Charlotte, Valentin's mother

“Everyday life is navigating between light and shadow, but honestly with a lot more dark moments. There's immense love, moments of joy... and then there's raw reality.

I'm going to list my most difficult elements to deal with. I'm sorry for the “pamphlet” but this long text is representative of our never-ending struggle...

The permanent unknown 
A syndrome so rare that even doctors struggle to give us answers. What future for him? What care, what help, what solutions? So many unanswered questions.

Exhaustion 
Physical, mental, emotional. Nights that are too short, days juggling crises, medical appointments, school, administrative procedures. Having infinite energy seems to be a prerequisite, but we're not machines!

Isolation 
The world doesn't always understand. Going out becomes complicated, judgments come unasked for. Friendships change, families don't always know how to help.

Crises 
How do we deal with what we don't understand ourselves? Powerlessness in the face of emotional storms, fear of doing the wrong thing, frustration at not always being able to soothe.

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Endless administrative procedures

Always having to prove your disability, filling in endless forms, almost having to beg for essential rights.

School and medical referrals 
Where should our child be placed? Where is best? Places are scarce, solutions limited, and we're asked to wait... when every day counts.

The gaze of others 
The feeling of being different, of being judged, sometimes ignored, sometimes infantilized. We just want our child to be seen as a child, not as a case.

Lack of support and respite 
Few structures, few solutions to take a breather. Because an exhausted parent can't be a fully available parent, but he or she still has to keep going.

The future 
Who will take care of him later? What happens when we're gone? An omnipresent anxiety that few people really understand.

The need to bear witness 
Because talking about it means giving our children a voice, recognizing our difficulties and hoping for change. Because the battle must not be fought alone.”

February 2025

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