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.

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Facebook | Miss Me

Following

I have been doing a lot of searching here in the blog and in doing so, have found myself searching ME, if that makes any sense!  I have alway been the kind of person that is always looking within myself, reading all the self help books and articles that I can, wondering, and basically searching the universe trying to figure it out. trying to figure out who I am.  Life had not dealt me a good hand, or so I thought.  But really it did.  I was raised in a loving home with my sister, we didn't have too much, but we had what we needed and most of what we wanted.  I became a meth head while in high school, but still somehow managed to graduate with good grades and a decent grade point average.  I spent the next fifteen years being a nonproductive member of society, in and out of prison, hooked on one drug or another (mainly meth), until one day I found myself back in jail yet again, with my three beautiful daughters in the Child Protective Services system.  That was a turning point for me.  These beautiful girls that I loved so dearly, who didn't ask to be brought into this world, were being ripped from the life that they knew because I so selfishly could not get it together for them.  That was three years ago.  It has been over three years (June 13, 2006) since I have used meth.  And what a wonderful three years it has been.  I am raising my daughters with their father, who is also clean from his meth addiction, and life could not be better!!  My kids' father, who also spent his life in and out of prison and addicted to meth, never had a job and spent his entire life living for his next fix.  What a changed man he is today! I am now a stay at home mom, and he is the sole provider, working eleven hour nights, six days a week.  I love this man who has changed so completely to give his family the life that they deserve.  I love my life. I love my family.  I love my children.  And most of all...I love my self.  And it has been thru the reading of other peoples blogs and posts and my own thought processes that I have realized that I don't need all these self helps...I just have to look within myself!

Hot Dayz

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The wather is finally warming up.  With the warm weather, inevitably comes heated tempers and irritablility!  I, for one, am an expert on tempers.  My four year old Abbigayle and I have attitudes that clash on a daily basis.  At four years old, her temper is a force to be reconed with!!  As is mine.

It is a constant battle as well as a constant learning situation for me.  How will I ever teach her to hold her temper if I can't even set a proper example??  I am continuously reading magazine articles and self help books on the topic, to no avail as of yet.  'It's a process' is what I keep telling myself...and I am always open to suggestion!  Does anyone have any??

Beginings

Hello everyone....My name is Joleen. I am new to blogging so bare with me if you will! I am a stay at home mom hopeing to connect with new people. I am the proud mother of six (three of my own and three step kids), a wife, and the sole care provider of my terminally ill sister. I enjoy reading, writing, meeting new people and learning new things. I am open to any suggestions and instruction to getting the hang of this new adventure that is called blogging!