Sunday, December 26, 2010

A Sigh is Just a Sigh...

Our family had a good Christmas.  We ate too much; stayed up too long; made a mess; went to church; made cookies; saw family and friends and generally had a normal Christmas.  It was glorious!  I rode home in the back seat of our car with my son yesterday and he put his head on my shoulder and whispered, "Merry Christmas" with a sigh.  It was the best gift ever to hear- that contented sigh.

I cherish contented sighs.  I long to hear them.  I want to create them, though I know I cannot.  I do everything I can so that my kids will have a contented sigh.  We all do if we think of it.   A contented sigh means that all their needs are meet, physically and emotionally.  The sigh means that they are met so abundantly, that satisfaction is putting them in a relaxed happy place.  This is a place free of pain or worries.  A thought that all is right with the world right now.

I just wish I could hit the pause button on that moment and others like them.  I don't think I am the only one that does not hear contented sighs from those around me or makes them myself.  Why is that?  Why do I not sigh contentedly more often?  I have many things in which to be grateful, but do I sit back and contemplate them and recognize when I am contented, satisfied, or happy? 

No, I don't.  Usually I am thinking about the next thing I need to think about or worry about.  Worrying never produced one contented sigh.

Monday, December 6, 2010

A Fresh Perspective

Elizabeth is home from the hospital.  She is stronger than she has been in a while.  The work she did while on the physical rehab floor was amazing.  Her endurance increased as well as her strength and her pain levels decreased.  I think the hospitalization was a success.

However, one of the reasons we wanted her in the hospital is so that we could get all of her doctors to discuss the falling issue.  Not all of the doctors were in the meeting, specifically her regular doctor, who called the meeting together; her neurosurgeon and her spine surgeon. 

All of the other doctors said that she looked great, to which we agreed.  They also said that they did not think her falling was due to the POTS (the heart issue).  We also agreed that her POTS is being controlled with medicine.  No falls occurred while she was in the hospital so they had no idea why she was falling.

The absence of the key doctors not withstanding, they had no theories, but even more important, no ideas on how to keep her safe.  In fact, they suggested that she walks more places and more often.  Is it just me, or does this sound crazy.  The only places we have really let her walk are the YMCA, where she has fallen at least once and had to leave in a life squad; our house, where she has suffered concussions, torn hips and other damage; church where she has left in a life squad and they bought a backboard just for her and some friends houses where she has left in a life squad.  Do you see a pattern? Oh, by the way, the reason she was restricted is based on their advice.

I asked, so if she falls in a store, what am I supposed to do?  Just let her lie there a couple of hours so she can put all of her joints back into place?  Honestly, I don't think these doctors understand real life.  In theory, letting her walk more places sounds good, but in reality, it is crazy.

So... as a family we had to decide what to do on a daily basis.  Our decision was to not live in fear.  We cannot live our life fearful of the next time she falls.  Fear is the opposite of faith.  Fear puts us in prison and that is kind of what Elizabeth's life has been like for almost a year.  We are going to let her walk more and go more places.  We are going to do it safely and with supervision, but ultimately we have no choice.

We are not, however, going to give up trying to find out why she is falling.  I think some of the recent falls can be attributed to her POTS and we will do everything in our power to keep her medication and water levels correct so she does not fall, but we need to know more about the instability.

She will go to a neurologist soon to check her brain stem.   I do not think they will find any abnormalities, but it was suggested that this be done.  We will also check in with her spinal surgeon in February.  Hopefully this will give us enough time to rule all other possibilities out and make an informed decision.  Despite what the doctors think, I do not want her to have the C1-C2 fusion.  To me, the surgery would be of last resort.

All of these thoughts were going through our family as we brought her home last week.  We were sad, frustrated and a little angry about the meeting.  We were all discussing it when Erica said, "Elizabeth is home!  Our whole family is in the same house.  I cannot stop praising God!"  When things look bleak, a fresh perspective is sometimes all you need!