Follow Kenan's Story by Email

Monday, July 30, 2012

Dusty Blonde Hair


There are the watershed moments of grief that one expects and then there are those that catch you off guard.

It is an afternoon like so many others. Kenan and I are driving through downtown during lunch hour. We are detoured by road construction from our regular route to pick up Tamsen from school. While stopped at a red light, my eyes skim over the busy cityscape then lock in on a young man waiting on the corner. He is twenty something, attractive, well dressed, with dusty blonde hair. A car pulls up beside him. He smiles and embraces the woman getting out. My mind immediately races into the future - a future for Kenan that will never be. Before me is a mirage of potential and possibility shifting in the sunlight trying to take shape. There will be no culmination of collected moments to answer my questions: What will HE look like? Who will HE be? For a few seconds more I linger on the young man at the corner until the green lights snaps me back into the intersection. I look at Kenan in the rear view mirror. He is awake now in his car seat. No one wants a parent to project onto him what he isn’t and can never be, least of all Kenan. 


Thursday, July 19, 2012

I’m Not a Singer, But I Am a Mom Who Sings


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.

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


Saturday, July 14, 2012

We Love Summer Series

We Love Summer #6: Saturday Morning at 63rd Street Fountain

Tamsen and Kenan have alot of history here, been taking both since they were babies. Tamsen did everything: ran through it, around it, stood over and straddled it. She had a blast! Kenan enjoyed the sound of the fountain, the mist of the forceful water hitting the ground (he let his face get very wet) and putting his toes and legs into it. It was a fun morning!

Monday, July 9, 2012

We Love Summer Series
















We Love Summer #5: Relaxing to the fragrance and sounds of
Grandma and Grandpa Spencer's backyard in Cleveland, Ohio.

Sunday, July 1, 2012

We Love Summer Series














We Love Summer #4: It was a stormy weekend here in Chicago. We took Kenan out to listen to the rain, to feel the mist of it traveling on the wind, and to smell it on the grass and hot pavement.