Tuesday, June 26, 2012

We Missed Elli Mae's 5th Month Birthday.

I don't quite get the "new birthday" thing.   Some parents  have cake and ice cream and celebrate every year. We are not that family.  There will be a celebration of sorts on January 24, 2013 but that is more of a

"Get out of Jail" sort of thing but then there are still some parol issues. I wonder when we will really be done.  

Six months brings a bit more freedom but there are still lots of "NO's"  This last admission for GVH sort of took my by surprise and deflated my "We are Rock Stars" attitude.

I am trying to be brave and optomistic and have planned a couple of short get-aways for myself but am also preparing myself for the need to cancell them.  I just hate the Uncertainy and may have to go to the Space Supply Store and buy some Certainty.

Fred told me before this process began that they would give Mary-Elizabeth her a chance to have her life back but we would not be returning to the same life. I told him we really wanted the long term insurance policy.

Every time we do something I realize how much has happened to her. Her body is so beat up.  Time will heal the scars, the holes, the marks.  She will become stronger and more active.  She will do more than wait for her friends to call and will call them.  She will get back into some sort of school before she returns to finish at Gonzaga.  It just takes time. 

It has been 5 months since transplant, 10 months since relapse, 7 months to go to year one. 

We can do this.  Now we need to get ready for the "real" birthday party.  4th of July the dogs go on the grill....

1 comment:

Roger and Candi Merrill said...

Roger is 1 year + 7 months out from his transplant. Almost one year out from his relapse after transplant and subsequent stem cell infusion. We just came back from 4 days of hiking in Glacier Park and he did great. It may not be exactly the same life that you get back, but it's a pretty good life. Hang in there. We are always thinking about you and sending our support. Roger and Candi Merrill