Blog #8: The National Institute of Health (NIH) and Death to Self

Well, we have made it to the Bethesda, Maryland and the NIH.  One obviously sets expectations for a place of this nature, after all it is the temple, mecca, st. peters, the holy grail (you get it) of complicated medicine.  This is not a place you get to come over night, but it is the first place you want to come when you realize you have a child with a rare disorder.  For all of the visions of splendor we probably had in mind, and at the risk of sounding arrogant, I must say that our initial reaction is that this is a well-used hospital (and that is not necessarily a bad thing.)  There are some perks different from the other stale, old hospitals we have found ourselves in.  For instance, you don't want to deal with the crowds and lines of admission in the morning, no problem...feel free to check in at any hour of the day or night.  We went over about 8pm last night (remember the girls were still 3 hours behind in time last night).  We filled out all of the lengthy paperwork and they showed us our room.  This is when reality set in.  I think Dave could see in my eyes that I thought the walls were closing in, and the first thing he said was, "I think it just set in what a challenge these next couple of weeks are going to be."  Needless to say, Emilia is no dummy.  You could tell her attitude began to change as soon as she saw the lobby...she knew why we were there :(.  You probably could have seen Dave's and my heart skip beats when we realized that you have to share a room with another sick child...wow, this is reality.  Anyhow, the other perk is that the nurses know that if you have made it this far, you do not likely need to be schooled, in fact they trust that you know what is best for your child.  Last night, the nurse asked us if we needed anything while we sat pretty well stunned in the room, and I couldn't help but ask if we really needed her to stay the night in the hospital.  After all, they also have a room for us at what they call "The Children's Inn"...their version of a Ronald McDonald House right next to the hospital.  Much to our surprise she said she would ask a doctor.  She came back 5 mins later and gave us a get out of jail free card for the night...wow was this liberating.  I don't know that we could have made it last night...everyone was so exhausted.

So here we are, all ready to head over to the hospital for the official start this morning, waiting for the girls to wake up.  I would be lying if I said it was a good night.  I should have warned you that by writing this blog these next couple of weeks in real-time you may get some of that raw emotion that I try to avoid :(.  In fact, I'm going to leave you with a song that really speaks to how I feel about staying in a hospital with a small child.  It is (the song and the experience) about a death to self...sorry to be so dramatic but this what I keep hearing over and over in my head this morning, death to self.  The song (in fact the whole cd is beautiful), click here and please listen:  http://www.youtube.com/watch?v=e5xEYgGr6ms