Tiffany was born on a rainy day on October 6, 2001.  We were so excited! This was my first grandchild and I was so proud.  Soon after her birth they realized there was something wrong.  They ran tests to find out that her heart was not wired the way it should be and through further testing found that she had a deletion off of her #22 chromosome causing many problems.  She spent the first year of her life in the hospital and the other four years in and out of the hospital for multiple surgeries.  Tiffany came to live with me in 2003 right before her 2nd birthday.  She had been put in foster care because her mom could not keep up with her medical issues, it was too overwelming and instead of calling me the system put her in foster care.  When I got her out I obtained full custody so she could get the proper medical coverage and rescources that was needed.  At age 2 1/2 Tiffany suffered a stroke due to a severe gastric bleed.  Our hopes of getting her off of her feeding tube was crushed.  She was no longer able to eat by mouth (which we had worked so hard at acheiving).  She had just started to talk and that was also taken from her.  She was also left with Cortical Blindness.  We had to actually teach her brain to see again.  This took a while but we accomplished it.  We also were able to get her to eat by mouth eventually but not enough to sustain her.  Down the line we found out the gastric bleed came from a bleeding disorder called Von Willebrand's Disease.  We were unaware and shocked by this diagnosis due to the fact she also had a clotting disorder called Factor V Leiden Deficiency.  How could you have both.  To our astonishment........you can!!  I was remarried in 2006 and Tiffany was one of my flower girls.  She was so beautiful!!!!  She was at her healthiest at my wedding.  I was so happy that she could enjoy herself.  But shortly after she started to go down hill.  Tiffany started to lose weight and we tried everything to help her gain it back but nothing worked. Her bones started breaking due to lack of calcium in the bones.  She received calcium everyday through her tube but because she was on medicine to help obsorb it into her bloodstream where she needed it, the medicine pulled it out of her bones.   She started having constant abdominal pain and was being self abusive.  It was so hard to watch her go through this.  But there was nothing we could do to make it stop.  We were watching our little girl disappear right before our eyes.  I knew we were losing her but I would not admit it to myself.  I was in a constant state of fear and panic.  To make matters worse we had  someone from the outside who thought they were advocating for Tiffany and was blaming my husband and my self for her condition. We were not allowed to know who it was.  There is a law protecting them.  Well where was our protection?  Who was going to help us?  How could someone be so wrong and so hurtful?  We needed help and support.  Our doctor's advocated for us as much as they could.  They wrote us letters to carry with us showing the condition of Tiffany's bones, and the bleeding disorder that she had.  Her psychiatrist wrote a statement showing he was treating her for her self abusiveness.  Which he witnessed himself.  Tiffany would beat her face and head and pull out her hair during her stomach pain episodes.  Which left her looking like she was hit by a mack truck. During these episodes we had to pad up her hands to soften the blow and we put a helmet on her head to protect her from further injury.    On January 18th (My brother, Woody's birthday, my brother who passed away in 1977) Tiffany had her fourth major open heart surgery.  I knew this surgery was not good for her.  She was put back on oxygen and was breathing like a fish out of water.  I alerted the doctor's and was told to CHILL OUT because she just went through a major surgery.  I told them that she had three others and never looked this bad!!!!!  Tiffany was in so much pain she actually tore her hair out and handed it to the nurse.  The nurse looked at me in horror.  I told her we had to pad up her hands and put on her helmet or she was going to be a mess the next day.  We had a doctor's order within minutes.  They helped us to cushion her hands to soften the blows to her face.  They saw what we were going through with her.  And what pain she was sustaining and they sent her home anyway!  On the morning of January 27, 2007, Tiffany suffered a severe nose bleed.  We called her doctors and they told us she would be ok, that it was just from the cannula tube from the oxygen machine.  It was drying out her membranes and we should go buy a cool mist humidifier.  So we did.  I called off work and stayed home.  I just felt something bad was going to happen.  At approx. 5:45 pm I left Tiffany's room, she was playing with her toys and watching her favorite movie on the television and was very happy.  She motioned for me to leave out the door.  So I gave her a kiss and told her I loved her and that I would be right back.  I went down stairs to help my husband lift a new Television onto the stand in the livingroom when I felt this overwelming sense of silence.  Like someone through a blanket over my house.  I went to the bottom of the stairs and looked up like someone was holding me back.  My husband told me, " Don't worry Grandma she is ok. You worry too much."  I walked away from the stairs.  But a minute later I went back.  I couldn't shake the feeling something bad was happening.  But I couldn't go up the stairs.  Soon after I walked up the stairs slowly it felt like it took forever.  The hallway seemed to have grown.  I opened her door very slowly afraid of what was on the other side.  And to my horror I found my little girl had passed away.  The time was now approx. 5:55pm.  I was only gone a few minutes.  And she left us.  The doctor that came with the ambulance says her heart just stopped, that he felt she had a clot. That it happened very fast and I could not have saved her if I was standing right next to her.  I struggle with those words.  I find it hard to accept that I could not have saved her.  I will carry that little girl in my heart forever.  And the horror of that night will never leave me.  I love you Tiffany.   I will always be your Grandma and your best friend.