Follow by Email

Thursday, December 11, 2014

Busy

I've kept busy.  Have you seen me?  I'm sure you have.  It seems I have a new project every day.  I don't understand how they're getting done, but they are.  Only part of me participates, and it's the unconscious part.  The real me floats somewhere above the noise and watches as actual "living" takes place.  I often think, "How is she doing that?  WHY is she doing that?"  It's like watching a play, and in this particular show the character is awfully "busy."

I tried to buy you a Christmas gift.  In years past it was difficult but sort of a welcome salve on an open wound.  This year is different.  I found what I thought was the perfect gift, but as I reached for it, something inside me broke.  The busy woman fell silent and the wounded woman stepped forward.  What if I only thought this was the perfect gift?  I realized in that moment that I was buying a present for my two year old.  But, what if my 4 year old had moved on from cows and Mickey Mouse?  Shouldn't I know that?  Shouldn't I at least get to see your Christmas list?  Or maybe you are still two.  Maybe you've remained my forever baby.  Maybe I'm supposed to buy for both?  I should get gifts that my clumsy toddler would have tossed around, as well as presents that my four year old would shove in his backpack to show his preschool friends. I don't know how a mother is supposed to go from knowing every breath to the uncertainty of something as simple as a shoe size.

I thought about that again when I got home and collapsed on the floor.  I raced into the bathroom to see if your Sesame Street toothbrush was still hanging where I'd left it.  It was there.  The little cow holder still held the dust that's collected there from lack of use.  I don't know what I expected to find.  Maybe I thought if it had fallen on its own that it meant that you'd moved on from Elmo and "moos."  Maybe I thought that seeing it there in its forever home would solidify that my baby is frozen in time.  His hair still the same length, the creases in his pudgy hands still just as I'd seen them on that last day when I traced them with my finger.  Or maybe, just maybe I actually expected to see you there, sitting in your spot on the sink and splashing in the water.   Sometimes I absolutely believe that will happen.  The rational adult is silenced and the hopeful child looks with anticipation and longing for someone who will never show.  I don't know how long that lasts, or how often I'll have to feel the sting of reality, but as much as that moment cuts me, I thank that part of me that forgets for the briefest moment that the whole of my being exists in a veritable Hell on earth.

As I crawl through the next month, I hope you know that the moments that look like living do not mean that I've forgotten.  I can't forget.  The pain is part of my existence.  It's stained on my soul.  I will buy the cows.  I will buy the show and tell toys.  They will go to sick children whose parents still get to fight for them.  Next year, perhaps I'll buy something for a Kindergartner.  And a few years down the road, maybe you'll get your first tie for the man that you should have been.  But I'll always buy the cow.  I'll always make sure to save a "moo" for the baby I held one last time.  I will never know for sure which gift fits, and that's a pain I'll carry for the rest of my life, but at least they'll be under the tree.  At least they'll be wrapped and tagged just as are the gifts for your siblings.  They'll be my reminder that it's ok to slow down and notice.  It's ok to stop and cry for the boy who can't tell me which gift he prefers.  They'll remind me that while "busy" is happening, "broken" is always right around the corner waiting to be heard.

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."

Thursday, October 30, 2014

Dear Brittany

Dear Brittany,

I, like most of us who make up the cyber world, have never met you but have nonetheless been invited into a very sacred part of your life journey.  I've read parts of your story several times.  I sometimes watch your videos on repeat, just to catch a glimpse of the haunting wisdom in your eyes.  Most of us have seen the countless articles from supporters and critics alike.  Everyone seems to have their own ideas about which decisions would be the best ones for you and your life.

I've read that some believe you to be selfish in choosing to end your life prematurely, and others applaud your ability to do so.  I'm not here to champion either side.  I'm simply writing to say...Thank You.  Thank you for sharing such an intimate moment in your life.  Thank you for giving a voice to the idea that "life at all costs" isn't as simple as it seems.  And I thank you for unknowingly giving me permission to let go of the guilt I carry for choosing a similar path for my 2 year old son.

Although we didn't know what we were fighting for most of his life, eighteen hours before he died we were given a name for his debilitating disease.  Once that positive result passed through the lips of the neurologist who sat next to me on my makeshift "parent bed" in my son's ICU room, I knew what it meant.  It meant only one thing.  He was terminal.  In fact, he'd technically been terminal since birth.  The gravity of that moment will always weigh heavily on my broken heart.  The deafening silence that surrounded me as realization began to form will forever haunt my thoughts. I'd had a decision to make, and I made it.  Yes, he was going to die, but I chose it.  I had to say the words, "Do Not Resuscitate."  Me.  His mother.  I had to.  How does a mother choose this?  How do you choose the time that your baby dies?  You just do.  And I did.

In one of your videos, you mentioned that if you got to choose what happened after your death you would choose for your mother to be ok.  She won't be, of course, but I can tell you that by choosing this yourself, you're giving her the only gift you've got left.  My son couldn't tell me that he was done fighting.  I fear closing my eyes at night because I'm immediately transported back to that moment, to that awful day that I gave the go ahead to disconnect his life support.  Was it too soon?  Did he have more fight left?  What if I'd made a mistake?  So you see, hearing you say that you would choose to leave on your own terms, before life became unbearable is salve on a wound that I never thought would heal.  Your mother will be spared those last few days of seeing her child suffer as a shell of her former self.  She'll be spared that question of whether or not the time has come.  Some claim that you are selfish for your choice to pass away on your own terms, but I can't think of a more selfless act.  You are leaving them with happy memories of you, of choices that you made yourself, and with the peace of mind that you've fulfilled your wishes.

The loss of my son was soul-shredding.  I spend every breath trying to find reasons to pick up the pieces and put them back together.  Some pieces, I'd assumed, would be gone forever.  You've proven me wrong by sharing your story and lifting a giant burden from my shoulders.  The ache in my chest is lighter because of your honesty.  I thank you for that immeasurable gift.  My wish for you is for peace in every decision you make, and enough love to carry you through the process.

Monday, October 6, 2014

"Fall"

It used to mean warm sweaters and bonfires.  It used to mean watching leaves change and smiling at the inevitable giddiness of your kids as holidays approach.  It used be "complaining" about the end of summer, while being blissfully oblivious to the fact that you're doing that while curling on the couch with hot chocolate and watching football with your family on a lazy Sunday. It doesn't mean any of that anymore.  All of that was stolen.

It used to be discussing holiday traditions with other school parents.  What does your family do for Halloween?  That answer used to be so simple.  "Oh, not much I guess.  We go to my sister's house and my mom makes every kind of soup imaginable.  The kids trick or treat around my old hometown.  Of course, there is always that huge gamble of whether or not the 4 costumes I picked out will be warm enough!  Fingers crossed!"  I didn't think it was much at the time, because I didn't know it was everything.  And not just the act, or the gathering, but the desire to DO those things was ever-present yet always unnoticed.

What does the season of fall mean now?  It means haunting nightmares.  It means children talking about costumes, but only 3 of them have decided what they'll be this year.  There used to be four.  I'm programmed for 4.  I don't know how to do three.  And Halloween means working particularly hard to put on a fake smile for my children as they run from door to door.  No part of me wants anything to do with Halloween.  But, even as I dread that day, I know that the burning pain I will experience then will be a papercut compared to the days to come.

Soon I'll have to listen to excited talk about Thanksgiving and Christmas.  I'll hear songs that used to bring immediate happiness and anticipation, and now only bring anger and hurt.  I used to love Christmas.  Who doesn't when they've never been burned?  It can be such a magical time of giving and love for others.  But it also has the power to bring with it, the pain of an entire year.  Now, Christmas means going through the motions of "family traditions" that mean nothing to me.  How could they?  My family isn't here. And while that statement inevitably brings up the "you have three children and a husband here" sentiment, it doesn't change the fact that what I say is true.

Having these feelings, and expressing them openly does not mean that I'm not grateful for the people in my life. I take less for granted than I ever would have, had I not met and loved my son.  But, I've heard enough of the stories of putting on a brave face and shining in the face of tragedy.  The truth is that sometimes "shining" means simply getting out of bed on these days.  It means sitting in a room of people who are smiling and laughing while you hide behind a face of stone.  For me, any expectation that I would "suck it up" to enjoy these days is ludicrous.  It's the same as walking through a graveyard and asking its occupants to get up and participate.  I am often confused by the idea that anyone could think that I'm able to function beyond basic movement.  The truth is, I cannot walk and yet, my legs take me from one side of the room to the other.  I cannot breathe, yet my chest rises and falls without fail.  None of these functions are voluntary at this point.  They just happen.  And that's how my "holidays" will pass.  They will just happen.

I assume that fall will take on new meanings for myself and my family as the years go on, but I also know for sure that they'll always bring with them a pain that I'll never adequately describe.  I won't see what silly costume he picks out, or work tirelessly to come up with a special candy for him to eat.  I won't have 6 full chairs around my Thanksgiving table, and I'll never see his eyes light up when it's time to open the presents.  He won't be here in the way that I want him to, and I know that.  I will likely never know the "fear" of having to work through the holidays.  I'll never worry that I could possibly miss out on all the festivities that this time of year inevitably brings.  No, that won't be me.  I won't be afraid to miss it.  My fear lies in showing up.

Saturday, August 23, 2014

Why Ice?

I realize that this is a widely debated topic and will certainly never come to a place of resolution in which 100% of the population is on board.  However, I also know that many articles are circulating that give one side of the debate, and I would like to share another.  I have learned, in my 32 years, that unless you have actually experienced something yourself, you cannot say with certainty how you would approach any situation.  Having said that, I would like to discuss the topic of the ALS ice bucket challenge, as I see it based on my own experiences.

Facebook has been inundated with videos of people of all ages pouring buckets of ice water over their heads, making monetary donations, and most importantly, raising awareness for a devastating illness.  The response has been overwhelming.  Even the nay-sayers, who criticize performing the challenge are raising more awareness by complaining about what's being done.  All of this attention only further educates the public about something that was widely misunderstood only a few short weeks ago.  However, one particular article that has repeatedly shown up in my own newsfeed, disturbs me greatly.  It discusses the need to decline the challenge/donation because of the use of embryonic stem cell research.

I'm not ignorant to the fact that the reason for this debate is rooted in its seemingly opposing position with religious practices.  This is why the discussion will never be settled.  There will always be opposing views on when a human becomes a human, or when it inherits a soul, etc.  I'm not here to change anyone's mind.  I'm not naive enough to think that I'm even capable of doing so.  I simply wish to give another side of the story.

As previously stated, it seems only logical that one's own personal experiences would shape their opinions on any number of topics.  Someone could assume that they would fall into a certain category and then after living through one of life's many trials, may decide that the original idea no longer applies.  So, it makes sense to me that anyone who has not experienced a debilitating illness within their family, would draw the conclusion that something like embryonic stem cell research is not only unnecessary, but wrong.  However, ALS is not the only genetic disease that devastates entire families for generations. There is a whole world of people living with, coping with, and dying from diseases that most have never considered.

Most of the disabilities and disorders that we see frequently in the media are ones that have the potential for a positive outcome.  Many people endure countless clinic visits, medications, and therapies throughout their lives to combat one form of disorder or another.  But so many of them do so in the hopes of PROGRESSING.  I challenge you to consider what you might do in a case in which your loved one was diagnosed with something that not only couldn't be cured, but would actually mean that you got a front row seat to watching a slow decline.  Some of these include Alpers-Huttenlocher syndrome, Tay Sachs, Dravet Syndrome, LGS, and Rasmussens.  And the reason I can name these is because I have experienced one of them and feared the others on my road to diagnosis.

Tay-Sachs disease, for example, is often diagnosed in babies after having completely normal pregnancies and deliveries.  One mother describes going to an office to have her son's eyes checked, thinking he'd need glasses, and sitting across from a doctor who informed her that her son actually had this disease.  Can you imagine the shock?  You're sitting there, contemplating the idea of your poor baby having to wear glasses at  such a young age, how much they'll cost, etc., only to find out that he's actually dying. Dravet syndrome involves seizures that progressively  get worse, until eventually the child loses nearly all function and ultimately dies. Rasmussen's is also a seizure disorder in which the eventual treatment, used to buy just a little more time before inevitable death, is to remove half of the person's brain.  Diseases such as these are just a death sentence.  No medication.  No treatment.  No trials.  You're just done.  And not quickly.  No.  You watch as the body of the child you created slowly takes your baby away, piece by piece.  It's no longer the name of a disease.  That doesn't define your child.  What defines them is that silly way they scrunch their nose when they know they're being ornery.  What defines them is that no matter how many times you've read Mr. Brown Can Moo, they'll beg you to do it again.  What defines them is the sweet smell of their baby breath on your cheek as you rock them to sleep.

I'm not being melodramatic.  This is real. This happens.  Every day.  So, am I in favor of a type of research that could save these helpless children/parents/families from having to watch this slow decline?  Not just yes, but Hell yes.  I understand that it may be seen as trading a life for a life.  I don't happen to believe that, but honestly, that isn't even relevant at this point.  These types of disorders and diseases happen, at times, without warning.  I had four children.  My first three have absolutely no signs of any kind of illness, and certainly not anything as devastating as these.  Where was my red flag?  I did what many decide to do.  I had one more child.  Maybe you have 2, or 3, or 4 right now.  Maybe they're healthy.  If so, it makes sense that you would assume that any subsequent children would also have the same fate.  And it even makes sense that you might think that God had something to do with that.  But, if we're giving Him/Her/It credit for anything, I choose to thank God/Allah/Mother Natures/And my lucky stars, that there are educated people out there willing to perform life-changing research.

So, why ice? Why ALS?  Because my hands can grip things.  Because my arms can reach above my head.  Because after I've been doused, I can run away on legs that haven't betrayed me.  And because I can type these words for those who can't.

Saturday, July 26, 2014

Absorb It

If you've never read a Carolyn Hax column, you're missing out.  She's an incredible advice columnist.  She calls people on their shit, but in a loving and compassionate way. (Yes, I realize that I could learn some things from her.  I read the columns...we'll see how it goes.) Anyway, a friend of mine pointed out a particular piece the other day in which a woman had written in because a friend of hers had lost a child.  The writer was "rubbed the wrong way" because her grieving friend made a list of all of the things that weren't helpful to hear when losing a child.  She went on to ask Carolyn the following question, "Where is the border between having on blinders due to grief and not realizing that people are just trying their best vs unreasonable expectations for others to say exactly what you want to hear?"  

The response was absolutely perfect.  Carolyn replied, "It has been well established in this forum and others that well-meaning words at times of grief can easily be, or just be perceived as, insensitive. And, what is the perfect thing to say to one grieving person is a slap in the face to another.
Because these friends just lost a child, I think the best way to approach it is with a free pass. They're devastated. Their pain is spilling over the loss itself and onto everything related to the loss. You, as the not- (or less-) devastated party, are the one who is able to absorb this, so just absorb it. "

AAAHHH!!! ABSORB IT!  I love it.  Exactly.  Absorb it.  Meaning, don't look for a hidden agenda.  Don't look for the ways in which the grieving person is trying to hurt you.  I guarantee you that their responses to most things have absolutely nothing to do with you.  They aren't trying to come up with ways to hurt you, or to make you feel less helpful.  They aren't even thinking about you.  Selfish?  Maybe.  Necessary for survival?  Yes.  A grieving person is only capable of handling their own feelings, and a majority of the time they aren't any good at that either.  When your biggest concern each day is trying to remember reasons to keep breathing, no one else's feelings are on your radar. 

I have been told that although I lost a child I don't have a free pass.  While that may be true for some, I will tell you that those who allow that "free pass" will be the ones the grieving person is likely to gravitate toward.  That's not to say that either approach to dealing with a grieving individual is wrong. In fact, if you are someone who can't "absorb it", you're better off staying away...at least for a little while.  That might be a few weeks, or 10+ years.  Time isn't the same for a grieving person.  What seems like an acceptable time for grief, pain, anger to you will not be the same for that person.  We have no timeline, and this is why...we don't just lose our children on the day that they die.  We lose them a thousand times every day, all day long.

In my own personal experience, my recent losses include an awful conversation with one of my daughters about how she can't remember her brother and the fact that this makes her the worst sister in the world.  It involves a different balance in my physical body because I no longer carry the weight of a toddler on my left hip for hours at a time.  And you know how people accidentally call someone by the wrong name, specifically if there are several children present?  No one makes that mistake anymore.  He's been gone for "so long" now, that his name is not on our tongues in normal conversation.  We wouldn't make the mistake of saying, "Easton is in the bedroom" when talking about one of his siblings or cousins. While these slips of the tongue were difficult to stomach in the past, the absence of them is searingly painful. These are my losses today.  They'll be different tomorrow.  So no, I'm not thinking about my responses to things that are said to me.  I'm well aware of the fact that most people are only trying to be helpful.  I know that no one can say the right thing, because this situation has no right answer.  But also know that I'm not  always going to respond in a way that's acceptable to you.  To be honest, most of the time I miss half the things that are said to me because I'm not listening. 

Luckily, I have several people in my life who absorb more than any person should ever have to. They are my sponges, and I'm grateful for those moments when they have taken the brunt  of every ounce of my "free pass", and chosen to stay.  I'm trying to breathe again.  I'm trying to create a life in which I want to live, one that doesn't involve the physical presence of my son.  I will likely be less social.  I will probably spend a majority of my time angry at the world.  And I will even be blatantly rude, at times.  But I am trying.  I always recognize the effort on the part of others to comfort me, even if my response doesn't convey that message.  I cannot promise to be better.  I can't tell you that what you say on Monday will be received the same way that it is on Thursday.  I can't even tell you WHAT to say. And I'm not saying that it's fair, or that I have that right.  All I can tell you is that the only way to "handle" any response given by a grieving heart is to be a sponge.  Absorb it. 

Thursday, June 19, 2014

Touch The Glass

"Don't get dirty!"

"Don't hit your brother!"

"That doesn't match.  You need to change your clothes."

"Don't touch the glass with your dirty hands!"

I know I've talked about this particular issue more times than I can count.  But it's just THAT consuming.  I cannot describe what it feels like to have your identity stolen from you, one piece at a time.  Grief and major loss changes you at your very core.  Of course  some small parts of you remain intact, but so many things about your personality are fundamentally different. It changes the way you view life, of course.  It changes the way you view death.  It even changes the words that come out of your mouth.  Not one of the above sentences are currently part of my parenting repertoire.  But they were at one time, right?  I remember being concerned about those things.  That old part of me must have said them, because I hear them now from others and I think, "That sounds so familiar, and yet unbelievably  foreign."

I'm inundated with a barrage of conflicting emotions all day long, every day.  But there are certain moments that are so supercharged that I can't even begin to do it justice with words.  I liken it to a snow globe. Each flake is a different emotion, and when shaken, the calm of the globe is disrupted within an instant and the emotions swirl around in a thousand different directions, never following the path you think they will.  I'm doing a terrible job of explaining this, but it's probably the most difficult part to try and describe.  At any given moment, I can be extremely angry, happy, sad, afraid, and grateful.  So many things about my new perspective are gifts, but not all of them. Some of them just make it hard to live in the world.

Everyone has a "carpe diem" attitude for short periods of time.  Something major happens on a global scale and the whole world can be on high alert, and filled with a new sense of appreciation for the small things in life...for a moment.  But, inevitably, we go back to normal.   Life takes on that predictable ebb and flow and we sink back into our daily grind.  I've found that this isn't the case with grief.  I can't get back there.  Sometimes I'm begging to be back there.  I'm begging to fit into the world around me. I can't "turn off" the part of me that says, "none of this matters." It's like the phrase, "don't sweat the small stuff."  I'm never sweating, because for me, nearly every part of life is the small stuff.  I don't get worked up about much anymore, and of course that can be very freeing, but it also makes it difficult to be around me.  How annoying is it to constantly be reminded that your everyday worries are essentially nothing?  I can't imagine what it must be like for those friends who've stuck around long enough to find out just how much fun I am at the moment.  It's difficult for ME, and I'm the one doing it, so it must be hell for them sometimes.

I no longer care if my children get dirty.  It just means they're capable of doing so.  They can run through mud, or slide into home.  I'm grateful for that simple gift they've been given, and I don't assume that it will always be something they're capable of doing.  And the command, "Don't hit your brother!" doesn't apply here.  I'm amazed at what my kids have taught me about letting them simply experience things without my input.  I remember when my youngest son used to hit my older son in the nose, repeatedly.  Easton was a toddler, and at one time I would have explained to him that hitting wasn't nice, and that he should stop what he was doing. But, he'd already taught me to step back and let my kids fight some of their own battles.  If Logan had wanted him to stop, he could have remedied the situation all on his own.  So, I just sat back and watched them.  I offered no suggestions, and today I'm incredibly grateful for the lesson they taught in that moment.  That "game" in which Logan was absolutely getting hurt, is one of his favorite memories of his brother.

"Don't touch the glass with your dirty hands!"  We say this one often, as children are always walking around touching things with their grimy little paws.  Yet again, my kids taught me to let that one go.  Ironically, it was after his death that Easton imparted this wisdom.  I remember when it was just the two of us at home, and I would try desperately to get a workout in, around his highly demanding schedule.  Due to the fact that he had so many seizures, he could never be left alone.  Consequently, he had to be right next to me during every attempted workout.  He found it quite hilarious that I was jumping with the lady on the screen, but even he, with his limited mobility, would tire of just watching and crawled over to the TV.  That, in and of itself, was honestly a miracle.  Then he would pull himself to his knees and touch every part of the television that he could reach.  When I "scolded" him for being in my way, he'd look back at me with an ornery grin and continue to smear little hand prints all over the screen.

As you can probably imagine, the months ( and even years) following your child's death, involve very little cleaning.  In fact, it involves little more than breathing.  So, several months after the most horrific day of my life, I pulled myself from the fetal position and began attempting to clean up the basement.  When I got to the television, I stopped dead in my tracks.  There, on the screen, were perfectly preserved, ornery baby hand prints.  In that moment, I could see his effort, his grin, and his eventual reach in my direction.  Of course it dropped me to my knees, but it also gave me a brief moment of connection with the boy  I hadn't held in entirely too long.  See?   A million emotions at once.  And this example is the best I can give as to the constant push and pull in different directions.  It helps me describe what it's like to never again be concerned about small things like smudges on glass.  In fact, it's not just that I don't "worry" about such things, I actually beg them...please, my babies...touch the glass.

Sunday, June 15, 2014

Still Standing?

Happy Father's Day?  Happy Anniversary? Is that what I'm supposed to say? Both happen to be true for us today.  They don't have a card for what I need to say which is, "Happy Crappy Reminder of What You Don't Have Day."  I hate these "holidays."  When Mother's Day rolled around this year, my husband gave me an article to read that was written by a bereaved father in Still Standing magazine.  He quite beautifully described what it was like to watch his wife suffer through a day that was meant to bring her joy at one time, and how he was powerless to stop it. I know my own husband feels like this often.  A major portion of his loss occurred the day our son had his first seizure.  He lost a piece of his son that day, but he also lost his wife.  I became absolutely consumed with taking care of  Easton, and that meant everyone else had to get what I had left over.  I'm not saying I would change that, because I wouldn't, but that doesn't mean that it was easy for my family.

The thing is, Father's day is hard for bereaved mothers just as Mother's day is difficult for the fathers.  The loss of a loved one really highlights your inability to "save" anyone from pain.  My children are different, and I couldn't fix that.  My son is gone, and has left a gaping wound in my soul.  And just for fun, I get to watch the man that I love, suffer daily.  Today so many fathers got dried macaroni artwork and ugly ties from their kids. They got to hug each of them tightly, or didn't even think to do it because they can always do that tomorrow.  Instead, my husband was reminded all day long, that not all of his children would wrap their arms around his neck today.  When he saw all the names on the card, he knew that someone's signature was forged.  And why?  It doesn't make any sense.  Shouldn't all of his babies be here today? Wasn't he a good enough father?

Let me tell you something about this man with a broken heart.  He coaches the teams. He reads the bedtime stories.  He provides for the family he loves.  This can be said of many great dads and my husband is no exception.  Unfortunately for him, he's had to be more than that.  He's had to be a father to a disabled child.  He had to learn early on in his son's life that he would never be able to enjoy sports with him.  He began to know what it meant to be on the other side of a difficult parent/teacher discussion.  And as painful as each of those losses were, nothing will ever compare to the crushing blow he experienced in those last days of his son's life.  What man has to sit by and watch his son deteriorate before his eyes?  No part of that is fair.  And I can't do a damn thing about it.  I remember the first time Easton coded and we weren't prepared at all for what that might look like.  We were both panicked, but I just went crazy.  I screamed and cried and he pulled me to him in a giant hug but I pushed away and beat his chest.  I yelled at him that the timing wasn't right and that this was not how this was supposed to happen.  He continued to hold me. He took the beating.  What man has to watch his son being revived through a glass window, and also pick his wife up off the floor?

Sometimes I honestly don't know how we got to this day.  Frankly, I don't know how we get up and do what we do on ANY given day.  It's not because we were "meant to be."  It's not because we have some magical super power.  And it certainly isn't because I "chose the right Daddy for my babies."  You know what?  Life happens.  Some of us get lucky as shit and things fall into place for awhile.  Where will we go from here?  Your guess is as good as mine.  I know with absolute certainty that there are no guarantees.  But, what I do know is what I've seen with my own two eyes.  I know what I have lived.  I know that just for today we could be the poster children for Still Standing magazine, because we are, in fact, still standing. Well, sometimes it's standing.  Sometimes it's leaning.  And sometimes it's just falling on the damn floor. If we happen to be standing it can be because we're leaning on each other, and sometimes it's because we know we need to lean away.  No one else is on this journey with us.  It's ours and ours alone.  And although I would give anything to take the pain from his eyes, I wouldn't trade the man he's become.  I know the fires he's walked through, and I know his scars because they match mine.  So, Happy Shitty Father's Day, Happy Crappy Anniversary, and know that although tomorrow isn't promised, if I'm meant to struggle through another day, I'm grateful to be doing it with you.

Sunday, May 25, 2014

Four

Four.  The number of times I got to hear that first cry from my babies.  Four.  The number of children who should be here now, celebrating today.  Four.  The number I want to SCREAM at anyone who asks how many kids I have.  Four.  You should be four today.  Are you 4?  Do you look the same?  How tall are you?  Is your hair longer?  I should know these things.  As your mother, I should never have to ask any of these questions.  So many people don't ever have to wonder about these things.  When did I become a member of the club of those unfortunate souls who do?  I don't even know what size shoe you wear now.  That should be a given.  I should know.  At one time, I knew every gram of food and drink that entered your body.  I knew every scratch, birthmark, and scar.  I knew every movement and every sound.  Why can't I hear you now?

I try so hard to remember the good moments we had.  Four is the number of steps you took unassisted in the pool on one of our MANY play/therapy excursions. I remember your crazy belly laugh every time your brother and sisters repeated the same line from a movie over and over in the van.  I remember the way you used to sneak the game chips from Sequence into your mouth and then look at me like you were daring me to punish you.  I wish those memories didn't burn.  I wish they didn't sear my soul in such a way that makes it impossible for me to get out of bed.  But, they do.

I looked for a picture of the two of us today.  I finally found one, but it was difficult.  I, like most Moms, was behind the camera most of the time.  This is one of those things that makes me want to tell every mother I know to take advantage of the moments they have.  I want to say, "Forget that your hair isn't fixed just right.  Forget that your make up isn't done.  Who cares if you're 10+ pounds heavier than you'd like to be?  Get in front of the damned camera.  Capture that moment that your skin is touching your baby's and you're feeling the evenness of their breath. You'll need that someday when you can't get out of bed."  But, I know I can't say these things. My need to convey these thoughts comes from a place of hurt and a place of anger.  It's never directed at anyone in particular.  I'm mostly angry at the old me.  I'm angry for not knowing that I wouldn't get to see you turn 4.  I'm angry that I didn't take a few more seconds of snuggling time instead of pushing you to do more on your own.  I'm angry that I didn't get in the picture.

I wonder what you would like today?  I know only those interests that are frozen in time.  Do you still like cows?  I hope so. That's what's on your cake today. Sara made it for you.  Do you know her?  Did you see how perfect it is?  Do you still love things that light up?  We're sending your 4 floating lanterns up tonight.  Please look for them.  If you have a moment today, we'd love to hear a squeal or a moo.  You may have moved on from those sounds, but remember that they are the ones that are locked in our hearts.

I would give anything to hug your 4 year old self, today.  I'd drink in every second and soak up every scent.  I'd take a thousand pictures of the two of us with my hair undone and my makeup gone.  I'd take you on a paddle boat ride and watch you lean over the side just enough to freak everyone out.  I'd love you longer, stronger, and with more conviction than any mother has ever known, because I would know the gift of those moments.  Help me to stand today, sweet boy.  Help me to physically get up and move forward without you. Help me to feel the love and comfort from my children today. All four.

Happy 4th Birthday, my big boy.

Thursday, April 10, 2014

She's 9

She'll be 9 tomorrow.  It's her birthday, and she's turning 9.  To be honest, I don't really remember her turning 8.  The entire year was a blur and birthdays are a tough subject in our house anyway.  We did nothing last year for her birthday.  Seriously, nothing.  Well, there was one exception. Another Mom, and a woman who has become a sort of savior friend, made her a cake.  She made MY daughter a birthday cake. I vaguely remember her asking if she could do something, but I don't ever remember answering the question. But, when that day came I was lighting a candle on the most perfect birthday cake for a panda-loving princess. My friend had just done it.  She didn't need my answer to know what needed to be done. She took over when I couldn't be the Mom.  I've only recently realized the value in that.  I noticed that I'm learning to be a better mother from the women around me, just as I did before.

Another very special woman in my life suffered her own tragedy the same year our family was faced with the death of our son, Easton. Our stories are unique, and sometimes our grieving processes couldn't be any different.  But, we learn from one another.  We share pain and progress.  We cry and laugh at how far we've come and how far we have left to go.  One of the most amazing things I've taken from this woman is her ability to continue celebrating life.  We agree that neither of us does things the "right" way. We simply do what we can do.  She works tirelessly to make special occasions like birthdays and holidays as special as they've always been.  This concept was completely foreign to me, and I've had to take a chapter from HER strength book in order to see the beauty in that. I've seen that celebrations don't mean forgetting.  It doesn't mean we've moved on and aren't looking back.  It's simply another way we put our feet on the ground and keep walking, together. I'm not saying this is any easier for me than it was a year ago, but I'm grateful to her for leading by example and for never making me feel as though I was doing it "wrong".

This week I've spent most of my free hours baking ridiculously indulgent birthday treats for my daughter to take to school.  I took a cue from my friend who'd made the special cake last year and decided that I was going to try to make this birthday memorable, but this time with my own hands.  She helped me with the details of creating the perfect panda treats, but more than that she showed me that being present in this moment for this child didn't mean that I was forgetting the one who will never again blow out the candles.  And I didn't have to do it on her time.  She just waited.  She was just there when I needed her to be there, teaching me to make the cookies, but more importantly teaching me to remember that this opportunity still exists for myself and this child. And I love her for that.

 I didn't make them because I thought my dauther had to have them.  I made them because I can.  Because I've been gifted this moment.  I get to watch her turn 9.  I get to see her move on from her 8-year-old life for the best reason, because she's 9.  That's a gift, and I know it. I had no idea what to expect on the day I first met that fiesty little human.  She came into the world with an opinion, and she continues to share it today.  I don't assume I'll be given the opportunity to see her drive a car, or go on a date.  I don't assume I'll see her turn 30, or 40, or 50.  Those days aren't guarantees.  Those moments aren't mine to claim.  But what I know in this moment right now, is that she is silly and witty.  She is talented and beautiful.  She has more freckles this year than last.  And she's 9. And I'm here to see all of it.  I won't take that for granted.

Tuesday, April 1, 2014

Aunt Chach, Mom 2

They don't call her Mom, but they fit in that place in her heart.  She didn't give them birth, but she was there to watch them enter the world and was among the first to hold them close.  She doesn't have to be the parent, but she guides them with love and understanding.  She's watched them grow and has taught me to sometimes simply stand back and watch too.

She wasn't there that first night, but I felt her soul and strength with me.  She didn't get to be in the room with me when I made big decisions about his life, but her heart tore in two just as mine did.  No one asked her how she was doing that day.  No one brought her food and encouraged her to eat, or a pillow and told her to sleep.  Her visitor's badge said "Aunt", but that word wasn't sufficient.  There should have been a sticker that said "Mom 2".  Maybe then they would have known what this was doing to her.  Maybe then someone would have taken their eyes off of me for a minute and offered her their shoulder instead.

But, she wouldn't have wanted that.  She wouldn't have taken one second of the comfort meant for me.  Even though her soul was shredding too.  Even though her arms ached for the chance to hold him again, just as mine did.  In those last few hours when people were milling in and out and saying their good-byes, she stayed away, and not because of fear or disinterest, but because she was giving me all the seconds I had left.  She didn't take one moment of my time with him, although she had every right to do so.  They all cried for me and for the five of us who were losing that piece of our lives, but no one cried for her.

She could be sad but not AS sad as the mother.  If I cried a thousand tears, she was only allowed 999.  She could hurt, but the knife couldn't go as deep.  It wasn't allowed.  She wasn't the mother.  And although she may not have worn the title, I assure you that that day, she lost her child.  So today I cry for her.  I cry for her pain and misery.  I cry for her stifled screams.  I cry for the ache in her arms, and the tear in her soul.

I love you, my sister.  And I'm so sorry for the loss of your baby.

Saturday, March 22, 2014

Give Her Life

I know I've said this a thousand times, but one of the most unexpected parts of this entire process is the feeling of isolation.  I didn't realize how lonely it would be to live in "your child died" land.  And it's lonely mainly because you can't unlearn what you now know.  Sometimes that's excruciating, but sometimes it truly is the gift that everyone claims it is.

I recently read the article "101 Things To Tell My Daughters", as it was making its way through the facebook newsfeed. It's a great compilation of all of the truly important things in life that should be passed to our daughters.  I agree that many times the lessons we learn are passed down a generation, but sometimes they are linear and other times they can even be passed from daughter to mother.  I gave birth to two beautiful daughters, and I'm grateful for that every day (even when I'm threatening to disown them).  But, I've realized in the past year or so that, although I gave them BIRTH 6 and 8 years ago, it is only now that I'm learning to give them LIFE. 

 As mothers, we worry constantly about whether or not we're doing the right thing.  We do our best to protect our daughters from our own difficult experiences, and we kill ourselves trying to make sure that no matter what injury may befall our little legacies, we will have exactly the right band-aid, in exactly the right size.  But, when something comes along and strips you of your right to worry and protect, you see things a little differently.  I no longer keep band-aids.  This is where perspective becomes a blessing and a curse.  It's difficult to permanently abandon the worry, to give up that inborn motherly angst of trying to protect/save another human being, especially when those around you don't have the same experience.  However, it's also the most freeing moment of your life when you are able to do so.  And it isn't just to your benefit.  In fact, it's exactly what will give your daughter all the things you've been trying to give her all along. 

I'm certainly in no position to be dolling out advice.  None of us are, if you ask me.  But shared experiences are some of the best ways to connect with others in a loving and understanding way, so here's what I know.  I know that my girls are going to skin their knees when they fall off their bikes.  I know they're going to look to me to fix it.  But, what if instead of rushing over with a band-aid, I love them from a distance as they get back up on their own?  This seems simple and cliche, but when exactly is the right time to show them that you have confidence in their ability to get back up?  Is it when they fail their first test?  Lose their first job opportunity?  My youngest daughter fell in a swimming pool this past summer and it happened to be in the deep end.  She was flailing and struggling, and two years ago I would have jumped in fully clothed and immediately pulled her to the side.  But something inside me told me to stop.  Instead of pulling her back out, I calmly told her to swim.  She refused and sunk a little deeper, but still I stayed on the side of the pool.  I told her to use her legs and her arms and to feel her way to the side.  When she made it to the edge, I lifted her out, wrapped a big towel around her and hugged her until she stopped crying.  I was so proud of her in that moment, and I told her so.  As I was driving home that day, I realized that the lesson wasn't for her.  It was for me.  I was a new kind of mother now, one that knew that no matter how many band-aids I kept on hand, and no matter how many safety warnings I gave, at some point, my girl was going to be drowning without me.  But you know what?  My girl can swim. 

Does this make me a genius?  Does it make me mother of the year?  Of course not.  This means that I'm broken.  It means that the me I used to be doesn't work anymore.  Instead, someone else is learning to walk in new mom shoes.  She's learning to LET IT GO (for all of us who can't stop hearing the song in our heads).  And, actually...this part isn't so bad.  I've watched what I hope will be the biggest fall of my daughters' lives, and I've seen them get back up and start pedaling again.  But the greatest gift of freedom I've received is in knowing that even if this wasn't their darkest hour, my only job is to love them through the process.  It was chance that I was able to give them birth, but I'm most grateful for the ability to CHOOSE to give them life. 



Sunday, March 9, 2014

The House That Grief Built

Today it's his turn.  Tomorrow it might be mine, or hers, or all of us combined.  Sometimes it's anger, sometimes it's tears.  It doesn't really matter which method we choose.  They all suck.  And we're stuck here in this new existence.  Each of us navigating a new world and trying to make the pieces of each individual fit into a family.  It doesn't work well.  Not without that most precious 6th piece.  He's still here of course, but not in the way we want him to be.  Not in the way that makes our puzzle fit together.

You know what the biggest problem is?  Our physical life, our day to day, has become too damn easy.  Seriously, I just read about a parent who is struggling through life with a sick child and she describes the medications, the therapies, the phone calls, the constant worry.  And I know all about that life.  That's the life that left me completely drained, physically, emotionally, and spiritually.  It's the one that made me cry myself to "sleep", but only for minutes at a time before the worry would creep back in and take over.  Yes, I remember that life well, and I remember begging for it to stop.  For at least the physical part to get better.  Guess what?  It did.  And it's horrible.

Without that piece of constant movement, that never ending need to "save" a member of our family, we have time to think.  And that is dangerous.  The first part of the grief process was such a tunnel.  We were all just feeling our way around in the dark.  Separately.  Now it seems we've found pieces of each other again, and although that would seem to be a positive thing, it just brings up more pain and confusion.  If I squint hard enough, I can catch a glimpse of my little girl, but it doesn't last long.  She may laugh for a moment, but soon she'll be swallowed up by the darkness again.  It happens to all of us.  My husband is over there in the corner.  I know he is because sometimes I see him, but then I remember that it's not all of him.  And if I find the courage to look into his eyes, I'm reminded with blinding clarity that I'm no longer all of me.  How are we supposed to make that work?  This is a rhetorical question, of course.  No one has this answer.  The people in this HOUSE don't have the answer, and if they don't, no one does.

Every family experiences the emotions of each of its members.  Usually you deal with it and move on, right?  Sisters fight and they are punished for being unkind to one another, and you move to the next issue.  That doesn't happen here.  Sure the sisters are fighting, but why?  Can you always blame the grief?  Maybe it's just a normal part of growing up with siblings.  That's possible.  But what if you're wrong about that?  What if they can't stop pushing each other away because they feel the need to protect themselves from loss again?  Maybe they want to control what they can and can't have.  That's what their Mom does.  So why shouldn't they be allowed the same liberties?  Could we be blaming the pain too much?  Sure.  But it's always there.  Even if it isn't the reason for the fighting, it will become the raging voice of punishment.  All of the sudden a normal moment of parental frustration becomes a shouted list of the reasons that life is unfair.

This exercise in emotional torture is a life sentence for this family.  Everything we do or don't do is colored by what we've lost.  We grieve so differently, and the outlets we choose to release that pain couldn't be further apart.  How do you make that fit?  You don't.  You sit back and watch, or you stand up and scream, depending on your role that day.  But what you don't do is fix it.  What you don't do, is make it better.  You let it happen, and you pretend for a moment that you have a choice in the matter, that you're choosing your role.  But the truth is, this isn't your house anymore.  This is grief's house, and you're just living in it.

Wednesday, February 19, 2014

What's Missing

My little ballerina is constantly twisting and turning, using the correct names for each of her newly learned moves (minus the "r" sound of course).  She's usually so happy after her dance class and tells me all about the things she's learning, promising that someday I will get to see her perform, but not until recital time.  She gets all giggly and evasive when I ask what her dance looks like.  It's a game we play.  But not tonight.  Tonight she wasn't my 6-year-old, giggling ballerina.  Tonight she was broken.

As Morgan left her class tonight, I noticed the cloud over her eyes.  I saw that telltale sign that the big one was coming.  Sure enough, we barely made it to the van when the tears started. This is how she operates within her grief.  She gets whiny and seems very tired for several weeks and then the explosion happens.  She started by complaining that the dance had changed again and that she just wanted to finish it so she could practice the whole thing because she was so afraid of messing up on the stage.  I reassured her that I don't watch her do things to make sure she does them "correctly."  I told her that I watch her because I like to see her experiencing life and enjoying it. I added that I felt extremely lucky to be able to witness those things.  That's when the pain became too much to bear:

"Mommy!! I am NOT lucky all the time.  I just keep losing things!  Important things!!"

I have an idea where this is going at this point, but I don't want to assume so I try a different angle.
"Well, Morgan, everyone has to learn responsibility and taking care of our toys and things so that we don't lose them."

"You don't understand what  I'm saying, Mommy.  I don't care about my stupid toys..."

This is where the Mom I used to be would tell her that we don't say stupid, but I know this is not one of those conversations where I get to be Mom.  What good is Mom in this situation anyway?  Mom is someone who fixes the problem, right?  There is no fix here.  Mom is unnecessary.  Instead, Compassionate Listener takes a turn.  So I play..."Ok, what have you lost then?"

"I am NOT saying it out loud."

"Your brother." It isn't a question.  It doesn't need to be.  It's a statement that says, "me too."

"YES!! THIS ISN'T FAIR, MOMMY!!  I HATE THIS!!  Why do all my friends have their brothers and I don't??  What did I do wrong?  I. WANT. HIM. BACK."

Again, not a question.  Because guess what?  It isn't a request.  It is a demand.  She wants him back. NOW. And I should give him to her.  She's right. And I know it.

So, I do the only thing I know to do.  I hug her and thank her for being my daughter.  I tell her how grateful I am that her healthy, capable little body can do the most beautiful "piwowette" I've ever seen.  I thank her for crying with me.  I thank her for sharing with me.

"Do I look like you, Mommy?"

"Yes, Baby. You look very much like Mommy."

"Do I act like you, Mommy?"

"Sometimes you do."

"I...I want to look like you...I want to act like you, because...Mommy?...Didn't Beastie look like you?"

"Yes, Baby. He did."

"Well, I want to look like him.  I want to be like him."

"Oh, Baby.  Nothing makes me happier than looking at your face, because I see him there.  No one on the planet looks more like him than you do.  But you know what?  I'm so grateful that you're my Morgan, because she's a pretty fantastic little girl all by herself.  And do you know what makes you just like your brother?"

"My curly hair?....because it's gone...(tears)"

"No, Baby. It's your big, beautiful heart.  And that will never go away."

When did being Mom become so painful?  I can't take her pain away.  That should stop when you've lost the ability to help even one of your children.  There shouldn't be any more tough questions or unanswerable moments. But there are.  Life doesn't care what you think should be happening.  Life just happens.  And it's hard and it's ugly, but every once in awhile the thing that is missing is actually what makes it worth living.  I would have never known how much more beautiful a pirouette could be...especially without the "r".






Thursday, February 6, 2014

Gratitude

Consuming.  Grief is all-consuming.  Anger, hate, fear, pain, loss....these are the things I've felt burned into my soul.  The heaviness of these emotions can be unbearable.  But they're all part of the process and must be experienced on my time.  This is the lesson of grief.  The different aspects come in waves and you can try to ignore them, but eventually they all come to a screeching halt, right in front of your face.  This is still true of my process.  And the most recent addition to the myriad of emotions?...overwhelming...GRATITUDE.

I didn't see this one coming.  I expected the fear, the pain, the anger.  I wasn't even all that surprised when all I could feel for any living person was burning hatred.  Sadness was always going to be a factor, but gratitude?  Where the hell did that come from??  And yet, here it is.  Gratitude.  I can see the beauty of life experience.  I can understand the gift of tremendous pain.  To be honest, I've put off writing this blog for some time now because I was imagining how I would have felt in the beginning had I come across it and realized that yet another grieving mother was spouting her blessings and thanking God, Allah, and Mother Nature for her good fortune.  I would have thrown the computer against the wall. Ironically, it's exactly that spirit that made me decide to write it.

I can't tell anyone where their grief journey will take them.  I wouldn't ever tell someone to count their blessings or to thank their lucky stars for the gift of renewed perspective.  What I can say is that, in my own tiny corner of grief, beneath the dark layers of pain and hurt, there is the smallest light.  I can't even say that I can fully comprehend where it came from or how far it extends because I'm still wading through darkness. But it's there.  You can't go looking for it.  You can't wish for it to get there sooner.  You can't even know for sure that it will ever show up.  You have to experience ALL of it.  And feeling this way now doesn't mean that the other parts are less important, that they are the "bad" parts of grief, or that I won't be bogged down by them again.  Certainly not.  Don't worry...I'm still batshit crazy over here.  But, I'm grateful that the coin always has two sides. Both equally as important as its counterpart.

So, what exactly am I grateful for?  All of it.  I'm grateful for the beauty of a community coming together to raise us up.  I'm grateful for my friends and family who have said, "We'll take you any way we can get you. Broken or not. Even if that means not having you at all for awhile." I'm grateful to my children for continuing to want to hug a mother whose range of feelings for them has spanned the globe in the past year.  I'm grateful to my husband for just being him, and for listening to his own heart when trying to navigate a way through the pain of a marriage that's been wounded by loss.  I'm grateful to my baby for teaching me things that my tiny human brain would have never discovered on its own.  He taught me to love.  To REALLY love, and to mean it.  I'm grateful to know a love whose mere touch is healing.  And I'm grateful for grief and its all-consuming nature.  Because it's still there.  It still hurts.  It still burns.  I'm still consumed.  But this time, by the need to share my most precious gift. Love.