Skip to main content

Our journal grows...

and so does our baby boy.  I was told this week not to give up on the blog.  It will serve as a documentation of how much our lives have changed with Leo.  Usually change is subtle.  By the time a season has passed, like this sleepy Fall, I cannot remember what I did on those many golden days.  Winter is here and I am in survival mode and wondering what it felt like to be free, warm, less heavy hearted.  But really I was on the edge for most of it.  Sometimes I would like to let people crawl into my space just to feel what it's like to never feel at peace about your son (or daughter).  Peace comes in degrees.  Nothing is taken lightly.  The fact that Leo is incredibly "alive", meaning, he feels this world, breaths it, fights it, and loves it, is a miracle.  Lately he has taken over our attention from our daughter who demands attention all the time (because she is so cute) but we can't take our eyes of our little boy wonder.  His eyes are amazing.  He has a bit of an Asian cut to his eyes and they have a truly unique shape, not at all "DuMoulin" we've been saying but perhaps more Anna's side, which includes not a little Mongolian!  So our little warrior is drawing us out from our scared hobbit holes where we shudder to think that he won't live the year out and all that.  I've been realizing more and more that this is bullocks.  He is already developed at the same rate as a three month old and except for his head control he is no different than a "normal" baby his age.  Today the geneticists told us it would be worth having another scan of his head and have the results sent off to a "specialist".  Supposedly he is the guru of pediatric neurology and he may be able to tell us, based on the brain structure, what caused the stroke or the vascular episode.  He may also be able to better assess Leo's brain and determine what he has and doesn't have up there.  I think we will seek "specialist", why not?  In the mean time, life goes on.  On my good days I imagine Leo talking and playing sports one day.  On my bad days, I remember the pulverizing fears of finding out in the hospital just what was in store for us and Leo, and not ever wanting to go back there.  Thank God, it's over but so much is in store, in the positive sense, I don't want to miss a minute of it.
Peace
 

Comments

  1. JenDecember 7, 2010 at 10:11 PM

    Here via Lonnie's Facebook post... Leo is adorable. I look forward to reading future updates.

    ReplyDelete
  2. Nat FishDecember 8, 2010 at 8:19 AM

    Justin,
    I have just visited your blog, and am sitting here absolutely amazed at the miracle of your little guy. I am sure that your amazing family network is there for you and your family through this episode of life, but I wanted to let you know that we are thinking of you and wishing Leo all the best..
    -Nat, Abby, Avery, and Isabelle Fish

    ReplyDelete
  3. Matushka AnnaDecember 8, 2010 at 9:18 AM

    Thank you for the update. I appreciate the time you take to put all of this down.

    Continuing in prayer.

    ReplyDelete
  4. Michelle M.December 8, 2010 at 10:10 AM

    The photo of Leo in the header is adorable! He does have beautiful eyes. I hope the appointment with the specialist will shed some light on Leo's condition. I'm so glad to hear that he is developing well. We will continue to pray!

    ReplyDelete
  5. AnonymousDecember 9, 2010 at 9:40 PM

    i have been following your blog since a few days after Leo's arrival in this world.....and I and my friends at ISP continue to pray for him and for Nika and for you. May God give you the grace to rejoice in each day as it comes.

    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...
34 comments
Read more

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...
2 comments
Read more

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...
Post a Comment
Read more