Hello, son,
Yesterday, the three of us went to a restaurant.
You were in your stroller, without oxygen, without a mask.
We ate by the sea with your mom, like we love to do, and you played with other children.
We drank a bottle of wine, we came home a little tipsy like we used to.
The three of us slept together, without getting up, without monitoring, without being afraid.
And this morning, you jumped into our arms.
We had breakfast together, peacefully.
Your pediatrician told us to be careful because you’re gaining too much weight.
You’re in great shape, what a joy!
APRIL FOOLS!
The reality is that we’re living in a web.
A spider’s web.
We know where it started.
We don’t know where it ends.
It seems infinite.
And we know it’s there, the spider… somewhere…
And that at the slightest misstep, it can fall on us.
And everything can collapse.
So we move forward slowly.
Searching for a way out in this infinity.
With this constant fear that it will catch us.
Since we came home, we’ve had 2 visits.
We’re told we’re strong.
The truth?
We have no choice.
We may look solid.
But in reality, we’re fragile.
Like a twig already broken several times, stuck in this unstable web, still standing… because it has no choice.
This week, we spoke with one of the best physical therapists in Brazil.
Your disease is progressive.
One virus, and we can lose months.
One day, maybe, a transplant.
Hope is the time we manage to gain.
In this web.
Through care, vigilance, and a life almost cut off from the world.
Two years.
Then five.
Then eight.
We’ve almost made it one year.
My body and soul feel like it’s been ten years.
There are days when fatigue takes over everything.
When doubt sets in.
When guilt eats away at me.
When I wonder how long I can hold on.
Yesterday, we went into town.
Tests. Again.
Your heart is fine. No hypertension.
“Good news.”
Then, a blood draw.
An hour of crying.
Attempts involving all limbs.
Staff who seem to have never seen a hygiene manual.
And not a drop of blood…
And then the vaccines.
Left at 6 a.m.
Got home at 4 p.m.
You barely ate.
And when I’m told you’re doing well.
That it’s great you don’t need oxygen anymore.
It’s true!
But the reality is that the world is dangerous for you.
Invisible.
Everywhere.
And your life, for now, is avoiding this world.
Because without oxygen, you seem normal.
But in reality, everything can collapse.
Because of a simple virus.
Because of negligence.
And when I hear that we have to accept it, that it’s fate…
I scream inside.
There are days when I can’t do it.
Fortunately, there’s your smile.
It’s what keeps me standing.
It’s what pushes me to keep going.
It’s what still gives me strength.
So I move forward.
In this damn web.
Your mom is here too.
We’re holding on. As best we can.
We move forward.
We struggle.
We search for that way out.
And we hope to never encounter the spider.
I love you, my little potato.
And today, sorry…
I’m tired and frustrated…
Brazilian insurance companies have tested my nerves again…
