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.
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.
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