Originally Posted by cricket52

Jena:

My daughter was 5 at the time. She has Coffin-Lowry syndrome and her IQ is below the 1st percentile. She is verbal but lacks the cognitive skills to understand.

She was tickled with the gifts. Because she has no short term memory she didn't understand where they came from. I did take her to the mall and she said thank you to the volunteers who gave us Christmas.

Her mom (my second child) has CL too. Because she doesn't understand she was fair game for any guy that came along. Her mental challenges put her at the edge, so I was unable to get guardianship. She had five children, not one 'father' accepted responsibility. There is a 50/50 chance they would inherit her gene. Unfortunately all five did. We took Tasha when she was a few months old. The boys (all younger) were adopted or became Crown wards.

She is the reason I keep fighting for a quality of life. When my husband asked me to leave he predicted I would not be able to manage on my own with her. It has been a challenge but so far I have proven him wrong. She deserves to have a caregiver who can meet her emotional and physical needs and more. She will never read or write or even be able to live in a group home. Like this illness, she has given me much more than I can give her (although there are days I don't feel that way )

Originally Posted by Judy

But today I've experienced some FREEDOM for the first time in over a year being housebound. The ramp I had built into my garage from the house is finished and I can get outside with my power chair!!! YES!!! My car is sitting in the driveway but being I don't use it, who cares!?! Imagine getting so excited about going outside -- I'm so thankful for small victories!

Hugs to all of you, my friends........