Skip to main content

Heady Thoughts

Today Leo had a follow-up appointment with his neurosurgeon. His head has come down in size 6cm since the shunt revision! Wow! He looks really great, and I think feels great too! His eyes are much more open and I feel tracking objects and faces really well. I guess the trick right now, other then making sure the shunt keeps working, is helping his head mold in a more or less symmetrical matter. It's a good thing Leo's mom is obsessed with symmetry!
It is really wild to watch his cranial plates shifting around depending on his position. Although they are getting firmer every day, so now is the time to keep him moving to keep the pressure equal all the way around. We are getting creative with foamy props and pillows. And I thought having a regular newborn was a hassle! Leo is out to keep me on my toes and learning new things. Yesterday his physical therapist, (who is totally fantastic, many many prayerful thanks for that) was pleased with his head control, and is going to get him fitted for a special support collar. Hopefully once he gets that, he will be able to enjoy being upright more.

With all this talk about his head, I was reminded about a thought I had before he was born. Well it was more then a thought, it was something that helped me from panicking. When they told me his head would be huge and deformed, I was really unsettled and nervous. I was afraid that I wouldn't be able to look at him when he was born, that it would be too much for me to handle. I was so freaked that I couldn't even go online and read about other such children, because I was afraid of what they would look like. Although as most of you know, it's hard to keep certain family members off the computer, so I still heard descriptions. And interestingly enough, instead of horrifying me, what they were describing sounded like the many faces of the Christ Child that I have painted over the years. So during my moments of terror and apprehension, I would keep reminding myself that I will give birth to a child who has, instead of our earthly fallen physiognomy, iconic proportions! In Byzantine style icons, the faces are portrayed in inverted perspective, with long elongated foreheads and eyes that are closer together. In other words, everything is drawn on a concave plane, as apposed to the regular 2 point perspective which we all know and love. The (theological) reason behind this, is that the viewer of the icon has the singular expierence of communion and inclusion when standing in front of the image. It's as if the whole face wraps around you and invites you closer. Now as I look at the face of my little man, I keep catching myself leaning in closer and closer to his face. I can't help it! He sucks you in. I realize now why he was so popular in the hospital, why he has won so many hearts in such a short time! Here is a picture of him, and of a traditional image of Emanuel so that you can see what I mean about the iconic perspective.
 Interesting isn't?And also interesting that so many parents of children like Leo refer to them as their earthly angels. Transcendent, and yet illuminating.

Comments

  1. Thank you so much for this posting. Thank you for teaching us all to look at life through Leo's lens, your hearts, and your struggle while holding onto Christ finding pure joy, perfect peace and HIS understanding. Many hugs today to the DuMoulins. Pray for us as we pray for you.

    ReplyDelete
  2. I love the comparison between iconic images and Leo and his photo on the top of the blog is absolutely adorable!

    ReplyDelete
  3. What a neat comparison! I just love his little mouth- Leo is adorable, and I'm so glad that he is doing well.

    ReplyDelete
  4. That's really amazing. I don't have any other words...

    We are all in the image and likeness of God, but I guess some of us are more so...

    ReplyDelete
  5. Anna,Wow!
    How very very true.Goosebumps went up and down my spine after reading your post.I just sat there completely mesmorized scrolling between Leo's picture and that of the Christ Child for a long long time.What an amazing revalation!God often reveals Himself through people like Leo,but we are too blinded by our sins and worldliness that we entirely miss it.Leo is a true iconic reflection of Christ! Weren't we all originally created to reflect God through our lives?Thank you for sharing.

    ReplyDelete
  6. You are so right on, I felt that way too when I was looking at him last Sunday. Drawn in, and humbled. What an awesome mystery a human being is!..

    ReplyDelete
  7. I agree with your observation, Anna. We have an exhibit up on campus of icons by Photis Kontoglou, and when I came to his icon of St John Chrysostom, I thought immediately of Leo! He is certainly in good company, and shouldn't be ashamed over his looks - his heavenly friends are not! -Taylor

    ReplyDelete
  8. It's so nice to meet you! Thanks for commenting on Ben's blog. It's not often you get to meet a "local" who is going through similar circumstances. If there is anything I can ever offer, advice or whatever...please don't hesitate to ask. Raising Ben was seriously the BEST 8 years of my life and how I would do it over in a heart beat if I could. Thinking of you....

    ReplyDelete
  9. Thanks Anna...now whenever I see an icon of the Christ child, I'll think of Leo and start cooing, and people will think I'm crazy...Leo is just so cute!

    ReplyDelete
  10. That's absolutely amazing - LOVE the comparison between Leo and the holy ikon. Leo truly IS an ikon of Christ! God bless you.

    ReplyDelete

Post a Comment

Popular posts from this blog

Pharmaceutical Fallout

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. He was seen by his neuro within the hour, and after some bullying and grilling from yours truly, the action plan was det…

Not Your Average Special

Leo. This kid. Honestly? Life with the lion can be quantified in two parts: into a simple 60/40 equation. The 40 being the happy normal parent feelings, and the 60 being sheer exhaustion, confusion, worry, and what-the-hell-is-it-now feelings.  All normal right? Just another day in parent land. Wrong. I have always been an advocate for down-playing the special neediness of special needs. Yeah, yeah we all think we are special in our own unique hardships, get over it. We all have crap in our lives to deal with. But I might be starting to change my outlook.  Just a bit. Case in point: Leo and consequently me and everyone else who lives with him, have now been dealing with daily seizures for well over a year. Ok it doesn't sound that bad, when you string the words together and type it out into a sentence; there are way more scary sentences out there like "your child has a terminal brain defect" sentence etc etc. That sounds way more scary than daily seizures. This I know f…

The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side.  I'm thinking now, almost twenty years later, that it may have been part of gra…