Tuesday, October 14, 2014

brush your teeth

I've been contemplating this post for 14 days.  October is Down Syndrome Awareness month and as such many bloggers are writing beautiful stories about their lives and sharing their love for their babes with an extra chromosome that has enlightened their life and well I sat here thinking, REALLY?  I need to advocate on why this guy deserves to be here?
 It seems so odd, so redundant.  Like, 'Hey brush your teeth if you want to keep 'em!'.  But, that is our reality isn't it?  Wow.  It stuns me to think; that was me.  I had a 72 hour window of knowing I was about to give birth to a little baby with down syndrome.  All that swirled in my head was awful, horrible, tragic, life changing images.  Nothing positive.  Literally nothing.  It's disturbing really, because it isn't reality.  And that is where I like to dwell, in truth.  The truth is-he is a beautiful, happy, silly, sometimes a naughty little boy.  I didn't know that.  Our society wants to take anything worth working for, anything that is less than perfect, anything that will be a tad more difficult and say, "whoa- who wants that?!".  So, I didn't.  I wanted to run away.  I wanted out.  I can see how so many mama's make that choice.  I don't judge it, I completely understand it.  We are programmed with everything in our lives to find better, do better, for ourselves.  If your marriage doesn't make you happy, get a new one.  If you don't like your job, quit, life's too short.

But, in reality, life's treasures are earned, worked for and sometimes suffering is a part of that.  It wasn't difficult to fall in love with Nolan, that was the easiest part of this journey.  And I thought it would be difficult for others to do the same, and well, that was totally not true either, everyone I encounter loves Nolan.  Not because he has down syndrome.   Because he is Nolan.  He radiates love and acceptance.  He makes people smile, all people.  All of the time.  Our kids are shy, both Jeremy and I were shy as a kid and well not so much anymore, but Graham and Audrey definitely.  If you know our family, you are so happy when one of our children greets you with open arms, because it probably took 4 years of knowing them to do so. But, not Nolan, he runs and gives kisses and hugs freely.  He fills everyone's love tank daily. 



 As I sat in the hospital bed with his new little baby scent and soft baby skin.  It was perfect.  It was all that I dreamt of.  It was the world that I didn't want to take him into.  I remember hiding him in my baby carrier, hoping no one noticed.  Happy if anyone told me that he "didn't look like it".  Now I cringe at those thoughts.  Can't imagine being ashamed of my sweet boy.  But, I wasn't.  The world is.  The world see's him as less than, and therefor we all do.  That isn't right.  Forget fair, forget politically correct.  It isn't right.  He deserves your respect and love and attention like any of our children. 


Graham said to me this morning the first time ever that he just randomly brought it up, "If Nolan were regular (insert cringe here) would he like and be able to play Lego's?"  First of all we talked about what 'regular' meant and then I said that yes, he would be able to and probably like Lego's.  He then followed it up with, "I just wish one of the babies were 'regular'. So, I could play Lego's with them".  I cringed again, but understood his point.  The conversation quickly moved along, but it was swirling in my head today.  This is what I talked with him about tonight.  That we don't know how we are going to get along with our brothers or sisters.  That I barely talk to my sister and we are different people.  Doesn't mean she's bad or I am bad, just different.  It is a gift when we truly enjoy the same things and play the same games with each other regardless of our abilities.  And it's true. 
 There will be many more conversations I am sure about what is different or annoying about having brothers with disabilities.  But, we would do this anyway, with any brothers.  We all love and loathe numerous things about all kinds of people, their intellect has very little to do with it. 
 I can't say that I get the whole magical unicorns and rainbows of down syndrome.  I wouldn't preach it like that, because to me, it's a tough job raising kids.  It takes all of your heart and soul to try day in and day out to be the best you know how and whether or not they have an extra 21st or 9th chromosome doesn't really matter.  They still make you smile and melt and scream and shout. 


I thought and imagined that our family would be "different" that our friends wouldn't want to be with us anymore, because our kids weren't like theirs.  I know it sounds ridiculous to our friends.  Because it is ridiculous.  I wish I could take a mama with the news of any baby with struggles or differences and show her our life.  Our wonderful, beautiful life.  It's not because it's easy.   It's not because we are amazing.  It's a choice.  Happiness and love are choices and actions.  We live.  All of us.  All of the time.  We have fun and welcome all people into our home.  And if you were invited your would see we are a family, complicated, messy and so full of love (and stiff drinks!).  This life is all I dreamed it to be, the only missing piece is the rest of the world.  So, dreaming big and starting small with all of you. 

 So, yeah, brush your teeth if you want to keep them and love people for who they are and what they offer this world.  We are all just trying our best. 






Monday, August 18, 2014

lucky

Tonight, sitting in the candle lit darkness of our screen porch, surrounded by silence and sounds of nature; I thought it, something I never thought I would think again.  "I can't believe I am this lucky."  I didn't want to write this, didn't want to say it out loud to the universe.   Because, really, it seems like bragging or annoying in some way.  But, it's true.  I kissed 4 beautiful, perfectly, imperfect children to sleep tonight.  I sent a text to my traveling man with a heart as we kissed goodnight from afar.  And as I sat in the stillness the peace of right now rushed over me.  I really do have all that I have ever wanted right here, right now.  You spend your life forming images and dreams of what your life may look like.  I can't say that mine looks the way I imagined or dreamt of, in fact it is so much better.  It is rich, deep and full of life.  This past weekend I had a girls night with some of my favorite people and it reminded me what this journey is about.  A give and a take between friends, connecting through pain and tears, also through shannanigans and laughter.  It was perfectly imperfect.  We all were that night.  Each with our own stories of pain and triumph.  Gifts that we bring the world and our families each day.  I admire each of them in so many different ways.  So lucky I am to know them and call them friends. 

I sit and miss my husband, truly my heart aches thinking of him gone, even for a couple of days.  After 15 years.  He is my rock.  He knows every side of me, the nitty gritty.  We don't sugar coat things and we bicker like teenagers.  But, we also love like teenagers, after 15 years. It's a connection, undeniable.  It can't be spelled out, our story too rich in details to ever be simplified in a few paragraphs.  It's what I love about us.  Our journey wasn't and isn't easy, bumps all over our road map.  And still we are together.  So lucky. 

I took Graham to dinner tonight, just him and I.  It was so glorious, talking to him about life and table manners at a fancy restaurant.  Watching him thank the waitress and say he should change from his t-shirt if we were going to a grown-up place.  He is growing up.  We laughed and walked on the river and he said things like, "next time we should just sit down by the water and have a picnic and watch the water....Nolan would love it, let's bring Nolan."  I said to him, do you ever wish Nolan was different?  That he could talk to you and do more?  He said, "NO of course NOT!  I love Nolan just the way he is, he will talk to me one day and even if I don't like legos when he finally does, I will play them with him and it'll be fun."  He's a winner this kid.  He melts my heart.

I arrived home to our soon to be 7 year old and she was playing with her brothers.  Carefully choosing toys that each one would like all while turning a blank book that we got into a Curious George story written and illustrated by her for Nolan for his soon to be 4th birthday.  Imagine that?  She has a birthday 6 days away and thinking of his.  Lucky.  Very lucky.  In her story that is almost finished, George gets to eat ice cream and look at fish, all the things Nolan loves to do.

I went to take Nolan up to bed and said say good night Nolan and Audrey came screaming over, "NOOOO!"  I had a slight heart palpation and then she said,  "I need to hug him goodnight!"  He jumped out of my arms and they hugged tightly, their little hands tapping each others backs.  She blew him kisses up the staircase and he blew them back.  Perfect isn't it?

It's just the same with our little bouncing boy EJ, so many kisses and hugs all day, every day.  He is lavished in love.  What was I so worried about?  What was so scary?  Life? Love?  I am so lucky.  I am that girl that has everything I always wanted.  Funny how on a random Monday that can happen.  Perspective is a beautiful thing.  Let's hope I keep that going past 10 am tomorrow, HA- didn't say I appreciate it all- in between the screaming, fighting and general chaos around here. But, it feels good to know I can feel lucky.  I am.


Thursday, May 8, 2014

normal

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

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

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

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

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

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

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

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

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