Sunday, October 28, 2012

never ending

I wish I was writing this blog about all the fun things we've been up to, like our big boys first Science Fair or my recent stint on a local TV morning show, both equally fun.  I wish I could focus all of my energies on building our dream home, as we have been trying to start...but instead my wishes are not granted.  Instead for some reason, the moment I feel...settled to any degree...bam life hits us again.  I can't lie and say it is OK, it isn't.  It is really bad in fact.  I had suspected EJ had hydrocephalus for a couple of weeks now.  At first, I just put it in the back of my mind.  Thinking HOW could ANOTHER bad thing be happening AGAIN.  So, I finally crawled out of my denial and made some appointments. I met with his pediatrician, yes my amazing family doctor that delivered him also serves as his pediatrician.  I went in cautiously and in denial, on the way there having a long conversation with my dad about the building process and hiring an architect to draw up some plans.  Ha.  So, when I told her I was concerned and we looked over his growth chart and we both saw the spike the HUGE spike in head growth.  She looked at me calmly and said, it's OK, it's going to be OK, he will most likely need surgery and a shunt will be placed going from his skull to his abdomen to drain the excess fluid and hopefully try to stop the damage that it is causing.  Wow.  I sat there calm.  We continued to discuss further details and schedule an ultrasound to verify the fluid and location and meet with the geneticist to determine how to proceed.  There I sat, discussing a life long consuming diagnosis on a Friday morning like I was having coffee with a friend.  There were no tears, no reactions, no jaw dropping.  Just life.  Our life.  Because calm and peace seems to elude us.  I got in the car to return home and about 2 miles away it hit me.  I couldn't stop crying.  Again.  It just feels like my tears no longer hold meaning.  As if they just flow down my face and I am in a fog.  I can't believe it.  Truly.  I am so tired of crying, so tired of bad news that it is almost as if I can't take it.  I can't listen to it.  I can't hear our future.  We've barely told anyone.  Why would we?  I feel as if a phone call from us is the inevitable doomsday.  It doesn't matter how many times I try to move past it, stay above it, continually life just keeps hitting us.  Hard.

So, now, well that is what we wait to find out.  We have appointments all week to determine the location of fluid, the best way to proceed, if there is such a thing.  But, I will tell you something, I would like to be wrong.  One time.  I would like to suspect something and have them look at me like I am crazy and then say, that I was in fact crazy.  It doesn't feel good to be right anymore.  It seems I need to be right about something fantastic, have a wild and crazy dream and have THAT come true.  The crazy thing about our life is it just keeps moving.  Nothing stops.  We shop, laugh, cook, eat, play, go to parties, eat sushi and watch football, it goes on.  I am trying to think maybe we will be a lucky family that the shunt works the first time and no infection develops and we can breath for I don't know three months? Is that greedy? Too much to ask, three.months.please.

I am scared to even write this, something positive.  But, I for some reason, feel like Everett is so smart.  He just is so smily and engaging, cooing and strong.  A tiny little guy, but so full of life, and knows so much more than Nolan did at this age- it seems.  It gives me hope.  And that scares me.  I want to be hopeful, in fact I am DESPERATE to be hopeful.  But, how?  How do I continue to do so, with diagnosis' that are life long.  The thing about hydrocephalus is there isn't a cure, just treatments.  So, forever we will have appointments to adjust the shunts, ensure no infections are present and there will be something draining fluid from my son's brain, for life.  If he lives.  Oh yeah, that's also part of it.  It's all so crazy and unreal and depressing.  I just want to dive into something shallow like picking out roof lines and floor plans and worry about stupid shit like how long till they finish our house?  I want to run errands looking for the perfect dining room chairs and throw pillows; not more appointments for therapies and specialists.  I know that sounds ridiculous.  But, our life the last two years is well...ridiculous.  I haven't cried again since.  In fact, I threw myself into setting up EJ's room and crib (he's been sleeping in a bassinet in our room).  It's adorable, all things gentle, calm and sweet.  I love it. I want to sit in it.  As I did with each of our babies, their nurseries were such a sign of innocence, hope and life;  I love rocking in a chair dreaming of their future; filling that space with lullabies and love.  And as only a baby can do, they give you a gift out of nowhere, our little man that has been waking up every two hours with only one stretch of maybe 4-6 hours, and he slept.  He slept 9 hours in his cozy crib.  He said to me, "thanks mama, I love my new room too."  Not to be out done he went for 9 hours again last night.  Dare I say it's a pattern?  I leave with a couple pics from his room of peace, at least there for moments of time it's safe and sweet...I like it that way.

Wednesday, October 17, 2012

bikes and school pics...who needs em?

Isn't crazy that in life perspective is reality?  I've always loved that phrase.  Obsessed with the meaning and realizing it's depth.  Like this time last year I didn't know I was pregnant yet, Nolan was just beginning to heal from his seizures and showing his sparkling personality and life was finally feeling settled.  I sit back now and wish to go back, of course, to a time that it was just the three children, I had the dream of another still in my mind and our baby boy was coming to life.  I had no idea how much easier my life was.  Because that's the thing about life, you don't know how easy it is or how much more you can handle till you are in that said place in the future.  When you have one kid you can't imagine two, when you have two- you can't fathom three, and so on.  Well let's just say 4 is kicking my butt!  It's exhausting, there is no sugar coating it.  Our days are filled with managing who's breaking down in that very moment and then moving on to the next, it's not the best display of parenting around here.

Confessional: my short term memory is no longer effective.  I forgot picture day at Graham's school; didn't even know it happened until this morning when I asked him and he said, oh yeah that was last week? WHAT? Are you sure?  Yep, it was.  How the hell didn't I remember that.  I mean, I am super mom, cape and all and I forgot flipping picture day?!  Wow.  Then not to be out done Audrey had "bike day" at school yesterday and I told myself 100 times don't forget her bike...yep...forgot her bike.  I saw them all sitting out when I arrived and my heart sank.  My poor girly.  I felt like such a failure as a mom and apologized profusely and did what only a good mom does, went to the store and let her pick out a treat, whatever, don't judge, it made ME feel better.

Isn't that what parenting is?  Finding ways to negate the bad and extenuate the good?  Somedays it tough.  The bad really did win.  Somedays we rock and it all seems like a fairy tale.  Lately it's all so complicated around here it's a nice batch of mediocre.  I may excel with Nolan and giving him attention and then fail with Audrey and her bike.  My house may win and look spectacular, but my kids screaming.  It's an ebb and flow of disaster to perfection...because I don't live in gray very often, my dramatic tendencies leave me waxing and waning too far in any one direction.

So, what has this all taught me? That I have too many kids.  That it's too tough to expect 4 kids to be happy all the time.  Add in a clean house and happy, yeah not gonna happen.  I make excuses like they are just too little, when the babies get older it'll get easier, but talk to any mom with schedules running them around like mad and you'll find that in fact it gets tougher.  How? I can't imagine!  What I am learning to do is live in now.  When I am with one snuggly baby and I can direct my care towards him, it is perfect.  When our nanny comes in 20 minutes and I am going to Audrey's school to surprise her for the last 20 minutes of class and then just have some girl time after, it will be perfect.  When Graham gets off the bus and I can sit with him and talk about his day for a few minutes, all is right in his world.  You see I will never be everything to all of our kids all of the time.  Ever.  But, to be good a few minutes, well that is just gonna have to do.

Friday, October 5, 2012

a word

What's in a word? What value can words hold? How dangerous can they be?  They can kill.  They can uplift.  They can damage and harm one person or millions.  I'm struck today specifically by the reality that our world is so filled with many words that are painful.  Calling a 16 year old girl fat- can change her destiny and spiral her downward into a world of eating disorders.  Telling a man he is weak, can change his psyche and enrage him to someone you don't want to see.  You see words have power, so much more power than any of us realize.  How we choose to get up in the morning, using words and phrases throughout the day to spread negativity or positive energy.  It's all a choice.  I use words freely, crassly, and carelessly...often.  I am not proud of that fact.  Since having our first child with special needs, Retard has held a new place in our life.  It no longer seems funny thrown around loosely in conversation when referencing forgetting things at a store, messing up our computer, writing something quickly and making a mistake.  This word goes the distance, touching hearts in moms and dads and children around the world.  When it is said, my heart bleeds, it feels like physical pain, because it is our son, you reference so carelessly.  It is his future that you take a notch out of, every time it is written, spoken or joked about it.  It is a harsh reality that YOU are not aware of; because if YOU were, I KNOW you would never, ever say it, laugh about it, listen to it again.  Ever.  If you could see the scars all over us that you were helping to create, you would bury that in your mind forever and if you heard it, instead of laughing or ignoring the source, you would STAND UP for our boy.  You would stop that person delivering that joke and explain to them the wound they cause by using it.  I know YOU would.  You would stop and remind yourself of your own precious children and God forbid ANYTHING ever happening to them and the pain you would feel hearing something so awful being thrown around in regards to their precious soul.

A painful reality of our life is how uncomfortable we feel in having to correct you.  In having to ASK you not to use that word.  And even more so in asking that you gently guide others to do the same.  Because we don't want to be "those people" that are no longer funny.  That can't take a joke.  That get annoyed at every little thing.  Because we aren't.  And if you know us, you know that.  Anyone that knows me knows that I say offensive, off the cuff things  So, I know that you know this isn't that.  We have a job as parents.  All of us.  To stand for our babies, make them proud and make this world the best place for them to live in.  In doing that we all hold this responsibility close and try our best, I believe that.  So believe me.  Trust me.  You don't want to be the guy that thinks it's funny to make fun of our boy.  It's you that looks less than.  You that is in fact not bright, because with the vast vocabulary that your "perfect" brain was given, for God's sake...USE IT.  Find a different word.  Laugh at something else- not someone.  I know you can do this.  I know you will do this for us. For Nolan and EJ and all the other children that only want your love and acceptance.  They ask nothing from you.  Please don't make use keep asking something of you.  Change today and forever.