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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.