Sunday, December 10, 2017

The beginning of my "Jesus year"

 I turned 33 on November 25, 2017.  It was a good day.  A relatively normal day.  I had celebrated with the girls the night before, Chris had to work and the kids were in our local Christmas parade.  Otherwise, we spent the day at home together relaxing which was perfect and just what I wanted. 

 When everyone was home and tucked in, I ended the day with a post on instagram saying, 
"Today was a sweet, normal day (which is just perfect.)  I took an hour long walk alone in the sunshine, the kids were in the Christmas parade, I baked cookies (ate the dough) and now am under a new blanket gifted to me by one of my very best friends, watching Netflix and drinking a Vanilla Pepsi.  You know, just 33 and living my best life."

Five minutes later, my mom called me (which is unusual for this time of night.  It was nearly 9 pm and though we text late, we almost never call).  I answered.  I could barely understand her through her bloodcurdling screams.  It was other-worldy.
"Ramee!  The house is on fire!  The whole house is burning down.  You have to come.  Get everyone and come!"

And all within an instant, everything changed.  My childhood home and the home that still holds my brother and my mother-up in flames?  I couldn't reckon it and didn't understand the severity of it even in that moment.  I calmly told the kids to get clothes on and warm coats so that we could go.  Nora cried the entire 5 miles to my mom's house.  For the first time in her life, I saw a normal response to trauma as the tears flowed freely.  She was afraid, pained and visibly altered.  I feared in that moment that she had a better idea of what this meant than even what I was able to process.  And I remember comforting her, thinking that exact thing. 
Before we left, I woke Chris to tell him what was happening but I didn't have enough details to know if the entire house was actually burning down or if it was something that would be put out and salvaged.  He had worked 13 hours and was due to be back up in a few to do the same.  I left him sleeping. 

As the kids and I pulled down the highway, we could see smoke pouring from under the viaduct.  Every fire department around our small town had managed to show up, only minutes before we did, from what I hear.  
The scene was horrifying for me and obviously for the kids.  We knew my mom was safe and I had an idea that Jake hadn't been home (thanks to snapchat) but everything else was really chaotic in those first few moments. 
 Thankfully, my Pawpy lives right next door to my mom.  If you recall, Nora and I lived with him in the 'basement apartment' of his home while her dad was away on deployment and we brought Braden home to Pawpy's house when he was born before transitioning into our own home as a family.  
Right next door to my mom. 
 Thank God.
 So we found my mom, traumatized and really inconsolable right inside of Pawpy's house.  It turns out, her pup Maggie had managed to bark and scratch enough to wake her from a deep sleep and literally helped save her life.  Mom made it out the door after she woke and realized what was happening, with both Maggie and Jake's dog Winston, but realized she forgot her car keys so ran back in to get them.  Winston followed her inside and as she made her way back out, he would not follow.  She called and called for him but she couldn't breathe and the 911 dispatcher begged her not to go back in.  It took everything in her, but she finally drove to Pawpy's.  
She doesn't even remember calling me.  
About 45 minutes after being there I realized I hadn't asked her if she had called Jeni.  She said that no one had.
Jake had just gotten there a few minutes before and asked about Winston. All of his fire fighter friends had been with him that evening except for one, who was actually over at our house trying to save Winston probably during this exact time.  

 My vantage point from the night is really painful.  
Total sadness.  Such destruction.  Severe pain.  
It was like something I could never imagine.  But it wasn't a dream as if it felt.  It was happening. 
I called Jeni.  She was calm and said she was coming.  She came.  By then, they had found Winston, tried to save him and weren't successful.  They brought him to Jake, wrapped in a blanket with a toy and we got to see him.  Just too much smoke inhalation.  He looked beautiful otherwise.  The firefighters were there for hours and the house is a total loss.  

I watched as they pulled old photos and other things from the smoke and flames.  The next day all of Jake's friends, Jeni, Chris, the kids and I got to go inside and see for ourselves what was left.  
Our house.  His house.  Their nanny's house.  Mom and dad's house.
 It feels like a death.
I know it's only been 2 weeks but some days I still wake up and feel like vomiting and some days I wake up with tears already formed in my eyes.  
People move houses all the time.  But my parents had not.  They had lived in this home since they were married when my mom was 19 years old  All of our memories were inside it's walls.  All of our adventures were played out here.  All of our Christmas mornings with grandparents and celebrations of Mabel's life were carried out in the yard that held this home. 
 People say "things are just things" and that is very true but sometimes things hold value and complete our memories.  They are sentimental and irreplaceable like the lock of Mabel's hair that my mom kept in her drawer, for instance.  
Things are just things and they don't compare to the lives that were save, of course, but going through those things in the bitter cold the following day felt like going through the ashes of a life that has been destroyed slowly, slowly and then suddenly-all at once. 


  I've seen the debris from homes that have been destroyed by fire before but only in photographs.  My brother, on the other hand, fights fires in his free time as a volunteer firefighter.  He has been up close and personal to this kind of destruction many times before.  The irony in that has made me physically sick on so many occasions over the last couple of weeks. My heart is broken for him.

There is nothing in the world that can prepare you for facing this kind of devastation.  There is nothing at all like the smell of a home destroyed by fire.  I could have never imagined how wet it all would be.
By day 3, Jeni and I couldn't even make ourselves go inside.  It just made us both too ill to even try.  
The physical smell and sight, yes.  But the emotional burden was just too heavy.  
 A home was never just a house to us.  
My mom worked really hard our whole lives to keep our home clean, and decorated.  It always smelled good.  It felt safe.
Our dad worked hard all of these years to ensure that we had a place to come when life outside of those walls was too heavy to bear.  We got to go home.

Growing up, so many of our friends practically lived with us at different times.  The door was always open-to anyone.  Even as Jeni and I left home (me at 18, she...much older), Jake and his friends still occupied that little house with all their big bodies and muddy boots.  In fact, after the fire as we all stood in what was left of the living room, one of Jake's best friends walked through the 'front door' and they all laughed and joked that they weren't aloud to use the front door!  Suzy said they couldn't! 
   After some investigation, we believe the fire may have started on the front porch.  
Which is really kind of irrelevant.  The point is just that it started at all.  
On my birthday.  And it's horrifying. 

A few months ago, in the middle of the summer heat, all of my friends and their children gathered here at my mom's house to make prayer flags in honor of Mabel's birthday.  We released balloons and sang and the next day my mom strung those flags together and hung them beautifully from this front porch.  The porch where my mom, Mabel's Nanny, would swing her on Easter Sunday year after year so that I could enjoy Nora and Braden looking for eggs.  The front porch where Jeni and I spent hours roller skating as little girls and would watch the storms roll in with my dad on many summer nights.  The front porch that I worked really hard at painting the summer that Mabel died, with worship playing through the valley and the sun beating down on me; it's heat like flames upon my back. 
 I mean they say that a house is just a house and that home is where your heart is.  
And those things are true.  But they are also platitudes of comfort in the midst of something awful when people don't know what else to say.  There are moments when those things feel like such an injustice to hear after you've already endured so much heartache.  
This home is where our heart is.  Of course the memories are about the people who we shared this home with and who joined us in it time and time again, but also-these walls were sacred and important.  

And I'm grieving them deeply right now, among many, many other complex things.
  I'm also rejoicing, of course.  
That my mom is alive.  That August is alive!  That Maggie is alive.
But the juxtaposition of it all is actually heart wrenching.
My sister and Matt were able to bring August home just a few days before the fire.  He was able to spend his first Thanksgiving at our new house with us!  It was all so beautiful and profound and miraculous and as a family, we were (and are) thanking God so relentlessly for His mercies and miracles.  For saving His life!  For taking Mabel so that she could have life eternal!
  For redemption in so many, many ways.  

And then I watched the flames consume our home and I physically trembled from the cold but felt absolutely nothing but shock in those moments, only able to think:
Watching this feels like a physical representation of the emotional pain we've all endured for so, so long.  

I watched and I watched and I wanted to just keep watching.  Because nothing in the world could ever compare to the pain my heart has felt except possibly the bright orange flames against the dark black sky that night.

You see, when you have held death in your arms, nothing else feels quite so scary.  Nothing else provides such relief.  Nothing else touches the kind of suffering and sacrifice and surrender that you experience while cradling death.
And I have done that.  Held life and death, almost simultaneously as she breathed and then stopped breathing...

But watching the ashes rise and the water pour into the home of my youth, I couldn't help but feel all the things that have been buried inside of me for quite some time now.
Things that I really needed to let myself feel.  
3 days after the fire, it was my mom's birthday.   
We celebrated her life with cake and dinner and singing, all together.  
And I have never felt more grateful because this year, it all could have looked so much different and instead, she is still here with me.  With us. 
 The day after her birthday while the kids were in school, I finally made the trip to the cemetery to decorate Mabel's grave and also the grave of my Nanny and my Uncle Bo (my mom's brother.)  They're all buried together at a little country cemetery that is beautiful, peaceful and perfect.
Again, ironic because the three of them all endured lives that were less than any of those things.

That day at the cemetery alone, I did the physical work and looked down at my hands, bloody from the evergreen and wires and laughed hysterically in the wind and cold.  The mad laughs eventually turned to wicked tears and the release of it all came like I knew it would.
Sweet release.  All alone.  
 Life is but a vapor, this I know.
As another platitude demands:  tomorrow is not promised.  

And that is actually correct.  It is not.  
Not even the next breath is ours to feel confident in.  
I feel so grateful that I have really embraced both grief and life, death and birth, love and heartache.  I realized sometime this year that I no longer ask "why" to our good God who knows.
Maybe there isn't a 'why' to any of it, rather a:

What will you do now, in the midst of trial?
What will you do in the face of grief?
What will you do in the shadow of destruction?
What will you do in the wake of a miracle?
What will you search for in the ashes?
Or maybe it's a 'who?'

Who will you call on to save you?
Who will you trust to see you through?
Who will you give all the glory for all of it?
Who will you turn from?
Who will you seek?
Who will defend and protect you?
Who is your God?

 I know my who and I know my what.  
I might even know the why and feel total peace about it.

I know, though, that it isn't easy to find it or feel it and I don't even think that God expects that from any of us. You may not feel like He is good, or kind, or fair.
 And all of that is ok.
Just know that even still, He is there. 
He doesn't leave because you don't feel Him.  In fact, He never leaves.  

In the vapor of the smoke or the air or the loss or the joy or the despair or the fulfillment or the miracle or the total let down...
He is there. 
As I look now at the debris of our home, and the lives of some of the sweetest people I ever loved in the ground beneath me, I realize more than ever before that life here IS but a vapor and I want to live it fully.

Loving fully.  Feeling fully.  Grieving fully.  Surrendering fully.
These earthly things really will all pass away.
But what will I have to show for it when I stand before the King one day?
Hopefully, most importantly, a life lived with truth and conviction-honoring Him in it all. 

Monday, November 20, 2017

take notice.

We used to live near a cemetery. 
I walked Mabel there many days, mile after mile.  Sometimes in the sunshine and heat; me with sweat pouring and she in nothing but a diaper.  And sometimes in the fall breeze, bundled tightly under a blanket while I pushed her with cold air rushing quickly to my lungs, scorching tears streaming down my face.  
Every single step hurt, then, with anticipation of what was to come.

Nora and Braden would go with us sometimes and they would ride their bikes along the winding paths ahead of us.  I had a Bluetooth speaker that I sat in the empty seat next to Mabel in the double stroller during those walks and as the music played, (sometimes worship and sometimes rap), I would set myself free as I pushed and pushed my baby, watching my other two familiarize themselves with the land of the non-living.  I knew their sister would not be buried in this exact cemetery because at 2 years old when we received her diagnosis, I already knew where I wanted her body to rest and it happened to be 10 miles west of town in a sweet little country spot called "pleasant valley."  I did, however, want her siblings to see this place as somewhere that they could always go, in the sunshine or the cold, in the heat or the rain...and feel peace.  That it was not something to be afraid of but instead, something to honor.  Something to hush about.  Something to be at peace with.  

They were so little then.  It feels like a lifetime ago when their little voices would ask such deep questions.  I remember purposing myself to always answer them honestly, no matter how hard it felt, knowing that one day they would appreciate the truth that was told to them along the way.  So as her legs jerked and kicked and her body slid further and further down in the stroller, I pushed her. 
And I pushed myself.  And though some days it felt more like dragging, I know ultimately I pushed them too.

I haven't been back to the cemetery (for a walk) since we moved from the big white house on Webster street...
until today.
It was 54 degrees and the sun was brilliant.  I ran close to 4 miles before deciding to head down that familiar road and walk the winding paths that I once walked with my baby in front of me.  It was beautiful and it felt really good.  
I miss her but there is just no doubt that she is near.  
[a lit-up-just-right heart tree.  no coincidences]

I love days when I can really be alone with myself and just appreciate the time for what it is.  Not overthinking or even over-feeling.  Just being present with myself and nature and God and letting it all just be.  That is so important and so few of us really practice this concept.

Along the way today I was struck by many fleeting thoughts.  All of which I let myself ponder for a few moments before moving on to the next; being careful not to obsess or fixate on the thought itself, but rather allowing it to come to me and then pass again.  

I thought so much today (and most every day) about all of the people I have met on this journey of grief and how incredibly special they are.  More than being courageous and strong and inspiring, these people are just truly authentic.  They are raw-to-the-bone because they literally do not have time not to be.  
Grievers crave realness.  We crave genuine connections because we have literally stared into the face of death.  And when you have seen it; when you have seen death's don't ever want to look at anything less real than that ever again.

For me, unfortunately, it has become increasingly hard to live in a world that feels so trivial on most days.  I crave deep connections so intensely and cringe at mediocre small talk.  I long for interactions that feel like the ala-teen meetings of my youth. I literally yearn for a room full of people who could say any and everything that I'm feeling or, who don't have to say anything at all because they already just really get it
But I also don't want that and hate the idea of it because that means that there would have to be an entire room full of mother's who's children have died and who are really sad, mad, lonely, and exhausted of feeling it all.  But if it existed and if I could walk into that room just once every day, I know that a single nod or one very simple gesture would probably be more true than any other conversation that I find myself in (with actual humans) regularly.

My closest friends have expressed that they struggle with knowing this about me and that makes me really sad.  Sad that they have to sit at a table and wonder if what they're saying matters to me at all.  (Of course it does.)
  Sad that at some point they may not even want to do that anymore because the tip toeing is all too frustrating for them.  And I get that.  I just don't know how to change it and am not sure that I want to.  The depth of what I have felt, witnessed, experienced and continue cannot be unchanged after you have walked through the life and death of your child.  Nor would you want to be.  
In the last six months I started focusing on true and intentional self care.  Not the kind that is Instagram worthy.  The kind that is soul-worthy.  The kind that is necessary.  Part of it is simply taking a hot bath at the end of every day.  Some of it involves going back to bed in the morning and not connecting any shame to doing so.  Another really critical thing for me was to make the decision (and stick to) getting a massage every 2 weeks.  My body was so wrecked last winter from the physical effects of grief (and also that little genetic issue that I worked so hard to find) that I knew if I didn't start actively participating in my own healing I would never feel good again.  

One of the greatest parts of this act (aside from the actual massages) is the sweet friend that I have made in my massage therapist.  She has healing hands but also a really tender and healing heart.  She listens and laughs and is kind and gentle and shows me such grace.  Without a doubt, it was the best thing I have ever done for myself both mentally and physically.  She is such a gift.  And she uses her gift to continually pour into me.  It has shown me that I can now identify my physical weaknesses and receive help in healing them but also that I can still make new connections and friendships.  I can still form rich, deep, interesting relationships with people that will be lasting, even after the death of my child.  I can still actively participate in the healing of my heart as I continue to forge ahead in life, without Mabel.
I also thought today, and actually I think about it probably once every single day-
about church.  
About my relationship to it, my role in it, and how much greater my love for God has been without it.  How it makes me sad that the kids aren't experiencing it but how grateful I am that they're being given this really great gift of learning about God in a way that isn't restricted or boxy.  I think about the relationships that were made during my time in the church and how they failed so miserably in the worst years of my life.  How those relationships could be sustained in the sludgy gutter of life..  I still feel so outraged by the hypocrisy of it all and by so many, many things surrounding 'the church' that it takes a lot of sorting through in my mind to get to a place of letting those thoughts go before they become really heavy and totally unhealthy.  I will wade through them better another time and write them here because I do think it's important to do so.  

I did conclude, once again, on my walk today through the cemetery that I am really grateful for where I am now.  For the expansive and all-encompassing thinking that I have gained.  For the really unhealthy relationships I bid farewell.  For the strength to do so.  For God's mercy while tending to my totally shattered and really damaged heart. 
For His presence-outside of a building but so deeply rooted in me.  
I have never felt more grateful to be alive than I do when I am alone with Him and can feel what it is like to feel Him so intimately connected to me.  No distractions; just the Lord and I.  
This Thanksgiving week I am thankful for just a little more courage than usual.  The kind that led me through the cemetery on this perfect fall day.  The kind that let me think about such beautiful and hard memories with total gratitude.  The kind that will see me through August's surgery tomorrow and yet another Thanksgiving day with one missing seat at our table. 
(A bouncy seat, but a seat nevertheless.)  
That kind of courage isn't just there.  That kind is born out of devastation and heartbreak and total wreckage.  But after a horrifyingly painful labor involving all of those things, you really do see what you are made of.  And there really is a light in all of that darkness.  

I see it more these days than once before and I took notice of that today, too.  
Sometimes that is all you have to do...

Sunday, November 19, 2017

Giving [hard] Thanks

In January of 2016 I started a gratitude journal.  Periodically since starting it, I will find it and read through it and diligently begin adding to it.  I was inspired to do this by Ann Voskamp and her brilliant book, One Thousand Gifts.
If you haven't, I highly suggest you take the time to read it this holiday season.  And again on an ordinary March day.  And then again in the summer heat.  It's brilliant and poignant and perfect in so many ways for the broken hearted and those who just strive for a more extraordinary existence.   
Which is me.  On both accounts.  

Inside my gratitude journal, I just jot down quick moments that I am thankful for among the ordinary every day moments:

6:30 sunrise-so pink
amish candy
school pictures
meeting an expecting mother (down syndrome)
a furnace
pine scented melts
text from Val
house alone; quiet
Braden to Chris "I missed you."

Ordinary moments that are so brilliant.  Moments I might otherwise forget because they are part of the mundane of life.  But gosh mundane is really incredible.  
What I used to take for granted about life; the quiet, non dramatic, easy, gentle pace of our every day- I no longer take that for granted.  Because truly, those moments are few and far between again.  There is this fight or flight response happening inside of me in response to all of the chaos around me. 
With Gus, with grief, for my sister, for myself, for my parents. for my brother, for my kids.

I realize I can't hold it all but sometimes it's hard not to.  My shoulders have grown broad and strong and they tend to accept the weight of the world if I let them.  
So I'm trying to settle back down, grasp my knees and bunker down in the mundane moments that I am lucky enough to experience in between the bigger, scarier, sadder, more fragile moments that sneak up frequently.  
Even with all of this purposeful gratitude, I'm struggling to start this week.  
I miss our baby.  
And if I let myself, I become totally consumed with fear over August.  So I try really hard not to allow myself.  Instead I pray for God's peace to cover me.  His grace to hold our boy.  I ask Him to be with his doctors.  To protect and uphold my sister.  To direct our every step as He promises.  

But I read people's responses to prayer on social media and some of them are so conflicting and deeply painful for me.  Specific verses that people choose to post (that I fully believe, by the way) but that didn't necessarily play out the way that they are written in the life of my child.  That is where fear can seep in, knowing that ultimately God is in control of life and death and every single thing in between. 
The fear of what could happen (to August or anyone I love) is likely never going to get easier.  I just have to be really true to my feelings and honor them and know that despite it all, God's will was complete and perfect in Mabel and is so in August as well.  
And with that peace bubbles up this deep contentment inside of me.  It is THAT feeling that I have to work really hard to maintain every day.  
That feeling that through it all, it is well.  
No matter what.  
Despite it all. 
It is well.

And then I offer up gratitude for all of the many gifts that He gives.  
And I find myself centered once again.  
This time of year brings so much joy and so much pain.  
I think of all the people who were once so tightly knit into my life who are not anymore and it's heartbreaking.  I think of the reasons that they may have walked away and that's even more heartbreaking.  Ultimately I know that those who are meant to be at my side, are, but it doesn't take away the true loss that I feel knowing that others can just choose to not be.  

Sometimes it feels like so much overwhelming loss.
So I go back to gratitude and focus solely on all the gifts that surround me.  
There are so many, after all.  

Today's most spectacular gift?  
My sister being home from the Children's Hospital (for 2 days) and me being able to see her for a few minutes while she made a trip to town.  And to watch my brother hug her for the first time in a really long time.  I watched closely and thought I might die from the extreme amount of love I feel for both of them.  I am so thankful.
This Thanksgiving week as you gather with your family, would you pray for ours?  
There are so many changes happening (as always, it seems) and some of them are really hard and conflicting and devastating.  
And, for August.  He will be having another cath procedure for his heart on Tuesday.  We are praying that not only is it successful but that the Dr's would have wisdom and that God would show Himself in a supernatural way once again.  He has been so present and SO faithful in this little buddy of mine.  
Thank you in advance.  

Wednesday, November 15, 2017

Fall 2017. less writing.

 I stare at the blank canvas that is the screen before me and realize that so many weeks have passed since I have last written.  Not for lack of content.  Not for lack of life happening.  
More so because of it, I suppose.  

So much has happened that has left me breathless.  Speechless.  Word-less.
Which is such a drastic change for my heart because typically I process any and everything with thoughts and words and sentences on a page.  
But finally I am just so tired.  
And content with the outcome of all things because I can't change any of it. 
 I have realized, maybe, that not everything needs analyzed, thought about or written.  
Or...maybe I just can't.  Haven't been able to.  
Don't want to quite yet.

Since I last wrote about August's open heart surgery many things have transpired in our little corner of the world.  My sweet buddy got to come home for a couple of weeks and it was glorious.  I got to see him often and help Jeni in the ways that I was able.  But then things took a turn and he had a few episodes where he was unresponsive and so he was transferred back to Luries children's hospital.  
2 1/2 hours away.  
I have gone a couple of times to see him and even finally took Nora and Braden.  They were unable to see him while he was home because we were all working really hard to keep him healthy, knowing that he would have an upcoming cath procedure at some point.  Instead, he first had to have another (separate) procedure to remove an esophageal cyst.  He did well and is still there recovering.  My sister is exhausted and scared and sad and I am missing them so badly.  

Chris and I celebrated our one year wedding anniversary.  Nora attended her first dance.  Braden played a few games of fall soccer, we trick or treated and carved pumpkins and attended Aunt Rachel and Matt's wedding!  I have had shingles, Braden was bit by a dog, Nora made the high honor roll and attended a Bull's game with her classmates.  Chris is busy at work and I am loving and becoming more and more successful with Senegence (the lipstick company that all your friends are posting about.)  We have settled into and adore our new home and are so anxious to celebrate our first Christmas here together.  We miss Mabel and I have grieved hard, as usual, in the moments that I know she would have been such a huge part of.  
Which is all of them.

I'm listening to a wide range of podcasts lately and am taking the time to really think in the quiet.  I love this time of year for that exact reason but I am also loving how expansive I'm allowing myself to be as I listen to the experiences of other people in the big wide world.  Recently I listened to one particular episode that was based solely on the experiences of grown adults who had lost siblings in their life.  Their perspectives were so eye opening to me.  I drank it in deeply, paused to think and re-played to listen, really allowing myself to feel it all and think on it for days.  The episode that followed was about a mother who went on to have another child after the death of her beloved son.  She spoke so poignantly about the value of experiencing ALL of life's feelings.  She talked of being so spiritually tapped out from the depth of her experiences.  She had all of these intense situations occur in her life and they each enriched her and took her deeper and deeper with God but she expressed being exhausted from it and just wishing for once that life would allow her to feel bored.  I related so deeply to this notion and yet as I listened and walked, really feeling the fall air in my lungs and looking intently at the vibrancy of the leaves on the trees in the sunlight before me, I couldn't help but feel intimately grateful that the Lord would allow me to experience the vast and enormous range of feelings that I have and continue to do so in this journey of my life.  I want to feel and experience it all.  Both the highest of highs and the lowest of lows.  
And I believe, in so many ways, I have. 
And then something new happens and I realize that my heart will always feel all emotions bigger.  The idea of that alone is both terrifying and exhilarating.

So much is changing around me, as it always does.  I feel all of the things that a human can feel in just one single breath.  And I wish there were time and space to write all the sacred things within my heart but I believe, for now, they are meant to be only felt and not spoken.  I have learned somewhere along the way that THAT may be the key after all.  I feel sorry, at times, that I have shared so much here.  But ultimately I always come back to hoping that I will one day feel more grateful than sorrowful for the things I have shared, knowing that they will be read by my children and their children and that the story of our lives was truly valuable.  That the weight of what was written was worth the cost of sharing it.  
And that it was ultimately used for good and to honor God.  I pray, still, that these words do that.

For now, for this very tricky and delicate season of emotions...less writing. 
But some brilliant photos of things I don't ever want to forget that are happening around me.  
Time is swirling and I am reeling.  But even still, God is faithful.  




 [trip to michigan alone.  so needed.]

 [Gus is a facetime pro.  I adore him.]




















 I also share daily moments of our lives on Instagram @rameelin
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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.  ( 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..."