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?

lance armstrong needs one of my kids

This whole Lance Armstrong debacle- I'll be honest, at first I wasn't all that interested, he always seemed to be a rather pompous ass and to find out he's a liar, well, I felt like it just added to the long list of athletes that seem to fit the bill of over-achieving, drug using losers.  It's awful really, that they literally ruin the sport, inflate stats that then encourage others beneath them to follow in their muddy; misshaped footsteps.  But, as with most things in my life when Oprah gets involved I get sucked in, the big O, means more then one thing in this house. (wink wink).  I couldn't wait to sit and watch her pick at his ego and hopefully find a shred of a man underneath it all, something I could hold onto and hope for and find forgiveness and humanity in.  You see judgmental I may be, but forgiving all.day.long.  And I am talking some unforgivable's, Michael Vick, Tiger Woods, I get it, I can move past their mistakes, I feel they paid their dues and are trying to be different.  So, I thought this interview would be the same, a man on the brink of despair in desperate need of some random strangers forgiveness.  I shouted to my husband the interview was starting and got a rather lack luster response that he had some work to finish up, I was rather surprised, but actually saved most of it to watch with him later.  Later came and I said...."ooooh are you ready to watch Lance Armstrong and Oprah?".  He looked at me as if I just asked him to watch a Real Housewives reunion.  My husband being a total sports fanatic and bordering on needing an intervention of the ESPN kind, was simply, done.  D.O.N.E.  I inquired further into his lack of caring about the topic and he simply said, "when people like that do such horrible things and destroy the sport they are involved in, the last thing I want to do is give them one ounce of attention ever again.".  Got it.

So, I waited till I had some free time after reading some random headlines of the interview and knowing some things that he had admitted and I watched.  I paused a few times, came back to it after some diaper changes and nose wipes.  And there I sat.  Longing for the humanity I so wanted it to capture.  When he used words like- "this is hell" and "I deserve a second chance"- yeah among others, he lost me.  I know he's actually been to hell, given a 50% chance of survival at 25 and lying in a hospital bed with his manhood on a surgical table.  How naive was I to think he could actually learn a LIFE lesson from that?  He hasn't.  He may have learned a chapter lesson.  A lesson in couple years of his life, but wow, lifelong, nope, nada.  He raced less than 3 years after he was battling cancer and he was doping then.  I mean really? That's what you learned, to be a cheat?  What the hell?  Why write a book? Why be inspiring? Because really in the end, the crux of it all is you didn't learn ANYTHING.  You have nothing to offer, besides being the best liar and how to profit from it both in ego and cash flow.  I think to myself over and over and over, wow you could really use one of my special kiddos in your life Lance.  You could really use a less than "perfect" human to teach you a thing or two about truth.  About the value in LIFE that has nothing to do with competition, winning, money or ego.  Your base, your foundation (pun intended) is off.  Way off.  It's crumbled from you, because of you.  You failed to learn from your lessons in life.  I am in no doubt shocked at this, mainly because sometimes our lessons- they come in soft whispers, warning to our ears and sometimes we are nearly run over by a mack truck, aka cancer, and still there lying on the pavement your lessons learned= zero.  Do you not understand that winning is something you have never accomplished?

I think what ultimately tipped me over the edge was when he said he "deserved" to race again.  Then went on to reference others punishments and how he got the "death" penalty by being banned from ANY competition EVER- inclusive of marathons.  Oprah tiptoed around by saying something along the lines of- can't you just compete in something local that isn't sanctioned; he poo-pooed this idea instantly- I mean- he's Lance Armstrong!  Yep- that in itself says it all, too good for small potatoes that don't involve major lime light and recognition.  Oh Lance.  My heart does go out to you, but not from sympathy to the disaster that YOU made out of your life and those around you, but because you must be a very lost, sad soul to find and learn so little about life at this stage.  You are right about one thing, you don't DESERVE a "death sentence", you EARNED it. 

bittersweet

"Bittersweet", that word pretty much sums it all up about our 2012.  A year ago I was writing a post about a very tough 2011 where we struggled with seizures and yet our baby came back to life with the help of modern medicine. We were thrilled and shocked to be expecting a new baby and with that came new hope.  I am not going to say it's easy sitting in this seat a year later and the results of 2012.  I can't say it did what I was hoping it would.  I can't say our dreams were fulfilled, when many in fact were shattered.  Yet as I reflect and find what really strikes me, is the existence of two very polarizing forces, between loss and gain; sweet and bitter.  2012 was a year that began filled with hope and focused on triumph and strength.  There were amazing memories, including the trip to Florida with the kiddos and the birth of a sweet baby boy.  There were heart stopping moments of struggle and pain, the news of yet another genetic diagnosis and the loss of a dear friend.  But, with those struggles, with that pain, rose friendships that wouldn't have been, connections that are forever bound and sealed.  Life is like that, full of transitions, periods that we reflect on and our heart hurts, feels heavy and begs to be carried; and with the help of love from others, it flies and floats again. 

I have learned so much in 2012 that words seem too minimal to encompass the scope of growth.  I have lived by the motto, "you may not be able to make it better, but you can make it worse."  As morbid and downright depressing that may seem, to someone in a time of struggle, it makes crystal clear sense.  I tell myself that daily and sometimes 10 times a day, others pass without the weight of our reality and happiness carries it through.

The truth is, it's hard to write this, words aren't flowing because after Christmas, I find myself in a funk, a place of "what's next?".  I like the chaos and busy of the holidays, so when it is over, I am left reeling and looking for well...more.  It also marks the last day that I had "imagined" with our new baby.  You see, I was so worried to even dream about a typical child when I was pregnant that I really limited my daydreams to this Christmas, I saw him on the first day of school and tucking him away in a sling, I pictured him dressed up for Halloween.  I designed and envisioned our Christmas cards with him being kissed on by his big bros and sis.  And last but not least, I pictured him "sitting up" with a Santa hat on Christmas day.  As we know that wasn't the reality, those images came to fruition in some form or another, but life isn't known to deliver our dreams impeccably.  It has a way of carving out it's own path amidst your dreams and through it you discover meaning and grow; hopefully.  At any rate, it was my final image, and for that I am relieved.  Tired of mourning the loss that I had pictured and now moving forward to celebrate the life we were given.  

So good bye 2012, you taught me love, forgiveness, strength, commitment, and most importantly, perseverance.  I have no images, no dreams, no crazy expectations for 2013, perhaps that is sad in some regards it is, but instead, I hope for nothing more than the strength and wisdom to enjoy every last moment; however they unfold.  I leave you with pics from Christmas Eve and Christmas morning, it was all beautiful and filled with love. 

oh the horse...how could santa resist!

He wanted tree house books more than anything else :)

Miss Audrey showed her horse "Ginger" every single gift she got

Mr. Nol was more excited about wrapping paper than the presents!

first of a billion sets of legos complete!

ummm yeah, stomach flu came Christmas morning and stayed all break, not fun

she loved her vet costume and said she was a vet in the old days riding her horse to people's houses; let's not tell her cell phones weren't around then! :)

oh the boys love each other so

what happens when you say he can't play with EJ anymore