Loving without putting life on hold

People sometimes tell us that when you have a child with specific needs, you should put your life on hold. As if everything had to stop, as if our family were supposed to wait for a simpler, lighter, easier time. But I refuse that idea.

We have three children, and each of them matters in exactly the same way. Each has their own place, their own personality, their own way of being loved. Jaja is not defined by his specific needs. Above all, he is a whole person, a unique child, with his own personality, emotions, strengths, and his own way of finding his place in our family.

It is important for me to say it this way, because I do not want our daily life to revolve around a label or a word that does not truly sum him up. Jaja is not “a disability.” Jaja is Jaja. And that is how we see him, just as we see his siblings: as different children, each loved for exactly who they are.

Of course, living with a child who has specific needs takes a lot. It takes organisation, patience, and constant adaptation. There are days when the fatigue is immense, when everything feels more complicated, when it seems like we are trying to manage a thousand things at once. But even with all of that, I refuse to put our life on hold.

Because we also have two other children, and they need us too. They need to laugh, to play, to go out, to fully live their childhood. Our family cannot be built only around difficulties. It must keep moving, keep breathing, keep existing in its entirety.

I believe that loving a child also means allowing them their full dignity. It means refusing to reduce them to what they have or what they lack. It means recognising their full worth. It means accepting that our life may be different, sometimes more intense, often more exhausting, but never put on pause.

I do not want to wait for everything to become easier before living. I want to live now, with our children, with our joys, our challenges, our adjustments, our laughter, and our hard days too. I want to keep building a family life that does not stop, but adapts. A life where everyone has their place. A life where Jaja is seen for the person he is, not for a label someone might want to place on him.