I have a daughter, Rebecca, who turned
19-years-old on August 3, 2005. 
She was
born 3-and-a-half weeks early, weighing 7 lbs., 0 oz.
and was about 20 inches long. Since Rebecca's heart
sounded "funny" at first, she was given an
echocardiogram. She was diagnosed with a heart problem,
which the pediatric cardiologist described as consisting
of one wall of her heart being thicker than the other.
(The doctor did not give this condition a label of any
sort.) We were told that these heart problems in
newborns sometimes resolve over time, and Rebecca's did,
for which we thank God! She was also born with a
craniofacial condition called Trigonocephaly, an extra
toe on her right foot (complete with bone and joints),
several "strawberry" birthmarks, and clenched
fists. (She had craniofacial surgery to correct the
Trigonocephaly, and had the toe removed, at
8-and-a-half-months-old.) Rebecca developed a very bad
naval hernia shortly after birth, possibly as a result
of the screaming she did for hours each day until she
was about 5-and-a-half-months-old.
She was
born 3-and-a-half weeks early, weighing 7 lbs., 0 oz.
and was about 20 inches long. Since Rebecca's heart
sounded "funny" at first, she was given an
echocardiogram. She was diagnosed with a heart problem,
which the pediatric cardiologist described as consisting
of one wall of her heart being thicker than the other.
(The doctor did not give this condition a label of any
sort.) We were told that these heart problems in
newborns sometimes resolve over time, and Rebecca's did,
for which we thank God! She was also born with a
craniofacial condition called Trigonocephaly, an extra
toe on her right foot (complete with bone and joints),
several "strawberry" birthmarks, and clenched
fists. (She had craniofacial surgery to correct the
Trigonocephaly, and had the toe removed, at
8-and-a-half-months-old.) Rebecca developed a very bad
naval hernia shortly after birth, possibly as a result
of the screaming she did for hours each day until she
was about 5-and-a-half-months-old.
She was so sweet as a little girl, except for
occasional "nuclear meltdowns." These were brought on
more than anything, I believe, by the fact that she
never developed a normal sleep pattern. We tried two
sleep clinics, two drugs, melatonin, and Ott Lights. She
was slow to toilet train and had accidents for a long
time.
Rebecca loved to be sung to, and could sing
the words many complicated songs (hymns, Christmas
Carols, etc.), by the age of about
2-and-a-half-years-old. She could also quote
(word-for-word) story books, such as the Berenstein
Bears books, beginning at about the same age. Her motor
skills (gross and fine) were slow to develop. The fine
motor skills were especially affected, as she had very
weak thumbs and developed strabismus (exotropia) during
Toddlerhood. Rebecca's strabismus was surgically
corrected at the age of five. I began to homeschool her
during Kindergarten, and even though her strabismus
surgery was performed that year, she was reading a
couple of years above grade level (at least) by the end
of that year.
Teaching Rebecca to write was difficult,
because she had such weak thumbs that putting pressure
on her paper with a pencil tip caused her to drop the
pencil. Also, even after her eyes had healed from the
strabismus surgery, she could not make a reproduction of
a letter simply by having looked at it. So, I would
place Rebecca's hand correctly around the pencil, place
my hand correctly around hers, and write with her. I
made up "clue" words for us to say together
regarding each letter's shape. After a year-and-a-half,
she could print all of the uppercase and lowercase
letters on her own. The last few months of that time I
was really just touching her hand, then her wrist, then
her shoulder as she wrote, because this increased her
confidence. Rebecca seemed to be able to learn the
letters, because I was "drawing them on her brain" with
all the repetition. Drawing even simple shapes on her
own is something with which she still struggles
mightily even at her present age of 19.
Rebecca developed scoliosis in late childhood,
but we are thankful to God that surgery has not been
necessary. I taught her at home, along with her younger
brother, until this year. We have found a school for the
developmentally delayed which emphasizes social and
academic skills, not merely social. Rebecca was
diagnosed at the age of 11, after we went through years
of not knowing what was going on with her, as having
Partial Trisomy 13q (plus being trisomic for a tiny bit
of the 15th chromosome). Even the geneticist was
surprised at these results, because she looks so much
like the pictures in the genetics literature of Williams
kids. She has almond-shaped hazel eyes, a small upturned
nose, a little, pointy chin, and low-set ears. She has a
very full lower lip, but her upper lip is actually a
little on the thin side. She is 4'11 and 1/2" and weighs
119 lbs.
Having a normal conversation with Rebecca was
very difficult for the first several years of her life,
but she has made much improvement the last two or three
years. She still struggles with making and maintaining
eye contact. In early childhood, she could quote tons of
stuff, and would even use lines from books or movies as
a means of conversing, but did not engage in much
original speech. She would talk in a really fast, nasal
tone just to the immediate family (with very few
exceptions) and mostly about selected topics - books,
movies, the birthdays of everyone in our family,
and other things she had memorized. Her vocal pitch and
cadence, plus the variety of topics she will address
have all improved over the years. Conversing with
Rebecca now is like conversing with a mid-to-upper
elementary schooler, minus the obsession with boys and
the "cattiness" typical of many girls in that age group.
