What She Will Never Know

I was watching an episode of 20/20 on msnbc this morning about a woman who accused her husband of molesting her daughter to win a custody battle.  The womans parents then murdered the husband.  And I found my self so sad.  The daughter is now being raised by the husbands parents who were interviewed on 20/20.  And the grandfather told a story about the little girl; when she rode her bike without training wheels for the first time.  She rode around in a circle, then without solicitation, got of her bicycle and told her grandfather that her "daddy would be so proud of me."  So why would this make me so sad?? The grandfather told of all the things that his son would miss, and how grateful to God he was for being able to share these things with his granddaughter.  And I find myself sad and angry.  Alice, my sister whom is terminally ill, will never know any of these things.  She has never had a date.  She has never had a job.  She has never kissed a boy.  She will never have a child and feel the joy that a parent feels when that child has all it's 'firsts'.  Alice was  happy, always smiling, and never unkind.  She was a perfect young girl.  When she graduated high school in 1992, everything began to change for her.  She began losing her balance, her equilibrium began to falter, and then she started having seizures.  My mother took her to several doctors and neurologists and it was several years and many doctors later before one was able to give us the answers that we sought.  After several muscle biopsies and finally a brain biopsy, Alice was diagnosed with a very rare brain disease called Alexanders Syndrome.  It is a deterioration of the coating around the central nervous system that causes the system to essentially short out, causing a malfunction in the synopsis and relay of the impulses.  The diagnosis was given to us in 1995.  At that time Alice was given about two years to live, certainly no more than that.  It has been 15 years.  I know in my heart that if we were to have handed her care over to strangers and put Alice in to a residential care facility, she probably would not have lasted those two years.  The disease progressed rather quickly in the beginning.  Alice has lost all her motor skills, she can no longer talk, or eat, and has lost all control of her bladder and her bowls.  She has a catheter to relieve her bladder and a colostomy bag to catch the feces.  She gets pneumonia on a regular basis and the doctors have informed me that eventually the pneumonia will be the cause of her death.  And in spite of all this, Alice has never lost her smile.  She doesn't complain, and she is totally and completely aware of everything.  Her mind is still there and sharp as ever.  And to me, this, is probably one of the hardest things about this disease and what it has done to her.  I am, however, grateful to this sister of mine.  She has taught me so much.  When I am feeling down because of something, I only have to think of her smile because what ever it is that I am feeling down about, I should be grateful for what I do have;  My health, my children, my husband and my life.  Alice will never have any of these things.  And I am so sad.  And I am so angry about it.  This beautiful girl, who never harmed anyone or never had an unkind thought, let alone an unkind word, for anyone, will never know any of these things.  I am not resentful nor am I angry that I have given up a job or any life outside my home to stay here and care for her 24/7, I am grateful that I am clean and sober and able to give her the love and care she deserves and requires.  I love this sister of mine. Alice sweet Alice.