Today is “The rare disease day”, and it gives me a good opportunity to write about our daughter, Mille, which has Sotos Syndrome. To us it feels a little weird to think of Mille as “diseased” or “sick”. To us she has always been a little special, and we have gotten used to it.
We are a family of 5 from Norway, and Mille at 8 is the youngest. She has 2 big brothers who love her to death. They have never treated her any differently than any other annoying little sister. And despite of her syndrome, she normally doesn´t expect to be treated in a milder way either. As parents we have always tried to treat Mille and her syndrome as “normal” as possible. But like any other child, she will try to use her disability as leverage from time to time. “But mum, I didn´t know better. You know I am a little “special”, is sometimes tried. But she rarely succeeds…
Mille is this family´s big bundle of joy. She never hides her feelings, and is probably one of the happiest kids I know. And she loves to spread the joy around. Whether she has known you for 5 minutes, or 5 years, she will give you a hug if she thinks you deserve it. Her heart is overflowing with love for the people around her, and she is not afraid to show it.
But once in a while it hits me. It might be some small thing she is scared of, like balloons. She is deathly afraid of balloons. It is completely irrational, but the thought of a balloon bursting in her vicinity is often too much for her to cope with. I also think more of her “specialness” when we have to go through new rounds of doctors and examinations. As we live in Norway, healthcare is “free”, but it still takes a lot of time and energy to complete all forms and applications connected with having a “special needs” child.
But I would never have it any other way! Having Mille has made us see the world in a whole new perspective, and I actually believe it has made our family better persons. So to all of you out there, blessed with a “special” child; Happy Rare Disease day!
Hugs and Kisses