August 2, 2020
The kids and I have been on the road this summer. More than any summer since you got sick.
It actually makes me feel sick sometimes thinking about that.
How it feels like I am doing things without you. Almost like ,
we are free to do things now that Leukemia kept us from doing.
It makes me sad.
Guilt in moving forward without you.
But mostly just a missing you so bad ,
that you aren’t here experiencing these trips with us.
And a true missing of the journey of me and you.
The journey of getting you better.
The journey of hope.
Hope in the next scan.
The next treatment.
Hope in just something better.
I have witnessed the most unbelievable sunrises and sunsets from the beach shore.
And each one is healing and I am grateful.
I am finding you in the sky.
I think you sent me one song while I was at the beach
and I hoped the words were straight from you.
I do believe you are trying tell me you are with me ,
even if I am having a hard time believing it.
This song came on the pandora.
“ when I look to the sky “by Train
“When it rains it pours and opens doors
And floods the floors we thought would always keep us safe and dry
And in the midst of sailing ships we sink our lips into the ones we love
That have to say goodbye
And as I float along this ocean
I can feel you like a notion that won't seem to let me go
'Cause when I look to the sky something tells me you're here with me
And you make everything alright
And when I feel like I'm lost something tells me you're here with me
And I can always find my way when you are here”
I am finding some part of you
with me when I look to the sky.
Whether the crescent moon , the clouds , the sunset.
It feels like some piece of you.
Is it you ?
In a time where the world whole world feels like it is hurting ,
I do not take my gift of being able to heal by the sea
and these sunrises for granted.
One particular sunrise last week
looked like the sky was literally on fire.
and there could not have been a more accurate picture of my insides .
Sometime they feel like they are burning.
I have never seen anything like that sky.
It was the morning after we lost our friend Ramón to leukemia as well.
Drew( his wife) and I have become soul sisters we say ,
I think mostly through our shared love for the unbelievable skies
witnessed from the 9th floor of Emory
But also from the vulnerability leukemia and that floor brings.
She has sent me daily pictures of the sunsets these last months of missing you ,
while sitting vigil with the love of her life.
But leukemia stole his life too
and this caused my insides to boil again.
and I woke up angry the first morning at the beach.
I feel you must have felt it too because the brilliant ,
burning sky you sent me ,
gave me strength knowing you can feel me too.
I won’t give up on this fight for a cure.
This cure of love.
You reminded me in the sky
that the anger is ok
as long as it fuels me in a positive way
to keep Sharing your love .
Because we ultimately know that sharing love is the
I will keep fighting for you and all those who lost their life .
And oh how I miss your love here.
As much as I love these sunrises at the beach.
I miss the 9t hospital sunsets and sunrises with you ,equally.
If I could have one more 24 hrs with you ( besides time at home with the kids ),
I would spend another hospital night with you.
Where all the desire for temporary things of this world are stripped.
And it was just me and you holding each other ,
breathing together ,
eating gummy bears ,
witnessing the sunset into the darkness
as we prayed for just one more day together.
One more light.
One more morning.
One more shared cup of coffee.
Snuggled close in the tiny hospital bed,
Where closeness gets a deeper definition.
Nothing else mattered.
Just a prayer for more time.
To love each other.
Yet I know it’s not true that we are moving on without you.
And that you would never think of it that way.
You never made it about you.
You always wanted us to still love each day
when your illness limited you physically.
To keep Enjoying each sunrise.
Each playful day in the waves.
You kept going regardless too.
One of our road trips was to Louisiana and your favorite place in the world ,
your camp in St.Francisville.
And I feel like I’m telling you something you already know.
But sometimes I still wonder if it’s you ,
really or some spirit of yours following us
and showing up in moments of weakness and
in moments of joy.
I still have so many questions about where you are, since we spent our last night together.
Where are you ?
I still am not completely convinced,
that each cardinal is you.
I tried so hard to hold on to a tight grip of the 5 of us under one roof for the past 4 years.
It was pure comfort and peace knowing we were all together each night
as I fell asleep to you saying,
“ you are my favorite person”.
And me replying - “me too.”
Or vise versa for whoever was falling asleep first.
And the absence of that makes you missed all the more
but also my gratitude for those days together is so immense.
But cancer slowly( although it felt like quick sand in an hour glass at the end)
allowed you to slip through my fingers.
And there was no grip tight enough to keep
But we sunk our lips into each other
and then had to say goodbye.
And as you float along that ocean .
I can feel you like a notion that won’t seem to let me go.
I’m still trying to learn how to loosen my grip in each passing day.
it is not easy,
But you are teaching me how.
Because when I feel I’m lost ,
something tells me you are here with me.
And I could always find my way when you were here.
I am trying to learn to sleep each night with out my favorite person next to me.
However each of your children are trying to fill that void for you.
And they run a close second place.
But Graham’s teeth grinding will never allow him to replace you 😳
We are all adjusting to life without you by our side ,
and it is a daily struggle.
We miss you.
But on our trip to Louisiana ,
I realized in a different more powerful way,
that you some form of you is indeed with us .
Even if I do not understand it.
And maybe never will.
Graham had asked me to switch the movie in the car.
He had begged to watch power rangers and Jake and Celia finally agreed to his torturous begging and screaming to get his way.
He is pretty hard headed ,
I definitely don’t have questions around where that comes from.
At least something in my grief has a clear answer.
As I took one dvd out of the player to replace it with Power Rangers,
the radio picked up,
And a song was on.
A song I hadn’t thought about since we last listened to it
in the final months of your life.
We listened to it everyday almost and I remember
specifically one night in bed after you had your chest tube placed.
A night of pure sadness and pain
but mostly a night of
deep love .
The greatest love I have ever known.
“Don’t go looking for the reasons.
Don’t go asking Jesus why.
We are not meant to know the answers.
They belong to the by and by. “
As I looked up at that very moment.
I saw the Louisiana State line sign.
I had no clue where we were
until I Saw the sign .
I had not driven there since the baby shower for Jake almost 11 year ago.
We had just crossed over a bridge from Mississippi into your home of Louisiana at just that moment.
And I looked out the window to see
What felt like the By and By.
Tears streamed down my face , as I turned up the radio
and sang each word of the song.
Jake watched me closely , as he always does.
He is so worried about me being sad but is so brave, so tender hearted.
And he loves YOU so much.
I know he will always watch out for me the way you did.
He learned it from you and I am grateful beyond words .
I pray the sting of missing you through this will lessen over time .
I tell him often not to worry about me , that I am ok .
That with each tear I cry,
I am stronger.
and there is so much truth to that.
I told him in that moment in the car,
the story about our love for this song.
And how I knew you were in the car with us.
And that as I saw the Louisiana state sign ,
I knew it was you, our angel , smiling at us,
hugging us and telling us to have so much fun for you.
And that you really were with us in the each step we take.
Thank you for reminding me to stop searching for the reasons.
To stop questioning.
I want to figure this out.
Figure out if it’s you sending us these signs.
Or if it’s just coincidences.
You know better than anyone that I always want an explanation for everything.
I want the reason.
Thank you for reminding me
That is is Ok to not know ,
you were always ok with that during your fight.
That not knowing came natural to you.
When I listened to the words of Broken Halos.
I felt you were telling me you are ok.
Wherever you are…
you are ok.
And I found comfort in that moment.
I still wonder what part of you is with us.
I still question a little 😬 ok maybe a lot
but only because I want it to be you.
The flesh you.
Where I can hug you tight and hear your voice.
I’ll even take the most annoying noise of you swishing your water around in your mouth like mouth wash.
Just one more time.
I want it so bad
However deep down in the mustard see of faith ,
growing in my soul.
I do believe some part of you is
without a doubt with us.
And I am grateful for the part of you I do feel with me in these moments of grace.
Because that’s what they are.
Grace that catches me in moments of complete surrender.
Moments I want to give up.
Moments the breath is knocked out of me
and staying down seems the only option.
Grace from you.
And friends and family angels here on earth.
The image of you getting back up at 5am
The morning after your Chest tube was placed ,
waiting on a wheel chair in the rain outside of winship ,
holding a vacuum box connected to to drain the tube .
Is an image of what is picking me up.
There are so many, embedded in my core.
Images of determination.
HOPE in a hopeless fight.
You did it.
The REALLY hard things.
You did it.
For our kids.
For our family.
And so I pull myself back up off the floor.
( maybe not as fast as you )
But I am ,
because I won’t let you down .
I promised you.
For our kids
And for the future family’s effected by this disease.
Each day ,
I feel you with me more and more through song lyrics.
Pandora is my go to
because I feel you talking to me through the random songs
on my runs and walks.
This gives me strength.
So many words from songs you sent me while at the beach
and I am writing them down each time I have the strength.
I want to write down everything I think of .
Mostly because I’m scared of forgetting even the smallest things about you.
But many days I do not have then energy or thought capacity
to write down anything that makes sense.
But I am going to keep trying.
I’m going to try a little harder this week.
Praying that in time you will help guide me in that way too.
The kids will not let me forget anything about you either.
I feel I need to tell you we finally painted the piece of furniture under the t.v bright pink.
I know you never really cared about much detail with decorating.
But Celia asked me as we painted, What do you think daddy would say about this?
I gave her a worried look , hah.
But she reminded me that you were colorblind
and that you could not tell the difference between gray and pink.
So we painted the top gray.
We decided that now when we are watching tv we will laugh
and know you will be guessing if it is pink or gray :)
they remember EVERYTHING about you
and I will never let them forget.
And we will never ever give up hope,
In what feels like a hopeless fight.
Because you never did.
I love you 29 ,Snookie.
Dear Fight Like Mike army,
I am working my way through Thank you Notes, I know many of you tell me not to worry about them.
It is not a worry, I promise.
It is more a way to remember and be grateful for all the good I have in my life,
even in the saddest days, when I feel the best thing about me is gone.
I am reminded that there is still SO much to live for, with each note I write. ( it may take a year or more)
Please know I am grateful for each and every thing you do to keep us swimming and I do not take those gifts for granted or lightly.
Also thank you for your continued donations. We are working on a couple new t-shirt designs
( because that’s basically all I know how to do) .
And our Winship 5k page that I hope to have up soon.
We are still not planning a service because it still does not feel right .
But we want to honor Mike’s life and legacy through giving back to those who gave us life together these past 4 years and to the future of those who will be effected by this heart wrenching disease.
I feel this is all Mike would want anyway.
More to come on that in coming weeks :)
I know I said before- I am not sending everything I write through this email chain anymore. I will post most things to my blog.
You can subscribe at Fightlikemike.org
I thought I would share where I found my strength and inspiration this week.
Both are podcast hosted by Kate Bowler
One my mom shared with me about a widowed parents club
And one is and interview with Ray Hinton.
When you think you have it bad, be assured someone has it worse.
Perspective is so important and I need reminders all the time.
And also know the power of not going through something alone. We desperately need each other.
Two incredible reminders through these interviews, that have given me hope on a tougher week.
Hope you have a great week :)