Skip to main content

The Year Ends With Loons.

All is well at the homestead.

Leo's head, under his fashionable nylon hat (come on folks I see a new trend here...) is slowly getting smaller. The fluid has shifted from swelling his whole head up, to just hanging out in a pocket above his right ear. It's probably connected to the canal line formed by his shunt tubing. I've stopped worrying about it, and in a burst of energy we took the whole outfit on the road and up to our family camp in the Adirondacks. It was pure bliss after a summer spent in the recycled air of the hospital. Ok it wasn't the whole summer, but it sure feels like it.

Our summer fun is just starting, but today I spotted some red in the green landscape around our house. Fall is around the corner with winter lurking in the shadows. Although our little log cabin is snug and warm, I still pine for the glorious days of summer. It's just too bad that we've had a run of particularly traumatic summer experiences. Perhaps I should be grateful for the quiet stillness of winter. But before I can really and truly bid goodbye to the summer season, there is one more milestone yet to passed. Our children's birthdays. When the Leo bombshell was dropped on his this time last year, we never thought that we would make it to this point. My c-section was scheduled on the 26th. The 26th of August. Nika's birthday. I was livid and made them change the date. There was no way that I was going to mar my daughter's day of birth with her brother's birth and consecutive death. At least that was the place where we were last year. But Leo, being Leo, was born when he felt it was time, on the 23rd, just an hour into it. Thank goodness for that, because the 22nd is our wedding anniversary. This way he gets a whole day to himself. It's like that week in August is a catalyst in time for our little family. All the important changes in our life began in that week. If only we knew as we took our first steps together in the church as husband and wife, the twists and turns that our life together would take.

Sitting on the dock, watching the stars come into the sky, as suddenly and gently as a baby being birthed, and listening to the mournful and yet joyful calls of the loons, I know that this is it. Even if somehow we knew what was in store; the pain and misery that we would go through, the fear that we would experience, wouldn't change our course, since we would also see how our imperfect love for each other and our children, through God's grace and through his perfect love, would transform and heal our hurts. That being said, Justin and I still had to fast-forward a movie last night that had scene where a doc was trying to save a little boy's life by doing an emergency surgery. There's still some more healing that needs to be done I guess!

Keep a lookout next week for a video that yours truly will hopefully have finished putting together of little Leo man's first year of trials and triumphs to celebrate his big ONE year!
Love to you all, and here are some shots from our retreat with the loons and fishes.


  1. Since 'loon' has another meaning as well, I laughed out loud when reading the sentence 'listening to the mournful and yet joyful calls of the loons...'. Ha!

    On a more serious note though: thank you for posting. That last photo is pure brilliance. :} Love to you all.

  2. What a year it has been! Beautiful Leo sitting on the dock. Thank you so much for sharing your journey this past year. We love you so much and we'll see you when we get back up north!

    --LeeAnn, Sandy, and Peter

  3. Thank you for your continual updates on Leo, we continue to pray for him and you guys, Mom & Dad. May you bask in our Savior's love the rest of this summer.

    The Jones'


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…