All posts by vainolo

Letters to God – Part 39: Daymare

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The day starts. What surprises will it bring? Where is that hidden gorilla that haunts us? Will it pounce at us today?

Taking care of every detail, everything must be just right. Otherwise, something may happen. Maybe. Maybe not. But who knows. Better safe than sorry.

Tired, exhausted, depleted.

Trying to rest, the mind rewinds to different days. More “complex” days. Days where everything was unsure.

I guess all days are like that.

And then I fall asleep. And my nightmare stops. And I dream…

Daymare… Didn’t know that word existed.

Letters to God – Part 38: Welcome to My World

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Welcome to my world.

Where the present is surreal, where the future is uncertain, where the past seems like another life.

I know how it feels. I’ve been here for a while. It’s like a dream… no, more like a nightmare.

But you get used to it.

Nah, just kidding. You never get used to it. You just get by, day by day, with the hope that tomorrow will be better, or at least not worse, than today.

And that is what keeps us all going.

Be safe. Stay strong.

Letters to God – Part 37: Happy 5th Cranniversary

A year has passed. Another year in this journey.

Many things have changed, we’ve experienced new things, re-experienced old ones. Like a painting where the scene has changed back the background stays the same.

Enjoying the present as much as possible.

Afraid of what the future will bring.

Even in times of quiet there is always that thought at the back of my mind… will tomorrow be that day.

We’ve made it another year. A year that didn’t start with the right foot but slowly turned to the better.

And what better way to celebrate this occasion than with another surgery (thankfully it was relatively minor).

So here we are at the hospital recuperating. And hope to leave soon.

Hoping for a great year of health and happiness!

Stop Wasting Time Trying to Fix the Past

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Yesterday I found myself spending a lot of time reviewing old blog posts to see if they moved OK on my latest migration. Posts from a year ago, two years ago…

Afterwards I asked myself – was it worth the effort? Does it really matter if they look good or not? If all their links are OK? If the pictures load correctly and the layout is just right? It’s not like I’m maintaining Wikipedia here, it’s just my blog…

It turns out this question is not just about maintaining a specific blog. It’s about life. Because I spend a lot of time thinking about the past and how I could have done things differently. What things I would change, what I would have done (and not done) differently.

But unlike my blog, I can’t edit my past (or at least I haven’t found where I can change this setting 🤔). And while the thought exercise may be interesting, it must be handled with care.

What I know I can do is make the best of the present, and work to create a better future.

As Pumba said, “you got to put your behind in your past”.

Letters to God – Part 36: Happy 4th Cranniversary

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Four years and a lifetime ago today he woke up screaming in pain and vomiting
Four years and a lifetime ago we drove to the hospital not knowing what would happen
Four years and a lifetime ago we waited an hour, two hours, four hours, eight hours in the hospital waiting room
Four years and a lifetime ago…

Life has changed so much since then.
There have been ups and downs, two steps forward and one step back. Sometimes one step forward and two steps back.
Days of fun and play, where we could almost forget reality.
Almost. But not quite, and not completely.
Every day is a struggle. Some more than others.

We are on a journey that we never planned. With no map, no roads, no directions, no signs. The way is never easy, and full of surprises. But as the saying goes, it’s like fighting a gorilla. You don’t stop when you are tired. You stop when the gorilla is tired. And this gorilla doesn’t seem to know the meaning of the word tired.

So here we are again. 4 years later.

The fight is still on. And we don’t plan on losing anytime soon.

Letters to God – Part 34: One Small Thing

Darkness fills the void.
Nothing seems to move.
There is no trace of hope.

Disorder is all around.
Nothing makes sense.
There is no path forward.

Danger lurks in the air.
Nothing can be done.
There is no solution.

Suddenly.
Something changes.
Something moves.
Something lives.

One small thing. A ray of light.  A drop of hope.

And light starts to shine again.
And freshness fills the air.
And there is hope.

.
.
.

Until next time.

Letters to God – Part 33: Forgive and Forget, take 2

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Hi God. I had a thought today. About forgiving and forgetting. Something we talked about before. I was thinking about how these two words are very similar, but deep down they are very, very, different.

[Son] Hi Dad! You are here! I’m so glad to see you
[Me] Hi kiddo. I’m also happy to see you!

OK, so back to the subject – forgiving is an active action, something you have to do, something that doesn’t happen alone. Forgetting is exactly the opposite. You can’t decide to forget something – doing that will do the exact opposite, imprinting it more in your memory. Forgetting is a passive action, something that happens, completely not under our control.

[Son] Hi Dad! I’m so happy that you are home!
[Me] Yes my boy. I’m also happy to be here, and to see you, and hug you. Love you!

Where were we? Ah yes. How forgiving is so simple. Well… relatively. Now forgetting? That is fricking hard. Really, REALLY hard. Memories come back from the middle of nowhere, events that happened ages ago suddenly pop into your head, no control, nothing you can do. No decision you make will take them out. They are just there. Lurking. Waiting. Prowling. Always ready to show up at the worse possible moment.

[Son] Daddy! So good to see you! High five!
[Me] High five, my hero!

So yes, for most of us, forgetting is hard. But for my son, it’s very easy. It just happens. And it breaks me every day.

Want to make a deal? I’ll forgive you. I’ll forgive you for everything.

And I’ll do that, the day he stops forgetting.

We’ll talk about everything else next time…

Letters to God – Part 32: Grateful…

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We are grateful. Very grateful.

We were grateful that he survived that difficult and unexpected surgery

We were grateful he could move, even if not consciously

We were grateful when he opened his eyes and saw us, even from only half an eye

We were grateful because he held our hand again

We were grateful that day he spoke again

We were grateful after he made those first steps, for a second time in his life

We were grateful when he started eating and drinking again

We were grateful he could move alone, and was not left in a wheelchair

We were grateful the day he went back to school, even though he doesn’t remember what he learned yesterday

We are grateful he doesn’t have a full seizure each day, just some small ones here and there

Some days, sometimes, I wish didn’t have to be so grateful…

Letters to God – Part 31: Special

As a kid, I wanted to be special. To be the one other look up to. I managed to be different, weird, strange. But all in all, I never really felt I was special…

Now I’m finally special, thanks to my son. I’m really special. I’m one in millions.

“Be careful what you wish for because you might just get it” goes the quote.

Maybe I should have been more specific ????