Tuesday, October 24, 2017

4 weeks

Today marks 4 weeks since August had his open heart surgery to correct 5 complex issues inside of his very little heart.  I have said it many times, that August Sawyer is writing the story of their lives and this is absolutely my sister's story to tell.  But, I can't not write about him today.  
This is a story so much bigger than a little boy's broken heart.
So broken, in fact, that some believed it was unfixable.  
And maybe even I believed so too for a time.  Out of fear or out of surrender or out of helplessness.  
But not Gus' mommy.  
My sister; my baby.  
She has always called me strong and brave but let me say it here that nothing compares to her quiet strength or HER tenacious bravery.  SHE is the hero of this little boy's life.  
Of his heart, of his every breath.  
Jeni is the hero mom of August's story and I want the world to know it.
If you haven't visited Jeni's caringbridge page, please feel free to do so and read all about my little buddy's journey so far.  (www.caringbridge.org and search August Bassi)
At a whopping 3 months old he has endured more than most people will in their entire lifetime!
  But my gosh, he is incredible.  
And let me reiterate:  my sister, the new mom who was scared and postpartum and tired and still healing...she had to rise up and fight this battle from day 1 for the life of her child.  
And I am in complete awe of her.  
So if you're just reading here I'll catch you up just briefly. 
We knew Gus' heart was bad.  Like, it wasn't good at all.
We knew the stakes were high and that really, he needed to grow before the Dr's felt comfortable proceeding with a surgery.  We heard that the surgeon had performed all that he was to do inside of August's heart (many times) but maybe not ALL together.  His heart?  It's complex. 
It's arteries are narrow and there are 'murmurs everywhere' and some holes and then and some of the problems were actually helping instead of hurting.  
Until, at some point, that wasn't the case anymore.
And he was in total heart failure.  
Before August received his open heart surgery, on one of the few days that Jeni happened to be at the hospital alone (2 hours away from Matt and 2 1/2 from the rest of us), he had to be intubated due to a rapid sepsis infection.  I left immediately, as did Matt and my mom was already on her way for a visit (on the train).  This infection was horrific but the doctors assured my sister (after a few opinions on the matter) that if August could fight through it, they would proceed with a surgery and they could be successful.  In a way, the infection propelled them to act and in a way, in hindsight, I'm really thankful.
 The boy was really sick.  
And I thought I might die of agony having to watch my sister live out the worst moments of her life.  I thought I might die of actual, physical heartbreak at the notion that I would never get to truly know my nephew, the brown eyed boy who's broken heart was fixing mine merely because he was alive!
  I cried hard in the bathtub and dry heaved in the night, mostly out of utter fear and anguish for my sister.  
 I knew that this is what she had done over me for 5 years.  
But I didn't know.
And oh my God, so selfishly, I never ever wanted to have to know.  
Matt asked remarkable questions for his son and my sister learned everything there is to learn about a heart and kidneys and medicines and machines.  The two of them championed for their child, their firstborn and only son.  The two of them lit up the world with the fire that they burned for August.
After all, HE is who they wanted, hoped for, prayed over, waited on.
  HE is theirs.  
Four weeks ago today, August did have an open heart surgery.  Chris and I made the drive simply to be in the same city that Jeni and Matt sorta called home for 5 weeks.  
And then we got the call, right around 8 hours after surgery had started, that it also had ended.  
August came off of bypass and the road to his healing could begin.  
The surgeon, my sister said a day later, pointed toward the sky and said "He is a healer."
Boy don't we know.
 Gus was sedated for what seemed like forever and his body worked hard at healing.  During that time, I still feel like a sacred bond was forming between he and Mabel.  In my heart, I feel that when he glances up and to the left that maybe he's watching for her still.  
 This little guy came right along and even though the days after surgery were really exhausting and still frightening, the team of nurses and physicians that were taking care of August were incredible.  They did Heavenly work and kept him alive and then....
The boy woke up.  
And he knew my voice!
And he even smiled.
"He is a healer."
Oh, don't we know it.  
 So after his surgery some of the CT scans showed that there are parts of his arteries that are still more narrow than we'd hoped.  In a few weeks, August will undergo another procedure (in the cath lab) to help open those areas up once again.  
It was been weeks since Nora and Braden have actually seen their first cousin in person.  They have worried and prayed and bargained and cried over the life of this little boy who they love so deeply and I am so proud of them. 
They ask profound questions.
They articulate their concerns.  
They want honest answers.  
And they face the truth with great courage.  
Nora and Braden learned the true meaning of sacrificial love when they lived with and loved their sister.  And although they tell me that they forget what it's like to have her here, or what she looked like or sounded like-I remind them only of the love they had for her and the immense, overwhelming  love she had for them.  That isn't something you forget.  And when you feel it again, nothing in the world can replace or duplicate it.  
 Gus officially came home after his surgery, leaving the hospital knowing that not only would he need to return for echo's and a few other appointments but for future procedures.  
During the last couple of weeks, visitors have been limited and will need to continue to be so that he can remain as healthy as possible before they take him back in to try and correct, once again, the thing that makes Gus, Gus.  
So while the rest of the world is hurrying on around us, spinning and spinning like usual...ours has once again slowed way down.  Jeni doesn't leave the house and so I go to her.  And I sit or walk and hold this boy. 
It feels familiar and in these moments I thank God for teaching me how to just sit still and be alone with Him and my sick baby.  Because I can do that now.  I have not only gotten good at it...
I have perfected it.   
 I would hold my sister too, if I could and if she'd let me. I want to nurture and take care of her too.  I pray that my presence alone helps to do that while she has to dig down deep and give into that fire in her belly and rise way up to be this tiger mom that she never asked to be.  It isn't something you dream of or desire, that's absolutely for sure.  But it is something that, if called to, you do and you do exceptionally well...
...Because you are suddenly the mom of this incredible gift wrapped in human skin.  You have to be  good at unwrapping the gift; whatever lies inside.  And when unwrapped, if you don't love every single thing about this gift, you fake it and smile and thank the Giver for the gift because, after all, He chose to give it to YOU.  When you suddenly become the mom of a sick child, it is really hard to separate the sickness or the 'thing that makes them sick' from your child's entire being.  But you eventually do do that.  
And eventually the parts of the awkward package that were once terrifying and maybe even embarrassing to open, are wholly beautiful.  In fact, you are overwhelmed that YOU were chosen to receive all the many things wrapped in that one, tiny, perfect little package...
...who eventually makes you YOU.  
 Anyway, I just want the world to know that August and his mom and dad are all amazing.
And I'm incredibly proud.
Sometimes, still, I'm perplexed that this miracle really happened.  But I breathe it in so deep and just keep thanking Jesus for every single day.  Every single mercy.  Every single answered prayer.  
 For the whole wide internet world record:
Auntie and Gus are totally in love.  
We spend the hours that we are together smiling and cooing and laughing and playing with toys and trying on hats and costumes and walking and singing and talking and dancing.  
And sometimes crying with mommy over how crazy this life has been and continues to be. 
 Oh, and on the days that we don't see each other in person, Gus facetimes me.  
Like regularly.  
 So many emotions.  So many obstacles.  
Probably even more to come.  
But, my God, he's worth it. 
And I adore him. 
 As posted on my Instagram earlier today:
"4 weeks ago looked so much different.  It was terrifying and heartbreaking and gut wrenching and confusing, and the obstacles before him seemed horrifying.  Step by step his mommy and daddy rose up, stronger than any 2 people I have ever known and did the most incredible thing:  they fought for the chance to love, get to know and give their son life.  
I have learned so much in the last 3 months.  About myself, about hope and faith and God and medicine and grief and overwhelming joy.  And even about miracles.  The kind you really fight for and don't just surrender to.
This boy has the hope of living because of incredible medicine.  Invaluable research and funding and interventions and life saving, ground breaking technology.  Because of wise doctors who aren't afraid to take chances and also, surgeons who aren't afraid to say out loud when they have witnessed a true miracle.
Our girl didn't have these same options.  There is a stark contrast in the ways that August and Mabel's sickness' impact our lives.  Early on in Mabel's disease, I remember feeling resentful of the amount of money being given to CHD research when MY baby was dying from an orphan disease with no cure.  Was she not worth the money and research required to save her life?  It was such an injustice in the middle of my already overwhelming grief.  But I came to peace with knowing that she was supposed to be exactly who she was, "sick" or not sick.  And I was honored to have 4 years and 10 months to really get to know my child...
Now?  Now I couldn't be more in awe, thankful and downright humbled by the amount of money given to CHD research, among every other kind of disease or illness that receives these kinds of life-saving opportunities.  Because, truly, I know that as long as we are living our children are not exempt from any one thing.  And I will forever look at every cause as one that I could one day be personally affected by, and remember that the people I love have been or may be as well.  
Now?  Now I get to know my nephew, too!  I really get to know him!
His smile, his voice, his kind and gentle eyes, his spirit.  This gift is irreplaceable and I am just so grateful.
4 weeks of falling deep in love.  His crazy heart just keeps mending mine..."

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