She was born with a hole in her heart, life threatening seizures, and a
failing resperatory system. She wasn't expected to live. After the first 3
years of her life the medical health problems simply started going away. Now
she had to start working very hard in an all special education setting on the
things most of us just learn and take for granted (communicating, sitting,
standing, feeding self.)
For the many years that followed Tracy just continued to work very hard. She
can feed herself, wipe off a table, sit herself up, walk with assistance,
communicate (with out talking) and so much more. Tracy's body begin to bloom
in 1995 (and rather quickly too) it was at that time things with Trich began
(even though we had no idea it was Trich.) She also developed Raynaud's
Phenomenon which is a severe circulation disease that effects the
hands/fingers & feet/toes (and only seems to be a problem in the wintertime.)
She began by rubbing her head vigorously on the carpet (while laying on the
floor and in bed too) which caused the hair to burn and tangle so bad I had
to cut her beautiful, long, blonde hair because I couldn't comb it out. With
the shorter hair the rubbing continued but at least through conditioners and
special hair treatments, I was able to keep it in halfway decent shape. She
became so fasinated with her hair that she started pulling hair off on the
right side near her ear. It was at that time I began layering the left side
so the sides would look even.
Today she is constantly pulling from the top right side only. She enjoys
wearing a hat, on occassion, during the day, and she also pulls at night but
not as severe. She eats 1 banana a day and drinks Carnation Instant Breakfast
in a full glass of vitamin D milk. She is unable to try medicine or behavior
therapy because of her inability to communicate to a Dr. I think by letting
her pull, letting her wear a hat to cover her bald spots (for me not her),
telling her she's beautiful and I love her (I have always done that though),
making sure she has extra potassium (but not too much), and keeping her
sugar, caffeine and chocolate intake low, is a good start to helping her
battle Trich. I recommend you looking at the John Kender (JK) Diet.
I found out how to spell Trichotillomania and went to the internet where I
found Amanda's Trich Web Guide. WOW! Not only is Tracy not alone in her
pulling but I am not alone as a parent of a child who pulls. For me, to have
a name to this pulling stuff, helped. I tried restraining her right hand at
night and afterwards learning what that can make a Trich sufferer feel like,
I quit trying to make her stop the pulling. It is hard for me to see her hair
loss. She always had the most beautiful hair and now it's gone. HOWEVER...the
person that Tracy is, is still the same on the inside. That, I know to be, is
God intervening in the life of my whole family. To accept Tracy for who she
is, not what she looks like. It's hard to have that realization that she will
probably always pull on her hair, sometimes more than others. Tracy was
always a gift to me from God...not and easy gift to accept...but
nevertheless, a gift from a truly wonderful and loving God. He knew I would
be able to undergo the task of raising Tracy with WHATEVER the circumstances
would bring. In my opinion, she's alive and has good health...the rest is
one-hour-at-a-time and one-day-at-a-time. I will always love my one and only
child just as she is...the way God loves us, His children. I thank God for
Tracy just the way she is...but I also ask Him for strength and courage and
hope to get through each day as Tracy's mom.
Tracy as she looks now (Nov
1998), after Robin had to cut her hair very short because she was pulling so much.
Tracy - Dec 99
Tracy's
parents - Robin and Johnny Tracy started by rubbing the back of
her hair on the carpet, her right hand, and on her pillow. This created friction and
caused a frizzing and burning effect to her hair, it would be so matted by morning we both
would be in tears while I tried to brush out her hair. I had to cut her long silky blonde
hair, that was all the way down her back, up to her
shoulders. The rubbing continued, the only difference is I could comb it out. I didn't
know this was Trich for several years. Within the last few months she began pulling, only
on the right side, at the top and down near her ear creating a second, large balding spot.
I found out how to spell Trichotillomania and went to the internet where I found Amanda's
Web Pages. WOW! Not only is Tracy not alone in her pulling but I am not alone as a
parent of a child who pulls. For me, to have a name to this pulling stuff, helped. I tried
restraining her right hand at night and afterwards learning
what that can make a Trich sufferer feel like, I quit trying to make her stop the pulling.
What I did do was have her potassium level checked, it was normal. Then I added 1 banana
with lunch and I gave her a large glass of Carnation Instant Breakfast (no sugar) with
vitamin D milk. She also has yougart (no sugar). These three things are a daily part of
what she eats. I have cut way, way back on sweets but haven't cut sugar completely out.
It's not so hard to give her things she likes that has little to no sugar and has a good
amount of potassium. It is hard for me to see her baldness. She always had the most
beautiful hair and now it's gone. HOWEVER...the person that Tracy is, is still the same on
the inside. That, I know to be, is God intervening in the life of my whole family. To
accept Tracy for who she is, not what she looks like. It hard to have that realization
that she will probably always pull on her hair, sometimes more than others. Tracy was
always a gift to me from God...not and easy gift to accept...but nevertheless, a gift form
a truely wonderful and loving God. He knew I would be able to undergo the task of raising
Tracy with WHATEVER the circumstances would bring. In my opinion, she's alive and has good
health...the rest is one-hour-at-a-time and one-day-at-a-time. I will always love my one
and only child just as she is...the way God loves us, His children. I thank God for Tracy
just the way she is...but I also ask Him for strength and courage and hope to get through
each day as Tracy's mom.
Thanks, Robin
Check out Robin's personal
homepages... also info on Tracy's condition.
A beautiful (applicable) story
Some women become mothers by accident, some by choice, a few by
social pressure and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children. Did you ever
wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering
over earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong,
Beth, son... Patron Saint, Matthew" "Forrest, Marjorie, daughter... Patron
Saint, Cecillia" "Rudledge, Karen, Twins... Patron Saint... give her Gerard, he
is used to profanity."
Finally, He passes a name to an angel and smiles, "Give her a handicapped
child." The angel is curious, "Why this one, God? She is so happy."
"Exactly," smiled God. "Could I give a handicapped child to a mother who
does not know laughter? That would be cruel." "But has she got patience?"
asked the angel. "I don't want her to have too much patience or she will drown in a
sea of self
pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her
today. She has that feeling of self and independence that is so rare and so necessary in a
mother.
You see, the child I am going to give her has his own world. She has to make the child
live in her world and that is not going to be easy." "But Lord, I don't think
she even believes in You." God smiled, "No matter. I can fix that. This one is
perfect. She has just enough selfishness." The angel gasped, "Selfishness? Is
that a virtue?" God nods. "If she can't seperate herself from the child
ocassionally, she will never survive. Yes, here is a woman I will bless with a child less
than perfect. She doesn't realize it yet, but she is to be envied. She will never take for
granted a "spoken word." She will never consider a "step" ordinary.
When her child says "Momma," for the first time, she will be present at a
miracle and know it! When she describes a tree or sunset to a blind child, she will see it
as few people
ever see my creation. I will permit her to see clearly the things I see... ignorance,
cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be
at her side every minute of every day of her life because she is doing My work as surely
as if she were here by My side." "And what about her Patron Saint?" asked
the angel, his pen poised in mid air. God smiles, "A mirror will suffice."
~~~~author unknown