Hello, son,<\/p>\n\n\n\n
Well, it had been a little while since I last wrote to you.<\/p>\n\n\n\n
Last time, your Papy Robert was setting off on one heck of a sporting challenge.<\/p>\n\n\n\n
His goal was to raise awareness of your disease and, through the association, to get people talking about you, about your disease and about research.<\/p>\n\n\n\n
Well, that challenge is now behind us.<\/p>\n\n\n\n
And it was a resounding success.<\/p>\n\n\n\n
Papy Robert completed his challenge. He appeared in many media outlets, and the story even started to take on an international dimension.<\/p>\n\n\n\n
We made contacts in several countries, notably in Argentina. We now know that there are people working on or researching things around your disease, and above all, we were able to get in touch with them.<\/p>\n\n\n\n
Even today, we keep moving forward.<\/p>\n\n\n\n
This afternoon, in fact, I had another meeting with international experts and parent associations.<\/p>\n\n\n\n
I don\u2019t know yet whether all this will one day allow us to find solutions for you. Maybe it will, maybe it won\u2019t. But one thing is certain: today, we are on the front line, trying to move things forward.<\/p>\n\n\n\n
And that is exactly what we wanted to do.<\/p>\n\n\n\n
So yes, son, it is a resounding success.<\/p>\n\n\n\n
The association also managed to raise funds thanks to all this. These funds will be useful for what comes next. We are now going to think about the best way to use them to advance research, exchanges between families and everything that can, in one way or another, help to better understand your disease.<\/p>\n\n\n\n
And then, alongside all that, I turned 40 yesterday.<\/p>\n\n\n\n
40 years old, son.<\/p>\n\n\n\n
You\u2019ll see, when you are 40, I will be 80. I don\u2019t even know if I will still be here to see it, but I can already tell you that at 40, you don\u2019t necessarily see life the same way you did at 20 or 30.<\/p>\n\n\n\n
Your godfather Bastien came to visit us from France.<\/p>\n\n\n\n
You may not remember him, but he had already come to see you a year ago. He arrived on Friday to spend a few days with us.<\/p>\n\n\n\n
You had medical tests in Fortaleza. Everything went well on your side.<\/p>\n\n\n\n
Unfortunately, despite all the precautions we had taken, your godfather started having flu symptoms while he was still in quarantine.<\/p>\n\n\n\n
We tested him on the 14th and he was positive for Covid.<\/p>\n\n\n\n
So he couldn\u2019t even be there for my birthday.<\/p>\n\n\n\n
And for my birthday, we had to keep being careful. Masks, precautions, distance\u2026 I couldn\u2019t even blow out the candle on my cake, in case I had Covid and passed it onto the cake.<\/p>\n\n\n\n
But it doesn\u2019t matter.<\/p>\n\n\n\n
In the end, the four of us celebrated together, with your nanny, and it was very good that way.<\/p>\n\n\n\n
Anyway, I wasn\u2019t expecting much from turning 40 with this new life.<\/p>\n\n\n\n
Because my most beautiful gift is having you with me every day.<\/p>\n\n\n\n
Alive.<\/p>\n\n\n\n
Even with your disease, you are living rather well today. And when I look at where we were a little over a year ago, I tell myself we have already come a very long way.<\/p>\n\n\n\n
So yes, I tell myself that in the long run, we will manage to have a beautiful life.<\/p>\n\n\n\n
We will adapt.<\/p>\n\n\n\n
We will find our own way of living with all this.<\/p>\n\n\n\n
And then, for my 40th birthday, the two of us each got a bike! Thank you, Mum!<\/p>\n\n\n\n
A bike with fat tyres to go to the beach.<\/p>\n\n\n\n
Because I want to take you outside. I want you to see things, to enjoy the place where we live.<\/p>\n\n\n\n
You have to avoid crowded indoor places, but you can enjoy the open air.<\/p>\n\n\n\n
Here, there are magnificent sand dunes and I will be able to take my bike and bring you along with me. I have already prepared everything to be able to do it.<\/p>\n\n\n\n
And you too got a little bike to start with. A balance bike, with no pedals.<\/p>\n\n\n\n
And you love it.<\/p>\n\n\n\n
You are already doing drifts with your little bike and it makes us laugh a lot.<\/p>\n\n\n\n
You are also teething at the moment, and it hurts you a bit. It is causing us a few problems because you have lost a little weight.<\/p>\n\n\n\n
But in the end, you know what?<\/p>\n\n\n\n
These are almost normal parents\u2019 problems.<\/p>\n\n\n\n
Problems that worry us, that bring us back to our fears, but that are \u201cnormal\u201d.<\/p>\n\n\n\n
And we worry just like any other parents.<\/p>\n\n\n\n
And in the end, they are rather positive problems.<\/p>\n\n\n\n
Problems that many parents know.<\/p>\n\n\n\n
So it\u2019s not that serious.<\/p>\n\n\n\n
For the coming weeks, the routine will resume its course.<\/p>\n\n\n\n
You should have a pulse therapy soon, but I don\u2019t know exactly when yet. I am waiting to hear back from your pulmonologist, who has been telling us this for a few months now\u2026<\/p>\n\n\n\n
Meanwhile, we keep moving forward on the research and above all on the contacts with people all over the world who work on your disease.<\/p>\n\n\n\n
And I am also trying to get up to speed in my own work, because AI is advancing by leaps and bounds and changing absolutely everything. And if we want to survive, we have to adapt.<\/p>\n\n\n\n
You\u2019ll see, son.<\/p>\n\n\n\n
At 40, with a child, maybe several if you want several, you understand quite quickly that every new thing you add to your life also adds a layer of complexity.<\/p>\n\n\n\n
More responsibilities.<\/p>\n\n\n\n
More problems.<\/p>\n\n\n\n
More things to manage.<\/p>\n\n\n\n
But these problems can also bring extraordinary things.<\/p>\n\n\n\n
And maybe that, in the end, is what life is\u2026<\/p>\n\n\n\n
We don\u2019t always choose what happens to us.<\/p>\n\n\n\n
But we can try to make something of it.<\/p>\n\n\n\n
So there you go, son.<\/p>\n\n\n\n
I am 40.<\/p>\n\n\n\n
Your Papy Robert keeps going on his bike trips.<\/p>\n\n\n\n
Your mum fights every day so that you are well.<\/p>\n\n\n\n
Your godfather caught Covid.<\/p>\n\n\n\n
You ride your bike and do drifts.<\/p>\n\n\n\n
Your teeth are coming through.<\/p>\n\n\n\n
The association is moving forward.<\/p>\n\n\n\n
We are talking with people on the other side of the world.<\/p>\n\n\n\n
And I am trying to understand what I am going to do with all this over the coming years.<\/p>\n\n\n\n
You will see what life shows you.<\/p>\n\n\n\n
In the meantime, I enjoy every day with you.<\/p>\n\n\n\n
I love you, my son.<\/p>\n\n\n\n
See you later.<\/p>\n","protected":false},"excerpt":{"rendered":"
Papy Robert completed his challenge, the story went international, and I turned 40. A letter to my son about a resounding success, a fat-tyre bike and almost normal parents\u2019 problems.<\/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-6357","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\/6357","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=6357"}],"version-history":[{"count":1,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/6357\/revisions"}],"predecessor-version":[{"id":6951,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/posts\/6357\/revisions\/6951"}],"wp:attachment":[{"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/media?parent=6357"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/categories?post=6357"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/hopeforgabriel.com\/en\/wp-json\/wp\/v2\/tags?post=6357"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}