“Wake Me Up” by Avicii

Day 122 (17 weeks, 2 days)

"Wake Me Up" by Avicii
Feeling my way through the darkness
Guided by a beating heart
I can't tell where the journey will end
But I know where to start
They tell me I'm too young to understand
They say I'm caught up in a dream
Well life will pass me by if I don't open up my eyes
Well that's fine by me
So wake me up when it's all over
When I'm wiser and I'm older
All this time I was finding myself
And I didn't know I was lost
Ethan has always been a fan of music, and especially in recent years of Top 40 tunes. He’d turn the radio on in our car to hear the latest hits, carry his music with him on his iTouch, and listen to his favorite songs before going to sleep. While saying our goodnights to him each night, Scott and I would often dance around Ethan's room, “raising the roof” until he’d threaten to turn off his music. While listening to the radio from time to time in these last few months, it seems that one song in particular kept coming up each time I would get in the car. The opening verse and chorus are written above. Initially I connected with the song for its catchy, upbeat tempo, and once I stopped to really listen to the lyrics I felt it was meant for Ethan.
Last week was tremendous for Ethan. It seems that some of his emotional areas are waking up as we enjoyed many moments of laughter and smiles, some periods of frowns and even his first tears. While not always purposeful or directed at anything in particular, we were thrilled to see and hear these glimmers of personality. Earlier in the week while in Physical Therapy, his therapist was working on his upper leg and while she was engaging his quadriceps muscles by "gently" tapping them, Ethan lifted his lower leg up into the air! On subsequent days, Ethan began to lift his leg and touch his ankle to the bed on command. AMAZING PROGRESS!!!
The upcoming week brings us back to the push/pull sensation that we wrote about weeks ago as we emotionally prepare for Ethan’s surgery on Wednesday. We enter this week with a lot of anticipation, anxiety, apprehension and adrenaline as we recognize the possibilities the Baclofen Pump might afford Ethan in his continuing journey. Please keep Ethan in your prayers!
Staying Strong,
Alexia and Scott
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