{"id":6029,"date":"2026-06-10T16:59:51","date_gmt":"2026-06-10T19:59:51","guid":{"rendered":"https:\/\/hopeforgabriel.com\/10-06-2026\/"},"modified":"2026-06-10T17:50:54","modified_gmt":"2026-06-10T20:50:54","slug":"10-06-2026","status":"publish","type":"post","link":"https:\/\/hopeforgabriel.com\/en\/10-06-2026\/","title":{"rendered":"10\/06\/2026"},"content":{"rendered":"\n

Hello, son,<\/p>\n\n

I\u2019m taking 30 minutes in the middle of the chaos that is life to write here.It\u2019s already been a few weeks since I last came by.As they say in France, \u201cno news is good news.\u201dI wouldn\u2019t say it\u2019s good news, but in any case the news about you is stable.<\/p>\n\n

Let\u2019s go over the usual points:<\/p>\n\n

Nutrition<\/h3>\n\n

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 pur\u00e9e 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\u2019ll get through this part. I\u2019m pretty confident. <\/p>\n\n

Respiratory<\/h3>\n\n

For the past few weeks, you\u2019ve finally been accepting your NIV while you\u2019re awake.That changes everything, because we\u2019re now aiming for a target of 6 hours per 24-hour period.Usually it\u2019s 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\u2019s certain is that this NIV does you a world of good, and you\u2019re 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\u2014and I hope\u2014that 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\u2019re older, you won\u2019t need it anymore. That\u2019s why we insist, even when you scream. One day you\u2019ll understand that those hours with the mask were an investment.Your latest tests show that you\u2019re a bit low on IgG, the immune system\u2019s \u201cveteran soldiers\u201d: the ones that patrol the blood and protect the lungs from bacteria. When there isn\u2019t enough, the body has a harder time fighting off respiratory infections, which is a problem with already fragile lungs. We\u2019re going to keep a close eye on that.We\u2019re still waiting to see whether pulse therapy will happen, but it will most likely be this summer. <\/p>\n\n

Geek vs. the healthcare world<\/h3>\n\n

Son, I\u2019m a geek.When I have a problem to solve with tech, I build solutions.And I\u2019m 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\u2019re still fighting with the insurance companies.Honestly, with my working hours\u2014which are already limited\u2014I must spend about 60% of my time dealing with projects\/meetings\/emails\/messages because of what the insurance won\u2019t reimburse (despite court rulings in our favor). It might still be manageable if that insurance didn\u2019t 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\u2019t give a damn about leaving people in deep trouble. I\u2019d be ashamed in their place. I deeply hate those people, and I didn\u2019t 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. <\/p>\n\n

\u201cNormal\u201d life<\/h3>\n\n

A few months ago, I was telling you that I\u2019d like to have a normal life.I\u2019ve understood that this will never happen, but I\u2019m trying to find joy in the life we do have.Because it could be much worse too, considering what we\u2019ve been through.I\u2019m 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\u2019s 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\u2014I can see you more often working from home! Every day, I\u2019m there when you wake up, and when you go to bed. You give me kisses, you laugh every time I ask you if you\u2019re 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\u2014the stress about the virus, etc.\u2014but we avoid crowds, we stay in our bubble, and we\u2019re 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\u2019m hopeful we can be a bit more relaxed about viruses until December. <\/p>\n\n

We also almost cut your hair. We have to admit it\u2019s long, but you\u2019re so cute like that. <\/p>\n\n

End of this blog?<\/h3>\n\n

I\u2019m thinking about maybe stopping writing to you here and writing to you in a more private journal.Right now we\u2019re sharing for Grandpa\u2019s challenge, Les Cols du Souffle, and I have to admit I really don\u2019t like putting our family on display.I tell myself it\u2019s a necessary evil, and it\u2019s true that it brings us interesting contacts around the disease and it also raises awareness.I don\u2019t 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\u2019t have all the details, but I have to say what we hear is more often negative than positive. And I like to believe it\u2019s 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\u2019m 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\u2019s 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: \u201cbetter to make people envy you than pity you.\u201d I think about all of this a lot because I\u2019d 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\u2019s prevention, challenges like your grandpa\u2019s, but we also need to be innovative. <\/p>\n\n

You\u2019ll see, son: in life, you have to bring value to people if you want to receive some in return. It\u2019s sometimes unfair in serious situations, especially when it\u2019s not your fault. But it\u2019s human. <\/p>\n\n

So let me give you what I think I\u2019ve understood, hoping it will be useful to you.<\/p>\n\n

People run from illness. Not because they\u2019re mean, but because it reminds them that they too will die one day. It\u2019s a reflex, not a choice. Don\u2019t hold it against them too much. <\/p>\n\n

If you inspire pity, people look down on you. If you make them laugh, they sit down next to you. That\u2019s the whole difference. When you\u2019re the first to laugh at your problems, you give others permission to breathe. And then they stay. <\/p>\n\n

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: \u201cbetter to make people envy you than pity you.\u201d<\/p>\n\n

And then there\u2019s 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\u2019s value isn\u2019t always visible in the moment. You\u2019ll know that better than anyone.<\/p>\n\n

I love you, my little potato.<\/p>\n\n

Dad<\/p>\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

Hello, son, I\u2019m taking 30 minutes in the middle of the chaos that is life to write here.It\u2019s already been a few weeks since I last came by.As they say in France, \u201cno news is good news.\u201dI wouldn\u2019t say it\u2019s good news, but in any case the news about you is stable. Let\u2019s go over […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_seopress_titles_title":"","_seopress_titles_desc":"","_seopress_robots_index":"","_seopress_robots_follow":"","_seopress_robots_imageindex":"","_seopress_robots_snippet":"","_seopress_robots_primary_cat":"","_seopress_robots_breadcrumbs":"","_seopress_robots_freeze_modified_date":"","_seopress_robots_custom_modified_date":"","_seopress_robots_canonical":"","_seopress_social_fb_title":"","_seopress_social_fb_desc":"","_seopress_social_fb_img":"","_seopress_social_fb_img_attachment_id":0,"_seopress_social_fb_img_width":0,"_seopress_social_fb_img_height":0,"_seopress_social_twitter_title":"","_seopress_social_twitter_desc":"","_seopress_social_twitter_img":"","_seopress_social_twitter_img_attachment_id":0,"_seopress_social_twitter_img_width":0,"_seopress_social_twitter_img_height":0,"_seopress_redirections_value":"","_seopress_redirections_enabled":"","_seopress_redirections_enabled_regex":"","_seopress_redirections_logged_status":"","_seopress_redirections_param":"","_seopress_redirections_type":0,"_seopress_analysis_target_kw":"","_seopress_news_disabled":"","_seopress_video_disabled":"","_seopress_video":[],"_seopress_pro_schemas_manual":[],"_seopress_pro_rich_snippets_disable_all":"","_seopress_pro_rich_snippets_disable":[],"_seopress_pro_schemas":[],"iawp_total_views":0,"footnotes":""},"categories":[29],"tags":[],"class_list":["post-6029","post","type-post","status-publish","format-standard","hentry","category-memoirs-of-a-heros-dad"],"_links":{"self":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/6029","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/comments?post=6029"}],"version-history":[{"count":3,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/6029\/revisions"}],"predecessor-version":[{"id":6038,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/6029\/revisions\/6038"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=6029"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=6029"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=6029"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}