IS THERE A CONNECTION?
Isabel was born the fifth child into an existing family
of four boys. After delivering four healthy babies, it was quite a shock
to be the mother of a little girl with such problems. Like most people, the
thought of having a child with special needs never crossed my mind all during
the pregnancy.
After she was born, it took me about a week to accept
the fact that my daughter had special needs, and probably always would. In
the beginning, it felt as if she had died. The little girl I had dreamed
of, with pigtails and barbie dolls couldn't gag or even swallow her own
secretions. It is a life filled with suctioning, chest PT, hospitalizations
and home nursing!
Over the past 14 months, I have become, like all
the Moebius parents that I have met, Isabel's only voice. I am her
strongest advocate. All doctors, nurses, and therapists do not make a move
with her unless I agree. I research everything she is going through, from
oral stim to pulmonary inhalers. I try my best to stay on top of it
all. Now that I look back and I am proud of what I have done. She is
getting stronger everyday and I felt that for what ever reason God sent Isabel
to me, I was sure he was looking down at me and very proud of how strong
I have been through all of this. I've done well. I'm getting over the
hurdles, life is getting better..........so I thought.
So, what do you do when you find out just 1 year after
your daughter was born that your oldest child has Tourette's Syndrome? Two
months after that, you find out that your middle child has OCD and should
be watched for the onset of Tourettes? How do I handle this. I am drained
from Isabel.
Tourette's isn't just about cursing either. Along with
it my oldest son has OCD, ADHD and defiant behaviors. Why do I have a family
like this. IS THERE A CONNECTION?
This question seems to be addressed quite a bit in the
e-mail support group, but it seems almost crazy to think there is a connection
between Moebius, a cranial nerve disorder and chemical imbalances.Looking
at my children and all the other Moebius parents with siblings with the same
problems it seems almost certain that there has to be a connection somewhere.
Will we ever know? I hope so, I could certainly use some
answers. Just some new information: the Tourettes foundation researchers
think they have found part of a gene that could be connected to Tourettes.
If this is true, considering most individuals with the syndromes have other
problems, this could possibly help lead to an answer for us Moebius
parents. Sadly though, the rarer the syndrome, the less funding, the less
research. I almost resent the Touretts foundation for being as big as they
are. I am jealous for Isabel.
I hope this is food for thought for some of you out there
and I would love to hear opinions. Does anyone else have a child with Moebius
and is dealing with Tourettes in the family also? I'd love to hear from
you.
Happy holidays!
Suzanne Silverman
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