Chat: Jodi, Deb, Mimi and Jeanie

[Guest guest]

You are all blessed. And I'm so happy to have the opportunity to

know each and every one of you. You are all so special in every

way. Your amazing words and eloquent writings were a perfect

summarization of what we all deal with. I thank each one of you for

touching on a subject that we all deal with. For reasons that only

we can fully explain to ourselves, we continually question

ourselves, GOD, and physicians about why our child must deal with a

rare disorder. But, as each one of you mentioned - we all have each

other - and that's another gift we will all cherish forever.

Thank you ladies and to everyone else here on the listserve for all

your beauty, hope, selfless acts of kindness, and love. Thank you

to all that can share with us your most intimate feelings, yet make

someone else's life better with your intimate words.

Jodi - I'm sorry about not fully understanding your concerns with

Max. I know we have discussed this previously - but, apparently, I

didn't fully understand where you were coming from. Now I do. I'm

sorry you have to be the first one. But, isn't being first

amazing? I mean - look at all the change and heartfelt love, and

amazing information you have provided to SO many people here. You

remind me of my mother - she's very humble and doesn't even realize

sometimes she is doing good to another until someone reminds her.

You have done so much good - and you were " chosen " to be first -

because YOU alone can handle it. But, in the meantime - know that

we are ALL here for you. We may not have the answers, but we

certainly have hugs, help and kindness to give to you when you need

it. Remember that.

Deb - you too are amazing. You may be the brunt of a funny topic

here and there - but, where would we be - honestly, if we didn't

have you to enjoy with a little humor? You too have such a great

clear sense of understanding of things and are so insightful that

you make all of us cope with our issues just that much better. You

make me laugh so much. I look forward to reading your posts all the

time to see what you plan to say next.

Mimi, Jeanie and everyone on the listserve - we are so fortunate to

have you all. This is one beautiful, courageous family. And as

many of us have said in the past - we are all wonderful parents - we

have each other and we will all find peace in knowing that we can

count on each other to get us through the issues that we will face

with our absolutely adorable children.

Happy Holidays Everyone.

- H