About Me

Palmyra, VA, United States
Jasmine is our special miracle baby. She was born 17 weeks early and stayed in the neonatal intensive care unit for three and half months. She came home with oxygen for a short time and was free and clear for a while. She started out with the usual babbling a couple of months behind the learning curve due to her developmental delay. At 16 months, we were told she needed hearing aides for her mild to moderate hearing loss. It was then we stopped hearing anything from her. At age 2, we found out she was diagnosed with Autism Spectrum Disorder (ASD). Jasmine is non verbal autistic. In the beginning of 2010, she had been hospitalized and diagnosed with viral pneumonia. One week later, she was admitted again for bacterial pneumonia. We spent nearly a month in the hospital overall. We found out she had cysts in her left lung. In September after much debate and continuous problems, the mass and all of her lower left lung lobe had been removed surgically. It was just not any mass but a cancerous one. Jasmine has Pleuropulmonary Blastoma (PPB) -Type II.

Saturday, January 8, 2011

Week 11: Friday

Its Christmas eve and we get to spend it at UVA.  Yesterday Jasmine developed a fever early into the day.  We called Children's in DC and they told us to get her to the local ER.  With me getting over a cold, I knew I was part of the problem.  We got the call Wednesday to let us know her labs showed she was neutrapenic.  Once they told us this, all plans were canceled to leave home.  We were planning things for everyday and even Christmas Day.  We know that plans change like the weather.  Especially for us.  Our life lesson particularly focuses on this.  It's never easy to swallow but at least we were local. D 
I went home last night because I figured I would have to stay Friday evening for sure. David stayed with the her overnight.  I was still sick and now the constant mask wearing was not helping.  At home I could get away with using it when I was close to her.  Here I have to wear it all the time because I'm confined in a room with her.  David has to go into work today but was off for Christmas day.  Our first time home together with Jasmine on a non treatment week. At least that was what I thought.  I should tell myself not to think because its just a disappointment.  I had really hoped that this one time we could celebrate this major holiday with people.  
Sometimes I think we crave socialization and other times we are so tired we could care less.  I know that for sure of myself.  I feel like I have parted from the world on a social level and have condemned myself even at times when I didn't need to.  I worry even when David wants to let someone watch Jasmine for a little while so we can go do something together.  I don't know how to let go of her because she is on my mind constantly. Its a sick feeling.  My whole world revolves around Jasmine.  I don't mean this in a bad way.  She is my life. I would make all and ever sacrifice necessary to do for her what ever she may need.  I love spending time with her and wish I had more time. In fact I wish I could afford to be the stay at home mom sometimes.  I'm jealous of the days that David gets to have with her and always have been.  The school trips, the during the week events that I see advertised, I wish I could have been there.  At the same time, I have to work and I know we need two incomes.  Reality speaks louder to me now than it ever did.  


So that was Christmas Eve. I wasn't exactly cheerful.   I couldn't post because I didn't have internet at home.  And had not had a decent speed to even view or log in.  
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