Thanks !

[Guest guest]

,

Thanks for the awesome e-mail! After the tears went

away, and I was able to finish it, wow that is why I

am so glad that I am part of this list. I felt like

you were looking at my " mom " life through my eyes!!

Thanks!!! I really needed this!

Tommi

's (13) Chicago, IL.

--- Weaver wrote:

> I read the first line of this paragraph and just

> smiled. A perfect life. Isn't that just what we

> all

> want for our kids? I have to say this though, not

> as

> a parent who has a child who has this condition, but

> as a child who has watched her mother suffer

> incredible guilt over what she sees as her inability

> to provide me a " perfect life " .

>

> I never knew what I missed by not having a perfect

> back. I didn't know that I was " less " perfect than

> my

> brothers and sister. I knew I was different, but I

> didn't know that they didn't have the weird feelings

> in their feet (or the lack of feeling), that they

> didn't hurt when they laid down at the end of a very

> long, active day. I didn't know because my mom

> didn't

> know. The doctors had no idea that anything was

> wrong

> with me.

>

> When my mom and I found out I had SB, she cried.

> She

> has apologized to me so many times for not being

> able

> to grow me perfectly. She says she feels she is at

> fault for my problems, my pain. Please don't ever

> do

> this to your children (not that I think anyone here

> does). I have hurt more in my heart feeling like I

> have caused my mom this pain than I ever have hurt

> in

> my body from this stupid condition.

>

> And as for perfect, my life really is pretty close

> to

> it. I am happy, even though I have pain and some

> other issues. I have a great husband, great

> (awesome)

> kids, a nice life, nice job, and a really good

> handle

> on this crap that I get to deal with because

> something

> went awry when I was developing. My life,

> ironically,

> has turned out to be way more perfect than that of

> my

> siblings, all who have their own demons they deal

> with. I'll take the back issues any day over what

> they face!

>

> I can tell how much you love your daughter, and she

> is

> so very lucky to have you for a mother. I just

> thought I'd let you in on the secret - if you don't

> tell her what she's missing out on, she very well

> might never know.

>

> Thank you for making me smile!

>

> Hugs,

>

>

>

> >. I want her to have a perfect life like

> > every parent does. Then on the other hand if I can

> > avoid putting her little body through this,

> putting

> > her under anesthesia, the drugs, the 'what if's',

> > any complications the surgery itself could cause

> > could be worse than the risk of leaving it alone.

> It

> > just all feels so big, so overwhelming and so hard

> > to think through.

> >

>

> __________________________________________________

>