Monday, June 11, 2012

Chicken Scratch

Have you ever been asked the question, "What's the best gift you ever got for your birthday?"

I have on more than one occasion and I never have been able to answer it. I mean, I made out pretty well this year but I can't recall any other gifts that have blown my mind.

No one has ever really done anything big for me on my birthday. There have been no parties or surprises...no decorating...no balloons or confetti. Well...as a kid yeah but not as an adult. As an adult, my birthday has always just been like any another day. Outside of taking Jackson to the zoo every year, there's only one thing that I can remember that every truly made me feel special.

As a kid, we had this white, magnetic board attached to our refrigerator where we would make notes to remind ourselves of various things we needed to buy or places we had to be and at what time. On top of the refrigerator were 3 or 4 dry-erase markers that we would use on that board. There was always one that was barely hanging on with ink and if you used it, you were bound to forget what you had written because it was illegible. That always seemed to be the only marker I could ever reach.

On the morning of June 11th, I would walk into the kitchen and there on that board I would see my father's chicken scratch handwriting. The message was always the same. It was always in capital letters.
It always read 'HAPPY BIRTHDAY, LISA!!!!!'

My dad would be gone for work by the time I woke up so I wouldn't see him on the morning of my birthday unless it fell on a weekend. Even if I did see him, he'd still scratch that same message across the board. Every year. Never missing a single one. It wasn't until we changed refrigerators and the white board was pitched that the yearly birthday message ended.

Of all the gifts I've received over the years...all the cards, messages or phone calls...the ONLY thing I remember is my dad's handwriting on that little, white board. I remember how it would bring a smile to my face even when I was a jerk teenager. It always made me feel special. It always made me feel loved.

The board is now long gone. Even if it were still around, my father wouldn't be able to write out that simple sentence because of his hands.

Wait...I take that back. He probably WOULD try to write it but the letters would be illegible to anyone who tried to read it. Anyone but me. I would know what that scribble read and even at the age of 37, it would make my heart smile. It would make me feel special. It would make me feel loved.

So when asked what the best gift was that I've ever received for my birthday, my answer would my father's chicken scratch handwriting. No one would ever understand that answer.
Only my dad I would.

Thursday, May 3, 2012

School's In Session

As parents, it's our job to teach our children right from wrong. We pick bits and pieces from what our own parents taught us and try to instill what we believe to be good morals and ethics.

When you really think about it, that's a HUGE job! I mean, what if you screw up? What if you forget something and you send an a$$hole out into the world?!? It's a lot of pressure!

My father was the disciplinarian in our home. My mom need only mention calling my dad at work and I'd stop doing whatever it was I was doing wrong. Immediately. Well...until 7th grade. Then I became a fearless jerk.

My dad wasn't a bad guy though. He was stern, but loving. Even though I was scared of him, I knew he loved me. He kept me in line...but in doing so, he taught me right from wrong. Although I acted like a jacka$$ for a few years there, it's life lessons that he taught me as a child that guided my adult life.

When I was young, there was a girl in my grade named Dana Robin. Outside of my core group of neighborhood friends, I considered Dana to be one of my best friends. But there was a problem...ya see, Dana was a b!#ch.

At school, Dana would decide, based upon the day, if she was going to be nice to me or not. Most of the time she wasn't. She would say mean things, make up lies about me, tease me or run away from me at recess....

There were plenty of days where I would come home crying because of what she had done to me.

Once the school bell rang and there were no other kids around, she suddenly wanted to be my friend. She would call and I would ride my bike over to her house 5 minutes later. It's not even like she was kind when I would go either. She'd still be somewhat mean...but I took it. I tolerated someone being nasty to me...taking advantage of me...hurting my feelings...for whatever reason, I tolerated it.

I'm not sure what exactly prompted it, but one day I was really upset and came home crying. It was at that point that my father had had enough. Even though the school bell had rang hours earlier, a new class was starting. It was called, "The Gonzalez class on how to grow a god damn backbone" and it was taught by my dad.

I'm not sure why I remember this particular class session so well this many years later. Perhaps it was the message...or more likely, it was the fact that it was the first time I heard my father swear. I think it was a little of both.

My father questioned me on why I would tolerate someone treating me like that. I would say, "Because she's my friend, dad." His answer would always be the same..."Someone who cares about you would NEVER EVER treat you like that."

Really? Huh...

Now here's the part that stuck...

He looked me dead in the eye and said, "Lisa, my dad had a saying in Spanish." (He'd then say the Spanish version but there's no way in hell I could write that one out)

"It means, 'Shit on me once...shame on you for doing it. Shit on me twice...shame on me for allowing you to do it to me again.' Do you understand? This isn't about Dana anymore. You allow her to do this to you over and over again. This is now about you. It's your fault because you continue to let it happen. You let her walk all over you. Now you can only blame yourself for putting up with it."

And to drive the point home? He grounded me. Yep...my notes to prep for life's future Dana Robins included a week or two of not being able to play with any of my friends, no phone, and I was forbidden from ever playing with Dana Robin again.

Looking back on it, it was an interesting lesson. While I thought he was horrible and mean back then, as an adult I look back on that moment and see how it forever changed me. It was at that time that I finally grew a god damn backbone. Hell...if I didn't he'd ground me again. It made me look at relationships differently. No longer was I a rug that you could walk all over or wipe your feet on.

Although my father taught many other classes, I think that was the one that impacted me the most. It molded me for future, adult relationships and taught me that I was worth more than that. It taught me that I DESERVED better...and to this day, it stuck.

I found myself teaching this same lesson to Jackson. It played out almost exactly the same. It included a kid who he considered to be his best friend that treated him like crap and him taking it like his mother once did. It included the "My father once told me..." speech. It even featured the grounding...although not as tough as I had gotten years back.

My father is obviously a far better teacher than I am, however. My class with Jackson wasn't as effective. Maybe it's because Jackson isn't as scared of me as I was of my dad. Or maybe it's because he thinks his teacher is full of s##t.

Whereas I never saw my dad having to answer to anyone, Jackson has seen me been yelled at at work and has seen me take it. He's seen me do exactly what it is that I tell him not to do. That was never the case with my father.

Perhaps I need to enroll Jackson in class with my dad.

When I look back on my adult relationships, I know that the Dana Robin lesson played a huge part in what I found acceptable. My dad taught me that I was worth more than what I had once thought and it carried over to my relationships...especially with men. The majority of the time, I would walk the minute I felt disrespected...but there were a few instances where I stayed because of what I thought was love. Each time I stayed, I'd think of my dad...how disappointed he'd be...how he taught me better.

I make it a point to teach Jackson to be stronger than I was/am. As a woman, it's hard but I try to teach him how to be a good man. I look back on the lessons my father taught me and those I have had to learn on my own. I stress the importance of being truthful and tell him the worst thing he could be in life is a liar. I teach him to respect others and to always think of their feelings before you act or speak. I teach him how to treat women...well, girls really...7 year old girls...but also the women in his life. I stress the importance of good friends and how to sustain those relationships. I teach him the importance of family. All the lessons I learned from my father...

But when I look back at all the lessons my father taught me...it all comes back to Dana. It all comes back to not allowing people to s##t on you. That was where my schooling really began and that's when I really became Lisa Gonzalez and not Lisa the Doormat.

I may have slipped a few times...I may have sold myself short and let some people treat me like s##t...but deep down I know I deserve more. I know I deserve better. I know right from wrong. I know to think of others before myself. I know the importance of family. I know the importance of being truthful...not only with others but also with myself.

That's more than I can say about other people I know.

I know all these things because my dad taught them to me.

In all my years of school, it turned out that my greatest teacher was not found in a typical classroom.

My greatest teacher...the one who really taught me about life...was my dad.

Wednesday, April 18, 2012

Rolling Down the Hill

I'm not sure how old I was the first time I was asked, "What's your earliest childhood memory?"

I remember thinking, 'How the hell do you do that? How do you know what came first?

I was never able to give an answer and to this day, I still cannot.

Memories, for me, come in snippets. I'll be driving by something or will hear or smell something and a memory will come flooding back. Most of these memories are from my teen years and on. I can't ever remember years...to this day, I still don't know what year my grandmother died but I remember the event like it was yesterday...but I have another way of measuring when things happened. Get ready for it...boyfriends.  That's right, I can't remember the year things take place but I can remember which doofus I was dating and I piece it together from there. How pathetic. It's not my fault though. Jay got all the math and numbers brains so by the time I came around, there was nothing left.

Most of my childhood memories include my neighborhood friends: Allison, Chrissy, Jenny, and Andrea. I can still feel the twigs smacking me across the face as we ran through the trees and bushes where the Shabonee School parking lot now sits. I remember games we would play and how we would be out together from 9:00 in the morning until our moms called out the back door to let us know it was time for dinner. I remember holding fake dancing competitions and arguing over who got to sing which Kenny Loggins song from Footloose. Oh, the drama.

I've got plenty of those type memories. What I don't really have or are at least unable to access in my brain are memories of time spent with my family. Sure I remember family vacations in bits and pieces and I certainly remember all the trouble I got in...however, I have very few memories of me with my siblings or with my parents.

Keep in mind that my sister is 11 years older than I am and my brother is 14 years older. That's a huge difference. At a certain point, I felt more like an only child because they were gone away at college. I don't think Carla ever really came back after that. See...I can't remember.

Both of my parents worked. My dad held a typical 9 to 5 job at The Sears Tower. He'd take the train there and back and would then take a bus that would drop him off at White Mountain...the street behind ours. I DO remember sometimes running to the bus stop to meet him so that I could walk home with him. I didn't get to spend much time with him during the weekdays and on weekends, I was off with my friends.

My mom had an unusual job...but one that kept me very popular in town. She worked with chocolate out of our basement. Imagine how many people wanted to come to MY house for playdates!

With HER job, however, there was a lot of travel involved. She would be gone for what seemed like weeks on end since some of the trips backed up to others. If she WAS home, she would be down in what we call "the dungeon" working away. When she began writing her first book...well, forget it. None of us saw her at all then.

So since my parents were busy working, many of my childhood family memories revolved around my grandmother. Most include her apartment in Indiana or going to my Auntie Margie's house. Many of these memories included me being spoiled rotten...which is probably why they stand out the way they do.

On Easter, as the kids went running down the huge hill in my brother's front yard looking for eggs, a memory came and smacked me across the face. Clear as day...like I was standing in the memory itself. It's one of my fondest childhood memories...and it includes my dad...

In the Fall, when I was little, my father would drive me over to Wood Oaks park and we'd walk up what seemed to me back then, a mountain. When we got to the top, he would take me to the west side of the hill and we would lean against the gate in silence. He brought me here to witness the beauty of nature as the trees from the forest preserve began to change color. No words...just silence. No work...just a dad and his daughter.

We'd always go right before dusk so as we were quietly staring at the trees, the sun would begin to set. I can still see some of those sunsets and how the sun reflected off the leaves. As the sky changed colors behind the multi-colored trees, you couldn't help but realize just how beautiful some things God does really are.

As the sun began to set, he'd let me play a bit before heading back to the car and on to our next stop; Baskin Robbins...the one that USED to be next to the McDonalds that USED to be in Sanders Court.
Bubble Gum ice cream, please!

But back to the hill...

I remember the thrill of running down that thing at full force while my dad was shouting behind me "SLOW DOWN!!!" After a few trots down, there was no way you could possibly stop yourself. You either face planted, or you made it to the end of the hill. Virtually impossible to stop midway.

If I wasn't running like an idiot asking for a neck injury, I was rolling down the hill. The thought of this now makes me sick to my stomach. How I was able to do that without throwing up is beyond me. But back then...it was fun.

I liked running more though. As you caught speed, your strides became longer and each time your foot hit the Earth, it would take your breath away. You were just going so damn fast...wind whipping in your face, hair blowing everywhere, a trail of grass and dust left behind you, having absolutely no control...it was awesome.

And then I grew up.

When I see my son doing the same thing I did as a child, I'm screaming at the top of my lungs, "SLOOOOOOWWWWW DOOOOOOOWWWWWN!!!!!" just like my father once did. All I can picture is him face planting and losing all of his teeth...or worse. As an adult, I now see the danger in running full speed down a hill...but not back then. I see myself in Jackson each time he's running down a hill laughing or yelling with delight. I see what my father saw when he watched me run like an idiot way back when.

I miss those evening trips out to see the leaves changing with my dad. I miss standing in silence with him, not knowing what he's thinking, but knowing it isn't anything like his thoughts now. I miss the innocence of that time...not yet realizing that your parents would get sick one day and that this would be one of those moments that brings tears to your eyes. Such a trivial experience but yet it's the one that makes my heart hurt the most.

I would give anything to have just ONE of those nights with him now. If I could just wheel him up there and park him on the west side of the hill and watch the sun set over the deep red and bright yellow tree tops... I would give anything to sit up there in silence with him and not be thinking that I'm losing him. I'd give anything to have the mind of a child and not know what the reality is here. I'd give anything to WALK up that hill with him and hold a hand that hasn't been touched by ALS. The strong hand...that's the one I want to hold.

But while I miss the quiet moments at the top of the hill and would die to relive those now, I still feel as if I'm running down Wood Oaks hill...at full speed....but this time I'm not having fun. This time, I can't stop. This time, my legs are moving faster than the rest of my body. This time, the lack of control is different. It's scaring me.

Because in reality, my life now feels like running down a hill. Things are moving so fast and just when you think you gain some control over your movement, you lose it again. Your feet feel as if there are wheels attached to them. Full speed ahead...no squealing with delight.

Now it's not my father who I hear screaming, "SLOW DOWN!"...it's me.

"Make it stop! Make this slow down! Not so fast! I can't control this! DAD!!! HELP ME!!!!!"

But it doesn't stop...it doesn't slow down. In fact, it seems like every day you pick up more and more steam. You have no control and you're scared of how it's going to feel when you fall...when he's gone.

I wish I had a picture of us at the top of that hill. I wish I had something that I could hold in my hand to remind me of those nights. I wish that instead of running down that hill, I am rolling. Even if it makes me puke, I'd rather be rolling.

If I was rolling, it wouldn't hurt as bad at the end of the hill.

If I was rolling, I'd have more time.

Tuesday, April 10, 2012

Happy Holidays??

Holidays are supposed to be a joyful time. I mean, it's right there in what we say:
"Happy Easter!"
"Happy Mother's Day!"
"Happy New Year!"
The only one that's really different is "Merry Christmas!" but come on...it's the same thing.

So if holidays are supposed to be so joyful and are supposed to fill me with the spirit and all that crap, why do I feel like such s##t each time one rolls around? Holidays aren't fun for me right now...so don't ask me how my Easter was!

Instead of focusing on what we're celebrating and why we're celebrating it, I instead focus on one thing alone...Is this the last _____ (insert holiday name here) that I get to spend with my father? In my heart, it feels like when it comes to this year, the answer is yes.

Thanksgiving of 2011 was quite possibly the worst I've had thus far. I think what it really boils down to is that Thanksgiving is a cursed holiday for me...end of story. The year before, I was up in a dark, cold room at my in-laws' house with a colicky baby who wouldn't stop screaming. This year, I was on the phone most of the time fielding calls from my sister who was on 'Dad Duty'...and when I was not on the phone, I was worried about what was going on with my father instead of what was going on where I was at physically. That night, I was answering questions about death from my 7 year old and listening to my 1 year old scream bloody murder from an infection he had suddenly contracted. It just sucked. No other way to describe it.

What really pissed me off was reading about all the wonderful things my friends were doing on Facebook and how much they enjoyed their Thanksgiving.

Pictures, "Happy Thanksgivings!"...it was all so happy and la dee dee da that it infuriated me! And the month leading up to the holiday? If I had to read one more post about "Today, I am thankful for _______" I was gonna throw up. Everyone else's happiness made my sadness that much more intense. And my sadness was quickly turning into hatred.
While everyone else was sitting around a table saying why they were thankful and all that crap, I was sitting at the table looking at my father and wondering if he would be in his usual seat next year or if instead I would be crying at the hole that will be left by his absence. How are you thankful for that? It's bulls##t!

As I read all the happy Facebook status updates, I made one of my own. It read something to the extent of "What a s##ty Thanksgiving." Boy, did that cause an uproar! People who I had spent the holiday with were upset because they felt as if I was implying that I didn't like being with them. They couldn't see what my reality now was. I actually had to explain why my Thanksgiving sucked...and it went a little something like this:

"My Thanksgiving was nothing like your Thanksgiving. While your Thanksgiving included talk of Black Friday deals and the latest gossip, mine included talk about my father's living will and his impending death. While you were surrounded by healthy family and friends, I was struggling with my father's battle with ALS. While you guys talked about who's making what next year, I was asking God if this was the last year I would spend Thanksgiving with my father. While you engaged in funny conversations, I was on the phone with my sister wondering if we had to go back to the hospital yet again. While you guys laughed away, you had no idea that just around the corner, I was in the bathroom crying. While you guys were still sitting around drinking after we left, I was talking about my father's death with my seven year old son. And when you laid down to go to bed that night and drifted off in a turkey induced coma-like sleep, I was up all night with a sick, screaming baby.
So while we might physically have been in the same room and what you were experiencing was joyful, my experience was not. I may have been there physically, but I certainly wasn't there with you mentally because of one simple fact...MY DAD IS DYING!  Excuse me if I don't feel thankful for that.
So I stand behind my status post...Thanksgiving was s##ty!"

Each holiday thereafter was the same...looking at my father at the head of the table wondering if this is it...is this the last time I get to say "Merry Christmas" to my dad? Is this the last time I serve him a piece of ham on Easter? Is this the last time he'll see my children searching for Easter eggs? How do you bottle up the time and memories spent with him now so that you can cherish it in the future? When your heart is breaking, how do you be Happy or Merry? How do you not hate everyone else who is so joyful and lucky?

Some might say, "Lisa, you should be thankful for this time you have with him now." Believe me...I've heard it 1000 times. My response? "God forbid your parent contracts such a disease and the tables are turned and I make such a comment to you...do you think you'd be able to do that? Can you turn off heartbreak? Can you turn off the fear of losing someone as important as your father? If you can, please teach me how. I'd be happy to be thankful then...but for right now, piss off!"

See, it's easy to say things to someone in my shoes...especially if you've never lived such an experience. If you've never watched someone you love so deeply deteriorate right in front of you from a disease such as ALS, it's easy to judge me and my inability to find happiness in certain situations. The reality is that there is nothing to be thankful for or happy about when it comes to ALS.

If he were to suddenly pass away in his sleep, then I'd be thankful. Thankful that he wouldn't have to suffer what's coming. Thankful that it was quick and painless instead of long and drawn out. Thankful that his loss of dignity had finally come to an end. Thankful he could leave this Earth with what little independence he still had left. Thankful that where he's going, there is no ALS. Thankful that when he goes meets his maker, his brother will be standing there waiting for him holding a pair of running shoes so he can run to the gates of Heaven instead of steering his wheelchair.

Yes...then I'd be thankful. Then it would be a happy holiday.

How f##ked up is that?

Until then...until this is over...while I'll be smiling on the outside for the sake of my children, I'll be crying on the inside for my father. So stop asking me how my holiday went. The answer will always be the same..."It was ok"...but what I really mean to say is, "It sucked. My dad is dying. Why do you keep asking me such a stupid question?"

Happy holidays...yeah right. Not so much.

Maybe one day...

Friday, April 6, 2012

The Girl With the Weight of the World in Her Hands


In 1999, my brother met a girl named Lisa. He hadn't dated much previously so when he brought her home, it was a big deal. We had to make sure everything was right so we didn't scare her off.

When I first met Lee (one of the two names she goes by with us) I was first struck by her eyes. Big, blue eyes that can smile all on their own. I'd never seen eyes like that before. They were captivating. They sucked you in like the cartoons where one animal's eyes are swirling and the animal looking into those eyes goes into a blank state and then gets eaten by the other animal. That's Lisa's eyes...minus cannibalism.

The second thing I noticed was her hand shake. I HATE it when a woman has a weak hand shake...like they're not confident enough to grasp another hand strongly. It drives me crazy...especially when they use just their thumb, pointer and middle finger...and it's not even the full fingers either...it's just a light touch like they're scared you're gonna ruin their manicure. Pathetic.
Not Lisa though. Damn! She could shake a hand. Strong. Firm. She even shook the hand up and down after she grabbed on. Now that's a hand shake!! I could see that my brother hadn't found himself a wall flower who was quiet and reserved like he was. This girl was strong and confident and could own a room when she entered it. If they stayed together, she'd be the one wearing the pants in the relationship for sure.
He had the good sense to snatch her up and soon there were two Lisa Gonzalez's in my family. In order to prevent any confusion, she's Lisa Beth or Lee and I'm Lisa or Lisa Marie...but it's still confusing. You call out our name and we both say, "Yeah?" And for the record, if one more person says to us, "Lisa, Lisa and the Cult Jam!" I'm gonna poke em in the eye! (How sad that some people reading this right now who are younger than me will have no idea about that reference. Ugh...I'm gettin' old) But I digress...


In the beginning of their relationship, I didn't really get to know Lisa that well. There are 14 years difference between my brother and I so he and I don't even know each other that well. What we do know about each other is that we couldn't be more different. He and I don't talk on the phone or exchange emails. It's not like we spontaneously get together for some brother and sister bonding time. It was hard to get to know his partner when I didn't even know him.

Even though I didn't know her well, Lisa was there for me during my depression in 2002 and she was there to help pull me out of it. I remember one day in particular where we all went on a trip to the zoo together. It was the first time I had smiled in a very long time.
Lisa was also there for Jackson's birth. Some of the funniest moments of that day, and believe me...there weren't that many, included Lisa. I had terrible back labor and Lisa volunteered to rub my back to help ease the pain. After I got the epidural and was waiting for it to kick in, she resumed her job. As she was rubbing my back, she was growing more and more tired and her head was bent forward right by my lower back. At this point, the epidural kicked in and I could no longer feel the lower half of my body. I couldn't tell what was going on from my chest down...and then it happened.
As my poor, unsuspecting sister-in-law was so kindly massaging my back, I literally farted right in her face. I couldn't feel it coming so there was no way I could hold it in and it was LOUD. She flew back, almost completely out of her chair, and had this look of total horror on her face. We immediately burst out in hysterical laughter...to the point where we were laughing so hard that noise was coming out but for an occasional snort or two. At some point between giggles and tears she managed to cry out, "You scared the hell out of me!!" and then we lost it again. I needed that comic relief...(I can't believe I'm putting that out there for all to read. Oh well...when you give birth, you lose your dignity so who cares?!?)
As Jackson got older, he and I would make more and more trips out to the city to see them both together or just Lisa if it was during the week. I wanted Jackson to know his aunt and uncle. It was during this time that I started to get to know her a little better. If I had to speak with my brother about something, it was Lisa who I called. She was and still is the communicator between my brother and me. If it's just Jay and I on the phone, there's awkward silence. With Lisa, there's a conversation.
Lisa has an amazing gift...photography. She sees things differently...just like my brother. Between the two of them, they take some of the coolest and most inventive pictures I've ever seen. Having a photographer like that around was great as Jackson got older. She basically chronicled his life with her camera. I've got some of the most incredible pictures of my son thanks to her.

What I loved most about this woman who entered our family was her personality and the way she carried herself. She had such a spark...full of life and energy...full of smiles and laughter. I realized that I liked this girl not because she was married to my brother and because I had to like her...but because she was actually really cool and fun to hang out with. Through her eyes, I began to see things differently as well. She changed how I looked at things. I began seeing things that you wouldn't normally see because of her photography. I became more observant.

But with the ability to see things, I then began to notice a difference in that smile that could once stop you dead in your tracks. The blueness of her eyes no longer seemed a bright blue like the Caribbean Ocean...but more like the dark blue before a storm. Initially it was just little things that I would see. Minuscule really. If you didn't know her beforehand, you would never catch it with your own eyes...but I could see sadness starting to fill those beautiful eyes.

When Warren was diagnosed with ALS, life for Lisa changed. As an outsider looking in, she seemed obsessed with his diagnosis and taking care of him. It began to consume her. The changes that were once so minuscule were now more and more obvious. She lost her brother Paul years before and the idea of losing another brother was just too much. Even when she was smiling...she wasn't.
We started to see them less and less because all of their time was spent with Warren and his family...understandably so. Holidays were the toughest because there would always be the initial talk of them not coming at all and then when they did come, you could tell her heart wasn't there with us. Her body was there but the rest of her was with her brother. In response to that, Jay was always tense as well...worried about his wife.
Since this is my therapy chair, I'll be honest and admit that at first I was upset about holidays. I felt like my son was missing out on getting to know his aunt and his uncle. He wasn't experiencing Christmas like I did when I was a child...fully surrounded by family and by laughter. Suddenly, Christmas was over at 3:00 in the afternoon. I felt that my son was being cheated. I guess when you have kids, you look at holidays differently. You see the magic in their eyes and you want everything to be "perfect." After Warren's diagnosis, it never was. She just couldn't do it. She couldn't physically fake it anymore. ALS was taking her brother and it was taking her down with him.
Then my dad got diagnosed. That first night that I called them to tell them the news, they were both adamant that it was not ALS. They knew all about ALS and dad didn't have it.

When the appointment for our first trip to clinic was made, I found myself struggling internally. Lisa had become so sad and hardened by this disease that part of me didn't want her there with us. Even though she knew more about this than any one of us, I didn't know if I could emotionally handle her sadness that sometimes presented itself as what she calls "pushy." Warren's ALS and my father's ALS were so dramatically different that I wasn't sure if she could make out the difference herself. Looking back at it now, I think that I was so consumed with fear that the idea of listening to what Lisa knew or had to say meant that this was really real. Looking at Lisa was now like looking in a crystal ball for my future and that was threatening in my mind. I didn't want to see that so I shut my eyes and I looked away from her. I began to shut her out. I know...I'm a horrible person...but don't think I haven't beaten myself up for everything I've said so far.
As Warren's disease progressed, you could see the physical manifestations of stress taking their toll on her. As the days went on, her eyes became more and more sad. There were dark circles under her eyes and her skin...well let's just say that if I were a painter and I had to paint the face of someone who was dying inside, I'd paint their face the color of her skin. As the joy was being sucked out, so too was her color. She lost a considerable amount of weight...so much so that her pants would be falling off of her. It was extremely difficult for me to see because if I looked at her, really looked at her, I was only seeing my future....so I continued to look away.
At the end, there was no life left in Lisa. ALS had taken her brother and it took the life out of her as well. It was heartbreaking to watch. I couldn't help but think of the song The Girl With the Weight of the World in Her Hands. That was Lisa. She was not only carrying the weight of her own grief, but she was carrying the grief of her family as well. She was trying to do everything for everyone...except herself. She had the weight of the world on her shoulders and she was drowning.
After Warren passed, there was no hiding anymore. All eyes were turned on my father. We had been able to ignore his diagnosis because of Warren but now we couldn't. At first Lisa and Jay were distant...understandably so. It was too much to have to relive that all over again so soon. They came back though...and Lisa came full force.
Like she did with her brother, Lisa would take over. She was on top of everything. She would show up to my dad's house and suddenly the house was redesigned. It's like she was addicted to one drug, ran out of it and then turned to another drug to take its place. She was intense...and at first, I'll admit, I was put off by it. That isn't how I operate and I was still somewhat in denial. With Lisa, it was in your face. Boom, boom, boom! We have to do this, this and this! He needs this, that and those! She was too intense for me and I began to withdraw myself from her and my brother. In reality, I was withdrawing from everyone.
It wasn't until this Thanksgiving that I finally opened up my eyes and said, "What the f##k, Lisa? What is your problem?" And by Lisa, I meant me.
Lisa was there when my father's blood clot was found and was there when his home care needs became greater. I finally saw that what she was doing was not trying to step on people's toes or be "pushy," she was genuinely trying to help. I saw that she genuinely cared for my father...she was only trying to help. I'm an a$$hole for every thinking otherwise and I'm disgusted at how long it took me to see it.
Over the last 4 months, Lisa has been there almost as much as I have. Each time we're at an appointment, it's Lisa and I sitting there together. Each time the visiting nurse comes, it's Lisa and I sitting there across from one another. I found myself spending more time with Lisa than I did my own siblings. As she did in the beginning of our relationship, she changed the way I looked at things...in particular, at her.
They say there's always a silver lining, right? If I had to pick out the silver lining through this horrible experience, it would be Lisa Beth. The one thing this disgusting disease has done for me is bring me closer to my sister-in-law. Through all of this, I've felt that she understands me the most and understands my feelings and where I'm coming from more than either of my siblings do...more than anyone does. She's walked in my shoes. She gets it.

As my dad's disease progressed, I saw the same physical manifestations that I saw in her, in myself. When she noticed that I had lost weight, all she said was,"You've lost weight. Not eating?" "Not hungry," I said. She just nodded. She didn't lecture me...she understood me.
When I am upset or when I need to talk to someone, I find myself turning to Lisa Beth. I either call, email or text her. That has never been the case before...but now it's reality. I'm more connected to her than I am to anyone else when it comes to this experience. I don't have to apologize for anything I do or say or explain my actions...she just gets it...and I love her for that.

There are times when I feel as if I am The Girl With the Weight of the World In Her Hands. I feel pressure coming at me from every angle and I feel as if I have to be in multiple places all at the same time. I feel like I can't do enough and I feel extreme guilt. However....if I look back over my shoulder when I feel like the weight is just too heavy, I see that I am not alone. I see that there is someone there helping me to carry this load...and her name is Lisa.

xoxo, Sissy. You have no idea how much you mean to me.


The Girl With the Weight of the World In Her Hands
Indigo Girls
She won't recover from her loses,
She's not chosen this path, but she watches who it crosses
Maybe move to the right, maybe move to the left
So we can all see her pain she wears like a banner on her chest
And we all say it's sad, and we think it's a shame
And she's called to our attention, but we do not call her name,
The girl with the weight of the world in her hands.


'Cause we're busy with our happiness, busy with our plans
I wonder if alone she wants it taken from her hands
But if things didn't keep getting harder
She might miss her sacred chance to go a consecrated martyr,
The girl with the weight of the world in her hands.


I wonder which saint that lives inside a bead
Will grant her consolation when she counts upon her need
It makes us all angry though we feign to care
But who will be the scale to weigh the cross she has to bear,
The girl with the weight of the world in her hands.


"Is the glass half full or empty?" I ask her as I fill it
She says it doesn't really matter, pretty soon you're bound to spill it
With the half logic language of the sermon she delivers
And the way she smiles so knowingly at me gives me the shivers
I pull the blanket higher when I'm finally safe at home
And she'll take a hundred with her, but she always sleeps alone,
The girl with the weight of the world in her hands.


I wonder which saint that lives inside a bead
Will grant her consolation when she counts upon her need
It makes us all angry though we feign to care
But who will be the scale to weigh the cross she has to bear,

Wednesday, April 4, 2012

Hey, Jesus...it's me

As a child, I hated going to church. It was the worst hour of my life each and every week. I hated it...but I had to go every Sunday.

I'd try everything to get out of going. I'd fake being sick. Never worked. I tried hiding. Was always found. I even tried watching a mass on the TV one Sunday morning thinking that my parents would allow me to stay home since I had already "attended." Nope. I got two doses of Jesus that morning.

I was so bad about trying to get out of church that when I actually was sick, my parents didn't believe me.
One Sunday morning in winter, my father and I went to church alone together because my mom was out of town. As I went to get out of the car, I stepped on a patch of ice and fell very hard on my a$$. My legs actually slid under the car and I was screaming with pain. Trying to get up was the most excruciating pain I had felt up until that point. (I didn't know about childbirth yet)

My dad walked around the back of the station wagon, took one look at me and said, "Nice try. You're going in!"

He dragged me in for mass even though I was hysterically crying. When we found our seats and I continued to cry from the pain I felt when sitting. He kept giving me that look. You know the one...when you're parents just glared at you because you're making a scene and you know that the second you're not in public, s##t's gonna hit the fan. That one.

Now if you're a Catholic like me, you know how mass goes. Up and down. Up and down. Up and down. I'm not sure which was more painful...the standing up or the sitting down. It was horrible.

Finally my father leaned down and looked me right in the eyes and said, "If you're in that much pain, I guess you'll have to just go to the doctor won't you?" Up until then, that's how my parents would catch me when I was faking. I hated the doctor as much as I did church. As soon as they would throw out that threat, I'd cave in, "No, no...I'm feeling better now." But not this time. No...this time I looked him right back in the eyes and said, "Yes! Please, daddy!" He straightened up a bit and looked surprised at my response. This was certainly not the reaction he had anticipated. He had thought I was giving my finest performance to date up until that moment...but now he knew that I might not be faking.

Did he let me leave though? Nope. We still stayed and I continued crying as I stood up and sat down. Stood up and sat down. Up and down. Up and down. Each time more painful than the last.

I continued to cry the rest of the day and night, not even going out to play with my friends. The next morning I was taken in to see Dr Mundee, my pediatrician.

"She broke her tailbone" the doctor said. JUSTICE!! "I told you I wasn't faking!!" I yelled. I laid in to my dad that night like nobody's business. Yes, I hated church but damn...I wouldn't make that much of a fool of myself.

Like all like public school Catholic kids, I had the pleasure of attending CCD classes as well as church. That was a blast, let me tell ya. I swore that I'd never make my children go to these horrible classes when I was a mom...but ask Jackson where he is from 4:30-6:00 on Tuesday evenings. What a hypocrite. But I digress...

I made my way through the Sacraments as a good little Catholic girl should. I think I blocked out most of that because I only really remember one...Confession. First Confession. Nothing scares the s##t out of a kid like sitting them down in front of a priest (who might as well be God in their eyes) and tell them all the bad stuff you've done.

Most people probably don't remember what they first confessed...but I do.

The night before Confession, I was watching Ewok Adventures on VHS. My dad had taped it for me over the weekend and I was itching to watch it.

When my dad used to tape shows, he would stop the recording once the commercials started up and would resume recording when they were finished. He was ahead of his time. It was DVR or TiVo but in the 80's.

This particular recording, however, he forgot to hit record after the commercials were done. He went through I think 2 rounds of commercials and everything in between once he realized what he had done. As I lay on the shag green carpeting in our family room, I all of a sudden sat up when I realized what had happened. Wait a minute!! What happened to that Ewok?!? I looked over at my dad as he sat quietly on the couch and yelled, "What happened?!? What did you do?!?" He looked at me and said, "I forgot to hit record again after the commercials. I'm sorry, honey."

To say that I went nuts was an understatement. You would have thought he killed my dog with his bare hands. I screamed and cried and really let him have it...and then the guilt set in.

As I lay awake in my bed, I felt horrible for how I had reacted. I felt terrible for yelling at my father like that. But wait!!! Tomorrow is Confession!! That'll make my guilt go away!

As our group gathered  for our first Confession, we had one of two options: sit face to face with one priest and confess our sins or go in a booth and hide behind a screen so they don't know who you are. Doesn't take a rocket scientist to figure out what I chose.

"Pay no attention to the man behind the curtain!"

Ahhh...but Father Hearn was on the other side of that little mesh type window. He was the scariest of all the priests in our church. Damn it! I should have chose face to face! I'm gonna get 1000 Hail Marys now for sure!

I crept into the booth and the little door covering the window was shut. Phew! He didn't see me! I smashed myself as far back against the wall as I could so that when the window did slide open, he wouldn't be able to even see my shadow...and then it opened. It felt as if cold air had flown through that little window and had frozen my mouth so I couldn't talk. Father Hearn cleared his throat to let me know I was supposed to say something.

"Forgive me Father, for I have sinned. This is my first Confession."

"Go ahead, my child," he said.

"I yelled at my father last night because he didn't record all of the Ewok Adventure. That's my sin."

I swear I heard a chuckle come from the other side of the dark window. He gave me a punishment of 10 Hail Marys and I was off. Pretty sure I made that guy's day with my ridiculous confession.

After I went off to college, I stopped going to church. I'm sure there was one on campus somewhere but hell if I knew where it was. Jesus was the last thing on my mind. No...only holiday masses for me!

And it continued that way after I graduated and "became an adult." There was one exception to the rule...911. I went to mass that Sunday because I didn't know what else to do. I thought maybe there would be some answers there...but I didn't find any. I don't think anyone could at that time...but I gave it a go.

In February of 2002, I suffered what I call a severe depression "crash." Life went black there for a few months and it took a long time to get even a sliver of light to shine in. It was during this time that I started attending services at Willow Creek with my sister.

I'm not sure what it was about that place; the over the top productions (because that's what the service really was),the modern day music or what the pastor was saying...but I actually got into it. Me. Into church. If I really want to be honest, I'd say it was the music. It wasn't the Amens I was used to singing in my own church. It wasn't repetitive. There was no old man with a bad comb over playing the organ. These were people my age and a full blown band playing what sounded like rock music...and it actually got to me.

When I began my training to become a yoga instructor, I stopped going to services at Willow Creek and church was once again pushed to the back of my mind. Honestly, I don't think I even went on all the holidays.

Jackson was baptized in the Catholic church and I remember feeling like such a fraud in there. I felt like I wasn't religious enough to pull this off...the priest would be able to see what a heathen I really am. But guess what...they still baptized him.

When I began dating my husband, the holiday masses started back up again. Jackson was put in Catholic school for Junior Kindergarten so I had to attend a few services during that period but other than that, holidays were the only time I would walk into a church.

It's not that I don't believe in what the priest is saying. I think it's more that I have ADD and just can't sit listening to something that I don't necessarily understand for that long of time. That...and the fact that a certain someone and I are having communication problems.

Over the past few years, since my dad's diagnosis was made, God/Jesus and I have had some curious conversations. I've gone from questioning God as to why he would do this to begging him to make it be a mistake, a misdiagnosis. I've told God that I hated him and then turned around begging him to give the world a cure so my dad wouldn't have to suffer from this disease. I've questioned how a "loving God" could create diseases such as ALS...if he loves us so much, why do we have to suffer?

For each time I've said something negative to God, I've also begged for help. I've asked him to slow the progression down so that I could selfishly have more time with my father. I've tried bargaining..."I'll go to mass every single Sunday if you make this go away. I swear I will." But for each time I've called for his help, it hasn't come. Things would only get worse which would spark my hatred for Him. My dad didn't deserve this. How could He do this to him?

This year for CCD, Jackson had to attend a special Sunday night mass. It was supposed to be a family thing but the hubby had to stay home with the baby so it was just Jack and I. Lucky us...we got to sit right up front in the first row.

I don't know what it was about that night...I wasn't on my "I hate God" kick and I came in with an open mind so I could be an example for Jackson. For the first time ever, I actually cried in church. Not a big "ugly face" crying episode... just a "quiet tears rolling down my cheeks" type thing. To this day, I have no idea why that happened. I walked out of there actually thinking to myself, "Huh...maybe I should do this with Jackson more often."

On Christmas Eve, Jackson and I attended mass together again...you know...because it's a holiday...and I'll be damned if it didn't happen again. What was going on with me? Why was I being brought to tears?

I've come to the conclusion that maybe it was not only the situation with my father that brought on the tears, but also my frustration with God. Why wasn't he listening to me? Is it because I don't attend church enough? Is it because of all the trouble I got into in my younger years? Has he cut the line between he and I so he doesn't get the call anymore? Why? Why us? Why won't He listen?

Then it hit me. Maybe I'm talking to the wrong guy. Maybe he's too busy with war and poverty and hunger that he doesn't have time to listen to the prayers of a heathen. Maybe I need to talk to whoever is next in command. Maybe his kid would listen to me and help my father out. What was there to lose?

And so I did it. I gave a shout out to Vice President of Heaven.

"Hey Jesus, you out there?"

No answer.

I left a message but he still hasn't gotten back to me.


Hey Jesus
Indigo Girls

Hey, Jesus, it's me.
I don't usually talk to you
But my baby's gonna leave me, and there's something you must do.

And I am not your faithful servant.
I hang around sometimes with a bunch of your black sheep
But if you make my baby stay, I'll make it up to you
And that's a promise I will keep.

Hey, Jesus, it's me.
I'm the one who talked to you yesterday
I asked you please, please for a favor but my baby's gone away
Went away anyway

And I don't really think it's fair.
You've got the power to make us all believe in you.
And then we call you in our despair,
And you don't come through.

Hey, Jesus, it's me, I'm sorry.
I don't remember all I said.
I had a few, no, too many, and they went straight to my head
And made me feel like i could argue with God.

But you know, it's easy for you, you got friends all over the world.
You had the whole world waiting for your birth.
But now i ain't got nobody,
I don't know what my life's worth.

I'm not gonna call on you any more.
I'm sure you've got a million things to do.
All I was trying to do was to get through to you, get through to you.

Because when I die and I get up to your doors,
I don't even know if you're gonna let me in the place.
How come I gotta die to get a change to talk to you
Face to face?

Friday, March 30, 2012

Anyone Have Any Questions??

As a parent, you know there are going to be questions asked by your children that will make you laugh and some that will make you cringe. Some are annoying and some could be considered "deep" given the child's age when they ask it. Some are asked over and over and over and over and over...and some only need to be asked once. Many will be forgotten and then there are those that knock you off your feet...solidifying them into your memory.

When your child is young, there's the all-time parent favorite: "Why?"
Everything is "Why?"
Once you answer the question, it's followed by another resounding, "Why?"
It's quite maddening, really...but we all survive that stage and then we're off to the next one.

The next major obstacle? Body parts. There's a fun one.
"Mommy...what kind of a pee pee do you have?"
"Mommy...why do you have to sit when you pee?"
"Mommy...are you peeing out of your butt?!?"
"Mommy...why did God make girls so weird?"
"Mommy...why does my pee pee stick straight up?"
"Mommy...how do I make it go down?"

I'll tell ya what-when these questions started being thrown my way, I was never so happy to be remarried. Each time one was tossed out there, the immediate reaction would be, "HONEY!!!! Jackson needs to talk to you!!!!"

First grade has produced some great questions for dinner conversation as well. Over this past school year, our meal times sound a little like this:
"What does f##k mean?"
"What does s##t mean?"
"What does b##tch mean?"
"What does a##hole mean?"
"What does it mean when you hold up the middle finger?"

It's hard not to laugh when he says these words with such conviction...but my reaction is always the same. I look across the table at my husband and say, "It's all yours, babe" at which point I usually get up to do the dishes. Gotta love the kids in class with the older siblings who are enriching my child's vocabulary.

While we've gotten some absolutely hilarious questions from Jackson, we've also gotten some that are difficult to handle because they're just so deep.

For example, when my father's brother died, Jackson attended the wake with me. He had been to a few before but was too young to really pay attention to what was going on. This time was different though.

Before arriving, I had explained to him that Uncle Marce had passed away and was now up in Heaven. After the basic questions regarding how he died, Jackson seemed content with the answers given and changed the subject to Mr Men as only a 5 year old could.

When we entered the funeral home, I went up alone to pay my respects and say goodbye to my uncle and left Jack in the back with my siblings. It was an open casket so when I came back, I saw Jackson staring at the body. Then he rocked me with the question he asked:

"If Uncle Marce is dead and is in Heaven, how is he over there? If he's in Heaven, are we in Heaven too? Why is his body over there if he's supposed to be up in the sky in Heaven?"

I guess I wasn't prepared for such deep questions from a 5 year old. You just assume that they don't pay attention to everything. You don't realize just how much they are processing. You don't realize that you're going to have to talk about the afterlife and the concept of your soul leaving your body to such a young kid. Such ideas are hard for a kid that age to comprehend...and it's almost as equally difficult to try to explain it to them. After all, if they can't see it, it's hard for them to understand it or believe it...unless of course it's Santa Claus or the Easter Bunny.

When Warren died, Jackson and my nephew attended the wake. Jackson was now 6 and he better understood what was going on. Michael, on the other hand, was just learning about these things.

Lisa Beth took the kids up to the casket and began answering their questions. At one point, I turned around and caught sight of the casket out of the corner of my eye. All I saw was Jackson and Michael up there...Lisa was blocked by the line of people paying respects to the family. My eyes grew wide and my mouth dropped open as I saw both kids putting their hands not only into the casket but on Warren's face. With the image of my child and his cousin knocking over the casket in my head, I was just about to yell out for Jackson to stop when I saw Lisa Beth. She was encouraging them to touch Warren so they wouldn't be afraid. She answered every question they lobbed at her.

After Warren passed away, Jackson began asking more questions about how he died: about ALS and what it did to the human body. He wondered how your muscles stopping would cause you to die. He wondered if it hurt. He wondered if everyone got that disease or how you knew if you were going to get it. He wondered if it was contagious like a cold.

During a car ride to his religious education class one Tuesday afternoon, Jackson randomly asked what disease Papa had. Up until this point, he knew there was something wrong with Papa, he knew that he was sick, but he didn't know exactly what it was that was making his grandfather change from day to day. I looked in the rear view mirror and said, "Papa has ALS." You could see the wheels turning in his head and shortly thereafter, he followed up with, "What disease did Warren have?" I responded, "ALS." The topic was dropped as we pulled up to our church.

Shortly before Thanksgiving, my father was admitted to the hospital with a blood clot in his right leg. During his stay, I spent numerous hours at the hospital with him...sometimes late into the evening only to be back again early in the morning. When he was released, I spent much of my time running back and forth from my house to my dad's to be with him or help with his care. It was during this time that my emotions started to get the best of me and most of the time I was home, I was crying. I spent more time crying than I did not...and Jackson was paying attention.

On Thanksgiving evening, after I had left my parents' house to be with my in laws, I received numerous calls from my sister who had the night shift caring for our father. My dad AND my mom were having issues and there was a possibility that yet another trip to the hospital was in order.

Once we were home and I was in bed reading to Jackson, my sister called to say that I either had to go to the hospital with my mom or come to the house to be with my dad. At that same time, the baby was awake and screaming from a massive infection he had contracted. My husband was banging on the wall for me to come help with Lucas, my sister was going to call me back to tell me if I needed to come help with my parents and overwhelmed, I began to cry.

As the culmination of stressors began to reach a boiling point, it hit. Jackson turned to me and said,
"Mommy...is Papa dying?"

Bang, bang, bang. My husband hit the wall harder, begging for me to come help him...but that had to wait. I had to catch my breath and quickly figure out what I was going to say to my son.

I put the book down, rolled onto my right side and looked him in the eyes.
With tears streaming down my face, I said, "Yes, Jackson. Papa is dying."

It was quiet for a moment...except for the hysterical screaming coming from the room next door...and then I saw my child's eyes fill with tears.
"But I don't want him to die, Mommy." he said.
"I know," I said. "I don't want him to die either, Jack. He's my daddy."

Jackson moved closer to me and put his head on my chest. We laid there crying without words for what seemed like an eternity. I finally couldn't ignore my husband's banging any longer and I went to help with Lucas as my husband traded places with me.

From that point on, Jackson began asking many questions.
"When is Papa going to die"
"Will it hurt him?"
"Will he die before Christmas?"
"Will he die before I turn 8?"
"What muscle is going to die next?"
"Where do you go when you die?"
"What's Heaven?"
"Will Papa see his brother in Heaven?"
"Will he see his old pets?"
They went on and on. Each question became more and more difficult for me to answer as my own grief was boiling over. When I cried, he'd cry. When he cried, I cried even harder. It was a vicious cycle.

It came to the point where we had to decide how forthright and honest we were going to get with all this information. Were we going to tell him the absolute truth? Were going to sugar coat things? Were we going to keep some things from him to protect him? How the hell were we going to handle this?

I thought back to when I was a child and the first real death/funeral I remember. It was my father's mother. I don't remember everything...just snippets really. The clearest memory I have is me inside the funeral parlor, just outside the room where my grandmother's body lay. I was looking up at her name on the door and I made the sign of the cross (because I had just learned how to do that and I thought, "What the heck? This seems like a good time to do it.")

After I made my little sign, I looked into the room and saw my father standing there talking with someone I didn't know. He was crying. It was the first time I had ever seen him cry and it scared the hell out of me. He was so strong...how was he crying?

I had no idea what death was. No one explained anything to me. Because I was the youngest of three children (and by youngest I mean WAAAAAAAY youngest) people liked to keep things from me. I was sheltered a lot of the time and didn't know half of the stuff that was actually going on around me. This was no different.

Not having any idea what was truly going on in there besides it possibly being a good time to show my new cross trick, I became scared when I saw my father in that state. This whole death thing must be really bad and really scary if it's making him crack like that. I had no idea about the concept of Heaven and that death could be seen as something not scary but more a pathway to a new journey in a beautiful place. All I saw was that it was sad and scary...and so that's how I viewed death.

I wanted something different for Jackson. I didn't want him to be scared. I didn't want him to fear it or be confused by it. I wanted him to know that some people believe there is something beyond death...something beautiful where there is no more pain or suffering.

But how do you explain all that? I'll  tell ya how...you go get books from the library!

We looked up some titles that were recommended and came home with a bag full of books about death, dying, the afterlife, what happens to you when someone you love dies, Heaven, etc. You name it, we read about it. Actually, my husband read about it with Jackson. I tried but couldn't handle it. I would cry to the point where he couldn't understand what I was saying half of the time.

The books were actually very helpful. They answered every possible question he could think of. Don't get me wrong, he still managed to ask questions but we now had ideas on how to answer them. We were (and still are) totally honest about what is happening. We hid nothing...sugar coated nothing. We told him death wasn't something to be feared...it happens to everyone...it's a way of life...everything and everyone dies. We talked a lot about Heaven and he would tell us what he envisioned Heaven to be like.

Jackson believes that when you die, you go up to Heaven and meet God. When you arrive, all of your family who died before you is there waiting for you because God called them on the phone to let them know you were coming. When your family came, they brought your pets too. As soon as you get up there, the doors open and there's your family with God and a few angels and they all show you around the place. He also believes you're reunited with things that you lost. (Jackson lost his security blanket last year in Florida, a blanket that he calls Boo, and he asked, "Do you think Papa will find Boo up in Heaven?" Wanna guess how hard I cried on that one?)

Our only flaw in this was that we might have discussed it too much because it's all Jackson would talk about. He'd tell his friends, "My grandpa is dying." He'd tell total strangers, "My grandpa is going to Heaven soon." One Friday I got his school work from the week and saw this
For those of you who can't read "First Grader," it says 'My grandpa is going to be dead soon.'

Luckily, I warned his teacher before he wrote this so she wasn't completely shocked.

Jackson noticed when I was upset. I mean, how could he not? I was crying all the god damn time. He'd have to be blind not to see that I was hurting.

One day while walking in his room to turn off his light before we left for the bus stop, I found this:
Again, translation: (On yellow post-it) I love you papa. I'm so worried. I love watching Star Wars with you Papa. (On white paper) Papa is going to be safe in Heaven so don't worry. To Mommy.

My heart broke at seeing those two pieces of paper. So sweet, yet so sad at the same time.

My little boy has done more for me in the past months than I think I have been able to do for him. Yes, I've explained death and my beliefs on what happens afterwards...but he has given me comfort. When I cry, he brings me a picture that he drew to cheer me up. When I think he's not looking or paying attention, I find notes like these where he's reassuring me that everything's going to be ok. He's wiser than his years and his heart is bigger than his body.

While this time has been extremely difficult and talking about my father's inevitable death with my 7 year old has been tough, it has also been cathartic. We comfort each other and we both know that it's safe to be totally honest about our feelings and emotions with one another. It's ok to cry...it's ok to laugh. It's ok to be happy on some days and on others it's ok to be really f##kin pissed off. It's ok as long as we feel our way through this and we do it together.

I know that when the day finally comes that I have to walk into my son's room and tell him that Papa is gone, it'll hurt him more than anything he's felt in his 7 years on this planet. I know that no matter how much we prepare for it, it's still going to hurt. I'm not stupid...I know that nothing will ever fully prepare one's self or a child for such a loss.

What I DO know, however, is that when Jackson is at my father's wake and he sees his mother crying...he will not be afraid. He won't feel what I felt when I was a child and I saw grief written across my father's face. Jackson will know that mommy is crying not because she is scared of death but because of the loss in her heart. He'll know that while mommy is crying on the outside, she's also happy that Papa will no longer be in pain. He will know that behind those tears, mommy knows that Papa is up in Heaven running on those big, fluffy clouds, chasing after his big brother, Marce. His legs will no longer be in braces and he will no longer be confined to a wheelchair.

No...Papa will be running as fast as his legs can take him.

That is without question.

Wednesday, March 28, 2012

My Finest Masterpiece

I've never been the academic type. My strengths were in the fine arts. I can carry a tune, I dabbled with musical instruments (but I got bored and quit) and I've got a knack for drawing and painting.

I've sang and painted for money throughout my adult life. There have been moments when I was really proud of myself for those talents...like being able to sing at Warren's funeral and not crack. I've won awards and contests for my voice and I've sang at the weddings of some of my dearest friends...

But my biggest masterpiece, the thing I am most proud of, wasn't sung behind a microphone or drawn by hand. The masterpiece I am most proud of was created on July 27, 2004...and his name is Jackson.
When I found out I was pregnant, I was joyful and scared all at the same time. I'm the youngest of three children...I had no experience with babies. Until he was placed in my arms at 5:19 am on that Tuesday morning, I don't think I had ever held a baby before. When I looked down at that creation I had made, my heart stopped and my breath was taken away. I had finally felt what true love feels like. I was forever changed.
My whole family was there for his birth. It was quite a party...minus the party mood. As I mentioned before, there was a lot of tension during my labor. My mother, my father, my sister and sister in law as well as my friend Lizz were all there. Even my cousin Dina made an appearance.

The one person who was not there was Jackson's father...and that's because I wanted it that way. We had separated when I was 6 months pregnant. I survived the pregnancy on my own, without a partner, and I was going to survive the delivery on my own as well. It caused some tension so the air was thick throughout most of my labor...and then he made his grand appearance.

Once I had held my new son in my arms and had finally seen the little being that had been trying to break my ribs for 9 months, they took him away to clean him up. It was during this time that my father was brought in the room to see his first grandchild for the very first time. When he entered the room, he still didn't know what the sex was...and then he saw him.
I watched from across the room as my father laid eyes on Jackson for the first time. After 26 long hours, there was finally peace in the room. Well...there was screaming from the baby but with the adults there was finally peace.

I saw my dad fall in love that morning. You don't see that very often...it will stick with me forever.

"You have a grandson!" they told him.
He beamed.
"What's his name?" he asked me from across the room.
"Jackson Joseph." I said.
My dad's face softened as he realized his first grandchild was named after him.
"Thank you," he said with a crack in his voice and a small smile on his lips and he looked back down at that little, pink body before him.

True love.
From that day on, Jackson and my father had formed a very special bond. When I came home to an empty house with my new baby, my family rotated in shifts to come and help me. There was still chaos and friction once I got home...but my father always stood by me. He may have questioned my choices and perhaps didn't agree with them, but he never once turned his back on me. He never made me feel bad for the choices I made or how I was dealing with the situation at hand. He was at my house every day and numerous nights.

I didn't have a husband to turn to. I didn't have that rock that most women have when they come home from the hospital with a newborn...but I had my dad. HE was my rock. HE was the one I turned to and he never once turned away when I did. He became the male role model in Jackson's life. He was not only his grandfather, but in a way he was acting as his father too.
When Jackson was 5 weeks old, we moved in with my parents because my ex husband kicked us out of our marital home. We lived there for the first three years of Jackson's life. During this time, the relationship between my father and my son grew stronger and stronger. My dad would walk him for hours on end around the house trying to get him to sleep. He was the only one who could get him to go down for a nap and the two of them would sleep together on the couch...my dad's arms going numb from not being able to move so as not to wake the baby. It was adorable to watch.

My father adored Jackson and Jackson absolutely loved him in return. They were the best of friends.
Whereas I remember my father being the disciplinarian, he was a gentle giant with my son. He jumped at every opportunity to be with Jack and he never raised his voice. The man that used to spank me when I got out of line would become emotional if he thought I was being too hard on my son. I never once saw a look of fear on Jackson's face when he was with my dad...he knew he had him wrapped around his finger. My dad knew it too.

When we moved out, it was hard on my dad. No longer was he going to see Jackson every morning when he first woke up. No longer would he hear the sound of little feet running from one end of the house to the other. No longer would he hear, "PAPA!!!" being shouted from the other room. He was no longer going to be present for all the "firsts" still to come. The little being that he had grown to love so strongly and had become so accustomed to seeing each and every day was no longer going to be there cuddling with him as the watched cartoons.


The house was once again silent...

But distance can't stop a love like that. The fact that they were no longer in the same house had no effect on their relationship. In fact, it might have made it that much stronger. They would talk on the phone almost every single day and if they didn't talk on the phone, Jackson demanded that we go visit. He would beg me to let him stay there while I left so he could have alone time with Nani and Papa...which really meant he wanted me to leave so they could spoil him rotten.
And spoil him they did. They still do.

Over the next seven years, nothing has been able to dent that bond the two of them have. Not distance, not age...nothing. And while ALS has taken many, many things away from my father, it has not managed to take away the love Jackson has for him. Although my father looks different and his body has changed drastically, Jackson still sees him as his Papa...he doesn't see ALS. He is not scared of the changes that have taken place over the last few years. He loves Papa as strongly as he did when he was a baby. More even.

There are many reasons why I love my child...many I can't even put into words...but the fact that he looks no differently upon my father, the fact that he's able to love him unconditionally and not be afraid of him as most children would be...well that's why I love him the most. The fact that he brings immense joy to my father each and every time they talk on the phone or see each other in person, that makes me love him more than he will ever know.

There are many times when I doubt myself and how I parent my children...especially Jackson since he's my first go at this thing called Motherhood. I criticize myself for what I consider to be mistakes I make each and every day...but Jackson's love for my dad, the way he looks out for him and goes out of his way to let Papa know he loves him...well that just shows me that somewhere along the line I've actually done something right.

It's not the obvious things that make me beam and brag over my son. It's his heart. It's his ability to love...an ability that isn't taught in school or learned on the playground. It's something you're born with.

That heart that lies in that seven year old body...I put that there. I created that.

He's my finest masterpiece.







Friday, March 23, 2012

Guilty as Charged

I've never really been one to do something wrong and not feel guilty about it afterwards. Even the smallest things I do will not sit right with me. I'll constantly question what I'm doing or how I'm handling myself. On more than one occasion, people have accused me of beating myself up a bit more than needed.

Well...guilty as charged.

My first memory of feeling guilty was when I was a young tomboy, although I don't remember the exact age. My friend, Andrea Koeniger, and I had picked all the apples off of my neighbor's prized apple tree. I was the one doing the picking and she was the one holding all the apples. When Mrs Blim stuck her head out the window, it was Andrea who looked guilty because she had the evidence in her hands. Mr Blim came running out of his house and dragged Andrea all the way home where she proceeded to get in trouble...and I believe was then forbidden from ever playing with me again.

I came into my home and not one word was mentioned to my parents by the Blims of my involvement. I remember sitting in the family room, watching track and field something or other with my parents and for whatever reason, there was one of those water coolers that has the spout in it sitting next to me. I remember playing with the white button on the spout as the guilt of my actions ate me up minute by minute. I can still actually feel the button on my finger as the guilt consumed me.

Finally, enough was enough. I couldn't take it anymore. I felt like I was going to vomit from the guilt...and then I did. Not regular vomit though. No...this was verbal vomit as I confessed my wrong doings to my parents.

When I was done, I felt a huge sigh of relief...until I looked at my father's face. Oh boy...this wasn't gonna be pretty. What had I done?!?

He marched me right upstairs and into my room, made me pull my pants down around my knees and bent me over his lap. I think you could hear that spanking throughout the entire town of Northbrook...along with my cries of agony.

When he was finished, he made me go into their bedroom and look at my little butt in the mirror so I would always remember that day and I wouldn't be tempted to do it again. I hobbled into their room with tears running down my face, went in front of their big mirror, turned around and pulled my pants down around my butt so I could see. Instead of my flesh colored fanny, I had enormous red hand prints all over my ass. I can still see those hand prints to this day. Think I ever picked apples again? No sir. He made his point loud and clear.

I think the amount of guilt I've always felt was normal...that is until I became pregnant with my first child. The minute I found out I was expecting, I felt guilty about EVERYTHING!! From what I ate to how much I was teaching to how much I was or was not exercising. EVERYTHING!

When my marriage fell apart 6 months into my pregnancy, I was made to feel guilty by others. Everyone always questioned me and how I could be the one to walk away with a child coming. How could I do that to my poor baby? How was I going to survive on my own? Even though I knew I was doing the right thing for my child and me, I still let others put cracks in my strength.

The day I went into labor was one of the worst days of my life. Not only was I in horrible pain, there was also a lot of controversy surrounding my delivery because I did not let my ex husband know I was in labor and did not let him into the delivery room. Some people felt strongly that I was being selfish and should think about his feelings and of my baby. They thought the father should be there no matter what had transpired, no matter what safety concerns arose and no matter what I, the one in terrible labor, thought was right. So not only was I in the most pain I had ever experienced in my entire life, I was also made to feel guilty for putting myself and my child first. What should have been an amazing day with beams of light from Heaven shining down and angelic voices singing out turned out to be a complete disaster. In fact, the whole hospital stay was a nightmare. Drama upon drama. Guilt upon guilt.

When I got home with my new son, it continued. My decisions were called into question by many people and things were said to me that were very hurtful and will go with me to the grave. One of the only people to stand by me though, regardless of his feelings, was my father. He came and helped me take care of my son both day and night and reassured me that if I felt it was the right decision, then it was the right thing to do. He let me know that he loved me no matter what-that I was his daughter and I came first. No one else or their opinions would change his love for me. I'll take that with me to the grave as well.

When I became a mother, the guilt got worse. As a mother, you feel guilty about everything. Not cooking dinner, what you did cook for dinner, did you dress your kid warm enough that day, did you dress them too much. You let your kid eat candy, you broke their heart because you said no. Every time your child cries, it tears your heart out. If I lose my temper...look out. Not only is Jackson in his room crying, I'm in my room bawling because of what I did to him. Every single thing I do on a daily basis I can find a reason to feel guilty about...and then I start to beat myself up. It's really a good time.

As my father's disease progressed and I spent more and more time there at their house, the guilt intensified. I can't ever find that happy medium.

If my parents call because they need something and I can't go, I feel terrible because I'm unable to help them. If I do go, I feel bad because I'm bailing on my family. I feel guilty because my little one spends so much time with the babysitter and doesn't get any time with me on a particular day. On nights where I've had to stay at their house, I feel guilty because I'm taking away from time I could be spending with my husband who I don't see during the week. If I don't go to stay with them, I feel terrible because I'm not doing all that I can to help.

It's a vicious cycle. There's no end. You're damned if you do and damned if you don't.

I blame this all on my grandmother, really. When I was born, she told my parents that they didn't have to worry--now that they had a young daughter (me) she would be the one to take care of them when they were old. She plotted out my destiny in a way I guess. Thanks to that statement almost 37 years ago, I now feel guilty if I'm not doing just that...helping to take care of them. So thanks a lot, grandma!

At the end of the day, I'm not going to be able to completely change my emotional make up...no matter how hard I try. (And believe me, I've tried) I will always second guess myself. I will always feel guilty about something and then something else two minutes later. I will always scrutinize my actions and feel bad. It's just how I am.

What I've come to realize along this journey is this: the way I've chosen to walk my path during this ordeal will cause me less guilt when all is said and done and that's what's most important. While I feel pangs of guilt when I'm away from my family here and there during the week or weekend, I'll still have time with them when I get home and in the future. They're stuck with me. The time that is in jeopardy though is that with my father.

Five years from now, I don't want to look back at this time and say, "I should have done more. I should have spent more time with my dad. I should have helped them more."

Five years from now, I'd like to know that I did everything I could to make the last years of my father's life more enjoyable or as easy as possible. I want to know that I did everything in my power to help him. I want to know that I spent as much time as I could with him. I want to be at peace with his death when he finally finds peace himself.

So call me crazy. Say I'm too hard on myself. Say I'm consumed with guilt. I'll agree with you. I'm guilty as charged...but when this horrible journey is over, I won't have guilt surrounding my father's death. I'll know in my head and in my heart that my father knew just how much I love him...that I never gave up on him...that I never put anything or anyone else in front of him....just like he did for me in 2004. He'll go to the grave knowing that just as I'll go to the grave knowing that my father never gave up on me. When he's started on his next journey, I'll know how much he loved me and he'll know that he meant the world to me in return.

I owe him that.

So bring on the guilt! I've got drugs for that now...but the guilt will have an end. There will be peace one day....

Until my kids become teenagers.