Thursday, May 8, 2014

normal

I can remember being as little as 5 and what it felt like to be in a room of extreme feelings and total silence.  Palpable loss and grief, but yet no words.  After my brother died, our life was often lived appearing to be "normal."  I am not sure what it should have looked like.  I guess one would picture everything black, bleak and lots of crying.  But, in fact, that wasn't so.  Life was life.  My sister and I bickered and exchanged deals between the vents in our rooms after arguing; debating who would admit they were wrong and apologize to appease our parents and relinquish the punishment of "go to your rooms!".  We ate dinner and often complained about my mom's latest health food creation.  I often stared at a weathered board on the wall in our kitchen that started with the words..."give us this day...".  I never knew what exactly that meant, yet another underlying theme in a silently chaotic environment.  Silent chaos, seems like an oxymoron, but often fits perfectly.  Sometimes life is so painful and tragedy so deep, there aren't any words. 

There is something about the phrase, "I don't know how you do it" that gets me everytime I hear it.  It never quite sits right with me.  How do any of us do anything after a sudden loss, tradgedy or unexpected event in our lives?  There is no handbook.  The fact of the matter is, from a very young age I knew loss.  I knew pain.  I knew tradgedy.  I knew that it doesn't look any different then "normal."  In fact, in most families, in some way or another,  it is normal.  

I have been struggling lately with silent chaos.  I am not a religious person.  However, spiritual yes, I do believe that we all have a purpouse and life gifts and it is our responsiblity to find them and use them for the betterment in the world.  I do belive that all of us have lessons to learn and our daily behaviors increase or decrease those lessons.  I don't know why, how or where I learned or believe these things, I just do.  Can't really explain it.  Something in me, always.  I think one of my lessons involves letting others in, being vulnerable, truly developing relationships that lean on each other, not just letting someone lean on me.  It doesn't sound difficult, but for some reason, it's nearly impossible for me.  I find myself a mess when someone does something for me and I can't immediately repay the favor.  So, I have been practicing.  But, this is where the tricky part comes in.  How do you tell people what you are really going through?  Do you send out a mass email?  Call each person and deliver the news over hour long conversations, "hi, my son is having yet another surgery, what are you having for dinner?"  It's tough.  I don't like to be a downer, a buzz kill, a drama queen.  I want to be normal.

I want so badly to not talk about the difficult part of our lives, that radiates most of my thoughts.  I don't want to focus on all that we could have, when we have so much to be grateful for.  I want to point out the great things the kids are doing, not focus on the never ending tantrums and surgeries.  But, I also want to be real.  I also want to be honest.  And honestly, this shit isn't easy.  I immediately follow it up in my own head with, "come on Grace, it's not that bad."  It's not.  It could be infinitely worse.  That is true.  But, it could be easier and better.  That is true too.  So, I guess I am learning.  How to admit something is bad or difficult without losing my "normal" title.  Ha.  So funny what we hold so tightly to.

My sweet friend dropped off a book today, Zach Sobiech's mom wrote, "Fly a little Higher", I have been reading it since.  Well, between, giving a baby a bath in one hand, book in the other.  Tears streaming down my face.  Nods of familiarity pulsing through my blood.  Audrey asking if I had seen the "Chicken Little" book while I was reading about their finding out about Zach having cancer.  They had found out and Laura diligently called every friend and family member, one by one, cancer, cancer, cancer flowing from her tounge.  I thought, that is what I can't do anymore.   I can't keep making the call.  She then so beautifully illustrated how they all sat down that same awful day and ate dinner and chatted about life in one way or another and well, life went on.  And it does.  It always does.  The sun still rises and sets.  Breakfast still gets made.  Babies still need baths.  You still need to eat.

I feel always that thing when you walk by someone and you don't know their life.   You don't know if they just heard the words cancer.  They look normal.  You don't know if that car cutting you off just found out their son died.  None of us really know the silent chaos that may be happening right at this very moment. 

An update on EJ.  He had a brain and spinal MRI and then surgery for undecended testes, it was over 5 hours and it seemed like eternity.  At the same time, it was easy.  My extrordinary aunt (who is in the throws of getting her masters full time, working and doing her practicum) insisted on helping and bringing me to the hosptial at 530 AM with EJ, so Jeremy could get the kids off and meet me there later.  I insisted she not do this and she insisted she did.  I am so glad she did.  It was nice.  Nice to let someone in.  She had a tougher time than I expected.  Somethings, like hospital admissions and procedures you become somewhat numb to at this point.  It was bizzare almost to see it through a "newcomers" eyes.  It was a great distractoin once surgery began as we just chatted about all world topics, as we typically do and soon enough hours had passed and Jeremy was there.

The results of the MRI were what we were anxiously waiting for.  We would have to wait through Easter weekend, which I wasn't happy about, but did provide some relief knowing it wasn't urgent.  The neurosurgeon who calls herself Debbie when she calls, which really makes me love her even more; explained in detail numerous findings from the MRI.  I won't bore you with all of them here.  Basically, his ventricles are still enlarged and extra fluid remains on his brain, but not shunt as of now.  His spine is displaying scoliosis and will need intervention, unsure of how much because of his tethered spinal cord and if we correct that, how much will that help.  So, yes, that leads me to his tethered spinal cord that will need untethering, or in laymen terms, cut.  Last week Jeremy was in CA for major meetings he couldn't change and well I was here with 4 kids and 3 appointments at the hospital with EJ.  Jeremy's mom is literally a saint and took off of work and took Nolan to help- which it did immensely.  I saw the films in person and we discussed some further bladder/kidney testing he would need prior to the surgery and set everything up.  So, now we are here.  His surgery scheduled for May 23.  We will be there for 5 days, which in reality could be a lot worse.  But, ick.  I hate the hospital.  Who likes it?  It seems that shockingly the recovery isn't that bad, it's more the procedure and risk of complications when opening up the spinal column, but I have total faith in his doctors and staff and am confident all will be well.  I just hate it.   I hate seeing my baby with tubes, crying, helpless.  I hate depending on others and feeling needy.  I hate leaving my kids and missing another holiday weekend in the hospital.  I hate appointments and arranging schedules for bad crap.  I hate worrying about it, thinking about it, I hate it.

So, wow that's a lot of deep talk for a Thursday,  but there it is, the good, bad and ugly.  That is how we do it.


Wednesday, April 2, 2014

Roller Coaster vs Merry Go Round

Hi.  It's been awhile.  I am sparing you excuses and digging right in.

I am sure many of my friends reading this will be rolling their eyes with, "Oh Grace back on the Roller Coaster vs Merry Go Round conversation again."  I have been rather obsessed with it lately.

Basically it goes like this.  What's better a life of contentment, peace, and sameness aka Merry Go Round? Or a life of dramatic highs and lows, aka the roller coaster.  I categorize people, well not normally to their face, but in my head as one or the other.  The calm, rational ones usually in the Merry Go Round department and ones more like me, in the roller coaster category.  I am known to have a mood swing or two, just sayin.  In general I have longed and wished to be a Merry Go Round person, it just isn't happening.  No matter how hard I try to keep my mouth shut for any number of minutes, an hour seemingly impossible, I blurt out something, often times completely inappropriate things, leading to crashes in various relationships.  Now, it's not all bad, because with roller coasters, there is always a thrill, a high, an enviable rush and the passion in my marriage is such.  The bonds in my close relationships unbreakable.  The love felt by and for my children, literally a force of nature.  It's that intensity that makes me, me.  So why do I question it?  Why do I analyze it's value and importance to death?  Because that's what I do with a freaking commercial on TV; of course I do it with this!  In all seriousness, my over analytical nature is often times a nagging problem for restless nights and questions that frequently don't have answers. But, still it's interesting.

Will our children grow up and say, "Seriously calm down and stop bickering!"?  Probably.  For where there is true passion and love, there is also fire and ice.  We aren't your average lovey, dovey couple.  We can go to bat for our opposite view points for hours, both stubborn and unwilling to relent.  Jeremy will succumb more than I, no doubt, but don't let those blue eyes fool you, he has equal intensity.  That's not to say that we are without our romantic, loving, soft, side either.  His words and warm embrace can heal my wounds and overflow my heart.  My support and admiration mean the world to him.  We are each others go to person, and we also go after each other.  I wish we didn't, I wish we were less intense.  And I wonder what a house is like with a "traditional" Merry Go Round way of functioning.  Do they have dance parties at 5 on a Tuesday?  Probably not.  Do they tell fart jokes with their 7 year old? I am guessing that's inappropriate after age 18.  So as much as our biting tongues lash out, our hearts engage and fill with every ounce of laughter.  Is that so bad?

Still, is it more valuable to have parents that are in control.  Smile and hug you, are predictable in schedule and emotions.  Are at peace in general with their relationships and generally don't challenge their life circumstances or complain about their environments.  Even as I write that, I feel tense, thinking, "OMG I am SO not that person!!!!!!!"  As Jeremy would say, "There is this color in the world that you should learn, it's called grey."  I realize that Merry Go Rounds do sometimes break and you can get dizzy on them.  But for the most part, how bad can it be, it's a Merry Go Round.  It seems the real danger in life, the risks are on that roller coaster and that is where I get worried.  Before you go freaking out, I am not talking about major things like abuse of any kind, I am talking about yelling and losing it when you have to ask your kids 14 times to brush their teeth or put on their shoes.  Merry Go Rounds don't do that.  They speak in sing song and keep their composure at all times, or at least 95% of the time, much higher than my generously self-given 75%.  

I think the toughest part about being a parent is the constant questioning as to if you are doing it "right".  I don't think there is an answer.  I am sure Graham will never forget when I was blaring Kesha's Timber in the minivan as I pulled up to school to drop them off and he was shouting, "Mom stop it! This is so embarrassing!!!"  I smiled and turned it down just as the button pushed to open the door and spare his 2nd grade boyhood from complete horror.  But my heart jumped, clearing the top of the 1,783 hill that it has climbed.  The slight rush of fun and humor and love that filled the mini; it's in those moments it all makes sense.  I am crazy, this ride is exhilarating.  There is no other way to do this for me, in this life.  I think my focus needs to shift from, is this right?  To, this is our life.   It's a ride, enjoy it either way. 

Thursday, September 26, 2013

connections

I think as parents we all have a theme so to say.  Something that perhaps was lacking in our childhood, or something we really loved about it.  Either way it is an overwhelming force that drives our parenting skills.  I have seen it with friends- where they spend hours of time and energy on athletics and coaching, watching, participating, encouraging their child to do well.  Others are the same way with music; art; and of course academics.  I thought mine would be the latter.  Academics was encouraged in our house growing up; more than anything else; you were expected to do well and try your best.  It wasn't shoved down our throats or anything, but it was known.  I thought I would follow along with exposing my children to a variety of interests and activities but in the end, academia would take center stage.  Then life hits.  Two children with special needs will take a genius IQ right out of you.  (Not that I have one!)  But, really it makes you re-think what is success?  What is it that I want for my kids?  Most people will blurt out thoughtlessly: happy and healthy.  Well of course.  But, really, what does that mean, happiness. 

I think I finally have my theme figured out.  It all comes down to connections.  At the end of the day, a life filled with education and world travel- alone- means little.  A life filled with riches and material items are fruitless and empty without someone to share it with.  A life filled with peace and tranquility is simply boring without any social interaction.  At the end of the day, that is the most important thing.  How to be a good friend and maintain healthy, happy relationships.

I can't say I am a master at this, it takes effort.  Thinking and doing things that don't necessarily come naturally to me.  I am opinionated and blurt many things out without thinking.  I speak in generalizations and harsh tones often.  I am high maintenance and like to eat and go to certain places.  I mean- don't you want to be friends with me?  That's it.  That's my point.  I have had to learn how to compromise, how to extend myself past my own crap to get to the best part of a friendship.  It ain't easy.  And still I am learning, I am sure I will forever.  And so, that's what I have been talking to my kids about.  That is what our focus is here at home.  Have you been kind?  Is that a nice thing to say?  Would you want a friend like you?  Who did you play with at school today?  Did you share?  Did you let other people make choices and help them feel important?

Graham came home last year off the bus and this was our conversation.

G: Patrick hates me.
M: Graham we don't say that word.
G:  I know, but he does.
M: Why would you say that.
G: Because he doesn't want to sit with me on the bus unless no one else is around.
M: (heart breaking) Well that is his choice.  What is your choice?
G:  To keep trying to sit with him.
M: Well do you want a friend that only likes you when no one else is around? 
G:  No
M:  Do you think Patrick is trying to be mean or simply wants to play and sit with someone else? So what could you do?
G:  Sit with Luke; that's what I have been doing; but I want to sit with Patrick
M: So you only like Luke when Patrick won't sit with you?
G:  Yeah
M:  How do you think that makes Luke feel?

It's tough this friendship business.  We have all been there, people we click with more naturally that we would rather be with or sit with on the bus.  What is the right thing.  To just sit with someone if no one else is around?  To sit with someone you don't really like all that much, but at least they always like you?  Really though, it happens in adulthood.  I have found what I have learned is it's about liking and loving the people you are with in that moment.  Appreciating them for who they are right there.  I can't tell you how many times I have been sat next to someone in a large group and I sigh internally and think "oh great".  But, lately I have been learning what feels good to me isn't having the best conversation- it's finding a common ground and interest with that person anyway.  It doesn't always work out, but it works better, if I am not thinking about what fun I could be having down on the other end of the table.  It's different.  But it's still fun.  I want them to learn to cherish all of their friendships and connections.  That all the effort in life shouldn't go to just pleasing yourself or money or success or hockey.  But, in fact one thing you will never look back and regret is forming a relationship and connection to someone else. 

I don't know how to teach that in everyday ways.  I don't know how to ingrain that into their brains.  I only can show them through my efforts, that being vulnerable is worth it.  That taking a chance and talking to someone you don't think is "cool" sometimes turns out to be- way cool.  Sometimes it doesn't.  Sometimes people reject you.  They look at you like a freak and don't want to take the time to know you.  Sometimes people simply don't click and get along and that's fine too.  It doesn't make them bad or mean.  It also doesn't make you bad or mean.  It just simply means it's time to move forward to a new relationship. 

All I know is never in my life have I felt more supported and enveloped in love and friends have everything to do with it.  It is pretty spectacular to know that they love me for me.  Not for only parts of me.  Not that they can't get irritated with me.  Not that we don't see things differently sometimes.  Not that we aren't worlds apart in some arenas of life.  But, still we connect.  We find interests, common bonds, emotions and connect.  I love the diversity of my friends.  I am proud that I have some with chickens and goats; some living in high rises; some with 5 kids; some with none; some married; some divorced; republicans; democrats; atheists; Catholics.  You name it- they stretch a long divide.  I love them and am so grateful they stretch to reach me too.  They say you are the 5 people you spend the most time with.  It's important this friendship business.