Good morning, Gabriel,
Yesterday was a busy day.
In the morning, I went to pick up your passport from the Federal Police, at the Iguatemi shopping mall. And I have to say I was pleasantly surprised. The officers were incredibly kind and efficient.
Before starting the process, I had sent them a message explaining your situation: that you couldn’t be moved, that you still had tubes on your face and that I didn’t know how the photo would work. They replied kindly, explained everything and organized it all without us needing to move you.
The result: your passport was ready in just six days. That’s crazy. In France, we would have waited six months, minimum.
Anyway, today you have your passport!
And with this little blue booklet, above all, you have something much bigger: freedom.
The freedom to leave one day, to travel, to breathe different air. Maybe one day we’ll go back to France, or somewhere else. What matters is knowing that we have the choice. And giving yourself a choice is already a kind of victory.
You know, Dad has spent the last 10 years of his life building a certain kind of freedom. Today, with everything that’s happening, the freedom your mom and I have is more limited, but it has allowed us to be by your side every day since you were born. And we are extremely grateful for that.
I’ll have the chance to tell you more about it when you’re older. It’s the kind of subject where, once I start, I never stop.
Anyway, you had a lot going on yesterday too!
In the morning, one of the respiratory therapists came to see you. Among other things, we talked about putting a mask on you (EPAP, I think) to improve your breathing. Problem: she wanted to force you, and you hate that. I told her it wouldn’t work like that, and that we had to find a more fun way.
In the end, we asked the motor physical therapist who comes every day. She’s really good and she knows how to make things playful. And guess what? She worked a miracle: you used the mask and you loved it!
In the afternoon, I spoke with the speech therapists. Things are moving forward, but very slowly. I’ll admit I’m frustrated. I naively thought we could take out your feeding tube quickly, but no, it’s going to be a long road. I hope it will be a matter of months and not years.
But you’re learning, little by little. And I can see they’re doing everything they can to help you. It takes patience, and Dad has to learn that too.
Then you had two vaccines: one called Pneumo20 (it protects against 20 strains of pneumococcus that cause serious illnesses like pneumonia, meningitis and sepsis), then the flu shot.
Then a full abdominal ultrasound.
The result: nothing abnormal. That’s good news!
You often have very bad colic, but we think it has more to do with your milk than with your tummy itself.
The organization that is supposed to help us still refuses to cover part of your care, so we paid for those ourselves and asked for them to be done at home. It’s much better, and it avoids the risk of going out.
And speaking of that organization…
Dad has made a decision: I’m going to stop fighting it directly, because it’s not my job, I’m bad at it, and I need to focus on more important things, especially earning money to cover the medical costs it refuses to pay.
But just because Dad is stopping doesn’t mean everything stops…
Finally, around 9 p.m., I was with your mom in the room.
She’s the one who stays with you every evening, often until 10 or 11 p.m., sometimes even midnight.
She also takes care of your NIV, even though, over time, she has learned to train the girls who help us to do it.
Yesterday, the dressings on your face that hold your tube in place had come completely unstuck. And if we leave you like that, the tube could come out of your nose, which would mean going to the hospital to have it put back in.
Once again, the organization refused to send us a nurse to help us change these dressings. So your mom takes care of it.
As for me, it’s something that scares me, something I don’t dare do.
One wrong move, and it’s straight to the hospital.
But your mom does it with incredible patience and gentleness.
I watched her last night and was deeply moved.
Seeing her take care of you with so much love, I shed a few tears.
She’s scared too, you know, but her love is stronger than that fear.
And I want you to know, my son, that your mom loves you immensely and is doing everything she can to get your life back to normal as quickly as possible.
Hugs and kisses.
Dad