When putting my daughter Alison to bed at night, I would tell her I love her. One night when she was thirteen years old, she said “mama, mama, mama I la lu”. After a few seconds I realized she said “mama, I love you”. A few nights after she said “I la lu”, she said “mama, I ra ru”.  Alison saying this was a complete surprise for me.h phrase once, but I will take it and forever cherish hearing it.

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Alison has multiple disabilities and can say a few word approximations and otherwise unable to speak. She had a rare form of seizures called infantile spasms. From what I understand, infantile spasms didn’t cause brain damage but instead is a result of damage. Cat scans did not show damage so I inquired with her neurologist on whether Alison’s brain could be “mis-wired” instead, the doctor said it could be but there were no tests for it.

Alison’s life has been filled with unique challenges for herself, for me and for our family. There are things she learned to do .. hold a cup, drink from a straw, turn on and off light switches, crawl, walk although unsteady, say some word approximations and communicate with her own informal gestures. She loves to eat and listen to music by Alison Krauss. She was never taught sign language as her fine motor skills are limited but she came up with a modified A and K in sign language for Alison Krauss. She makes an A a few times, then the K while placing the K on her nose.  She enjoys life as she knows it and is happy.

The “I la lu” and “I ra ru” were music to my years. She only said each phrase once, but I will take it and forever cherish hearing it.