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Thriving with NF
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Thriving with Neurofibromatosis
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I grew up knowing
about Neurofibromatosis. I knew it affected my older brother.
I also knew that my mother was affected, but we were never to ask
about it. The bumps on my mothers abdomen, were just her
"bumps". Any further discussion, would send my mother into a
downward spiral of depression and guilt, becoming a mother myself, I
now understand the pain and uncertainty my mother faced.
Growing up, we threw a blanket over the NF, and avoided it as much as possible.
But my brother, however couldn't do that. He was diagnosed
with a Optic Glioma at the age of 5. In 1975, doctors didn't know
much about this disease, telling my parents my brother would surely
die before he turned 12 years old. The Drs. treated the tumor with radiation.
Doing this, destroyed my brothers optic nerve, blinding him in
his right eye.
The guilt of NF, has been an unwelcomed part of my mother, her
entire life. Guilt turned to anger, and even to this day, talking
about NF with my mom is impossible.
The way my mom chose to deal with this disorder affecting our family,
made me feel like I had
to hide it too. I was ashamed, scared and guilty.
|It wasn't until 2 yrs ago, when a doctor finally
recognized what was happening to my body.
When my own diagnoses became 'official', I had my children checked.
Even though, I already knew the answer...Three of my children were
given the official NF diagnoses.
I have done quite a bit of soul searching over the last two
years...and made a promise never to hide again. Living
truth of NF is scary...
BUT, I am surrounded by so many people
who love and
support me and it makes dealing with this, a bit
I have six children. Bailey 15, Braden 13, Riley 10, Rachel 8,
and Brooklyn, 3.
and Rachel have NF1
MRI showed several tumors at the back of his brain, and on the base
of his spine. He has frequent and severe headaches, which he
is being medicated for. Along with the tell-tale cafe au laits
spots (birth marks), he also has auxiliary freckling (freckles under
armpit, neck, and groin), learning disabilities, processing
disorders, and ADHD.
MRI showed she has a mass on the left side of the basil gangelia in
her brain. Motor skills and speech will most likely steadily
deteriorate. Rachel has already shown signs of coordination
and motor skills being severely delayed. Vision is also been
know to be affected by this type of mass. Rachel wears glasses
and continues to have issues with a "lazy eye". She deals with
a learning disability, similar to Braden's. Rachel is
currently being seen by a child psychologist to determine skill
level, and a possible diagnoses of bipolar and ADHD.
issues are a lot like mine....Very hard to pinpoint.
Unlike me, however, she has struggled in school since
the very beginning....But never enough to warrent an IEP,
or "special services". We have fought every single
year to get Bailey some extra help in school and always
seem to hit a dead end.
She is a
very bright girl, who just seems to lack the confidence
in herself to show the world just how smart she is. We have been told recently she has a form of Autism
called Aspergers. Further testing and evaluations
are scheduled. We are also dealing with quite
severe depression, and emotional detachment.
hard for me to accept with Bailey....I'm not why it was
harder for her, than the other two kids.....but I just
had a hard time with it. But for Bailey's sake, I
can't hide from this....I have to teach every one of my
kids, that NOTHING should stand in your way of living
Neurofibromatosis, like life itself, can be cruel - plain and simple. However
the children inherited more than just the disease from me.
They got the fighting spirit, the loving heart and a
passion that will never let them give up!
I will stand by their side, until...forever. I will help them,
so they don't ever feel like throwing a blanket over NF.