We knew.  It was happening again.  This was a seizure.  It was new and it was different, but we didn't need any medical personnel to tell us what was happening.  We saw it, we heard the silence of it.  And most horrifically, we felt it.  We felt that ball of fear in the pit of our stomachs jump to our throats.  It twisted and turned and was tormenting us once again.  We tried everything to break that trance.  Jeff grabbed the card we'd been playing with and begged him to look at it.  "Here Buddy, look at the card.  Come on Easton.  You like this card.  You can do it.  Hear the song?  It's right here.  See?"  Nothing.  No matter how hard we tried, the seizure got to keep our boy until it decided it was done with him for a moment.  Then they just kept coming faster and faster....

I remember each time Jeff would grab the card and ask him to look.  I can still hear his voice go from soothing urgency and pleading to all out desperation and screaming..."LOOK AT THE BOOK, EASTON!!! COME BACK!!! SEE DADDY!?!?!?  I'M RIGHT HERE!!!  PLEASE!!!"  I had been screaming too, but I can recall that when my husband started yelling, I stopped in my tracks.  I said nothing.  I responded to no one.  I climbed into that bed and I picked my baby up and wrapped my arms all the way around him.  I let silent tears fall and pressed my lips to the top of his head.  I spoke only to him when I whispered, "It's ok, Baby.  I know it's scary.  I know it hurts.  I'm right here.  And Easton?  I love you.  I love you.  I love you.  I love you..."  They came in swarms.  White coats everywhere.  Orders shouted. Explanations given.  As if we'd never been here before.  Oh, I'd been here.  And I was smarter this time.  I was thinking about and honoring what no one would say out loud.  This is your last.  It's your last real sniff of his hair.  It's your last full body snuggle with the boy you know.  They added medications, added more IVs, and finally came at us with intubation equipment.  I held that child until they moved me from the bed.  I was taking every last second.  Before I knew it, intubation was complete.  Life support. Coma. Gone.

I began to hear buzzing around my head.  I eventually realized that its source was the voices of the practitioners offering explanations of what would happen next.  "We'll give him this medication to stabilize him, and then we can form a plan from there.   We think this first dose should help significantly, and then we can work on what to do next."  No it wouldn't.  It wouldn't work and some very quiet, still part of me knew that.  I stared at the mouths connected to the people who were trying to offer solace.  They were moving.  I knew that.  Words were coming out.  I could see and even understand.  But, it wasn't real.  Nothing was real after that moment, and I knew it.  He was gone.  My baby was gone. We were there for another month, chasing numbers and seeing progress and decline.  His physical body left on December 8, 2012, but we lost him long before that.


Why do I share these things?  Why am I so public with such painful, gut-wrenching stories?  Because GODDAMMIT they're true.  They're real.  They happen.  Every day, in fact.  I could tell you all kinds of stories about how moments with my son were all love and sunshine, puppies and unicorns, but that wouldn't be true.  We had the beautiful and we had the horrific.  I acknowledge both, and by sharing both I believe I bring more truth and light to the beautiful moments.  And we had those, often.  If you ever had the privilege of simply looking into my boy's eyes, you know this.

November is epilepsy awareness month.  Epilepsy is a disorder that affects 1 in 26 people.  It does not discriminate.  It doesn't care how tall you are, how "good" you are, or even how beautiful your baby is.  It's a disorder that is wildly misunderstood.  It has no outside markings.  That's a blessing and a curse.  Because you can't see their illness on the outside, more is expected of them.  People with epilepsy are living in your world every day, and they're trying desperately to not only function but to enjoy life in a body in which their brain betrays them, sometimes hourly.  Not all seizures are noticeable.  Can you imagine being an intelligent business woman with goals and plans like everyone else, but wondering if you'll be able to get through a coherent sentence that day?  Perhaps you'll have an important meeting with your boss, and you'll stop mid-sentence.  Not because you are ill-prepared, or indifferent about the significance of that meeting, but because your brain says it's epilepsy's turn to have you.  So, instead of being rewarded for the work you've put in to today, you'll stop and stare off as if you have no care in the world, and all the while your brain is raging a war.  Or maybe you're just a kid at school and you want to do something as simple as play at recess with your friends.  Can you climb the jungle gym?  Probably not, because what if epilepsy decides today is his day and your hands stop working and lose their grip?  So you stay on the ground, while classmates laugh at your inability to join in something so simple.

I'm not asking anyone to join a cause.  I'm not asking for anyone to champion something simply because I happen to be passionate about it.  I'm not asking for money.  I'm simply telling you what I've seen and what I know, in hopes of inspiring some compassion.  No, you cannot see that they are sick, but they are  fighting a very real battle every day.  Yes, they may receive funding to help with medical expenses, but one cannot possibly understand the cost of therapies, medications, doctors, and hospitalizations until they've experienced it themselves.  And yes their caregivers can be difficult at times, but she's exhausted, she's out of ideas, and she's terrified beyond the comprehension of her soul.  Compassion.  Love.  Share these things this month of November, and remember a little curly-haired boy who said "Mama" for the last time on this very day, two years ago.

Sunday, November 9, 2014

Today My Sister Comes

Today.  Today my sister comes.  I get to spend the day with my family.  Before, when we had days like these, I enjoyed it thoroughly, but missed its significance.  My sister and I understand each other on nearly every level.  And although Dad would say that we talk incessantly, we often communicate without the need for words.  This remains true for the two of us, despite the pain we've recently endured.  We're still close, though perhaps not in the same way.  We still resonate with the feelings the other is experiencing, whether or not we can fully experience them ourselves.  And we still enjoy being together, just the two of us.  But it's not just the two of us anymore, and it probably never will be again.  Now, grief comes along and butts in on our visits, and because it is a life all its own, it is difficult to ignore.

Today.  Today my sister comes.  She'll bring her husband and her children.  The kids will likely come bounding through the door, excited to see us and receive a hug from each of their cousins.  But the match up will be uneven.  It shouldn't be, but it is.  My sister will come through the door with four children.  And they will be received by three of mine.  This day will be full of reminders that he is "always all around us."  That fact will be both comforting and evident, while also being painful and wildly untrue.  He may be there in the excited conversation of our children.  He may show himself by way of flashing a few recognizable symbols our way.  But, I have to ask, when those four children run through the door to greet mine, will one of them wait their turn for a hug?  Or will each one have someone to cling to?  I can answer that, because I've watched this happen several times.  The answer is, he won't be there.  Not in the way I will desperately need him to be.

Today.  Today my sister comes.  We'll watch my children play several different sports today and their cousins will be there to cheer for them.  They'll see recognizable faces in the stands and do their best to impress, while the adults know that most of the onlookers are more interested in the contents of Grandma's purse and the game time popcorn they'll receive.  I'll smile and be happy.  I'll cry and be slayed.   I'll enjoy watching my healthy, happy children play the games that they love and I'll mourn the one who never took a step on his own.

Today.  Today my sister comes.  She'll be coming from her new home that is an hour away from us.  I hate her for leaving us when we'd already lost so much, and I love her beyond measure for having the foresight to change my scenery.  Visiting her at her new house is a treat for my children, but it angers them that we have to drive "so far."  I walk in and breathe a sigh of relief that I'm entering a house with no haunting memories.  I silently thank her for that gift, while my heart breaks at the thought of the motivation behind it.

Today.  Today my sister comes.  She'll bring with her, my nephew.  He brings the count to four.  He is the one who tipped the scales toward that foreign ratio.  I love him and he hurts me.  I fear touching him and I can't wait to snuggle up close and smell his baby sweetness.  It isn't because he's a boy.  That wouldn't have mattered either way.  It's because he is the only one who wasn't here when Easton was.  He's the new family member.  The "after" family member.  He's the reminder.  The replacement.  But of course he doesn't feel like a replacement.  To me, his physical presence feels somehow lop-sided.  He'll never know my son.  No matter how many times we tell him, and no matter how much we wish for it to be true, he'll never have his own stories of life with Easton.  He'll come into my mom's house and play with the toys my son just put down.  I swear it was just a minute ago.  Watching him will cut at my heart and fill me with a peace that overflows, all at the same time.  He doesn't move the same as my son.  For every limitation that Easton had, Clark is a step ahead in his motor development.  That is beautiful and hurtful.  It makes me seethe with anger and sigh with relief and gratitude.  Today I will hug him and hold him.  I will chase him and pull him onto my lap.  I will probably cry into his hair, as I often do.  And though he never knew my boy, he will look at me with that strange calm that he often does.  That look that makes me know he is wise beyond his years, and I will wonder once again, if he can see the playmate that I so desperately wanted him to have.

Today.  Today my sister comes.  I'm excited and fearful.  I'm energized and immobilized.  I will get to spend time with the person who knows more intricate parts of me than nearly anyone else in the world.  I'll be there with her and her four children. I'll wonder why that is, at times.  I'll wonder why it's ok for her to have four, but not acceptable for me.  I'll hate her for that, and be grateful that it's true.  She'll know that.   She'll understand and she'll silently ask the same question.  We'll laugh and tease our dad.  We'll make jokes with Mom.  I'll enjoy the ease with which we can communicate, and I'll endure each terribly difficult step it takes for me to be present in the given moment.  And I'll look up and ask my boy for strength, and if he has some time today, to please let me know he sees us.

Today.  Today my sister comes...

Friday, November 7, 2014

Good or Bad

I'm learning, through my process of grief, that we as a society tend categorize our experiences as "good" or "bad."  I think by doing this, we are failing to acknowledge the complexity and intricacy of the human experience.  Occasionally, I meet with some women whose journeys are similar to mine, and we speak within that same context.  "I was doing really well until...", "I was really bad for a long time...", etc.  We seem to gravitate toward the idea that getting up and moving, putting on a smile, and pretending to enjoy gatherings is "doing well", and that being isolated, breaking down, and showing our hurt means that we're "doing poorly."

I think this very concept influences a person's grief path a great deal.  I've met those who feel, somewhere deep within them, that in order to handle their grief, they must appear to always be doing well. This type of grief is more acceptable to society, and it isn't difficult for me to see why.   I happen to be in another group.  I'm in the one who feels as though expressing the depths of my pain is the only way to experience my grief "well".  I fear that losing that image of pain and suffering is somehow betraying the life that I've lost.  Now, both groups "know" on some level that neither mantra is true.  Both statements are just too generalized, but that knowledge exists right along side the fact that this is JUST how we're going to do it. Neither of these approaches is wrong, nor one more helpful than the other.  They just simply are. The funny thing is that society tends to want the ones who are doing "well" to give themselves permission to grieve (as if they aren't), and those who are doing "poorly" to move past their grief (as if this is possible).  And that's ok as long as the griever knows that that is a societal perception and not reality. The truth is that grief is a rolling wave of emotions.  It has no rhythm or cadence.  It has peaks and valleys, but you can't see which is before you.  Even the level ground is unpredictable.  I think it would be beneficial to simply recognize our current state and give ourselves compassion for the myriad of emotions that make up that one moment. (I'm glad my therapist doesn't read my blog because she'd have every right to bang her head against the wall at this point).

This is why it is difficult to say what is and is not acceptable from outside sources when it comes to a grieving person.  I've read several great articles that list the dos and don'ts of dealing with someone experiencing grief.  Reading things such as these can be so comforting at times because it makes you feel less lonely, and any sort of life raft that can pull you up for even a second from that type of isolation, is refreshing.  However, obviously not all points are always true for me.  Some days I'm very capable of functioning and making it appear as though I'm enjoying the moments that I'm living. And I'll let you in on an even bigger secret...sometimes I actually AM enjoying them.  In these moments I can hear any number of things related to grief and recognize them for what they are, words from another person, and simply acknowledge and let go.  Other times, my grief is so oppressive that any suggestion made in any way burns right through my chest and leaves me gasping for air.  In fact, both situations can feature the EXACT SAME WORDS SPOKEN IN THE EXACT SAME CONTEXT, and the reaction is solely dependent on that moment.  Again, it isn't wrong or right, it just is.  So many things have been said to me over the past two years that have had every intention of lifting my spirits, and to the obvious disappointment of the speaker, have had the profoundly opposite effect.  Likewise, I've experienced some harsh words that did little more than glance off of an already open wound.

I have no advice here.  It's simply an observation.  And it's directed solely at my own experience, because obviously that's the only one I've had.  So, maybe I'm just talking to myself here.  In that case, I would like to say, "Self, I know that you're hurting beyond anything you'd deemed possible.  I know that there are times when you smile and laugh that you feel as though you are betraying your son's life.  I know that sometimes you thoroughly enjoy the experience of a moment.  I know that many times you have wished to never have to experience another one, even the nice ones.  I know that pain and love are synonymous for you now.  I know that you've seen awe-inspiring beauty and the depths of hell, all rolled into one confusing package.  I'm offering no solution.  I'm offering no judgement.  I'm simply saying that 'I know.' And 'I see.'  I know that you're never doing well or poorly.  You simply are.  Do with that what you will, Self.  I believe we have much more to learn."