Last Sunday, I met a beautiful 4 yo girl, with big bright eyes and glossy hair. I had no idea her long, thick eye lashes were a symptom of her disorder. She was relaxing in her custom made chair, looking out over a neat garden with a swing, set up for her and her younger brother. She was dressed to the nines, in bright colors, to suit the Spring season. I got to strike her leg and for a moment, she glanced at me. We connected instantly. Her parents told me about her condition. The only part of PCH (pontocerebellar hypoplasia) type 2 I understood, was cerebellar, meaning something was terribly wrong with the brain of this little girl. How could this beautiful child not be perfect? A genetic defect made her the way she is. Being transferred to mom's lap, she was so calm and at ease. I asked her mom if my perfume would distract or bother her. She told me her little girl had no discomfort when it came to perfume. Although she can't speak or communicate else than cry - which she only does when something's not right - she and her husband know their young daughter better than anybody else ever will. I have nothing but deep respect for this family. I admire the way they have altered their life to give their baby the best care possible. A hectic schedule of care takers, physiotherapists, visits to the hospital,.. keeps this family going. Both parents have their special one-on-one time with their daughter. Time they wouldn't want to trade with anybody else. Because this physical contact is so important to them and to this young girl. She loves to be cuddled and fiddled with. She likes you to read to her or sing her favorite songs. Falling asleep in your lap, is what she prefers.
This young girl can teach me things about life. She can teach me about the importance of loving unconditionally. Her personality will bring me down to earth again. She's a special child. Grabbing and pinching my finger told us she chose me to be her next care taker. I'm looking forward to our next encounter.