Dear Amy:
I am not able to tell you of an experience that I know of in which you are
going through. What I can tell you is that you are not alone and I would
encourage you to continue to seek out others. You are definitely in a great
place for support, to answer questions and share experiences. I do however have
a friend who was on GH as a small child, he is healthy (relatively speaking, a
weight issue which he could have had without this issue), he is wealthy,
successful, happy, in a relationship and does everything that anyone else would.
I hear some guilt coming from you. Your statements about pregnancy and
wanting her to have a "normal" life as well as on meds for the rest of her life
lead me to believe that you maybe experiencing some guilt. You did nothing to
cause this in your beautiful little girl. One thing that maybe be very difficult
to see is that medicine is progressing and the more of a voice that we have, the
more we are heard and the more attention is brought to our various conditions.
Medicine is improving on a daily bases so just because the treatment at this
moment is med's for life does not mean that is what it is going to be 7 years
from now or even 20 years from now. I would guess GH will not be a life thing
but I cannot say. Another thing to consider is that she is growing up with this.
It is a blessing that you received a proper diagnoses this early on. She will
not know any different. You do so this is hard on you but she will not. This
will be 'normal' for her. I have seen some pretty amazing kids with conditions
that would knock any adult down and they keep on going.
I would highly suggest that you take care of yourself, make sure you are
resting, eating and getting support. You just had this little one which is hard
enough on a women not to mention feeling alone, not knowing anyone that is going
through this as well the stress we go through when we have our kids. You need to
take care of yourself in order to best care for her. She will only do as well as
you do with her condition.
You are so not alone even though you feel like you are. I wish I could
spend some face to face time with you. Just talking with people like us who live
with Pit issues will help you. I wonder how long I have had this condition yet I
can remember a time that was "normal." I know that you will meet up with someone
who is in a very similar situation and I know that everyone who reads your post
will attempt to offer you support and find someone like you.
I wish you the very best and send you lots of love, hugs and prayers. You
have a diagnosis and for a lot of us that was 1/2 the battle-:) I would also
encourage you to ask your specialist if they can refer you to other families.
That may help too-:)
HUGS,
Tina
