Lessons I learned from Albie
Life Lessons from a Child with Prader Willi Syndrome
Lessons I Learned From Albie
My son Albie was born by emergency C-section. He spent two long months in the NICU and after a week of showing no change in his silent, limp condition, the docs took blood tests to find an explanation. The diagnosis came with many troubling attachments, and no predictions of the wonderful moments which we now experience with Albie.
Fortunately, we made contact with support groups who were able to steer us away from despair. Through them we have found a new normal, different from the one we’d planned, and it turns out that our lives are now richer as a result of having him in our life.
Live in the moment. Albie doesn’t dream of tomorrow, and he doesn’t miss what isn’t in front of him. He literally makes the most of what is with him in the room. His life is literally one big NOW. If we are to have any chance of communicating with him, we have to join him in the now, and modern man has lost that skill. Albie makes it easy.
Try and try again. Albie fails, and Albie falls - a lot. His low muscle tone means that he cannot easily do what others take for granted. He struggles to walk up stairs and he’s a four-year-old boy who cannot jump.
When he runs out of steam he simply waits, regroups and tries again. I have spent time with some tough, impressive people in my Military, Surf Life Saving and Pilates careers, but I have never seen anyone so unattached to failure emotionally who just calmly gets up and tries again.
Move forwards. Albie does this figuratively and in real life. There is so much we have had to become experts in, so many skills we’ve had to perfect. We are now skilled experts in new fields, different to what we’d planned, but pretty useful, nonetheless.
Albie doesn’t stop and wave at the nursery door when we drop him off. He is sometimes a little teary, but he can easily be distracted. His forward directional skills aren’t slick, and he often bumps into a door frame as he trundles through carrying more toys than he needs. He ends up on the other side with less than what he brought, but he is determined to play with what he’s got. Life lesson: Things will be ok.
Different but ok.