Oh my God.. pneumonia for Daniel

On Thursday November 18 Daniel was breathing well.  He was actually not able to breath safely without oxygen.  Got him to the local hospital they then transferred us to Connecticut Childrens hospital where we stayed until his pneumonia was better.

Sunday was Sarah'Rose's 16th birthday.  And her final performance of Footloose at the Regional Center for the Arts ...in Trumbull, CT...

My brain feels like its going to explode with emotion.  Daniel's scoliosis is worsening.  I didnt do a great job of celebrating for Sarah... although she did get her kitten.

I can't afford much of anything...and yet I'm trying.  I feel like the world is just sucking all the money right between my fingers.

Daniel needs so much.  Sarah has college around the corner. Thomas just wants to be 10 and have a life.

I want to go back to nursing school to fulfill my passion to be able to financially support this team....  its not easy for John to feel that its all on him.

Daniel ...   you scared the hell out of me with this not breathing room air above 90 thing.  I feel like I am so behind.  Behind my behind ed ness.

I wish I could bring Sarah to a broadway show of her choice...with a bunch of friends...and celebrate her 16th in style.  I wish I could plop Daniel on a plane and get him out of germ filled cold and dank Sandy Hook...and go swim where its warm.  I wish Thomas had the ability to have more play dates, to see a real football game......  To all of them...  Daniel is a great joy, but a great burden.  To me...I love him and them all so much I fear the day that it will come apart.

God I pray you will help me.  Help me pay this mortgage.  Keep the old cars running.  Keep the old appliances running for another 10 years.

The big dream for me is to renovate the first floor so the Kitchen isnt a maze of a hallway to get the wheelchair around... make it all open... add a first floor bedroom so I can be near to him.

This time I spent in the hospital with Daniel this week gave me lots of time to think...  and pray.

The damn economy doesnt take into consideration those of us who CAN work, but CANT work because they are at home caring for a child who is severely disabled.  It sucks.

And then the child becomes ill....and everything goes to hell in a handbasket.