family pic

family pic

Thursday, July 16, 2009

unfortunate events that make us fortunate afterall


a series of unfortunate events ....

this is one of my favorite films of all time. until recently i have never really strongly identified myself in this film. but now i cant help but watch it with tears feeling like i am just in a series of unfortunate events myself. i see those children much like my own, one very mature daughter, a strong smart & loving boy, and a baby who needs them but is also the light in their relationship. my kids dont seem to think that their life has any parallel to this movie, for which i am grateful but sometimes the picture seems not so far off to me.

the best part of this film is the end. when the children realize they are not unfortunate at all, they are truly fortunate and blessed because they have each other. and i too feel this immensly. how would we get through without each other?

i know your all anxiously waiting an update on surgery and that is really why i am taking the time to post midweek. to start a tiny bit of background. saylor does not respond to conscious sedation medications. not only do they not work for her, they cause more anxiety and heart problems. the procedure she needed (a chait tube change) is really rather simple and older kids can easily do it without any sedation at all. but saylor she is a different breed. especially recently. there has been extensive discussion about what to do and how to sedate her for this procedure and lots of confusion & chasing of tails so to speak. it has lost me hours of time and an immense amount of patience. but all in the name of my precious angel so i do it. but it just infuriates me that it has to be so difficult. isnt it more simple then that? anyhow we arrived and the radiologist was terrified to do it without general anesthesia but we said we were willing to try it. he decides to use a sedation drug she has never had called fetanol. then he proceeds to tells us the reason she has never had it is cause they dont give it to young kids cause sometimes they react with rigid chest syndrome and stop breathing. FANTASTIC! i think. what am i doing? well no rigid chest for her but once it again it did very little to calm her down and had very little effect on her. she never went to sleep, nor did she stop screaming or moving or being aware and of course she remembers it all! but we got it done. we did it! and we hope for a good long break but arent expecting it so we arent let down.

she is doing well this morning. had some pain issues in the night and last nights first flush with her new "door" was about as bad as the first cone flush several months ago. but that first one is under the belt and we hope it just gets easier from here. My cute SIL told saylor yesterday that she hates accessories not found at the mall too! i thought that was darling and hilarious.

one of the most profound moments in all this has been saylors attachments to storie & stockton. it really clarifies the bond we have as a family. that we do this all together and when we are not whole, we are not WHOLE! she cries for them consistently.


in the midst of the last 6 weeks of unfortunate events i read this book. perhaps not the best read for this period of time in my life ... or is it? a really interesting perspective for a parent of a "not healthy" child. granted cancer is not running through saylors veins but once again i found some pretty deep parallels and could relate so well to this family. really sad and interesting read. provokes thinking. i like that kind. would it provoke thinking for others as much as me? or as a parent like me? or a sibling of a sick child? i dont know. probably not though. and what i found here was a real look at where things can go and how to be a better parent in my circumstance. what to look for and how to see things, with a perspective more acute. it also taught me about that bond... the one that resides between sisters. i dont really have that myself with no biological sisters but i see and feel that in storie and saylor and i am so glad i get that participation and that it exists at the level it does.

onto reading about hitler ... and to more unfortunate events in my fortunate state!

PS we have a driving force now to add to the mix. serious buyers on grandmas house so now the schedule has become more affixed ... just what i needed!

1 comment:

Engrained Emotions said...

go see the movie, my sister's keeper. Much different than the book, but so similar. My girls and I really enjoyed it.

You are amazing, always giving, even when you think you arent.

Love your guts.