Hello, son,
A few little updates!
Food challenge, again and always
These past few days, it’s become very complicated to feed you. It’s never been this difficult. You refuse the spoon and even water!
I tried a bottle of milk—it had been 11 months since you’d had one, so you didn’t necessarily know how it works. But now you don’t want that either…
This morning, I managed to feed you with a spoon, and the nanny managed, with some difficulty, to give you a bit of food. It has to be mixed with a lot of water.
It’s clear that by trying to give you the calories you need—about 1,200 per day, because of your illness that makes you burn more than a normal child—you’re starting to develop serious behavioral issues around food.
It’s not good, but it’s very complicated!
On one hand, you need to eat more calories than a normal child. On the other, you suffer from significant reflux because of your illness, which causes heartburn and prevents you from eating.
It’s really complex.
Your mom and I have given ourselves until the end of the month to see how things evolve. We don’t want to force you anymore.
At worst, we’ll take you to the hospital to have a feeding tube placed. At best, things go well. For the long term, a gastrostomy is still being considered, and it’s starting to scare us less.
We’re thinking that maybe it’s better this way, so you can finally discover new foods and learn to eat with pleasure. It’s sad, but it’s our reality.
Participation in the AFPIE conference
Today, I participated in a conference organized by AFPIE, a French association created by YAËLLE, a mother of a child with a lung disease as well. The goal is to support parents on this journey.
It started at 4:45 in the morning—you woke up at 4:30, and we watched the beginning together!
It’s an association that helps children with interstitial lung diseases. It’s not exactly your case, but there’s a lung connection. There were many testimonies, particularly about the transition from childhood to adulthood, from pediatrician to doctor. Parents spoke, but also young adults.
For the first time in a year, I felt like I wasn’t an alien anymore.
Today, when we talk about what’s happening to you, no one who isn’t medical (and sometimes even medical professionals) really understands your illness, because it’s rare. And I feel like we’re bothering everyone. (Which is probably the case, and I understand it.)
There, on the contrary, I felt understood.
And on top of that, it was in French, so after a year of hearing only Portuguese and a “graças a Deus” in every sentence, it really lifted my spirits!
What particularly touched me was the testimony of the young people. The importance of educating you about your illness, giving you the tools to be independent, and helping you accept it.
A young woman shared that her boyfriend had told her she had a disability, and she took it very badly. In a way, it is one.
The same person said she traveled a lot and had already been refused boarding by airlines because she had her oxygen device. She had to sign a paper saying she took responsibility for dying. Unbelievable.
I liked her mindset: “If you don’t push, you get nothing.” I hope you’ll be like that.
I hope we can teach you that strength, that resilience, and at the same time that kindness and empathy.
I had the opportunity to present what happened to you and the HopeForGabriel association, the BOCommunity.org project, and Grandpa’s LesColsDuSouffle.com project. By the way, I added a forum section yesterday on BOCommunity, where parents from around the world can ask questions and they’re automatically translated into all languages.
Their association also seems to have internal web support needs, and I might be able to help their webmaster on that front.
I’m glad I joined their association—it gives me an additional foothold in France to continue all this, and it opens up the network and the chances of finding solutions.
The nanny is going back to Fortaleza for a short period, and we’ll be just the three of us with your mom. I’m really happy! I love when it’s just the three of us. I feel like we’re a normal family.
I know a big challenge awaits us with food, but I have hope that with a lot of love, you’ll find your way, and if you don’t find it on your own, we’ll find solutions.
By the way, the president of the association is launching herself as a consultant for children like you, who have lung problems and eating difficulties. It’s very connected. I’ve already sent a message to consult with her. All help is worth taking. We’re not giving up. We’re moving forward!
I love you, my little potato.
Dad
