Monday, February 25, 2013

happy times

This past week was FUN!  So many memories that I could probably write 4 posts, but I'll save you the time and cram it into one!  The week started off busy, busy, busy.  Jeremy still working his tail off and basically from 6 am until midnight work is on his mind, it gets old, but this weekend we got to reconnect and oh how awesome that is.  What is it with your hubby home but working all the time- it's worse than him traveling really, because you fantasize that if he were home, he'd be helping!  Anyhoo.  A dear friend that I connected with about a year ago after a sudden birth diagnosis had left her in shock and awe and struggling with her new definition of life and a child with down syndrome.  Boy, how far she has come.  We randomly send emails and check in and she sends me the sweetest hand written notes- seriously what's better than a letter from a friend?  But, this was only our 2nd time meeting up for dinner and drinks.  It was spectacular.  She is such an amazing woman.  I urged her to write her own blog- selfishly so I could connect with her more frequently and also because she has so much creative and insightful energy to share with the world.  One day Amy, one day.  We could have chatted for hours it seems.  Topics ranging from shallow house building projects and the deep crevices of our childhoods.  On a side note she and her hubby heat their entire house with wood- yes, her real life lumberjack hubby chops and fills their hearth to heat their home daily, sooooo impressive and cool and well way out of my realm.  It's so great to have friends who push your boundaries, show you a world outside of your daily grind.  Our next meeting already on the calendar to meet Glennon over at Momastery- she's coming to MN in April, wahoo!  I am sure tears and laughter will be flowing again!

Friday was a crazy day.  Graham had school off and there was a snow storm wreaking havoc on the roads; not assisting me in driving 30 miles one way to drop off the kiddos at my mom's.  The mini (yes I have succumb to the driving a mini van and hate every minute of it!) brought us safely there.  When we arrived my mom had a little creature to share.  Cupcake; their cousins hamster for the week!  The kids were over the top excited.  So much so that Audrey's Kindergarten Orientation was almost chucked by the way side.  Due to the roads I hung out and watched them walk around and put that hamster in every Barbie contraption they could- the poor thing.  Cupcake took it in stride and I am happy to report there was no murder- I was concerned with all the traveling and passing he was enduring.  Off to Audrey's school we went- her big day.  I had been crying and dreading this day for some time, my last "typical" experience with Kindergarten Orientation, but you know what, it was all for nothing.  I am not sure if the driving conditions helped, or the comfort of having done it just a short 2 years ago, either way, it went swimmingly- random word- not sure where that came from!  She did her usual side smile and shy "Hi- I am Audrey" introductions.  She wrapped her little fingers a little tighter with every room we entered.  This time, instead of pushing her forward, I gripped them back.  I feel it too, I thought, I want to hold you forever.  But, as my previous experience has shown me, soon enough she'll be letting go of my hand and running in without me.  She was insistent upon returning to Cupcake ASAP, so again we drove, back to my mom's and dropped her off- where Graham was enthralled and saying we came back to quickly he wanted that rodent all to himself!  Nolan was asleep so I took EJ to his appointment and the kids begged me to spend the night, to my mom's delight.  I knew that meant ANOTHER trip back- lots of driving- getting that yet?  But, how could I refuse?  So, EJ and I went for his hearing test and post tubes appointment.  He failed, again.  He will have a sedated ABR in about a month and more answers at that time.

With the kiddos spending the night, Jeremy and I had a rare opportunity to catch dinner with just EJ on our way to get Nolan and it was glorious.  Just us and our little man.  Yum.  We drove back to get Nolan and spent the next 30 minutes listening to them both cry- sick of the car, as was I.  We stayed up late talking and drinking and well just hanging out- we needed that.

Saturday, gymnastics for Audrey, tearful goodbyes to Cupcake and if you are wondering if a hamster is in our future- Jeremy says NO- NO rodents, period.  I told Audrey just beg daddy.  We'll see how that unfolds. wink wink.  We had plans already in place weeks ago for the in-laws to have our kiddos overnight on Saturday, so off they went to Grammy and Papa's.  Jeremy and I had a minor blip after I broke my iphone screen and a neighbor was set to replace it ran into some issues and lost all the data and all use of the phone, so a couple of hours at At&t and new iphone in hand.  We decided to try a sushi place masu in Minneapolis since we were kid free and ALONE a rare occurrence, as I am a social freak and like to be with others pretty much all the time!  Off we went and we were sat at this awkward two seat table literally right next to another couple.  As we chatted and chowed, the table next to us ordered the most interesting thing I had ever seen- can't even describe it- so I had to ask about it and soon enough we discovered that they live in Stillwater and about 1 mile from us!!!!  Between drinks and raw fish we were having a blast and off we went to the Parlour Bar in Minneapolis TOGETHER!  It was hilarious and random and felt for a moment - minus my muffin top- that we were 20 again.  When we arrived, belly up to the bar was a waiter we know from a restaurant in White Bear Lake that we frequent- it was one of those nights!  After too many drinks- the best one- hands down- The Aviation- we got home and all by 10pm!  So much for watching Argo and staying in- just how I like my fun- spontaneous.

Sunday- We slept in!  What is better than that for parents??? NOTHING.  We picked up the kiddos and completed much needed chores and errands; they went to swimming and then it was my fav night of the year, the Oscars- which were- eh- not the best, but the highlight was my bed mates, who migrated upstairs sporadically throughout the night when daddy was taking breaks or changing baby's diapers.  It's not the most glamorous weekend, but it was chock full of adventure and fun!  It feels good to feel good!

Now I am off to gather up some favor buckets for Audrey's 1/2 birthday celebration tomorrow- did we even have these as kids?

Tuesday, February 19, 2013

wiped

maybe it's this time of year...that's what I keep telling myself...it's dark, cold, dreary, holidays are over and well we need some sun and fun- two weeks to a disney cruise should do the trick.  Lately, my heart is heavy, I seem to have a variety of answers at any given time of day for this...see above; but also the list goes on, maybe it's the weight of a new baby and another diagnosis; maybe it's Nolan's never ending illnesses, one after another, dietary changes, supplements, nothing seems to change his inability to shake the most basic cold, it's exhausting. Hell maybe it's 4 kids 6 and under, someone needing you all.day.long.  Maybe it's Jeremy's demanding work schedule and my obsessive nature that just wants to live in Pinterest and Houzz and meet with our builders every.single.day.  Yes, they are going to end up firing me out of pure frustration!  But, really, it's a combination.  I am on the go- barely making time to breathe and I remind myself that it isn't in fact any of those things and all of those things at the same time.  That's the thing.  I could tell you a sob story of my life circumstance and you know what? You would probably buy it.  I mean I have legitimate reasons to be on the verge of a meltdown....but what I have truly learned through these years of trial is they are no different than my years of non-trial.  Truly, life is what you make it.  Life lies in the moments that pass through your fingers when you are moaning and groaning and throwing your fists in the air.  There it went? Did you see it? 

I remember being 15 and feeling devestated by the loss of my first love.  You know the one that you are for sure going to marry and you have your children named, Victoria and Matthew- ummm not so much.  But, still I can taste that pain, it was real, raw and no one could have convinced me that it was going to end and I was going to feel differently come well...Monday.  The ups and downs of teenage agnst, I have always understood and empathized with and early on in my graduate degree I worked with troubled youth.  A population that many people find obnoxious and ridiculous, I find impressive and bold.  Because they live.  They take each moment as it comes and live in it, truly.  And as you get older that gusto escapes you.  It's not so easy to live in the moment, to be free, wild and careless.  We know better and the consequences that await you around the corner that are much more heavy than the principal. 

The point is, this lull, this down turn, well, it shall pass and I know that now.  The gift of age helps.  The years of waking after your eyes are almost closed shut from swollen tear falling sessions, teach you that morning still comes and you get up again and well, you survive. 

Last week, my favorite blogger, my inspiration, my bff in FL (she doesn't know that, shhh) she gave birth to her son, on Valentines Day.  Of course she did.  She is full of life and love and she really truly is.  A lot of people like to tear her down, say it can't be real, but it is and it can be and I totally believe it to be.  I am not saying she is perfect, of course not, but she works at life.  Living with the gusto that we used to, when we were young.  To see her in that hospital room, kissing that sweet, baby boy.  I have to be honest, it pains me to a degree that harkens back to the day I found out about EJ and his condition.  I hadn't felt that raw, exposed pain in a long time and even while I type, I feel it.  Like a whale has planted his butt on my chest.  I wish I didn't.  I wish that after 7 months I could say that I felt differently.  But, I sit her and think wow, one year ago, I had the world at my fingertips, a new baby growing in my belly and now, I feel shattered, tattered and wounded.  I don't feel triumphant, I don't feel the strength and optimism I did last year.  And yet, nothing really has changed.  That same baby that made me feel triumphant was in my belly and now he is out, he didn't change.  I did.  I have a choice right now.  I am not perfect, far from it.  But, I try despite my circumstances to keep living, going, moving.  The truth is last year life wasn't perfect, it wasn't when I was 15 or 25 or 35, it had it's ups and downs then as it does now.  And that's all this is- a bump on a roller coaster ride that will soon go up.

Saturday, February 9, 2013

bucket FULL

I am sorry, so sorry for the neglect of this blog and writing.  I wish I had more time for it, honestly I do.  I have so many moments in time that I long to grab my computer and listen only to the tip tapping of my fingers across keys and emotions sent to the endless land of the internet.  But, well, four kids has done.me.in.  I can still manage most things, but time for myself and writing; it's taken a huge hit.  I tell myself just write a blurb; nothing long and poetic, but still, even that seems too much as of late.  I can tell you all the normal mom excuses, including but not limited to: our whole household having the "real flu" yes even poor baby EJ.  But, we are on the upswing, without Tamiflu I might add- I could go on for days about that crap!  But, also a surgery, MRI, Jeremy's Q4 at work; it's endless and honestly just leads me back to- sorry!  So, with good intentions I am back, brushing off the dust on the keyboard and ready to share. 

Life has been crazy lately, (read above!) but what really has been crazy is realizing that my mind in a mental state of chaos has a limit.  I don't think I ever knew this.  That even a type A, over thinking freak show like myself has moments that I really don't digest anymore and just sit still.  I think it's going on year three of tragic diagnosis' and bad news about babies.  Eventually you give.  You can't sit and google anymore pseudo solutions- you know the ones that help you sleep for that night but bring you no closer to a happy ending.  At some point you realize your happy ending isn't coming.  I don't mean that in a depressing way, quite the contrary, you learn what you have wanted to learn your entire life.  Live now.  Enjoy now.  Focus on now.  And finally I am.  I am hoping it doesn't take your body or brain three years of bad shit happening to get that point, what can I say I am stubborn and bullheaded!  The strangest thing happened a couple weeks ago and I can't seem to wrap my brain around it.  Before EJ I used to think our bucket was full.  This imaginary bucket that I think we all have somewhere that houses all the bad and good in life, the BIG things.  And well, I thought between my brother dying young, my parents divorce that left me as a 13 year old girl living with my dad and then having a child with down syndrome and then him having infantile spasms, well I thought it was full.  You know like don't come knockin around here for awhile we are good on the hard stuff.  It's odd because I was at such peace with Nolan and life with him, truly, and I am so grateful for that I can't imagine grieving EJ and still struggling with Nolan at the same time.  Anyway, I saw the most random story about JonBenet Ramsey- you remember the little girl who was brutally murdered in her parents basement and left for dead?  For some reason this time when I read it; I had a different focus and that was one of her dad's.  I decided to look into John Ramsey's life story...ok I know I can't write a blog, but can do this crap? So, I found out his mother died when he was around 20 and his dad married his mom's mom! Yes he married his grandma; who now became his step mom? Then he had three children with his first wife and they divorced. Then he married Patsy and they had two children.  When JonBenet was two years old he lost his 22 year old daughter in a tragic car accident.  4 years later he lost JonBenet and worse than that was prosecuted in the media for YEARS for being the murderer- honestly I can't imagine anything worse.  Then to top it all off Patsy- his wife, died of cancer.  I mean COME ON!!!!!!! Is his bucket full yet? 

It struck me, it reminded me that none of our buckets ever really, truly fill up, with bad or good fortune.  At any moment either can strike you and send your train off the course it planned.  This may seem horrifying and exhausting to imagine, but for me it offers comfort.  It reminds me that control, worry, anxiety about the next thing, does nothing.  All that worry does is rob the moment you have right now and takes it away.  I needed that.  EJ has a bit going on right now and his prognosis could very easily take a turn for the worse in regards to his spine in the near future.  Jeremy asked me after my appointment with the nuerosurgeon what does that mean?  I said, "Jeremy, what does any of it mean? If they tell you that EJ will never walk will that help?  If he walks for three years but then stops after he's 8- will that make you feel better? I mean honestly, what is going to help?  It's why I have grown to despise most any and all medical appointments.  I just can't seem to find the point in "guessing" all the time.  Wishing, wanting, praying, hoping, where does it bring us?  Sometimes to good, sometimes not so good.  I'd rather live now.  Now EJ is a happy boy, he smiles and knows he only wants mommy.  I mean he should be in a commercial if anyone else tries to hold him instant tears and screaming and the minute he hits the crook of my arm- ahhhh mama.  It melts me.  It helps me.  It reminds me that walking, talking, passing a test, college, they don't really matter.  Connection does.  Living our life right now has taught me that connection is the reason we are here.  All of us.  It's not about how skinny or beautiful we are, how much money we make, how many promotions we get.  It's about connection.  Understanding that is the key to peace, happiness and that ever elusive contentment. 

For a couple of years Jeremy and I have discussed building a house and I must admit a shallow part of me wanted it fancy, gorgeous and over the top.  The other part of me want our children grounded with quirky neighbors and diversity.  It was a tough call for me.  Jeremy had his mind set on a particular area that I knew our children would be isolated from a world different than that, where a kids biggest problem was what pool to swim at.  I have to admit to caving and going forward with the latter.  I decided we have enough diversity right between our own four walls and why not bring it to that uber perfect neighborhood?  I crave something to throw myself into that is fun, exciting and well shallow.  And that's ok too.  I need a break from the heavy right now.  I am giving myself that.  We had 7 appointments last week for the babies and well, it gets old.  I will keep going and showing up and doing what needs to be done, but right NOW I am on pinterest looking at pools and bathroom fixtures.  It's an exciting time for us and we shall focus our energy on each of our kiddos as needed to ensure their success in life, in connections, it feels good.  It's all good.  There's a blizzard on the way and I like to pretend we are Laura Ingalls in the woods except with reality TV and internet.  It's about balance, right?