Skip to main content

evenings and mornings

Last night was the beginning of our new schedule oriented around Leo.  We drove the five miles under a full moon to meet some dear friends at the hospital to bring Leo his milk.  The night nurse had some speakers set up near his head and was playing music.  This is new thing.  He seems to like it.  He has also been moved to a very quiet area of the NICU and he gets a lot of attention from everyone there. 
For us every evening is sacred, every morning seems clear and quiet especially considering how just five days ago, before he was with us, the silence seemed unbearable.  I imagine it will remain like this for a while unless Leo surprises us.  Mornings and evenings, silence and sadness.  We hope that this unfolding of events in the next week and daily flow will begin a rhythm in our lives oriented around Leo.  The simplicity of everyday is the reminder that we'll do whatever we can right now.  And go with the flow.  
Justin
 

Comments

  1. Hello,
    Just wanted to say that you and Leo are in my prayers. I found out about him and this blog through Audra's blog. Kyrie Eleison.
    ~Janelle

    ReplyDelete

Post a Comment

Popular posts from this blog

With Mixed Feelings

So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...

Pharmaceutical Fallout

"Back to the hospital?! You're joking right?!" I'm sure you guys are wondering what's been up with the Lion this past week after our worrisome VEEG adventure.  To tell you the truth, I feel like I've been taking shots of Leo's drugs and consequently feel dull and numb and just plain depressed. That is now of course, two days ago I was running high on adrenalin and resembled a charging rhino. I'll tell you why: So after being put on his new drug, Trileptal, Leo definitely started having a cessation of seizure activity, unfortunately however, he also started having severe headaches, photophobia, inconsolable crying and then in the last couple of days, a rash on his thighs, face, and hands. Just as an FYI the word "rash" is a magic word that will open the doors of the medical castle faster and slicker than a trojan horse. It's true, one does not mess about with allergic reactions. Day 1 Day 2 (rash got progressively ang...

The School Bus As Metaphor

A school bus can mean all sorts of different things: dread, boredom, excitement, responsibility, change...it means something different to all of us. I was primarily homeschooled as a kid, and though I preferred that, there was still an element of desire and curiosity for me every time I saw a school bus when I was young.  I couldn't help but wonder what it would have been like to be part of the school bus world. Of course I didn't have to wonder about it for very long because I did, in many ways, have the ideal education. There was that time I took the winter off from school instead of summer to practice my extra curricular work which was...downhill skiing and snowboarding. Then there was the part-time jobs at the local farms that I was able to do because of my own set and very flexible school hours. To clarify, because it sounds like I didn't do any academics at all in the above two sentences, I did. Lots. Tons. But I did them efficiently and completely independently, e...