Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Sunday, February 13, 2011

She has Lost Much of Her Muchness


Mad Hatter:  (to Alice) You used to be much more..."muchier." You've lost your muchness.


I have just watched Tim Burton's movie: Alice in Wonderland and was struck by this quote from the movie.

It is in fact, a perfect description of what happens to a person who suffers from dementia.

My Mom, Evelyn was once an intelligent, sharp-witted and delightful spirit. She loved to talk and dance and listen to music. She was strong-willed and confident and although she stood only 5 feet tall, she seemed more like a giant to me. Her spirit was filled with much muchness.

She enjoyed doing crossword puzzles and always knew how to spell a difficult word.
Her personality exuded sparkle and effervescence.
She was always the one you trusted when you needed good advice.
She was straight-forward, wise, finding solutions easily to the most difficult problems.
She was afraid of no one.
She was a wonderful teacher, educating her 4 children on the importance of things like confidence, independence and self worth.

I have stood by helplessly as I have watched my mother slowly succumb to this horrible disease.

It has effected her mentally, robbing her of her short term memory and her impressive intelligence.

It has effected her physically. She was once swift and light, moving like a feather dancing through this world. She is now stiffened and hunched walking slowly, painfully and always with the use of a walker.

It has effected her spirit, dulling that sparkle in her eyes, subduing her positive attitude and replacing it with crippling anxiety and overwhelming depression.

The once fiercely independent woman is now almost entirely dependent on many others to help with her day-to-day care and mental health.

I miss my mother terribly and feel somewhat swindled that she is lost to me when I need her most as I raise my children with complex needs.

I am saddened that my children will never know the fiery spirit that once was.

It is like a prison sentence to me, watching this once dancing and vibrant flame slowly flicker out. The doctor and therapy visits seem useless, only prolonging her pain. I feel so very helpless. I feel angry and sad. I feel like I am failing my mother.

The painful and agonizing effects of dementia have robbed my mother of her muchness and left her much........less.

It has left me, my family and the world with much, much less.