Re: last pictures of (he doesn't look like he's so sick)

[Guest guest]

Deb,

these pictures took my breath away...he was obviously a happy kid! The second picture of your two boys together was wonderful. You also put it very well when you said people don't think our kids look "sick enough" to be affected by a fatal disorder. I can't tell you how many times i've heard the "she'll be just fine" story about Lexi. And while i pray they are right, i know that looks can certainly be deceiving (especially when she is fighting for breath during one of her desat moments).

ruth

mom to Mitch (nearly 9, back in tae kwon do) and Lexi (nearly 6, with her first school recital this week)--both mito affected, and neither of whom look "sick"

[Guest guest]

Deb,

I have sent silent hugs and prayers and thoughts to you.

I am deeply touched by your writing and the beautiful pictures of .

Hugs,

Marie (mito mom to 8)

last pictures of (he doesn't look like he's so sick)

Hi there...I have found that most people, even friends expect the kids to look a certain way when they are sick. I think most people think about the shows on the St Jude kids and expect that...we found out this summer that our pastoral staff never believed he was really dying b/c he didn't look sick enough (and they KNEW he was going to be healed). These were taken about a week before he died...and he didn't look any different the day before he went.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comPlease contact mito-owner with any problems or questions.

[Guest guest]

Deb,

I have sent silent hugs and prayers and thoughts to you.

I am deeply touched by your writing and the beautiful pictures of .

Hugs,

Marie (mito mom to 8)

last pictures of (he doesn't look like he's so sick)

Hi there...I have found that most people, even friends expect the kids to look a certain way when they are sick. I think most people think about the shows on the St Jude kids and expect that...we found out this summer that our pastoral staff never believed he was really dying b/c he didn't look sick enough (and they KNEW he was going to be healed). These were taken about a week before he died...and he didn't look any different the day before he went.

deb...mom to three great adopted kids... (07.04.96-05.26.03) with Mitochondrial Disease, Gaige age 5 with High Functioning Autism & dysfluency and Bliss age 2 with very very mild Cerebral Palsy.www.HeartLiftersGallery.comPlease contact mito-owner with any problems or questions.