Janay Re: Re: Rasha's MRI results-Not good...

June 3, 2007

Janay-

I think the sorrow and grief you felt is completely natural. It is a Buddhist

tenet that attachment is the source of suffering. I have found this to be true

for me. In similar situations of diagnosis with I have discovered I had

attachments to or expectations of certain outcomes, especially when the outcomes

did not match my expectations. I do feel though that my grief was for the

expectation that was unmet, for the attachment to something that never really

was. I did not grieve for me or my child. For truly, my child was the same

wholeness before the diagnosis as after, as was I, as were we.

I know it is not that one cannot see the good in other outcomes. It is that one

must give oneself the care and time to grieve specifically the outcome that was

denied at that moment.

To be cleared, the grief and suffering must be allowed to be fully experienced

(I have had many an unexpressed grief well up at a later date).

Does that make any sense?

I think you are doing beautifully ~

in love,

Yuka

June 4, 2007

Yuka,

I have taken you as my spiritual guide! You have such amazing ways of

imparting bits of wisdom‹long-sought-for and long-fought-for‹that are so

applicable to many situations. Thank you always, for sharing them.

pam

>

> Janay-

>

> I think the sorrow and grief you felt is completely natural. It is a Buddhist

> tenet that attachment is the source of suffering. I have found this to be

> true for me. In similar situations of diagnosis with I have discovered

> I had attachments to or expectations of certain outcomes, especially when the

> outcomes did not match my expectations. I do feel though that my grief was

> for the expectation that was unmet, for the attachment to something that never

> really was. I did not grieve for me or my child. For truly, my child was the

> same wholeness before the diagnosis as after, as was I, as were we.

>

> I know it is not that one cannot see the good in other outcomes. It is that

> one must give oneself the care and time to grieve specifically the outcome

> that was denied at that moment.

> To be cleared, the grief and suffering must be allowed to be fully experienced

> (I have had many an unexpressed grief well up at a later date).

>

> Does that make any sense?

>

> I think you are doing beautifully ~

>

> in love,

>

> Yuka

>

June 4, 2007

Janay and Yuka-

This is profound for us to understand, really understand, that our grief is

about us - not our kids. How critical is it for our kids to know that!?

Imagine growing up knowing that your birth brought about grief! Horrific.

But knowing that the grief was all about Mom and Dad's " stuff " and not about

you - that could help. I think being able to explain that to outsiders can

help them understand how we can be so happy and how our children can be the

gifts and joy that they are while we appear, to an outsider, to be living

such a sad existence.

As you said Janay - Rasha's hearing is the same as it's always been. The

only thing that changed is your awareness of what that is. Another good

thought for us to remember each time we get bad news - nothing has really

changed - just our knowledge of it. If we had our choice, wouldn't we want

to have the picture revealed in stages to give us time to rejoice in and/or

get to know each portion before the next? Imagine the entire picture being

shown in it's entirety -- would we not be overwhelmed? How could we begin

to take it all in? How would we prioritize and focus?

Janay - this is a good topic and insight for the Discussion Group at ISD's

Parent-Infant Institute.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

jkhayes95

Sent: Monday, June 04, 2007 7:45 AM

To: CHARGE

Subject: Janay Re: Re: Rasha's MRI results-Not good...

Yuka,

That makes perfect sense. When you really look at this particular

situation, that is exactly the case. Her hearing is no different

today than she was before Friday, or 2 weeks ago when they did the

test or August 2, 2005, when she was born. I think the rub is that

each hope is stripped in stages. I can only say that because this is

the " end of the line " for hoping for a cochlear implant solution.

Having that hope is what really helped me keep whatever sanity I

have left along the way. When she failed the newborn hearing screen,

we couldn't believe it because she always turned her head to see who

was there or see her toy on the side of the crib. Then it was

questionable responses along the way of a similar nature. In the

end, though, it is like you said. I am stripped of my hopes and

dreams. I believe I was stripped of expectations a long time ago-

thank God.

As I process this information (the understanding that it's my

personal junk and not hers), she keeps doing wonderful things to

remind us to keep moving forward. This weekend she stood barely

holding the side of her crib for nearly 3 minutes when my husband

got her to her feet. This coming from the kid who does a somersault

when she tries to sit! She makes it really hard to be sad for long!

Janay

>

> Janay-

>

> I think the sorrow and grief you felt is completely natural. It

is a Buddhist tenet that attachment is the source of suffering. I

have found this to be true for me. In similar situations of

diagnosis with I have discovered I had attachments to or

expectations of certain outcomes, especially when the outcomes did

not match my expectations. I do feel though that my grief was for

the expectation that was unmet, for the attachment to something that

never really was. I did not grieve for me or my child. For truly,

my child was the same wholeness before the diagnosis as after, as

was I, as were we.

>

> I know it is not that one cannot see the good in other outcomes.

It is that one must give oneself the care and time to grieve

specifically the outcome that was denied at that moment.

> To be cleared, the grief and suffering must be allowed to be fully

experienced (I have had many an unexpressed grief well up at a later

date).

>

> Does that make any sense?

>

> I think you are doing beautifully ~

>

> in love,

>

> Yuka

>

June 4, 2007

Janay-

Hope, for me, can be a double edged sword. When hope means to be full of

gratitude for what is today and to be open to yet unseeable miracles in every

moment - then it is a joy. When hope is a way of specifically defining what

will be in an effort to change what is, then it becomes an attachment to

something that cuts me deeply.

passed his newborn hearing test with no documented loss. When was

about a year old I made the decision to start signing to provide him a

vocabulary as he was trached and had no voice. I hesitated to begin, and only

afterwards did I realize that I superstitiously thought that signing meant he

would never talk. The moment I began to sign I untangled that false fearful

connection.

Upon entering special day pre-school. underwent standard hearing screening

through our county and came back with a 90-120db mixed loss in both ears.This

went against my existing framework and my way of understanding how to interpret

's demonstrations of abilities. So he was tested two more times, at his

ENT's office and at the House Ear Clinic. Wouldn't you know it was the exact

same results all three times? )

I held onto hearing as part of an idea of 's wholeness. Bit by bit my idea

of wholeness has been reconstructed. Wholeness, like blessings and heaven on

earth, is not dictated by circumstance or condition. By tearing me completely

down I have been set free to cherish everything there is.

My hope and dream is to bear witness to the constant unfolding of 's

wholeness and person - and I have learned to expect that I will not be able to

predict in manner or notion what the solutions will look like - so rather, I

have learned to focus on living in the question - with gratitude, blessing and a

sense of wonderment and excitement. My greatest blessings have come wrapped in

what seemed like unwanted packages - so I have learned to trust that good will

come of it - even if I cannot imagine how.

In love-

{{{hugs}}}

yuka