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..."

Thursday, September 28, 2017

August Update (from his auntie)

My sweet sister says she is not a writer.  
Maybe what she doesn't fully realize is that you become a great many things that you weren't before, when you become a mother.  

You become an advocate, a fighter, a decision maker, a warrior, a no-sleeper, an opinionated, foreign, completely-new-being.  
To sum it up, I suppose you just become when you become a mom.  

You transform.  You shift.  You evolve.
You grow and learn and change and as your child is birthed into this world, outside of you, you are birthed brand new again too (inside of you).  Suddenly your entire being, including your spirit no longer feels familiar but completely unfamiliar.  At first you don't understand her, this new person, and you may not even like her.  At all.  But one day- without warning, this total shift happens and you realize that you have embraced even the parts of her that you weren't ready for.
And you become...
The mother that you were created to be.
Intended to be.

Sometimes not the one you dreamed of being.  Sometimes not even the one you wished to be.
But the one God created you to be, without a doubt.
And my sister is living out that perfect calling right now, being August Sawyer's mom.
And, oh, she is the greatest.
Today is day 21 in the cardiac ICU at Lurie's Children's Hospital in Chicago for Jeni, Matt and Gus.  They are 2 1/2 hours from home and August is 2 days post op after an extensive open heart surgery where the surgeon's corrected not one or two little complexities in his heart, but 5 total. 
Currently he is still sedated but stable.  
Today, they successfully closed the incision in his chest after allowing it to be open for the past couple of days due to swelling.  Jeni texted these exact words to me just a few minutes ago:
"The surgeon just came out and said he's finished.
That God is a healer." 
And I got goosebumps and my eyes swelled heavy to overflowing because in the last week I have told Nora and Braden repeatedly, "Kids, the whole wide world is watching now.  If Gus lives it is because God will do a miracle on earth!  We saw a miracle when He came for Mabel and took her to Heaven and healed her body! The whole world watched then too!  All we can do is trust Him and see what it is that He will do.  We cannot be afraid.
God is God.  God is God.  God is God.
Either way, God is a healer!"
Soon, the team of doctors will begin weaning Gus' sedation, as long all of his stats remain steady, stable and good.  During this time we need your continued prayers as August's body works really hard to heal.  This process is long and can be really tough.  
Though, we have seen, our boy is a true fighter.
Let me tell you a little about August, from the eyes of his auntie...
Aside from being born with this insanely bad heart that made him sweat and grunt a lot and made his poor new mama question whether he was just a fussy newborn or if there were new cardiac changes, he is a really funny boy!  (Her instincts were always right, by the way.  Again, she is a great mommy!)
  Before this rapid decline of his failing heart, he learned to smile and even coo!  He was following toys with his eyes and was loving (ok hating) tummy time for me, his therapist/Auntie:) 
  He loves his momma-roo swing thing (Admittedly I don't even know what that's called because we had an old wind up swing for my kids), and he is still currently tongue tied which makes him a really ridiculous, frustrating (and kinda funny) eater.  He makes the most hilarious pouty face with his bottom lip puckered out just like his mommy.  He loves to sleep with his hands up by his head and he likes the car, though we hope he can go on more rides now that he might not have to load those big old oxygen tanks around everywhere he goes.
This boy has given his mommy and daddy and all of us who love him a run for our money in just a few short weeks.  He is SO handsome and his spirit is really the sweetest.  Like when you hold him, you hold a piece of Heaven.  And I'm not just saying that.  Trust me, it's true. 
I told Jeni in a text on the night of his surgery that I felt like maybe God knew that these few days while he was sedated would be the only time that he and Mabel could really 'meet' and play and maybe we needed to know that.  Even though the total realist in me finds it hard to believe, I'm sorta surrendering to that sweet notion and am really hoping that somehow it's true.  Because thinking that he's seeing her in his dreams right now makes my heart feel peace that I can't explain.

I also told her that his poor little broken heart helped heal most all of mine.
And that is true.  Oh, it's so true. 
[photo sent to jeni & i from my mom while she visited an art museum today during Gus's chest closure
No coincidences...not ever.  ]
Please continue to pray for my little buddy. 
And for my sister and brother in law who have endured so much already.  Who have been at my side during the hardest days of my life and who's sides I will never leave.  They are brave and strong and full of so much love for their son.  I am so proud to know and love them both.  
My sister has been writing beautifully about her journey on their caring bridge site.  In fact, she may just be a writer after all... among many new things now.
You can visit it by going here: and searching August Bassi
 [You may have to input your email address and a password. Please take the extra time to do so, it's really worth it!]
Also, SO many of you have been asking how you can help Jeni and Matt directly. 
I'm the girl to ask, seeing as how I am 'Miss Direct' and all :)
Most of you personally know (or have been affected in some way by) the emotional, mental, spiritual and physical stress that families with special needs children face.  My sister and Matt had no idea that August had CHD before he was born and were quite literally thrust into this journey with him 12 weeks ago completely unprepared.  The financial burden that they will face in the weeks, months and years ahead will be great.  Because of this, some of their sweet friends created a paypal account that will remain open as a place where people can give as they feel led.  I am completely behind this notion because I just believe in helping those who need help.  

I have been on both sides of that in this life; of giving and receiving and of course it has humbled me deeply at times.  But I truly believe that the seasons for both will ebb and flow as life does.
  I hope that you see it the same, and if so, that you will give as you can.  If we help lift the burdens of others while we can, I know that when we face trials in the future ours will be lifted as well.

Also, there is currently an online scentsy party happening where part of the proceeds will be donated to Jeni and Matt as well.  Happy ordering!
Thank you in advance.
We have felt your prayers and feel your love.  We are always so grateful.

Saturday, September 16, 2017

keep digging.

I have had a horrifying repetitive dream from the time I was a teenager until now.  It is very vivid and it's graphic details stay with me.  It's short and to the point.  Essentially in the dream, I am in an empty bathtub and I am beginning to shave one leg.  I start at my ankle, and I drag the razor directly up the center of my shin bone, digging so hard the entire way that I'm literally carving the skin as I go.  The blood is pouring and I can feel the blade scraping bone.  
And then I wake.  
And I just don't know why.

Currently I feel like I'm in a bathtub with no water.  Blade on bone, scraping and blood pooling around me.  With no purpose and no logic to any one thing that is occurring.  
But vaguely and quite sickeningly it seems repetitive.  
Sick baby.  (only not mine, I'm not comparing.)
Hard diagnosis.
Multiple defects.
Very Rare.
 No known cause.
No real answers.

Bone digging.  Bone digging.  Bone digging.
When Mabel was sick, even at her very sickest, I remember saying on many occasions to my sister and my closest friends that I was so sorry for them that they had to watch all that I endured and feel the kind of helplessness that they must have felt.  I was sorry that THAT was their role in my journey.  And that I realized, at times, that had to have been even harder than what I was enduring.  
And I even remember praying that I would never ever have to be on that side of things, because I just didn't think I could live through it.  I watched their eyes watch mine and for years, they had to ebb and flow with my grief and it had to have been the most emotionally exhausting and taxing thing to be a part of. 

I have had to watch some of my friend's go through divorces and other life changes that seemed impossible at the time and that alone was gut wrenching.  I'm not sure if it was because my heart was already so tender from grief and loss or because by nature I am the world's deepest empath, but literally it consumed my being and my ability to function was immediately restricted because I just wanted to be able to do something.  Anything.  The feeling of total and complete helplessness isn't something I have ever been great at feeling.

But obviously in the many years of anticipatory grief and now, true grief after Mabel died, I have done alot of work.  
Within myself.  For myself.  Because of her.  
And I am a better human now.  
So I thought that if the ground beneath me ever got shaky again, I really would be able to manage my emotions and rise up and still be well.   

When my sister was pregnant with August I was really struggling.
  My grief was peaking anyway and the sudden worry that I had over him consumed me at times.  I couldn't always articulate it and still, to this day, am not sure that if I tried, I would be able to explain to her or anyone what it was that I was feeling exactly.  There was fear there, of course.  But looking back I am not so sure it was a negative fear or even a fear that was there strictly based upon the fact that Mabel had died.  In hindsight I can't help but wonder if God was giving me some sort of insight or quickening in my spirit so that when it was revealed that Gus was so sick, I wouldn't be as shocked or devastated as I may have been thinking that he was completely healthy.  Granted I wanted him to be.  I prayed that he was.  But I think that the notion was always in my mind that we aren't exempt from something terrible happening so it was a true possibility that he could be unwell also.  
Maybe God stepped into my very tender heart and showed it mercy by letting me feel, very early, a little uncertainty so that I could begin processing that then and not now.  So that I could be strong now for my sister who needs me more than ever before.  
Maybe He is just that good and sovereign and perfect and Holy that He would reach down into my aching and busted and broken heart and whisper, 
"Hey there sister-mom.  She's going to need you soon.  So here it is, a little fear and sadness for you to work through.  Do it now and do it well.  You know how.  I trust you and I know you'll be good for her in due time..."

And here I am.  In due time.  
On the other side of things.  
In the shoes that she once filled for me.  And let me say with clarity to the world...
She filled them well.  
Perfectly, in fact.
She was the greatest for me and I will be the greatest for her.

She watched me suffer.  She watched me ache.  She watched me dance and praise and curse and sing and puke and eat and ache and live and die over and over and over again.  Sometimes daily.
And she watched my baby do those same exact things, both metaphorically and literally.

And even if I have to do the same exact thing...
I will.
Without a doubt.  No questions asked.
But I don't understand it.  And I don't want to.  And I don't like it.  And no, I don't think it's good or right or fair.  
Late at night when my mind is racing and I need it to just be quiet, I have been watching a show that I love on Netflix.  A line from last night's episode may stay with me forever...
"The forces that led you here will lead you to go forward if you just listen..."
'Sometimes it's just hard to hear.'
"Yeah, well, usually people hear better when they're in pain.  Damned if you don't have a high threshold for it."

And I thought to myself how powerful that was.  
I still feel so much of this situation and I'm so thankful because my threshold for pain actually is really, very high.  But I also feel this strange peace and calm and I hear myself saying things to my sister that I wish I wasn't saying and I wish never had to be talked about or said at all and I realize that THAT may also be because my threshold for reality and pain is so high.  It's a very fine line to walk and I want to be very careful as I balance it.  
So I hope you'll pray with and for me as I do.

Because being on this side of things is all new to me. 
It's a place I never wanted to be, although once again, I wasn't naive enough to think I never would be...I suppose I just hoped I wouldn't actually HAVE to be.  
And especially just 2 years after we buried our girl.  
Yes, our girl.
Now, my sister is in the fight of her life for her boy.
Our boy.
The little boy who gave me courage and hope to love on.
He healed me and cracked me wide open.
And I want him to grow and play and live.
But I'm going to be honest here and say that after Mabel's diagnosis, I stopped praying for God to do specific things.  I was once part of a church that taught us to do so and then told me that the reason she wasn't being healed was because I didn't have enough faith or I had hidden sin in my life.  I heard the voice of God in my heart more clearly than ever say to me, "That is a lie."
I walked out that day and I have never been back.  Not to any church in fact.  

I realized soon after that, that praying in that way is in essence trying to change the perfect mind of the perfect God.  And I didn't want to do that.  I only wanted the perfect God to do His will inside of my perfect child.  I needed to change my perspective about what that meant, how it looked, and everything in between.  And when I did, it was transformational in my life.  The bargaining for hers stopped and peace poured out of me, knowing that the world's definition of unhealthy and well were different than mine and I was ok with her healing happening in the arms of Jesus and not here.  

Once again, I am not comparing my situation with Jeni's because they are not the same.  My thoughts are everywhere and it's all jumbled and it feels very erratic and chaotic and unjust in my heart but I am going back into the place where God lives and digging deep into Him and into myself to really listen and be still and know that He is still here and He is still good.

So what I was getting at was, I am not asking you to pray for anything structurally or physically specific over my nephew.  Though if you believe in that way or like to pray in that way, by all means, please do!  Otherwise, please continue to pray for the doctors, nurses, surgeons and all staff that is seeing him.  Please continue to pray for strength and endurance, peace and wisdom in Matt and Jeni.  Please pray for peace.  Total, incomprehensible peace.  

And on our end, please continue to pray for Nora and Braden because as you can imagine this has been unbelievably hard in ways I can't explain for them.  
We appreciate your love and support more than you know.
As always.
search: August Bassi.