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| Smiling Girl |
March
is Cerebral Palsy Awareness month, and our family has a precious link to this
disorder. My daughter, Cecely, has an
atypical form of cerebral palsy. She has
made it her life’s mission to not let the disorder to define her. Instead, she has chosen to find joy and to
encourage others who are dealing with any kind of pain or complication in
life. In light of my amazing daughter, I
wanted to share our CP journey.
First
of all, what is cerebral palsy? CP is a neurological
disorder that affects the control of the muscular system. There are many types of CP and several
manifestations and levels of CP symptoms.
We have learned that CP is very much an individual disorder. There are a few main types of CP. They are: spastic, dyskinetic (athetoid,
choreoathetoid, dystonic), ataxic, and mixed.
“People with spastic CP have
increased muscle tone. This means their muscles are stiff and, as a result,
their movements can be awkward…People with dyskinetic CP have problems
controlling the movement of their hands, arms, feet, and legs, making it difficult
to sit and walk. The movements are uncontrollable and can be slow and writhing
or rapid and jerky. Sometimes the face and tongue are affected, and the person
has a hard time sucking, swallowing, and talking…People with ataxic CP have
problems with balance and coordination. They might be unsteady when they walk.
They might have a hard time with quick movements or movements that need a lot
of control, like writing. They might have a hard time controlling their hands
or arms when they reach for something” and mixed CP is can be just that-a mix
of any form (Center for Disease Control and Prevention, https://www.cdc.gov/ncbddd/cp/facts.html).
Cecely was due in late-October of
2003. Her father was in the military and
often working on the base or on deployment.
When we were expecting Cecely, we had a plan. I had read every book and watched various videos
preparing me for childbirth, as Cecely was my first baby. Having the plan in place, Cecely’s father was
at work when I went into labor. We had
just moved into our first house the week before. There were boxes left to unpack, walls to
paint, and furniture to buy. We had not been
in the town long enough to know anyone.
Thankfully, my sister was visiting from college to help me get the house
ready. I woke up on an August morning,
went into the bathroom and went into premature labor. My sister called 9-1-1, and we had the first
class, small town experience of a firetruck, police car, and ambulance in our tiny
front yard. My sister then had to call
the Red Cross to get an emergency message to Cecely’s dad. My family lived seven hours away, and they
hit the road immediately to get to the hospital. All I kept saying was “this isn’t the
plan! This isn’t what the books said
would happen.”
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| Baby Girl |
Several hours later and after two
failed epidurals, Cecely was born on August 20th, approximately 2
months early. When Cecely made her
entrance into the world, she was not breathing.
Her tiny face was blue. The
nurses quickly took Cecely away from her dad and me. What seemed like hours (but really was a few
minutes) later, Cecely began to cry. It
wasn’t a baby cry, though. She sounded
like a cat or, if you are a Harry Potter fan, like a Mandrake. Initially, the doctor considered having her
airlifted from the base hospital to a big children’s hospital an hour away. Thankfully, Cecely was finally breathing on
her own, and she was taken to a special nursery (this was a very small hospital
and there was not a NICU). It was a few
hours before we were really able to see and hold Cecely. She was a healthy weight of 6 pounds even and
was 19 inches long…not bad for a preemie!
But she looked so small. She was
also very sick. Cecely had an APGAR
score of 3, intense jaundice, and severe colic from the start. During her first year, she spent time on a bilibed
(which made her look like a glowworm), had several ER visits, and kept the
doctors guessing.
When Cecely was a toddler, there was
a lady who volunteered in the nursery at our church who told me she thought
something was wrong with Cecely and encouraged me to have her tested. I had worked with children my entire life,
and I was never an advocate for all of the testing and milestones. I knew that Cecely was behind on motor
skills, but she was very early to talk!
I was (and am) of the mindset that every child develops at their own
speed. I hated the idea of having Cecely
tested. Instead, I went crazy-mama-bear
on this lady and refused to think about it anymore.
When Cecely was 4 years old, our
family moved back to our hometown. By this
point, Cecely had a little brother, Titus.
We found a preschool program for Cecely at a wonderful school. Cecely was born independent and very
social. She loved going to school. Titus and I would hang out in the classroom
from time to time. The teacher of this class
was a former special education teacher.
She encouraged me to talk to our pediatrician about being evaluated by a
neurologist. This time, I listened; but,
our pediatrician didn’t. The argument
was the age-old battle between the medical world and the education world. We kept trying pediatricians until we found
one who would write the referral to a pediatric neurologist. Once we visited the neurologist, Cecely was
submitted to a CAT Scan, an EEG, and several other tests. I hated seeing my baby girl be medicated in
order to complete the tests. I was scared
of what we may find out.
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| Dancing Girl |
The results of all this testing gave
us some overwhelming information. While
I was carrying Cecely, she had a stroke that triggered her premature
birth. The stroke combined with the lack
of oxygen at birth caused brain damage.
The brain damage was labeled Cerebral Palsy. At this point, we began to understand and see
the academic delay Cecely was experiencing.
Because of the neurologist and teacher, we were able to get Cecely
therapy services. As Cecely continued in
school, her academic delay became more noticeable. At one school, we were told she had plateaued
and would not be making any growth academically. The answer was to move her to the special
education classes. I worked in those
classes and loved those children, but those were not the problems Cecely
had. The reality was the school was not
staffed enough to handle what Cecely needed, and it would be easier to lump her
in another class, put a label on her, and let that be it. That is when we pulled Cecely from school and
began to homeschool. Yes, she was behind,
but she was able to make great strides academically.
We had some changes in our family,
and I needed to go back to work full-time.
We lived in a low-income school district. This time, there was a great staff, but still
no real support for Cecely. By this
time, she was in 4th grade.
The delays she had were noticeable to other students. She was called “stupid, retarded, idiot” by
classmates. There was one girl who found
great satisfaction in lording over Cecely.
She used her size and reading level to degrade others. She targeted Cecely to the point where Cecely
stopped using the bathroom at school and developed some urinary tract
problems. As I dug into this, I learned
that the classmate would hold the door on Cecely while in the bathroom so she
could not get out. She would pin her in
between the sink and the paper towel dispenser.
She would tell her she couldn’t leave the bathroom until Cecely cleaned up
the girl’s mess. I was furious over this
and began to go to the school during my lunch break. I was now a single mom and did not have the
ability to be gone from work. The
principal was great, the teacher was great, but they could do nothing. Expelling the student put her in danger
because of her home life. They tried to
keep the girls separated as much as they could, and I would “volunteer” in the
classroom as often as I could. Here is a
testimony to how amazing my little girl is…at the end of that hellacious school
year, she hugged her classmate, wished her a good summer and told her she would
be praying for her.
As we approached the middle school
years, I became afraid for Cecely and school.
Thankfully, she won a lottery spot at a charter school. This was a completely different experience
for us. This school was exactly what
Cecely needed. They gave her every
opportunity academically. They
encouraged her. They kept her safe. They loved her well. This was when we started having new
realizations with Cecely’s CP.
For Cecely, CP meant academic delay,
fine motor skill trouble, some gross motor skill issues, tremors in her limbs
when she was fatigued, slurred speech when she was tired, and her left leg and
arm turning inward. The charter school
professionals knew all of these and worked well with us. Towards the end of 7th grade,
Cecely began to start having new symptoms.
She began having pain—sometimes so horrible that she could not
move. Her leg muscles would completely constrict
and “lock up”. Writing had become
painful. We went back to the neurologist
who referred her to a genetic specialist.
A year later and thousands of dollars later, after many more tests and doctor
visits, the answer was Cecely’s form of CP was atypical. Generally speaking, the CP symptoms a person
is born with are what they have forever; they are static, they don’t get better
or worse. There is no cure. Cecely’s symptoms did not fit in a specific
category, so we have the “atypical” label.
Now, we have a transfer chair at the
ready for Cecely. There are days when
she can walk for 30 minutes with no problem.
Other days, after 30 minutes, the pain is so great, she can hardly
talk. So, we have a chair on hand so she
can be wheeled around and still get to experience everything she wants. The neurologist ordered muscle relaxers to
help, but my husband (Cecely’s step-dad) and I are very much against the side
effects she had with them. We have found
the swimming, stationary biking, and massages give Cecely temporary relief; the
same as the muscle relaxers that also turned her into a She-Hulk. We are operating on the understanding that
more changes in this disorder may come our way.
We are so grateful for the severity of her CP, because we know so many
other sweet children and teenagers who are not able to do the things Cecely
can.
In 8th grade, Cecely’s
teacher assigned the class the task of researching and presenting on a topic
that could help make a difference in the world.
Cecely chose awareness for people with disabilities. She used her own experience and the stories
of others to present to her class the importance of treating others
kindly. She was asked to present her project
to each class in her school. From that,
Cecely started her own YouTube channel called Cecely’s Corner. Her mission is to share her stories and the
stories of other people while giving hope and encouragement to her
viewers. She truly wants to be a light
in a crazy world.
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| Cecely's Support Team |
The diagnosis of Cerebral Palsy rocked
my world 15 years ago. I look at my
daughter today, and I am in awe. She is strong,
brave, independent, compassionate, and joy-filled. I believe she was created exactly how God
intended her to be. She has a purpose on
she can fulfill. She has a heart to love
others in a big way. She has a smile
that puts any spotlight to shame. I look
at my son, Titus, and see how watching his sister has shaped him. He has become one of her best
caretakers. He holds her up when she
needs extra support. He keeps her
safe. He is always on the lookout for
her. Cecely’s sisters are also great
advocates and have blossomed into an awesome care team. CP is a part of our family, but it does not
define us!
I was so excited to learn that the Upcountry History Museum in Greenville, SC was housing a Wonderland exhibit. My family and I visited this past weekend, and it was such a treat. On display, there are illustrations on loan from the Smithsonian. There are "new" pieces of art as Alice has been reimagined by artist, Charles Santore. There is information about Lewis Carroll. The highlight for us was seeing the costumes and models from Tim Burton's interpretation of Alice in Wonderland. If you live locally, I would definitely recommend going to check this out whether you are a fan of Alice or not. If you enjoy the written word, you will find this exhibit to be a treat!
