....LIKE A ROLLER COASTER

People ask me, "How do you do it?", meaning raising a special needs
child. I tell them "it's not as bad as it may seem, it's like riding a
roller coaster. You get on the ride the day they are born, and you just
hang on tight, and try not to fall off on the next turn." We can't pick
which way we want the next turn to go, we go where it takes us. I think
that describes for me what raising this beautiful child has been like so
for.

I decided long ago that what ever she needed I would find a way to
provide. I would put her needs ahead of financial concerns, even if it
meant we went broke. I did, and we did, went broke I mean. I would do it
all the again, I still do.

I went to the Moebius Syndrome conference in New York when Lily was
only 20 months old. I learned at that conference of the emotional
difficulty it would be for Lily to grow up with a rare disorder. A
disorder know one would understand. I had the opportunity to sit in on
an adult panel session that allowed us to ask them questions about what
it was like to grow up with Moebius Syndrome. They all spoke of the
depression they felt at a young age because they felt so all alone. They
were the only ones they knew who had Moebius. They spoke of the
emotional abuse they suffered at the hands of teasing children. It made
me cry.

This has been my greatest concern since the day Lily was diagnosed with
Moebius Sequence. How much abuse would other children put her through?
How would she handle it? How can I help give her the skills to handle
it?

Last week Lily and I were trying to communicate, I was having a little
difficulty understanding part of what she was saying to me. She got
frustrated, and angry with me. She paused, she sighed, she growled at
me, "OH, I hate God, because God gave me Moebius Syndrome, and you can't
understand me." Lily is only 5 years old, I guess I wasn't prepared for
that statement when she made it. I didn't think I would hear that so
young. Although, I doubt I would be prepared to hear it no matter what
her age.

Later that same day she voiced again her dismay at having Moebius
Syndrome. In her words she hated Moebius, "...because no one at school
has Moebius Syndrome, and no one at day care has Moebius Syndrome, and
no one at my old school had Moebius Syndrome, and no one at my old day
care had Moebius Syndrome, just ME Momma, why do I have to have Moebius
Syndrome?"

It broke my heart to know she is already so understanding of how rare
she is.

We were shopping at the mall on Saturday and she saw a little girl, a
little younger than herself. She went up to her and said hi, she looked
up at me and said, "does she have Moebius Syndrome, Momma?"

I don't know if I have all the skills I need to help her through all the
trying times ahead. But I do know that there are many others out there
who are willing to help me and have given me some very important,
helpful, supportive advise, and I am so thankful to be able to connect
with them when I need them. I do put considerable time and effort into
networking with others who have Moebius all over the world. Thank you
for being here for all of us.

Sincerely supportive,

Phyllis Richards (Lily's Mom)