Hello Gabriel,
Yesterday was a busy day.
In the morning, I went to pick up your passport at the Federal Police, at the Iguatemi shopping center. And I must say I was pleasantly surprised. The officers were incredibly kind and efficient.
I had sent them a message before starting the procedure to explain your situation, that you couldn’t move, that you still had probes on your face and that I didn’t know what would happen with the photo. They replied sympathetically, explained everything to me and organized everything without us having to move you.
Result: your passport was ready in just six days. Amazing. In France, we would have waited six months, minimum.
Anyway, today you have your passport!
And with this little blue booklet, you have something much bigger: freedom.
The freedom to leave one day, to travel, to breathe another air. Maybe one day, we’ll go back to France or somewhere else. The important thing is to know that you have the choice. And giving yourself the choice is already a form of victory.
You know Dad, he’s spent the last 10 years of his life building up a certain kind of freedom. Today, with what’s going on, the freedom we have with mom is more limited, but it’s allowed us to stay by your side every day since you were born. And we’re extremely grateful.
I’ll tell you more about it when you’re older. It’s the kind of subject I never stop talking about.
Well if not yesterday you had a lot too!
In the morning, you had a visit from one of the respiratory physiotherapists. One of the things we talked about was putting on a mask (EPAP I think) to improve your breathing. Problem was, she wanted to force you into it and you hate that. I told her it wouldn’t work like that, and that we’d have to find a more fun way.
We finally asked the motor physiotherapist who comes every day. She’s really good and knows how to make things fun. And do you know what? She worked a miracle: you used the mask and loved it!
In the afternoon, I spoke with the speech therapists. Things are progressing, but very slowly. I must admit I’m frustrated. I naively thought that the feeding tube could be removed quickly, but no, it’s going to be a long road. I hope it’s a matter of months, not years.
But you’re learning, little by little. And I can see that they’re doing everything they can to help you. It’s a job of patience, and Dad has to learn that too.
Then you had two vaccines, one against called Pneumo20 (protects against 20 strains of pneumococcus responsible for serious illnesses such as pneumonia, meningitis and septicemia) and then influenza.
Then an ultrasound of the entire abdomen.
Result: nothing abnormal. That’s great news!
You often have very strong colic, but we think it has more to do with your milk than your tummy itself.
The organization meant to help us still refuses to cover part of your care. We’ve paid for those treatments and requested they be done at home. It’s much better and avoids the risk of going out.
And speaking of that organization…
Dad made a decision: I’m stopping fighting them directly because it’s not my job, I’m not good at it, and I need to focus on more important things, like earning money to cover your medical expenses that they refuse 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 bedroom.
She stays with you every night, often until 10 or 11 p.m., sometimes even midnight.
She also does the NIV for you, although over time she’s learned to train the girls who help us do it.
Yesterday, the bandages you have on your face to hold your catheter in place had completely peeled off. And if we leave you like this, the tube could come out of your nose, forcing us to go to the hospital to put it back in.
Once again, the organization refused to send us a nurse to help us change these dressings. So, your mom is handling it.
For me, it’s something that scares me, and that I don’t dare do.
All it takes is one wrong move, and I’m off to hospital.
But your mom does it with incredible patience and delicacy.
I watched it last night and was deeply moved.
Seeing her care for you with such 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.
I kiss you.
Dad
