My story

This is about my life as a wife and mother of three blessings.  My husband and I have been married for over 19 years.  Together we have three children;  Our oldest son is 17 years old and was born to be a leader.  Our daughter, known to most as the princess, is 13 years old, and is living with Rett syndrome.  Our youngest is 5 year old and full of energy, spunk and no fear.

My hubby and I met working at a groceries store when I was 16 years old.  We were married in the summer of 1997.  Six months later we were pregnant with our 1st son.  Only Three months after our 1st wedding anniversary our son was born.  He had colic and was a busy baby.  I loved staying home with him and knew that being a mother was my calling.  When he was four we found out we were pregnant with our only daughter.  I really wanted a girl and life was bliss.  When she was born we thought we had a perfect family.  We had one boy and one girl and I dreamed of all  the mother/daughter things we would do together.  When she was a year old all that changed.  She started regressing and we knew something was wrong.  I took her to many different doctors and we got the (misdiagnose) as Autism.  For a year we thought our daughter was autistic, but something just did not seem to fit.  We saw even more doctor and specialist.  Then she started to have seizure, so we took a trip to Stanford medical center for a video EEG. After three days in the hospital a team of doctors came in and told me our daughter was not only epileptic but also had Rett syndrome too.  I have no idea what Rett syndrome was so I listen to the doctors tell me my little girl was going to regress , she will be in a wheelchair by 5 and will most likely not live to see her twenties.  It was the worst day of my life and to make matter worse I was alone, but husband was working and they laid his bomb shell on me.  When my husband arrived we cried together at the loss dreams we had for our daughter, but then we stood up and we did some research; we found out there is new research and the doctors were giving us "worse case senior", but what if she the one to define the odds?  We learn many girls live into their thirties, forties and a small few into fifties.  We knew she was a fighter and we were going to help her fight.I am not saying it was easy.  Rett syndrome has stolen many things away from my daughter, but we cannot change her diagnosed we can only help her to manage it, and give her the best quality of life possible.  To learn more about her check out Marebear's page or to learn more about Rett syndrome click here. 

  In the Winter of 2007 we moved from Reno, NV to Austin, TX in an effort to help our daughter.  On New Year days of 2010 I found out I was pregnant with my second son, we call him AJ.  My two boys are wonderful brothers with so much compassion for their sister.  They do not see her disability, they just see their sister.  They have had to witness to many trips to the hospital and to many "close calls", but I know they love their sister and would do anything for her. 

Since the summer of 2013 Marebear had surgery on her leg keep her from being confined to a wheelchair.  The surgery did help, but a wheelchair was bought and she uses it.  She is able to walk a little with some assistant, but she tires easily and cannot walk for long distances or at a reasonable pace so the wheelchair come in handy for trips to stores, and other places.  Since she has been in the wheelchair I have come painfully aware of how inaccessible some places are not only for wheelchair access but for special needs children in general.  I was searching for a website to inform me of places that are special needs/wheelchair friendly.  Guess what? I did not find one, so I decided to try to change the focus of my blog a little and see what my reader think.  I want to offer you information on places we travel that we have and have not found accessible.  I want to let you know what we have found so you and your family can make an informed decision before you spend the money to visit. 

There you have it; I am Now a Mom of 3.

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