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Saturday, November 24, 2012

Halloween Part II

Even Better: Halloween Candy 

Every child should have the flavorful experience of artificial lime that only Skittles can deliver. Kenan's speech and swallow therapist had the brilliant idea of dissolving them in water. Lime turned out to be his favorite. The others, when dissolved, lost what made them distinct and only tasted "sweet". 

Halloween Part I

Kenan had his first date and with the stunning Lauren from Canada. Gabriel, our friend from Mexico, hosted a virtual Halloween Party for all of the kids. Below is a link to the parade of costumes.  I am often grateful for Facebook but even more so at times like this when we gather as a community, strengthen our bond to one another and satisfy some of the hopes and dreams we have for our children. Thank you to Gabriel's mom, Mayte, for getting us there.

October 27th

Today's morning coffee: We have dragon, tiger and dolphin mom; how about Hulk Mom? Kenan spent part of his morning struggling to exhale: He'd take a breathe but the neurological signal to let it out was significantly delayed. Once he could, he'd cry and then it would start again. You do what you can to try to break through it and if all else fails and he is in too much duress there is morphine as a comfort med. My objective is to broaden the understanding of what Kenan and the kids of leukodystrophies are up against on a daily basis.

October 23rd

This afternoon we took in "100 Electric Signs", a video projection by Neal Vandenbergh at the Hyde Park Art Center. Kenan suffered optic atrophy at the beginning of this year: he can no longer track or focus and for a while had a startle response when approached. Like most with severe vision impairment, his hearing has compensated and he now is very good at following movement through sound. K's excited response to this silent piece (gratefully) confirms that he is still able to see something when in high contrast environments, similar to his reaction at night when a light it turned on. The annual Lincoln Park Zoo lights will take on new meaning this holiday season.

October 22nd

Kenan nestled amongst the prairie dunes; a pretty fall picture from this morning's walk along the south side lakefront- our attempt to get every last run, walk and trip to the playground in before the weather turns.

October 16th

More fun today running, rolling and kicking in the fall leaves. (All verbs apply to our K-man.)

October 14th

Two seconds later we got caught in a downpour but he loved it while it lasted.

October 12th

The Gradual Education of Tamsen

Many of you ask how Tamsen (just 4 yrs) is and how she is handling things with Kenan. Here is part of a recent conversation. It is an ongoing dialogue we’ve had since his diagnosis. This is the first time we talked about Krabbe leading to death. 

Tamsen (T): Why are Kenan’s legs kicking?

Me (M): It’s called “dystonia”. It’s from the Krabbe.

T: Why?

M: My explanation becomes too technical and I loose her.

A few minutes later…

T: Remember when we went to Hunter’s Hope and met the other Krabbe Families?

M: Yes.

Five minutes go by. She pulls out a rubber rat from her bin of toys.

T: Sam gave this to me. He was at Hunter’s Hope.

M: Yes. He had a sister with Krabbe.

T: But she wasn’t there.

M: That’s right.

T: Why?

M: She died.

T: Why?

M: From Krabbe.

T: Why?

M: Because that is what happens to kids with Krabbe. Their bodies stop breathing.

T: But Michael has Krabbe and he can walk. (Michael Wilson, Marshall’s little brother.)

M: Yes, that’s because he had a transplant. 

M: And Bella’s little sister, Jacque, also died from Krabbe.

T: Aw, that’s sad...but Bella is still a big sister...her baby Jacque is in her heart...and Bella is in my heart... and Michael and Sam are in my heart.

T: I made the enzyme. Kenan did not. 

M: That’s right. 

T: Mommy, want to play face painting?

At some point she will make the connection between Kenan and the loss of other siblings. My hope is that it is in her time and not that of the disease. An immediate sense of relief comes from knowing that Kenan is in her heart (something she says to each of us regularly), that she will continue to see herself as his big sister when he is gone and that she feels the same connectedness with the Krabbe community that we do. 

Thank you to Hunter’s Hope for also helping us care for our healthy child.

11/24/12: In the conversations to follow with Tamsen I've learned, from her perspective, that you are either alive with Krabbe or dead with Krabbe. She does not understand that there is a process to dying. She was 2.5 years when her was born and just 3 when he was diagnosed. So far, the symptoms that have taken over Kenan have all happened gradually lacking crisis to signal a critical turning point. 

October 11th

A year ago today Kenan was diagnosed. In spite of my acceptance, there is grappling. Today owns me.

October 3rd

And another Mozart lover is born. No other musician elicits this type of reaction lasting the duration of the CD. In this photo he is listening to Symphony 40 in G minor.

September 28th

Kenan saving the world from the out of control, giant, atomic ball today in physical therapy.  flipped the photo on its side out of my need for him to have more "boy fun".