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An Adirondack Sunset

We just got back from our annual trip up to Eagle Craig camp in the Adirondacks. (FYI we didn't run into any escaped jailbirds, as they were caught a couple days before we left.)

Can you remember Leo almost four years ago visiting camp after his big head surgery?

Whoa check out that swollen noggin!

He spent most of his time in his blue special needs chair which he needed to support his head and body. We hauled that thing across the lake in a canoe. We hauled it everywhere. Because Leo couldn't move, much less sit up on his own. Don't get me wrong, I was grateful for the blue seat. It provided comfort and security for Leo and time off for my tired arms., after almost five amazing years of lion boy power, check out the his new blue ride.

I find myself forgetting ALL THE TIME about Leo's handicaps: past and present. Is that normal?

I suppose there is nothing normal about our parenting journey with Leo.

He is the sweetest, loudest, bratty, huggable, funny, exasperating, and astounding kid. He will be five next month and I can't believe it because in many ways he has had an extended sojourn in baby-land. When I read his IEP (Individual Education Plan from school) a couple weeks ago, it is clear that he is developmentally delayed. He is a toddler in a five year old body. I've gone through not one year of the terrible two's, but four. Honestly, it is exhausting as much if not more than it is exhilarating most of the time. It's awesome what he can learn, but there is a definite emotional drain that takes its toll on me. Napping on the dock in the sun always helps, but what to do when the dock's not there and it's raining?

Believe it or not, it helps me to remember the hard times in those moments. It helps to remember how far he's come. That every moment, even when he is melting down, yanking on me for attention every single second of the day, between all the endless demands, needs and worries - it helps to remember the beginning. 
The memory of the sunrise of Leo's life with us has been softened by time; the harsh heat and burn diluted, leaving instead the wonder of a new day. But it all hasn't been erased: these past five years most of my sunrises have carried an element of dread laced with mild anxiety. This cocktail has been present with me for so long I've learned to not pay it much attention, and of course there are many sunrises I greet with joy, especially if they take place at camp!

Still, I like sunsets better...

The lion boy isn't perfect.
Most of us don't have perfect kids...or days, or lives either, but I'm sure everyone of us has experienced a perfect sunset. A closing to a day when you can be sure that from one sunset to the next, you've done the best you could with what you've been given. That is enough to earn the title "perfect."

I hope all our little Lion Boy fans are having a "perfect" summer so far with many beautiful sunsets! Love to all from Leo, or as he says: "Wanna hugs?"


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