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| Tamsen recording her track. |
We wrote and recorded a song for Kenan, a tribute, not only
to him but also to big sister, Tamsen. After all, so much of why we had Kenan
was for her. There is nothing like the sibling bond, that special connection that
gives perspective and witness to everything that is our upbringing. Tamsen was
three when Kenan was diagnosed with Krabbe Leukodystrophy. Although she has the
memory of an elephant, there is no way to know what she will ultimately retain
from her time with her brother. You wish you could bestow on her the concept of
“relishing these moments”, but that sense is underdeveloped still and you do
not want to create a void where there need not be one. Tamsen simply “is” with
Kenan and that is the beauty she brings to our dynamic. The song and her
contribution to it will remain as testimony to their mutual affection and love. In time, she will also understand the way she helped me. That I could give them both this gift is
monumental.
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| Kenan's rattle toy was played as percussion. |
On two separate occasions, validation was given to me: One
afternoon, when Tamsen and I were singing his song, Kenan had a break through
moment in his abilities and was able to make his laugh sound for us. Similarly,
just this past week, as I was playing the recording for him, Kenan tried to
sing. He opened his mouth and made sounds I had never heard before. These are
the ultimate moments, when the exchange of gifts between parent and child
change who you are.
I want to take a moment to thank our music therapist, Rachel
Epley. Occasionally, someone enters your life and you know everything that led
up to this point brought you two together. Without her, “Kenan” would not be.
Thank you also to our sound engineer, Victor Sanders of Lakeside Media, who
donated his studio, time, and artistic insight.
Lyrics and Melody: Natasha Spencer
Vocals: Natasha Spencer, Tamsen Witczak, Rachel Epley
Music: Rachel Epley, Music Therapist, Horizon Hospice and
Palliative Care
Sound Engineer: Victor Sanders, Lakeside Media
Kenan lyrics
Asking too much of the words
Cause I’m missing my tune
All I really want to do
Is say “I love you”
Kenan, Kenan
Feeling backed up in a corner
Stuck on warped speed
I’m going to get us out
Fight, kick and scream for you
Kenan, Kenan
Your ten little fingers
Ten perfect toes
Not enough to take us
Where we thought we’d always go
Kenan, Kenan
This is too much
It’s not enough
Your sister marches in
Drops to her knees
Looking for that special spot
To kiss and squeeze
Kenan, Kenan
I open up the window
Looking for a breeze
She’s got you head-to-toe in stickers
Like flowers in the spring
Kenan, Kenan
Your sister takes me away from you
Then leads me right back to you again
It’s in the simple way she loves you
This is too much
It’s not enough
This is too much
It’s not enough
Kisses, Kisses
Kenan, Kenan
We love you
Kenan, Kenan
Our Keenster
Little Keenster
My Keeny, Zuchini
Our Little Monkey
Our little boy
My Little boy
What a wonderful song!
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