Ice Cream Sundae

We celebrated Tamsen's 4th Birthday with an ice cream social. This is Kenan's version of a hot fudge sundae: partially melted ice cream, thinned hot fudge and maraschino cherry juice, 8/26/12.

We Love Summer Series

We Lover Summer #9: Millennium Park -Chicago, 8/18/12. 

Even before having kids I admired Jaume Plensa's Crown Fountain for the immediate access it offers special needs children. In addition, the Air  Show was taking place up above. Kenan took it all in with his usual alertness.

We Love Summer Series

We Love Summer #8:  Hot Sun, Cool Air, Lakeside Napping, 8/11/12.

New Sharon, Maine

                            

Kenan makes his float debut on the East Coast (far left). Thank you to Jamie Davis and her beautiful daughter Addilyn (second from right, Krabbe diagnosed at 6 months, now 11-months-old) for raising awareness and advocating for expanded new born screening in Maine.

We Love Summer Series

            We Love Summer #7: The Hunter's Hope Family Symposium

After a long day of informative lectures on new born screening and Krabbe research, Kenan and I found a babbling brook to listen to on the grounds of the Holiday Valley Resort, NY. Although he lost his vision at 12 months, this photo distinctly portrays his receptive listening abilities and how attuned he is to his environment. 

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. 

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

Listen to our "Kenan" single.

Download a copy as part of our fundraising.

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

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!

We Love Summer Series

We Love Summer #5: Relaxing to the fragrance and sounds of

Grandma and Grandpa Spencer's backyard in Cleveland, Ohio.

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.

We Love Summer Series

We Love Summer #3: Diving into a Mangolicious Popsicle, just in time for tooth #5 and #6 to make their appearance along with molar #1 presenting. When he raises his arm up as pictured, it means, "don't stop!". The sound of motorcycles revving down the street in the background, another favorite, not pictured. 

We Love Summer Series

We Love Summer #2: Watermelon! 

We've expanded Kenan's tastings to fresh fruit and vegetables so that his lips, tongue, teeth and face get to experience different temperatures and textures. Plus, it just tastes better! (This is highly controlled to prevent overwhelming and choking him.)

We Love Summer Series

We Love Summer #1: Popping Bubbles With Our Nose

Meet "The Grasshopper"

*

Our girl is off for summer so Kenan is getting alot more "Tamsen Time". Here we were yesterday morning en route to the playground in Kenan's brand new, suped up, set of wheels: aka Kid Kart. *(We are working on an official nickname- all are welcome to make suggestions.) It is a custom fit, adaptive seat that allows his body to be in proper position: head, spine, hips, legs and feet in alignment. There are many issues that need to be considered falling outside of the direct symptoms of Krabbe: scoliosis, hip dysplasia, prolapsed vital organs to name a few. For instance, because Kenan can't support his own body and never made it to weight bearing, his hips are migrating out of their sockets and if not addressed, can dislocate. Special leg braces are being fabricated, but until then, we put his legs in "froggy position" when sleeping to help push them back. It can be overwhelming, all of the forces against him, both in the cause and prevention of morbidity. Ironically, an entire anti-aging industry has turned gravity into our enemy. We take for granted how absolutely crucial it is to the human body and our existence. The next time I start to complain about a wrinkle, I'll stop. 


*Thank you 4.5 year old Riley of NY for giving us the nickname. From one boy to another, he was very thoughtful to consider a green animal that could both fly and hop.

With curtain drawn

The shower sounds its rain

My tears fall

Then are pulled down the drain

My son will not die

No, not today.