Hello, son,
Today is your month-iversary. You are 9 months old!
9 months in your mommy’s belly, and 9 months in real life!
I often tell myself I wish I could go back to the day you were born to do things differently.
But ‘if only’ won’t change the world…
Today, I have quite a few topics to cover, so let’s go!
Opening the blog to other authors and a future book?
As you’ve seen these past few days, I haven’t written, and I deliberately left room for grandpa and grandma so they could leave you their message.
Speaking of which, I thought it was good to open this blog to other people.
In fact, I’ve also asked other people who supported us during our journey, especially at the hospital, to write.
I think that later, it will give you other points of view, other perspectives, other ways of living and understanding things.
And it also allows us to more strongly share our support movement for children with bronchiolitis obliterans.
Generally, in life, it’s never good to have only one point of view.
I will always encourage you to be open-minded and not to rely on just one person.
This applies to absolutely everything, even politics and religion.
I would really like your mom to write from time to time too.
For now, she’s not ready, but I know it will come. Everything in its own time.
I don’t know yet what will become of all these writings.
Maybe I’ll print them someday? Maybe I’ll turn them into a book?
On my bucket list of things I want to do in my life, I wrote long before you were born, “write a book about life experiences.” And why not?
It’s your restart
Yesterday was the restart.
The restart for all the medical staff who come to see you every day, which means it’s a restart for you too. You no longer have time to sleep as you wish and eat when you wake up.
Healthcare professionals come and go all day, and everything is precisely scheduled.
With that, it’s also the return of your cries every time you have a treatment you don’t like or when we have to wake you up.
Speaking of which, I hate making you cry…
I think the worst part is putting a mask on your face.
You hate it and you struggle in our arms, screaming.
In those moments, my heart overflows with rage…
I think back to all the things that were done wrong and led us to this moment…
But eventually, I channel it and disconnect my brain so I don’t suffer anymore.
Little by little, I’m learning to tame this rage/hatred, because I know that one day it will be useful in our fight.
Also, I’ve gotten back into sports and I’m taking advantage of the new gym in the building where we live.
I run 30 minutes every day and I’m trying to start a movement on Instagram to share your story through people’s sports activities with the hashtag #movewithgabriel
It might not be the best idea in the world. But every idea is good to highlight your illness and open doors for your recovery.
In parallel, we also notice that you still have trouble with liquids.
This causes you reflux.
Some talk about micro-pulmonary aspirations.
Others about broncho-aspirations…
Honestly, I don’t always know what to think. Opinions change from one specialist to another.
At times, all of this scares me.
Even if I see you developing, even if you’re making progress, it all remains fragile.
There’s also the K flu circulating a lot right now.
We know that some people who are close to our family have caught it.
That forces us to remain extremely vigilant.
We do everything we can to protect you from respiratory viruses with masks, gloves, and screening tests, but it remains a constant worry.
Global Bronchiolitis Obliterans Community in progress
Thanks to the Instagram account, we are creating a network of families who are experiencing the same illness as you.
We exchange experiences, feelings, and solutions.
It feels good not to be alone.
As I’ve already said, I’m also thinking about the website we’re going to create about this.
I would like it to be a community website centered around your illness, to identify affected people worldwide, centralize information and feedback.
It’s still under consideration.
I would also like to use this project as an educational tool, to show my students how to create this type of site, how to structure a community, how to use the web to serve something greater.
I don’t know yet exactly what format it will take, but I’m making progress.
And I think it’s going to be something great!
I deeply believe that even in difficult times, we must try to transform it into something positive.
Find meaning.
Find a form of construction in suffering, if I can put it that way.
Essentially, make it useful.
I’m talking about all this also to start working on Google SEO 😉
The upcoming exams
The coming days will be busy.
Tomorrow, you’re having an MRI scan to observe your brain.
I’m anxious.
Even though your progress over the last 3 months has been spectacular.
When you left the hospital, they were very worried about your development.
Today, that fear has clearly diminished, but with everything you’ve been through, especially ECMO, this exam remains important.
We surely won’t get the results right away. So we’ll wait.
In the following days, you also have quite a few things. We won’t be bored!
Thanks to the donors
I also want to thank the donors who continue to support us, especially those who make monthly donations.
I have updated the donation summary page.
In December, there was a lot of generosity, and thanks to that, we were able to cover all the expenses for the month.
For January, we’ll be able to cover about half of it, in addition to the donations that keep coming in.
It’s invaluable.
We are still around 30,000 reais in monthly costs to cover all the care related to your illness, as well as incidental expenses.
That’s huge.
We hope to succeed in reducing these costs starting in February.
The goal is to get down to 20,000 reais, then 15,000, then 10,000, then 5,000.
With your mom, we recalculated everything, we did the accounting.
We are looking to optimize without ever neglecting your health.
Our new beginning and the goal of a normal life in 2026
Your mom will have less work during the off-season, which will allow her to take care of you full-time.
Even if the people who assist you are very competent, I remain convinced that no one takes better care of a child than their mother.
I’m really happy that she can be there for you as much as possible.
You know your mom does an exceptional job.
And even if, like any couple, we sometimes have differences (often cultural), I think we make a good team in this parenting mission.
She manages appointments, logistics, purchases, all the daily organization.
And these past few days she has started organizing a potential return to our home, and the initial feedback is quite positive. Our goal of a “normal” life in 2026 is becoming more and more viable!
On my end, I’ve gone back to working on the computer.
Clients and friends (including your godfather) have enlisted my services to help us raise funds and develop their online businesses.
(By the way, I have a friend I met on Jericoacoara beach, whom I helped create an online theater school, and who just published his first book!)
At the same time, I’m also trying to continue developing our family’s Instagram account.
Conclusion
That’s all for today.
I am extremely proud to celebrate these nine months with you!
We are incredibly lucky to have you by our side every day.
Thank you for the strength you give us and all those daily smiles.
I love you
Dad
