Hello, son,
I’m taking 30 minutes in the middle of the chaos that is life to write here.
It’s already been a few weeks since I last came by.
As they say in France, “no news is good news.”
I wouldn’t say it’s good news, but in any case the news about you is stable.
Let’s go over the usual points:
Nutrition
We’re continuing to make progress.
Last week you didn’t gain any weight and we ran into a few difficulties, but overall it’s much better than before.
You put a little weight back on last month, which keeps us from skimming that infamous malnutrition curve that we’d already fallen below.
The issue you have today is that you hate eating anything that isn’t a perfectly smooth purée or applesauce. If there’s even the tiniest lump in it, you don’t want it.
That’s because you spent 6 months with a feeding tube and all the sensitivity in your mouth is out of whack. We’re working on it, with some slightly strange massages around your mouth.
I think we just need to be patient and we’ll get through this part. I’m pretty confident.
Respiratory
For the past few weeks, you’ve finally been accepting your NIV while you’re awake.
That changes everything, because we’re now aiming for a target of 6 hours per 24-hour period.
Usually it’s 2 hours in the morning, 2 hours in the afternoon, and 2 hours when you go to bed.
On the other hand, if you fall asleep with it and wake up with it, you scream and you hate it.
But what’s certain is that this NIV does you a world of good, and you’re MUCH MUCH less tired in the evening. Your retractions are less pronounced, you hardly wheeze. And so, indirectly, you use less energy, which probably makes it easier for you to gain weight.
I like to believe—and I hope—that if we do a lot of NIV during your first years, all the areas of your lungs that have collapsed will gradually reopen. And that later, when you’re older, you won’t need it anymore. That’s why we insist, even when you scream. One day you’ll understand that those hours with the mask were an investment.
Your latest tests show that you’re a bit low on IgG, the immune system’s “veteran soldiers”: the ones that patrol the blood and protect the lungs from bacteria. When there isn’t enough, the body has a harder time fighting off respiratory infections, which is a problem with already fragile lungs. We’re going to keep a close eye on that.
We’re still waiting to see whether pulse therapy will happen, but it will most likely be this summer.
Geek vs. the healthcare world
Son, I’m a geek.
When I have a problem to solve with tech, I build solutions.
And I’m tired of always having to give every document to every doctor. So I built an app, BIBI, that connects directly to your pulse oximeter and indexes all the data. I can easily send healthcare professionals a link with all your blood test results, vaccines, and weight charts.
At the same time, we’re still fighting with the insurance companies.
Honestly, with my working hours—which are already limited—I must spend about 60% of my time dealing with projects/meetings/emails/messages because of what the insurance won’t reimburse (despite court rulings in our favor). It might still be manageable if that insurance didn’t cost us a fortune for nothing. The worst part is having one of their employees as a direct contact and seeing how much they don’t give a damn about leaving people in deep trouble. I’d be ashamed in their place. I deeply hate those people, and I didn’t think it was possible, but this whole journey has shown me what it is to feel hatred.
I make up for it by building systems that automate as much of this hell as possible, so that in the long run I spend as little time on it as I can.
“Normal” life
A few months ago, I was telling you that I’d like to have a normal life.
I’ve understood that this will never happen, but I’m trying to find joy in the life we do have.
Because it could be much worse too, considering what we’ve been through.
I’m glad to be self-employed and to be able to manage my time however I want, without having to manage employees.
It gives me the flexibility to see you and spend time with you whenever I want and whenever it’s needed.
And I don’t know what it’ll be like when you’re 20 and reading all this. But in our time, having an online business is real freedom, and I’m glad I oriented my whole life around it—I can see you more often working from home!
Every day, I’m there when you wake up, and when you go to bed.
You give me kisses, you laugh every time I ask you if you’re the most handsome.
We also go to the beach every Sunday with your mom.
I have to admit that at first it was quite a challenge—the stress about the virus, etc.—but we avoid crowds, we stay in our bubble, and we’re getting more and more relaxed. This Sunday, you sat in the water and got your first wave. You were so cute discovering all of that.
High season is about to start here, and the rain and all its humidity will stop. I’m hopeful we can be a bit more relaxed about viruses until December.
We also almost cut your hair. We have to admit it’s long, but you’re so cute like that.
End of this blog?
I’m thinking about maybe stopping writing to you here and writing to you in a more private journal.
Right now we’re sharing for Grandpa’s challenge, Les Cols du Souffle, and I have to admit I really don’t like putting our family on display.
I tell myself it’s a necessary evil, and it’s true that it brings us interesting contacts around the disease and it also raises awareness.
I don’t know what the future holds. We learned last week that a 6-year-old child with the same disease as you died in Spain. I don’t have all the details, but I have to say what we hear is more often negative than positive. And I like to believe it’s simply because the people who make it through never want to hear about it again.
Illness is the topic everyone wants to avoid. Because it points to death, and nobody likes death.
Over time I’m discovering that, actually, if you want to raise awareness, you have to make people laugh and have a huge amount of empathy. I think that’s why I love dark humor. And self-deprecation. If you can laugh about illness, then you make others laugh and you earn respect. Like your great-grandmother used to tell me when I was little: “better to make people envy you than pity you.” I think about all of this a lot because I’d like to grow our association, or create a new one, to make your disease known and be on the front line to find solutions. But how do you communicate effectively to help as many people as possible? There’s prevention, challenges like your grandpa’s, but we also need to be innovative.
You’ll see, son: in life, you have to bring value to people if you want to receive some in return. It’s sometimes unfair in serious situations, especially when it’s not your fault. But it’s human.
So let me give you what I think I’ve understood, hoping it will be useful to you.
People run from illness. Not because they’re mean, but because it reminds them that they too will die one day. It’s a reflex, not a choice. Don’t hold it against them too much.
If you inspire pity, people look down on you. If you make them laugh, they sit down next to you.
That’s the whole difference.
When you’re the first to laugh at your problems, you give others permission to breathe. And then they stay.
My great-great-grandmother used to tell me in her own words, when your dad liked to snack a little too much on cheese and cured sausage: “better to make people envy you than pity you.”
And then there’s one last thing.
You, today, don’t produce anything. You don’t bring in anything.
And yet you are what has the most value in my life.
So when you meet someone at rock bottom, remember that a person’s value isn’t always visible in the moment.
You’ll know that better than anyone.
I love you, my little potato.
Dad
