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.

Wednesday, August 14, 2013

lessons

I realize I have been a totally awful blogger lately, I mean once a month is so lame.  Building a house and summer with 4 kids take most of my time- my relaxation in form of really crap TV or going out with friends fills the rest.  Mostly if I am blogging rarely it's a good thing, meaning life is flowing and going well.  I have a million topics always swirling in my head wanting a place to purge them and well that is what finds me here tonight.

 For the most part, we cruise along in life- days turn into weeks, we create memories, laugh and celebrate the life we were given.  It isn't easy our life, but funny enough, Jeremy and I generally don't talk or dwell very much on what we or our children could have had.  We spend most of our time dwelling on what is.  And what that is is pretty dang awesome.  Yet, there are times when we are jolted back to reality.  In those times, I always find the most learning I have to do is right there waiting.

We recently went to Jeremy's brothers wedding and Graham and Audrey were both in it, along with Jeremy.  So, what was I going to do with two babies, because despite the fact that Nolan is almost 3, he is a baby in so many ways.  I hate that feeling.  The feeling of helplessness.  That if I had typical kids, even one of them that didn't need to be carried or could be "controlled" by predictable ways, like suckers, tv, something; we could have brought them.  It races through my head especially during major events like this.  Even more so- maybe Nolan would have been in the wedding- well since two other 3 year olds were and of course they did beautifully.  I can't tell you that doesn't eat me up inside.  Bring tears to my eyes.  I can't tell you I don't want to scream- "why is this so damn hard!".  Because I do all of those things.  The moments flow through as quickly as the tears dry up.  We spent a wonderful weekend soaking up every minute with our amazing "big kids".  We tell ourselves this time is good for us and them, to have our attention and be able to do family things without major stress that babies bring.  We tell ourselves, just pretend we have twins that are a year old- we would leave them right?  It's OK to leave half your clan behind right?  The guilt is a strong hold on my heart. 

There are moments I catch my breath as if I am betraying them by not including them.  I tell myself it's because of their abilities not because of their disability.  It's weird though, like you are phony, pretending to be a family when half of you is gone.  Like you are hiding something- I can't explain it.  Impossible really.  I was taking a zillion photos, occupying my time with children duties and chatting up a storm, normal behavior.  Along with some cocktails of course.  I was trying to get pics of relatives and families together and someone asked to take ours and we both stopped and looked at each other and said, "nope, that's ok."  There is something that stirs deep within when we see a photo of Graham and Audrey and us and no babies in it.  As if we left half of us out.  Why would we want that photo?  It isn't our family.  I know, totally crazy, just our thing.  Then after I took this photo of Jeremy's parents and the grandkids- it was perfection, I imagninged putting it on canvas for them in their living room, and it dawned on me, I forgot the other two, just like that I vanished them and guilt hit again.


Our life isn't just perfect photos and parties.  It isn't a gorgeous house and new shoes.  It isn't flawless hair and smiling children.  It is complicated and messy.  Just like yours I assume.  You realize that the more you get to know people.  Everyone's life is messy.  It's all they know.  This is all we know.  So now that I told you the nitty gritty of dirty, let me let you in on the miracle of roots that come from that soil. 

12 days prior to leaving I found myself with no one to take the babies (long story), so I scrambled, calling relatives, babysitters, trying to mold together times that someone could watch two babies alone at our home while we were in another state!  It's not like I could just find a sitter on craigslist!
 I knew our friends would help, but they have their own children and busy summer plans.  And truth be told it's literally impossible for me to ASK!  So I leaned on family, it is NOT easy for me, in fact prior to these babies, I wouldn't have done it. Prior to these babies- short of being in a coma- I rarely ask for help.  It's a really, really bad trait.  To act as if you never need anyone or anything.  Because I say "act" intentionally.  We all NEED someone and something...sometimes.  So, this acting gig of mine was up.  I actually 100 percent couldn't do it without help.  And there I was in a vulnerable state yet again.  Cursing for having to ask and be vulnerable, wanting to retreat and forget a wedding was even happening.  It's ridiculous isn't it?  I mean I love when I can help someone, it literally fills me, so to rob others of that and to not let them love me back, well that's just stupid. And so, my amazing cousin, who seriously loves our babies and children better than me- and is only 23- came and slept alone in the Abe Lincoln house and rocked them, played with them, sent me videos and pics.  My Aunt Deb joined in the giving and spent the next night and enjoyed some baby time for herself.  And my Aunt Ruth and our babysitter filled in the rest.  They sent me texts of the giggles and praised me on how sweet and well they did.  They shared with me the amount of energy and patience it takes and how impressed they were I did it every day.  They celebrated their accomplishments first hand watching how they have grown.  They embraced their sweet arms and kissed their cheeks and learned some sign language in the process.  Ultimately, we all grew a little closer.  I trusted them with my most valued treasures and they gave me the greatest gift, love and trust that they could care for them.  They were generous with their time amidst their busy lives filled with their demands and on short notice came through and showed up for us.  I can't thank them enough. 

The lesson isn't lost on me that I wouldn't have done this without Down Syndrome and Trisomy 9.  I simply wouldn't have been in that vulnerable of a place that needed people to help.  I wouldn't have known the feeling one gets when those around you rally for you and your family.  To receive that cements in me the willingness to give as much as I can.  On the surface, we may look like our life is perfect and heck almost easy, but it isn't.  We need people, and we are so happy they need us too.  The lessons kept on coming...

When we arrived to the hotel- Jeremy's biological dad is literally in the room next to us, who we haven't seen or spoken with in years despite our best efforts to be loving and kind, we don't meet him with anger or resentment.  Our hearts are healed in so many ways.  We don't have room for baggage of hate and anger.  We have peace.  I was so proud of Jeremy in his speech at the reception for acknowledging his parents and their participation in the wedding and naming Jim and his wife.  He didn't have to do that.  But, always, always he rises to the occasion and does the right thing.  Not sure without our path that would have been as easy as it was for him or us.  Have no idea how they felt or what they thought, but that's just it, it doesn't matter anymore.  We are at peace with us.  Our choices, our path.   
 Every moment I turned and saw beauty, a bride glowing, her step-daughter grinning ear to ear; my beautiful girl ready to walk down that aisle. 

 Little girl shoes and feet, I could hardly take them!  They were so cute.  Their smiles, their hair, their dresses, their spirits. 
 And we danced, for hours, at this point, I put the camera away, no pics, sorry.  You will just have to imagine Graham and Audrey going strong for three hours and Jeremy and I taking turns to keep up.  We smiled at each other more than once wishing Nolan was there, he would have loved the music and dancing, loved it.  It was a glorious weekend of celebration and love and life lessons learned.















Friday, July 12, 2013

baby steps

Wow, it's been an exciting time around here.  We moved and are all settled in to the "Abe" house.  It's been fun and exciting to change it up a bit and explore a little ole town just south of the river town we call home.  We have spent days walking to the local bakery eating delicious pastries.  Spent mornings eating yummy breakfast in the grass on picnic tables at the local cafe.  Had play dates at parks around town, so far three and also the local watering hole that includes an awesome bowling alley.  It's been a blast, having fires with friends at night, walking to the river and hanging with family.  No complaints, ok ants and random leaks not so fun, but all fixed, thanks to our awesome landlord, aka my uncle! 

So many gaps to fill you in on, EJ turned one and no big Robbins party happened.  It was by choice.  About a week prior I had a total emotional breakdown.  The really, really ugly cry kind and everything in life hit me hard.  I hate those days.  I love them because friends get bonded closer, this girl lovingly and gently got me through.  Her man mixed up some cocktails and yummy bites to eat and there we sat in a suburban yard while I wept, screamed, pondered and freaked.  We discussed life's deep topics and ways to resolve hurt.  We muddled through history of pains and origins of bad habits.  The life we are leading now compared with the life we pictured back then.  It's what real friendships are made of.  The interweaving of thoughts and ideas, support and love.  Those kind of connections don't happen overnight.  They slowly meld from a haggard mom story to a complaining about husband rant to drinks late into a Thursday night to a couples event on a Saturday in Minneapolis.  Then one late, lazy Sunday afternoon, a phone call from a total meltdown where you ponder the bridge your crossing and it looking like a rather good option of escape from your doomsday.  And she is there, your friend that you have carefully cared for and listened to and shared with for years.  Yep, those connections, those moments, they can't happen without all the dirty, nasty, reality of your innards exposed outwardly.  Without a wonderful word- vulnerability. 

Our world is scary sometimes, for all of us.  I have been learning a valuable lesson as of late.  It involves baby steps.  I seem to want to sprint and rather fly to my next destination, glossing over all that lies in between.  Lately I have realized the marrow, the heart, the everything of life, is in fact that in between.  It was so perfectly illustrated on July 3, this year.  Shortly after my life breakdown, for when it is dark, there is always light.  I had decided not to celebrate EJ's 1st birthday in a grand fashion.  Hard for me to admit that, as it seems rather awful.  But, nonetheless it is honest.  I just couldn't bring myself to prop him up to a cake that he wouldn't eat and watch his head tilt as I propped him up in a sitting contraption.  I remember too freshly Nolan's 1st birthday and a similar scene and it broke my heart to repeat it.  So, I bought some cupcakes and scooped some ice cream, I dug out a single random candle and the kids and Jeremy and I sang and we blew out the candle and voila, happy birthday EJ.  It was short and sweet and surprisingly the kids didn't seem to notice the lack of grandiosity.  Perhaps it was because the opening act superseded the main event.  Moments prior to our gathering to sing, Nolan decided it was time to take steps himself.  After 2 years and 10 months our lil Nol's decided to take 4 wobbly, glorious, perfect steps to daddy.  Over and over he signed more with giggles and cheers from his most supportive fans- Graham and Audrey.  It was a moment let me tell you.  It was a moment in life that you stop and realize it's all here, all right here that the goodness is found.  If you take baby steps.  Enjoy the baby steps.  Recognize baby steps are how everything in life are formed.  Marathons are run step by step.  Houses are built nail by nail.  Relationships are constructed a laugh and cry at a time. 

I have been pushing and rushing for a long time, still do find myself in the whirlwind of crazy, running out the door to well...what? an appointment, an event, a reservation, no need to rush.  Step by step, moment by moment, slow it down.  All the good in our lives is now.  This crazy time with two rather needy babies and two more fun, but rather demanding children.  These are the moments that I have been rushing to all of my life and now it's time to enjoy the baby steps that are building the ones in the future. 

Thursday, June 6, 2013

home

Well, the time is here, we are moving this week.  Tomorrow is our last day here.  G and A already headed up north with Grandpa and Grandma for the weekend.  Their last night spent at the only house they've known already done.  Nolan and EJ are sleeping now and all is quiet.  The last night I will put babies to sleep in this house that I put our first baby to sleep almost exactly 7 years ago.  It's odd how an object or space can hold so many precious memories and seem to keep them alive.  Like when you drive through an area of your past and you can see your younger self almost perfectly.  I hold memories like still photographs.  I can visualize the blue shirt that Jeremy wore when we brought Graham through the door and toured him around his new house.  I remember the first night we slept here I was 2 weeks from giving birth and Emy our dog and I lay on the floor on a mattress waiting for furniture.  I dreamt of filling this house with babies.   I dreamt of every room the colors they would be and accessories to adorn the shelves and walls. 

I can picture taking our first vacation as parents and walking slowly up the stairs to see Graham- 9 months old at the time, hanging on to the railing- standing- standing up for the first time smiling as he greeted our familiar faces.  It feels as if those tiny little finger prints are forever etched in that grain.  I can see painting Audrey's room 3 times for the perfect pink only to end up with beige!  Bringing her home and rushing into her room at all hours of the night, not because she awoke, she slept 8 hours straight the night home from the hospital!  But, because I kept thinking I was dreaming and she wasn't really mine, that perfect, pink bundle.  I rocked her endlessly as I nursed and stared out the window of her room at the dim streetlight on the corner.  I dreamt of our future together, her and I and we talked about life lessons.  She was and still is the most beautiful child inside as well as outside.  When she was born she looked at me with the most peaceful, calm, gentle eyes, our sensitive girl. 

I remember our sweet Emy lying on the back of the couch "tanning" in the sunshine, cuddling under our blankets in our big bed.  I remember running with Emy for the first time, that I ever ran that is, and listening to music in the woods behind our neighborhood.  She ran so effortlessly and the train horn of the Zephyr slowly chugging by, her and I found peace and strength in those woods.  We lost our sweet Emy in this house, I remember her first seizure here.  The sound of her body thumping against her kennel in our room.  The foam from her mouth and her dazed, crazed look for hours after.  It was terrifying.  I miss sweet Emy girl.  We were going to lay her ashes to rest behind our house in those woods, but I just never could.  I didn't want to leave her here, so I still have them, 3 years later.  I am glad I waited, G and A still talk about her and want to lay her to rest with us. 

I remember the day that the news came of Nolan and that infamous phone call from the genetisit, three days before his birth.  We pulled up to this very house.  Shaking.  A pink balloon honoring a sweet girl that tragedically died in our community was swaying int he breeze from the pillar on our porch.  I untied it slowly.  I can see my hands doing it now.  I can see Jeremy sitting in our living room chair, in the dark.  Silent.  Still.  Shocked.  Tears stream down my face because that pain is still so tangible.  I don't access that place often, but that visual will always remain. 

I take baths like others take showers.  It's my thing.  I have rubbed four pregnant bellies and visualized four baby's lives in our bathtub.  Four babies have taken baths in that bathtub.  "Mama's bath" as it's known around here.  The "kids" bath no one ever wants to go in.  Wouldn't you know that bathroom is rather useless around here, it's a good thing we are building two "kids" baths at the new place, HA!  Either way, I have dug out legos from the drain, picked horse hooves out of my hair as I laid my head back, might have thrown a buzz lightyear across the room after a long mom day.  Oh the memories of that bathtub. 

I can tell you the exact 6 inch square of carpet in which Nolan did his inch worm crawl.  The exact inch where he said, "mamama" for the first time.  Where I was sitting and running down the stairs when my doctor rang the door bell to tell me about EJ.  Where I stand every day to see Graham at the bus stop.  Where Audrey strums her guitar and plays her "cd" music.  Exactly where Audrey climbs up on the stools for breakfast everyday.  How proud she was the first time she could reach the sink.  Graham's first day of school and how proud he sauntered up the bus steps and also THE day that he refused to get on the bus and was kicking and screaming MAMA MAMA MAMA while the door closed and the bus pulled forward, it was this house that saw the tears streaming steadily down my face.  My back appeared stoic. 

The memories pain me, make me feel like I am never leaving this house.  I can NEVER leave all that I have learned, loved, cried, lost and gained in these walls behind.  And yet I am.  We are.   Something you may not know about me, I love moving.  Like literally love it.  I thrive on change and uphevel.  I like purging junk and re-organizing.  I don't care where- I just love it, would move every year if I could.  That is until now.  The first place since my childhood that I lived this long and more importantly, this was my first home.  Sure Jeremy and I had a previous house, together, no kids.  But, this was our home.  It's part of us and our hearts forever. 

My uncle bought a house a couple of weeks ago that we are renting.  It was built in 1865.  I have been building it up to the kids because it looks like we may be there awhile.  Did I mention I shouldn't be building a house because I like change so much and that includes I can't stop messing with the floor plan, seriously, can't stop.  Anyway, I have been pumping the kids up about living in an old house, a piece of history.  Graham is ecstatic since he looked up who was president and found out Abe Lincoln himself was around and basically that means he lived in MN in THIS house.  We have talked about the claw foot tubs and why are they called claws?? Um, not sure.  I was moving some shit, oops I mean copious amounts of toys today and walking their rooms, deciding what was going to go where to have the movers ready.  I was thinking about the little girl and boy that left their hand prints on the concrete.  The memories they made in that house.  How that is their home.  I spoke- yes I realize totally insane and a little creepy- and told the house we would take care of it- we would fill it with love and a little bit of crazy.  The kids saw it last night and went bollistic, shouting from every room how cool it was (yeah it isn't cool), but it is to them.  To them it's new and exciting and change is fun! 

I have been consumed with whether or not we will not be in our house before Christmas and I just keep telling myself.  Who cares? The kids don't.  What I have realized with kids moving anywhere with them is home.  Wherever we are, big or small, new or old, dirty or clean.  As long as we have each other we will be home. 

Wednesday, May 29, 2013

testing testing 1-2-3

In the world of special needs one conversation that you inevitably face is testing for the dreaded IEP.  I have heard about it since my very first "support" group meeting when I had one tiny innocent three month old baby.  There are many pre-concieved notions that go into this process because you are fed many tidbits of information by numerous caring, concerned parents in similar circumstances.  I absorbed all of this info, whirling in my head, will they push him, will he be distracted, will he be scared because it's in a strange place, will he feel like it's torture because it's an hour over the course of two-three times?  Do I want to hear the results?  THE results of what your child can and can't do neatly summarized into printed out white sterile sheets of paper.  Does this make my child? Does this break my child? Does this mar him for his future in school because if he is awful than the expectations are too low, if he is awesome than is the bar too high? Is there ever too high?  You see, lots of thoughts and questions swirl in this world.  This microcosm of parenting with a special needs child.  Add in the stress of have you done enough up until this point? Shit I haven't even worked with him on pointing to objects in photos, why didn't I do that more? Come on Nolan- you grab your cheerios with a pincer grasp every DAY!  Oh good he knows his shapes, oh crap you want him to do it within a certain time and he has to repeat it FOUR FRIGGING times??? CRAP oh CRAP.

It's what I was expecting, those feelings.  They were there, I am not going to lie.  I sat there justifying to myself that of course he wasn't going to repeat it perfectly, he hasn't done it before.  And we are in a strange place and now someone he doesn't know is asking him things and he can't stop staring at her.  This isn't fair ran through my head a brief moment and then I stopped.  I stopped it all.  I sat there still and though to myself.  No this isn't what it's all about.  This is a fricking test, just like Graham takes and Audrey will take and they will also be measured and no one will care if their dog died the night before, or they just got over puking or I screamed at them that morning.  It's life.  And I felt better.  I realized Nolan is in this world of life and the real world just as they are and truth be told you do have a time limit and you do have to sit still and focus when you don't want to.  You do have to listen to strangers and go into weird rooms and sit in different chairs.  It's harder for him, yes.  But, life won't change for him, won't mold to his brain or his time frame.  Trust me old people and parking spots don't hurry for my world either.  It's life.  And instantly I felt better, this doesn't have to be stressful and agonizing, this is just another hoop and another aspect of Nolan that is different, not worse, not better, different.  The rest of the time, I smiled, knowing his accomplishments are well earned and his teachers pride filled that room.  I smiled because he had an exceptionally adorable outfit on and his hair was curling in the humidity, shallow but truly precious.  I smiled because as I walked out of there, I didn't hang in shame or frustration or anger, I rose to being his mama and knowing when he needs me to kick someone's ass I will do it, but so far he's doing just fine.  It felt good and also I have appreciated for ONCE in my life my realistic attitude, ok fine some say it's pessimistic, but I don't.  I know each of our children's limitations and I think that's fine, it prepares all of us for when they fall and instead of sitting there with my mouth stuck open I can simply wrap my arms around them and say it's ok they are awesome just as they are.  After all, who really cares if you can stack 5 blocks or 7?

Friday, May 24, 2013

Your kid's a loser

Got your attention? Winner and loser have that ability a simple label that means so much in so many ways.  Graham's baseball season started this year and for those that don't know the history, here's a little background.  Jeremy loves sports and competition and truth be told, so do I.  We always fantasized about a boy that was ALL boy, that loved sports.  Graham has his own ideas, always had, no I mean seroiusly since womb, that kid has been an originial.  Most mom's will gripe about their boys non-stop physical agression and overly loud obnoxious behaviors, not Graham.  He's calm, calculated, percise, our thinker.  I saw him squish an ant with his flip flop once and was shocked, as he truly coined the phrase, "he won't hurt a fly."  I worry about that with G, he has such empathy for others, a truly compassionate, gentle heart and I worry that being a boy in our society, that may be tough for him.  In fact there is a boy in school that Graham has befriended and his teacher lovingly called us because it's preventing Graham from playing with his other friends.  You see every time Graham tries to this boy gets upset and cries and Graham tries to tell him- 'let's all play with everyone', but the boy won't and so Graham stops and goes and plays with him, because no one else will and he feels badly.  I have talked to him numerous times about how he can't control others choices and it's wonderful that he tries to help him, but ultimately he has to make that choice and enabling the boy isn't helping him learn that isn't how to make friends.  Life lessons are hard and often times painful. (Trust me- I get that) It's a hard balance teaching your kids to care for their needs, but also those around them.  But, Graham also has a boat load of confidence and he can be bossy, assertive, domineering and stubborn.  Just not physcially.  So, I didn't know if our (little)big boy was going to want to even play baseball let alone twice a week.  Jeremy insisted that he wanted to do this with him and he was doing it.  I reliqueshed control, a rare occurance, and again, Jeremy was right.  Well, kind of.  Graham is no all-star althete, quite the contrary.  But he is trying, working hard, getting out there, doing something outside his comfort zone and it's awesome to watch.  Nothing gives me greater pride than our kids pushing themselves outside of their strengths.  As proud I am of Graham and his academic accomplishments, when I see him working so hard on baseball I tear up.  Because he was born gifted with a great brain, that's easy for him, and that's great.  But working on something, earning it, that is a true accomplishment.  He is so seroius, too serious of course, in his position, whatever that may be that inning.  He listens, while other boys are running around in circles, Graham won't leave his "ready" position. 

He asks all game long, along with the other boys on the team, "Who's winning?" "Are we winning?".  And there in lies my problem.  There are no winners??? WHAT?  No losers??? WHAT??? Who came up with this cockamamey crap??? Life is winning and losing.  LIFE is learning to cope with being a LOSER when all you want is to WIN!  It sucks.  It's not a fun lesson to learn, but OH so important to learn it.  I have failed to understand or empathize with ANY theory that be presented to me of why your kid can't be a loser.  Your kid is in fact going to one day be a loser!  It's a fact.  And to delay that implying that one day it will be easier for them, I just don't believe it.  I think the sooner that lesson be learned the better.  People who know us know this.  Because don't think for a minute we let our kids beat us at candy land or war or zingo...oh no, we WIN.  And trust me when they finally, inevitably do win, wow is it a sweet victory.  There will always be winners and losers in our house.  More important that ANYTHING else to us is that they learn to be losers.  Maybe because I am a horrible loser.  The worst kind, excuse making, challenging a another match instantly or plain out refusing to play said game for risk of losing again!  ICK!  Who wants that?  Our rule is, you lose and you congratulate the winner, you are happy for them too.  They got to win and that's fun and you keep trying for your turn in the sun.  If you try and try and try you too shall win someday at something.  Not everything, not everytime and certainly not EVERY game of baseball. 

I just can't wrap my brain around it.  If you are afraid the kids in baseball will get slaughtered and lose every game- which isn't likely, since really none of them can play.  The swing would likely be a couple of plays actually made causing a player to get out and costing a run or two.  But, why call it a game?  Why not just run drills and skills and have one game/show at the end of the year like gymnastics does at Audrey's age?  What bothers me, is the kids are now losing that drive.  They are beginning to ask less already, care less and it bites.  Truly, because I like healthy competition.  I think it's good for all of us, keeps us trying and doing our best.  But, to tell everyone you are awesome and great just because you stand there and not separate any of that out? That is just plain ridiculous.

Sunday, May 12, 2013

shallow end

The past two weeks has been a whirlwind.  Many of you know via facebook that EJ was hospitalized for the first time since he was born.  He had lost over 2lbs and from a 12lb start, that isn't good.  He had a temp of 102 and was extremely dehydrated.  He required an IV and spent two nights there.  It was startling and eye opening as any sudden hospitalization is.  But, also Jeremy was completely ill and out of commission as well.  So, there I sat, alone...for many hours.  Of course, amazing friends and family occupied my time and brought their love support and most importantly food.  But, in the trenches there in the night, the beeping of machines were my company.  The screams of a baby next door for her mama my horror.  The nurses every two hour visits my frustrations.  I had many hours to think about life as our older kids were concerned about EJ and wishing mama was home.  Most of the time was spent realizing despite our circumstances, how minor this all was in the scheme of so many of my friends and their struggles.  It's good to open your heart to others pain, you learn to appreciate your own for what it isn't, instead of wallowing in it.

Jeremy is in sales and he kicks ass, simply put, and a shameless brag.  But, really he works his butt off and this year it paid off, he was invited to Sales Club, which for those that don't know if a trip for the top reps from a company annually that bring their spouses and it's all expenses paid.  We have gone before and I kind of know the ropes.  He had switched companies prior to Nolan's birth and this was our first Club after.  I was excited to go, had a ton on my to do list which included cleaning my house, buying outfits that weren't maternity wear from last summer, getting teacher appreciation gifts, getting my step-dad's birthday gift, organizing Graham's birthday party, getting mother's day gifts for the mama's, grocery shopping for my dad and his wife while they stayed here, getting the mini cleaned, getting new makeup that didn't have fur growing on it and packing- yeah I had a lot to take care of, and since the week prior Nolan was sick I was behind, really behind.  Then EJ got really sick and the world stopped along with any tasks.  So, staring out blankly at the red flashing light illuminating the hospital room and all the racing thoughts in my head of what I should be doing, just stopped.  The trip would have to not happen, I mean we couldn't leave now, with EJ so sick.  But, Jeremy and I needed this so badly, we have been under so much stress, both of us.  And we needed to laugh and have fun and be without sick kiddos for a bit.  Amazingly we got released from the hospital and on the plane on time.  My dad's wife is a nurse, so that helped and EJ was doing a ton better of course.

We arrived at the airport to be greeted by a man with a sign and a black car to take the two of us to the Four Seasons, a stark contrast that wasn't wasted on me.  There I walked with a long flowing dress, holding hands with my handsome man and looking like we hadn't a care in the world.  Appearances are tricky aren't they?  I often tell myself that when some asshat (thank you Liz my new fav word) cuts me off in traffic.  You never know who you are crossing path's with and what they are experiencing so tread lightly.  We arrived in perfection, were sitting by a pool eating amazing food and cocktails in less than 24 hours out of the cold hospital room I had called home for over 2 days.  It made my stomach sick.  I told myself I needed it and to let go.  I did.  I chatted with wives about pools, houses, husbands, friends, money, jobs, kids, horses, faith, love, loss, you name it, I covered it.  With our hubbies golfing we spend a lot of time together us wives, and you learn a lot.  Mostly you learn that we are all the same, all have the same baggage and insecurities.  All cry and worry about the same issues surrounding our children and families.  but, still I couldn't help but feel different.  As if someone was going to jump out and say, "HEY what is SHE doing here???!!!".  Because I am different.  The life I go back to isn't a scarlet letter, it isn't something I hide or flinch from, but it is very different than most of the people there.  I try to sit in the shallow end as long as I can handle it.  I try to nod and smile and joke about dumb things, bet on shuffle board games, get drunk and dress to the nines and most would say I probably pulled it off.  I am not sure if that's good or not yet.  Truthfully it's hard sitting there in the land of perfect.  Because life isn't all pretty and I feel like that land is so fake now.  I just want to stand on my stretched out cushy lawn chair and shout, "hey tell a story of how fucked up each of you are!!!"  I decided we could use Jeremy's job so didn't do that!  But, really, I love living in the real, in the honest, in the who are you really.  So, dipping my toe in the shallow end has it's plus's but I wouldn't trade my deep end swims for anything.

I will forever appreciate the dichotomy of which our life is run, we are so blessed with material things and accomplishments and drenched also in a world of needs and desires that may never be fulfilled.  Jeremy had a few moments of squeezing my shoulder or nudging my legs throughout this trip.  We would debrief later about my outrageous actions that required attention.  Usually they involved crossing a boundary with a vice president of the company or something like that...it's hard for me.  The deciphering of who I need to be "on" around.  I find that I have less and less time for that, and more time for the "we are all people, president, vice president, billionaire or no-aire", I just see a person.  It's rather freeing but not so much for the person that works there I guess? Ah well, it's never boring around here!


Sunday, April 21, 2013

free flowing

I have no theme or purpose for posting, instead just a random stream of thoughts that have been happening around the Robbins House.  First off we are trapped in a winter wonder land and at this point I am seriously thinking Christmas is next week and I am about to go chop down a damn tree and decorate it, I figure just go for the gusto- what else is one to do with 6 inches of snow in April??? Seriously- these are the years we talk about moving far far away!  

Life has been insanely busy, nothing new, in fact I am learning that is going to be normal for probably the remainder of my days, when we decided to have 4 kids, well, it was all down hill on the free time of life category. 

I had a weekend away with some girlfriends and honestly there is nothing better for the soul.  So many reasons, but really, the main one, that we are all connected in our crazy land.  We all just want love and acceptance and forgiveness for our mistakes.  I wish it were that easy, but for that weekend it was.  Lots of laughs, tears, and tons of love.  And I came back to a clean house and happy children, what more could a mama ask for?  Jeremy did a dang good job holding down the fort for three days, I mean seriously I was impressed.  And I think it encouraged me to do it more often...hehehe...

Life with the kiddos is good.  Graham is doing amazing at school and just soaking up learning like a sponge, it's awesome to watch.  Audrey is really into gymnastics and very excited to start Kindergarten, keeps waiting for time to speed up so she can be at the big school!  I would like it to slow down, she's so big and capable and it melts and breaks my heart in the same instant.

Nolan is doing amazing.  He is my favorite...well right now...they change with the seasons or even the day!  He is so flipping sweet and funny.  Tons of personality and his signing is literally incredible, I need to make a video, he signs at least 50 signs now- and really he would learn one with about 2 repitions- we just need to learn more!  He says a couple of words "ahh duh" for all done and "ba" for ball.  Honestly I can't say I really care, because he signs so well, it doesn't matter.  This morning I brought him into our bed and he signed, "down" then "yogurt" then "bacon"...haha, he was a hungry boy and it's awesome to see him get it.  I have really been feeling so relieved and happy with his progress.  He is getting a minor surgery in about a month- tubes- and a sedated ABR, since he's had fluid the last three attempts to get a hearing test.  Will be good to just get some answers if he is in fact having problems hearing.  He has orthodics on his feet now, but still no walking, his standing is amazing and he will walk with your fingers, but oh well, in good time, I am thinking by his 3rd birthday in late August.  It will be heaven on earth when I can set him down and he stands up and doesn't try to crawl away!  Instead he will just run away- yeah I know, it's not really easier!

EJ well he's had a rough bit with being sick, it seems like he had about 2 weeks of health in the last 4 months, respiratory and double ear infections non stop.  I want to keep him in a bubble and trust me I try to, but with 3 other small kids around, it's a challenge.  To be honest it's exhausting, I am up from 2-3 times a night and early in the morning and then all day he's cranky and hard to calm.  He has a couple days of improvement and then bam he's bad again.  It's when I find myself getting pissed.  Pissed that he has a weak immune system and that between him and Nolan someone is ALWAYS sick around here and then I get exhausted and then cranky and then, well you know.  It's when I stop and think of the months going by and that he is almost 10 months old and is 12 pounds.  TINY is an understatement.  He eats like a champ, I haven't tried solids yet, no good reason, just that he can't sit up so doesn't make it very easy for feeding him.  I don't push him or really measure him on a chart, I don't really engage his therapies as I 'should', I don't know, maybe because I am already doing twice a week for Nolan and have 2 other kids and their activities to attend to.  I don't want to waste OUR whole lives on therapies.  I know, I am bad, probably going to be fired as a special needs mom any moment? Wait is that an option? LOL. 

I am still shocked at moments that this is our life.  I still pause- when I was bowling with G and A this weekend and realized this could have been my life.  2 kids.  Easy.  SO easy.  I think the hardest part is and always will be that we just don't know what life looks like.  I sat there cursing in my head, things like- "Grace of course you can still do all these things, don't be ridiculous, you can bowl with them!!!"  But, it's not that simple.  When you have typical kids you think, ok in 3 years we can take them bowling, or skiing, or to Disney, you know when they will do certain things and you can plan on that.  It's what I find most difficult to find the answers to- When is the getting up every night going to end?  After 4 kids, it doesn't seem it has in 6 years!  Are we ever going to be outside at our house and they will just all run and play and be OK?  Will all of them interact like they do now, forever?  G and A love making their brother's giggle and taking baths with them and helping Nolan to walk across the room or get out of his crib.  Will they always want to help? Or get old and look at me like, really?  I worry about that.  When will visiting Children's hospital not be weekly or monthly but yearly?  EVER?  When will I plan hair appointments more than surgeries? We were going over designs for the new house with our builder and the surgery scheduler called me and I had to take it, they could hear it was important and whispered something about we can do this later and I simply put up my finger and needed one minute and on with design we go.  That's life now, I am not sure if I think that is good or bad, but whatever it is, it is our reality.  I schedule appointments and surgeries like play dates and sometimes they each get cancelled due to a sick kid and you simply re-schedule. 

I wonder with every new "typical" baby born, why not us?  Why twice?  I try to tell myself lately that it will be so good for both of them to have each other, throughout their life they will have a friend and that is something- actually the only thing- I prayed for every night when Nolan was born.  That he be liked, happy and have a friend.  I guess my prayers were answered. 


Tuesday, April 2, 2013

Robert Ethan Saylor

I am ashamed to say that I heard of this story less than a week ago.  Ashamed because clearly when a 26 year old man dies in a movie theater from what appears to be police restraints it should make a bigger headline.  It seems that if he had been typical and simply overweight and having a heart condition, human interest groups would adopt his cause and burn a fire under investigators to ensure this type of practice doesn't occur again.  But, sadly, that isn't the story.  Robert Ethan Saylor, who was called Ethan, was a 26 year old man with Down Syndrome.  His care giver had brought him to see Zero Dark Thirty and upon leaving the movie she went to get the car and left him in the lobby.  At which point, he tried to enter the theater to watch the movie again.  At this point, he was told to buy another ticket or leave the theater.  He became upset and emotional and having a history of aggressive behavior when being touched by strangers began to react.  Three off duty deputies were called.  They proceeded to attempt to escort him out of the theater and he became more aggitated and reportedly shouted, "I want my mommy!" and they began to handcuff his large frame, he melted and landed face down on the ground.  His heart rate was weak when paramedics arrived and attempts to revive him failed.  He died that day over a movie ticket.

I have tears streaming down my face, imagining one of my sweet boys, confused, lonely and scared screaming for me to help them and I am not there.  My heart pounds and aches with the fear that any mother feels when faced with their child dying alone and frightened.   There are many stories of Ethan's loving, kind nature, his respect and awe for the police.  There are also stories of his history of violent outbursts with lack of communication or full understanding in situations that he became scared.  I am not sure how many times these incidents happened, maybe daily, maybe yearly.  Maybe it doesn't matter.  Maybe the point is this.  There were presumably people around witnessing this event.  People who could have offered to pay a $7 ticket to assist him and de-esculate the situation that clearly got out of hand quickly.  There seems to be many holes in this story.  Where was the caregiver and why did they leave him if he was prone to non-cooperative behavior?  Why weren't these police trained and aware of his mental capacity not being typical and how to calm down a situation such as this rather than amp it up?  And let's just say he was typical and yes overweight and yes had a heart condition that no one could see, shouldn't police know the risks in restraining such individuals with force and the consequence of death being possible?  And really all for what?  A movie ticket. 

Jeremy and I had a long discussion about this case.  You would think that my reaciton was one of horror and blame.  You would most likely be surprised to know that I do not err on the side of my children needing "special" treatment, any of them.  Recently I was discussing preschools with Nolan's therapists and putting him in a typical school with three year olds.  I said something, "I don't want him to take away from the entire class room of children because his needs will require more attention then the rest.  I don't think that is fair for the typical children."  I don't.  I think that if he can walk and communicate and listen then great, if not, he needs to be in an environement that is staffed to assist him and not take away from the others in his class.  I felt the same was about Ethan.  If he had a tendecy to struggle with strangers and get violent, then he shouldn't have been left alone, ever.  Should he be watching such a violent movie if this is something that he struggles with?  Why couldn't someone just buy him a damn ticket?  All those things race through my mind.  I don't think simply that because he has a disablity the whole world should be expected to know his needs and act accordingly.  We make decisions as parents, to put our children in siutions every day, we weigh those decisions based on their abilities, typcial or different.  I hope that most people will help them, hug them if they fall, stand up to a bully if needed, give them a phone to call home if they are lost, we all hope that those around us see our babies through our loving lenses.  Unfortunatley that isn't the world we live in all the time, every day.

I was talking to my aunt and we were talking about my frustration with people with disabilities doing jobs that are less then perfect and expecting patrons of stores to be OK with that because they have a disability.  I have struggled with this because for me it gives my sons a harder time, when someone is in a hurry to get going and slowly each item is being scanned ever so perfectly through the line, and time is ticking, their frustrations growing, many of them aren't thinking the thoughts that we would hope for about that person with such disability behind the counter.  And then she said something that changed it for me.  "We could all use a moment to slow down and see people."  It's true.  We could. Please do.  Please see my boys.  I promise to see yours. 

Thursday, March 28, 2013

vacay

Thank you to my loyal blog readers out there that have pushed me to get off my tookis and write again.  There are so many wonderful things to share lately, life is just pushing us through, taking us on this wild crazy journey and that include selling our house in the blink of an eye.  The universe is awesome like that.  A sweet friend mentioned to one of her friends that we were going to be listing our home and what do you know, two showings later, paperwork signed, inspection done and closing date on the calendar, wham!  The best part is, they are amazing people, in fact, I am sad not to be their new neighbors!!!  But we are glad that our home that has meant so much to us and housed all of the memories of our sweet babies is going to an awesome family that can keep the love alive.  And it's just nice doing business with nice people!

 Our trip started off a little bumpy with a cab not showing up to pick us up and requiring us to pay for parking at the airport and long lines since the hubs lost his amazing status on the airlines, one of the few perks I miss due to him no longer traveling that much.  But, off we were and a smooth perfect flight, we landed in Miami and the kids were most excited to go in a cab, their first ride in one, you'd think that little old yellow car was a limo with free suckers for how pumped they were.  Graham said, "wow I haven't seen grass in a long time!" I still get a kick out of that kid daily!  It's honestly the best part about traveling with little ones, the joy they find in barf bags that they can decorate with crayons and intently reading the instruction manual on the flight.  They remind you how much wonder is in the world if you take time and slow down, and I needed that.

 We got in line for registering for our room and getting on the ship, they were oohing and aaaahhing over every part, their minds spinning of what was next.  Some common phrases, "The ship is sooooo huge."  "Where does the captain sleep?"  "Our room is really small?"  "How do you flush the toilet?"  With about an hour before our room was ready, the kids instantly changed into their swimsuits- yes pack them, the pool will never be that empty again...I mean ever.  Down the slide they went, 70 degree weather didn't bother their little albino bodies, they sucked up that sun and fun. 

 The night brought us to our dining room and this is where Disney lost me.  It was loud, chaotic, and the wait staff seemed way over worked.  Our drinks took 40 minutes and for those of you that have cruised before, you know that is UNHEARD of.  Typically you are annoyed with how much attention they pay you, in this case, our kids were bouncing off of walls despite the crayons and coloring sheets, 40 minutes for food of any kind or drinks on a cruise is completely unacceptable and startling.  We made the best of the 2 year old at the table next to us screaming and throwing tantrums almost the entire evening, and when she wasn't there was another near by that was.  There were 1000 kids on board, yes, 1,000.  Our kids are rather quiet and polite and know when we are eating at a restaurant how to behave themselves, I can't say this for many of the other kids.  It wasn't all bad, they made Mickey heads out of the ketchup and had a menu geared for kids so they didn't have to have scallops and beef tartare.  But, our staff interacted with the kids very little, which again, we were not used to based on previous cruises.  We did see some characters walking around the first day, but the rest of the trip there were set times to see them and that was about it.  We thought that kind of stunk, as Jeremy said, put a guy in a costume and let him walk around as Mickey all.day.long.  Our kids really expected to see them more as did we.  



key west a crazy fun stop

fun purse from the Bahamas flea market, the kids had a great time negotiating their prices




Our room was a balcony and on the higher end, and one of the smallest rooms we have had.  I know I sound like this is awful, but honestly, it was kind of that disappointing from an adults perspective.  The pools were sooooooo overcrowded, I can't believe our kids went in them, about 50-75 kids screaming and jumping and insanity.  But, again, Graham and Audrey loved it.  They also loved the shows and so did we.  It made for a long day/night, as they didn't start until 830 since our dinner didn't get done until around 730, so they went to bed around 10 every night and if they were younger, I think that would be tough, as evidenced by all the people forcing their 18 month old's to sit in a dark theater and "try" to stop crying!  Are you getting the drift that there was a LOT of screaming, whining, kids around??? One night Audrey decided she wanted to check out the clubhouse during our dinner time and have dinner and play there, Graham agreed, so we dropped them off and said if they were bored or didn't like us, to call us.  They have these cool wave phones that look like cell phones and you can text people using their room numbers or each parent as there are two in each room.  We didn't get a call, so I went back to check on them and they were coloring and basically to me it appeared to be a day care.  I thought it would involve more characters, entertainment, fun crafts, etc.  But, not so much.  That was the only time they were there.   They said they asked to call us back but we never came.  Apparently because they weren't crying they didn't want to bug us, that annoyed me because I specifically said to call if they wanted us.  Not a huge deal, but just added to my frustration with this cruise. 


 Pirate night came and Graham was elated to dress up as was Audrey, she kept asking why they didn't have a princess night and I kind of agreed.  They got their Autograph book signed by captain hook and Mickey and were so pumped.    The dining room was fun and full of life and we got to dance all around and limbo, well Audrey and I did, the boys chickened out.  The fireworks were at 1030 and Graham and Audrey were too tired to stay awake for them, but still a cool feature!



We met the princesses and other characters at a variety of places and got their autographs and the kids definitely felt this was the best part, it involved some waiting but not too bad if you planned it right.  They only allowed the characters to be out for 20 minutes so you had to line up fast, after about 50 people they stop the line.  They let you take your own pictures with the characters which I thought was really nice, or you could buy their photo. 


 I could go on and on about the rest, but really, the best part was how much fun the kids had.  Is it worth it to do a Disney Cruise, I say yes and for no more than 4 days, I can't imagine that chaos for 7 days.  I will say, it may have been that we went during mid march spring break and maybe it'd be better in January, although our weather was not warm, so I think that may be risky.  Either way we are glad for the kids and the memories we made.  And we were especially elated to have my dad waiting in Miami to drive us to Naples where we got to spend a few days relaxing.  Having nice dinners alone and the kids were fish in the pool. We tried to go the beach, but the weather was not cooperating, so we hung at the house, played hours of war, and it was a lot more like our vacation a year before.  Where we loved, hugged, laughed, giggled and appreciated moments together more than a big, grand, to do. 



Combo of margaritas and small children....wiped the old man out :)

yes graham wore his life jacket upside down- don't ask!


Jeremy and I took in a preseason game for the twins in amazing seats, it was awesome, so were my nachos (what can I say that's my favorite part!)


All in all it was a great time.  What I learned was, our kids last year didn't make nearly a whiny peep and on the cruise they were raging, greedy maniacs.  Ok, ok, not that bad, but really, it did bring out the worst in them.  I talked to my wise aunt upon return and she said she doesn't like Disney for that reason, it's so indulgent and I felt very much the same way.  It turned my thoughtful, loving kiddos into saying, "I want..." about 100 more times.  I think they just get so filled with more and more and more fun that it's not so great.  Yes they had fun and yes they had smiles ear to ear.  And yes they didn't want to leave that ship, but honestly, they had a lot of fun and smiles hanging at a house with a pool in the warm weather and getting ice cream and playing cards.  All in moderation, the key to all of life's big questions, balance. 



Coming home, well, that was bittersweet.  I missed the smell and cuddles of our babies, yes.  But, the appointments, sickness, bottles and diapers, not so much.  I tried to tell myself if they were typical I would have felt the same heaviness landing in MN that day.  I am not sure.  There is something about the weight of having special needs children that you don't realize you carry until you are reprieved in some way.  It was glorious to be with our typical big kids that can do for themselves and communicate and you can just enjoy them.  It pains me to write the truth that it was hard to come home.  I feel such guilt about that.  Like "wow, I must be some lousy mama to want more time away", but it's true.  I did.  I am hoping that isn't always the case, that eventually, the stares of people when your kid has braces on their feet or questions about how old your almost 9 month old baby is, when he is only 12 pounds and looks like 3 months, it's not easy or simple.  It gets exhausting and you appreciate a life that is simplified to "normal" for a bit.  It felt good to be "normal."  I know that our new normal will set in and soon enough those reprieves won't be as needed or guilt ridden.  But, for now, we are grateful for amazing family that helps us find those times with our eldest two, it's essential for them too.

We only got one pic of the four of us, and I deleted it.  It's not whole, there's a gaping absence of two babies and one day when they are with us in that wonderland we will take them then.  Despite the difficult times and stress numerous diagnosis' has on our daily life, they belong with us and are a part of what makes us the Robbins Family.  


video
This video was taken the day before we left, I think I watched it 100 times while we were gone.  I especially love his chubby little fingers signing stand up.  So proud of our boy and the strides he is making and did I mention he's the cutest thing ever?









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?