Re: [adultmito] Audrey update

[Guest guest]

Dear Kathy;

I haven't yet written to let you know that I look forward to your posts because

they are all about pure and unselfish love! You and your family have endeared

yourselves to the Mito community ... and, my friend, you have done much to

educate us, whether you are aware that you have done so or not!

Your descriptions and details of care and reactions to care have been helpful

to other moms facing the same fear. Your sadness and bravery have been a

model for our reaction to our fear. For we adults who live with the fear

for ourselves, you have given us hope because we see our families from the

other side!

Thank you, grandma and mom and dad and most of all Audrey for your sharing.

It is YOU who have our respect. We feel your fear, we feel your pain and

we feel your frustration. This post today has a new feel to it, Kathy. It

is a feeling of acceptance. Like Kubler Ross in her book "On

Death and Dying" says about the stages in the process of the end of life,

your new letter is about acceptance.

While acceptance is difficult to accept, please know that we will be there

for you as Audrey is freed from earthly pain.

Jean .... who looks at life from a grandmother's point of view too!

Dklboone@... wrote:

Hello once again,

I have been scanning all of the posts but have not had time to respond

as I am still spending as much time as I can with Amie and Audrey.

Audrey is still up and down. Her fever has been down for a couple

of days now but she started back with the diarrhea. So, back on pedialyte

for at least 12 hours after the diarrhea stops. She still manages to give

us a few weak smiles everyday and we cherish every one of them. This past

Sunday, a nurse, Darcy, from Cardinal Glennon Children's Hospital where Audrey

has been a patient more times than I want to count came down to Amie's and

took some pictures of Audrey, the other kids and Amie and Doyle. She does

all of her work in black and white and she does this as a free thing for

children that are terminal (how I hate that word). Anyway, we should be

getting the proofs soon and when we get the ones we get to keep I am looking

forward to posting for all to see.

I have so enjoyed seeing the pictures of all of your beautiful children.

They help to brighten my day.

For now, Audrey is holding on and continues to amaze the doctors.

I really don't think when they sent her home from the hospital this last

time that she would last more than a week. Even the hospice nurse said she

was amazed. She is a very strong little girl like her mommy. Amie is hanging

in there as well and she amazes me at her strength and grace as she faces

this horrible demon.

Please know you are all thought of daily, I just don't have the energy

at the end of the day to answer the emails as I should. One day I hope to

help you all as you have helped us. You are an amazing group of people and

you have my greatest respect.

Thoughtfully,

Kathy, grandma to Audrey, 30 mos