Blog #3: Sleepless Nights

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Some people prefer to blog in the midst of an experience.  I assume so they can share the raw emotion one is truly enduring at that moment and, wow do I love to read these.  I however, am much more paranoid, self-conscious and prefer to write retrospectively where you have the benefit of looking through the eyes of wisdom, or better said, so you can Monday morning quarterback!  This last month we decided to experiment and see if Emilia really needed a medication we had been giving her since she was a month old…prevacid, for acid-reflux.  Lately my reading obsession has been centered on genetics, evolution, and food, and although I have always known the importance of the gut, I believe it to be true more than ever.  Part of me wanted to give her gut the chance to self-adjust and I worried that long-term medication would prevent that.  Well, I think the test was a failure.  Although she didn’t start throwing up again, she really started complaining about her stomach a lot, waking up a lot at night screaming in some sort of pain, and sadly nearly stopped eating by mouth.  Yes, I know you are calling me an idiot right now (speaking of Monday morning quarterbacks J), however I still think it is a valid test every few years.  Needless to say, I went and picked up the prescription today…whew, and we sure are hoping it kicks in tonight because we really don’t miss having to get up at all hours of the night.

Speaking of sleepless nights, as many of you know, Emilia rarely slept as an infant.  For the first 8 months of her life she would wake up at least 15-20 times per night, and had a similar pattern when napping.  It got so bad that Dave and I eventually just decided to rotate nights, he would sleep in the room with her one night and I the next.  And boy did I dread the nights I was on…Dave on the other hand (although he usually really likes his sleep) somehow was able to turn it into something of a competition or challenge, something he could win, and he actually enjoyed feeling like a survivor in the morning.

 I recall one time Dave was leaving for a business trip for a few days.  In preparation he let me have two whole nights of good sleep so I could build up some staminaJ.  Those nights he happened to be gone were some of the worst nights Emilia ever had.  At that point we had been sleeping with her in the downstairs bedroom because it was the coolest room and she would sweat so much at night that we just assumed it would only be worse if it wasn’t the coolest room in the house.  Going into the third night I can seriously say that I was bordering on insanity.  I felt so horrible and I really couldn’t think straight (the poor boys that I should have been taking care of J).  In the midst of that night, I woke up for probably the 10^th time, I hopped out of bed and looked around and the room was full of people.  I mean it, absolutely full of people.  Many of the faces I either didn’t recognize or just couldn’t remember in the morning, but there was one that I knew and can still see vividly.  It was Ruth Godfrey.

Many of you know Ruth…a very dear friend of my family, a best friend to my mother and father.  She had passed away about 5 months prior to this nightL.  As I looked at her closer I honestly realized that this room was full of people praying..and it was just like that “great cloud of witnesses” I had always heard about..wow, I know this is getting pretty deep (imagine what it would have been like had I written of it in the midst).  I have to admit, although I felt a little bit renewed, in the midst of it I was quite frightened (I could have used an angel saying, “Be not afraid”).  Here I was alone in this house with three kids and my mind couldn’t explain or comprehend what it was seeing…I hovered in the corner of my bed just praying Emilia wouldn’t wake up again until they were gone.  In hindsight, I obviously know that my mind could have been hallucinating, but it was a profound hallucination.  Part of the profoundness really surrounded my vision of Ruth.

Not too long before she passed, my mom and I went over to visit Ruth.  I knew it was likely to be the last time I would see her and I have to admit it was very sad, and a very hard thing to do (as I am certain many of you have felt before).  I was quite pregnant at the time and was aware at the potential seriousness of Emilia’s condition at that point.  My mom, on the other hand, was not.  We had decided not to talk much about it because we didn’t want people to worry, and after all she was improving and we just hoped it would go away (be quiet all you Monday morning quarterbacks, yes I know this probably wasn’t the most considerate of decisionsJ).  I recall hugging Ruth and thinking to myself how much I would love to ask for her prayers, someone so close to death, like they are already partly gone, suffering so much and thus having so much to offer on our behalf…how quickly those prayers could be delivered.  I decided not to, but she really hugged me so tightly, perhaps she knew.  It was a profound moment that I knew I would remember later.

Seeing her and the full room that night confirmed so many things for me.  In hindsight, after many more months of tests and realizing some issues Emilia has with both her heart and lungs, it is likely safe to consider the fact that we were able to keep her alive throughout all of that screaming and lack of sleep (obviously having a hard time breathing or who knows what) a sheer miracle and we sure are thankful for our “great cloud of witnesses” on earth and in heaven.  

I can assure that many, if not all of the families that go to the Center for Rare Childhood Diseases at TGen have had as many sleepless nights as we have…it just seems to be so common with kids that just don’t feel well, please keep them in your prayers.