Friday, September 30, 2011

Home Again

Leaving Doernbecher Children's Hospital with Baby Grace.  We will be glad to not return any time soon!  Thank you for the care!  We were blessed by their research, professionals, and technology.  Gosh she is so beautiful...
This whole ordeal, at times, has felt unfair.  I prepared and planned.  Things didn't go perfectly.  People tell you that preparing and saving for a family is the right thing for some reason, like it guarantees a happy outcome.  They were right and wrong.  It has made us stronger to be prepared for something like this, but it's felt unfair that we planned and dreamed so innocently and naively just to have some of those plans and dreams dashed.

We live in an apartment as we have for the past 5 years.  We decided that instead of a new car or a house, we wanted a baby.  We got what we wished for.  Kris and I would walk and talk and dream of parenthood.  We made a decision as a couple after our graduation in 2009 that our decisions should never be driven by money.  Considering the economy tanking in 2008, this seemed like a responsible turn around of values.  Building a life around the things that truly make us happy will mean success no matter how the numbers look.  If we chase a life of fancy houses, mint cars, and high paying jobs, we knew that we'd be creating stress by inflating a lifestyle that we actually lived well with.  Chase the dreams that don't pay you but reward you.  We aren't rich, but we're wealthy.

So Kris found, or rather already had, the job of his dreams; just now he gets paid a salary with benefits.  I forgave myself for not overachieving and going to graduate school when it felt like the wrong time.  I wasn't ready.  Then I did every little thing that made me happy: taking care of my mind, my soul, my body, and my marriage.  The last two years have been some of the roughest and some of the most rewarding personally.  I feel like I practice the values I always said I had.  Who can say that about their life?  It takes discipline and reprogramming to realize what success actually looks like. 

Would I change my life and my decisions knowing what I know to go back to a life the felt dreamy and rewarding?  A deep and resounding no. Flat no.  We continue to be rewarded in the most bittersweet way.  Would you believe that I'm sitting in my living room typing away while Kris enjoys watching Grace and playing a computer game?  We just took a shower with baby and feed and clothed her.  Would you believe that a little baby that had surgery 5 days ago is in her little bouncer calm as can be, enjoying the dangling toys and fighting those heavy eye lids?  I never thought this is what it would look like following a major surgery.  I would have told you no and expected more hardship and more pain.  Less sleep and more stress.  To tell you the truth, I think some families do experience that.  I know it.  It breaks my heart knowing the families out there struggling with the illness and disease of their little ones for longer than us and through much more hardships.  How lucky are we that this ordeal seemed to breeze on by us rather than sweep us up in a hurricane.

Granted, I understand anyone reading this imagines our life.  They imagine the stress.  The hardship.  The unfairness.  And everyone feels for us and their supportive words and condolences communicate their sympathy. I suppose it is hard to explain our life.  I was able to be normal most of the time because my little girl needed an emotional stable mother.  So I kept my worries in my pockets and a smile on my face.  You begin to get good at it, until you get worn down. 

I'm not denying I felt I was diagnosed with cancer.  I felt like I couldn't live beyond the next appointment or test.  Like I couldn't dream of my little girl's future.  It was sometimes manifested mostly subconsciously and I became aware of my actions over time. I didn't clean her clothes or diapers thinking I wouldn't get to use them.  I didn't sign up for diaper service because I'd have to explain to some stranger why my baby was gone and I wanted my money back.  Even after having her, I was prepared to live just this 5 weeks before her surgery.  Never planning or dreaming too far out lest I be gravely disappointed if I didn't get to bring my little one home.  I didn't imagine her playing and fighting and loving my niece Aili and nephew Rowan as brothers and sisters do, that is until the week before her surgery.  I admit I still struggle, but I challenge myself to dream more despite our new day to day lifestyle of coping.

It is hard when you've lived with conviction about everything for two years.  Diet. Family.  Money. Marriage.  Friendship.  Practicing what I preach.  Living modestly and being ruled by my heart rather than money or greed.  Being proud of things I make with my own to hands.  Hard work. It's hard because when you live with conviction, you develop faith and you foster gratitude.  You are thankful for the simple moments that bring little rays of sunlight to your life.  You eat them up.  You learn to love what you once overlooked.  You begin to see a morning cup of coffee not as an addicting supplement to power you through a rough or long day, but rather as a tasty gift to savor while you listen to the radio and ease into a productive day.

So when someone tells you that all that control, all that conviction, all that confidence you have cannot change the fact that your unborn baby could have a life altering or life ending cancer, you feel quite lost and quite dead inside.  Like you yourself was given days to live.  No control, no plan.  Was I able to cope the way I have because of my convictions and my previous level of personal contentment or in spite of it?  Some days it's the first and others it's the latter.  All things that made sense don't follow a pattern anymore, therefore you feel betrayed.  Lied too.  People told me that doing A,B,C would bring .... hell I don't know. Something else, but not this. Not this.

And yet "this," it's been better than imagined.  Easier to handle.  Still hard to cope with but less serious in a way.  I know there are families with neuroblastoma that aren't as lucky as we are (and I hope we continue to be) and my heart breaks.  I pray for them, knowing that the love we received can't be returned.  It has to be passed on.

I felt lost because that voice inside that tells you to everything will be ok was quite silent.  I listened and listened.  I begged.  I sobbed but mostly I weeped.  And I begged for that inner voice.  I sent my feelers out into the universe and felt all too alone.  I listen now... and it is reluctant to celebrate.  I want positive and favorable test results before I really lose it and break down and cry that I won't have to worry for my girl anymore.  I realize the tragic irony.  I will always worry about my little girl.  See?  I'm rewarded and blessed with a gorgeous, happy baby.  She is amazing.  She is sweet.  Just genuinely sweet in her comportment.  She is sassy and funny and already a daddy's girl (why don't the call it girl's daddy... because he's hers sometimes more than the other way around :D).

Sweet she may be, the worries continue on par with usual parenting concerns maximized by her diagnosis.  This morning, after some large chunks of sleep for both parents and baby, we were all awoken by a scream unlike any we'd heard before.  The kind that comes from a baby that makes you think she accidentally got her head stuck in the railings of her crib or has ripped open her incision- these are the harried panicked thoughts that come to a sleeping mind startled awake. She has been constipated by the pain meds and wakes from a dead sleep with a miserable scream.  So Kris was awakened to go for an early morning trip to Safeway for meds and I called the Pediatric Surgery on call doc... about constipation.  I am glad I did.  We also started weaning her from those meds so that she'd feed more and be less sleepy.  It is a nasty cycle; she has to stay hydrated which is hard when she's sleepy from meds that constipate her, but taking her off it still leaves her with some discomfort as the intestines disrupt and bother her incision.  How to balance?

I fed my little one and laid her down and said a pray that we get good news Monday.   Monday could mean a call from my doc, the funny gorgeous one that can make things fun and light-hearted even with cancer. And when I'm really quiet, I can hear the little voice in my heart that says.... "even if it isn't the best news, we have a plan for that too."  I can't wait to get back to worrying about Grace in a normal way.  Checking that she's breathing at night and during naps.  When it gets quiet, knowing she's into something.  Stopping her from doing generally thousands of failed attempts at suicide by catching her before she runs into the street, before she jumps from a table, before she puts her hands on something hot, before she gets curious about lonely, quiet bodies of water.  I will be glad when Grace is my only focus and cancer is behind us.

It feels like a lie to say we "fought cancer."  The popular status quo is fighting death, taking long to heal, and struggling with a hat or do-rag on your head.  This was only reinforced by my mother's and several other adults experiences that I know.  But I tell myself this: all the research and all the studies, all the technology and health care advancements these are the things everyone hopes cancer research improves, catches early, prevents, and treats with the least invasive treatments with high survival rates.  Due both to the nature of our cancer and the research, technology, and care we've received, I can say this has been a successful treatment of cancer.  It has been several cancer patients and cancer activists dream for a family like mine.  I wish this for those who are really struggling.

See what I mean by rewarding.  It sucks to be rewarded this way, but you take blessings where and when they come so that you don't become an embittered bat-shit crazy cynic.  I can't afford that.  I have to teach my daughter right from wrong and about finding blessings by leading by example.  Here we are, despite my doubts and fears, home again.  Home again hopefully to stay.  I can feel myself cautiously dreaming of all that is possible now that we are home. The three of us.

How do I cope?  Because I have to.  For her and him.

We are leaving fully intact... though missing a piece that we will teach Grace made her special.  It inspired many, it made Mommy and Daddy strong for each other and her, and it showed us just how strong she is to overcome an obstacle like this so young. 
My baby's incision.  We will teach her that this little line is as normal a part of her as her belly button.  It is evidence of the healing power of the body and the healing nature of love.  We leave it undressed like this surprisingly.  And soon it will be that small white scar on her belly that reminds Kris and I how we almost lost the best thing that happened to us and just how grateful it has made us to have our family survive this ordeal.  We enjoy every moment, even the hard ones.  I imagine we will continue to see the ripple effects of our experience for years to come.

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