Greetings,
My name is Annie and I am a married mother of two, Calla and
Carmelo. My husband and I are not US
native but have adopted English as our first language. (He was born in Egypt and I in Haiti.) We both come from large families but have no
immediate family in Nashville. I am a
literacy coach and an early childhood consultant and my husband is a corporate
lawyer at a prestigious firm. We live in
Nashville, Tennessee and gross a combined income of approximately 200,000
dollars a year.
Our twins were both diagnosed with Type I diabetes at the age of
two and now at age five we have been living with the disease for three years. Our children have a part-time nanny (Carrie) who
works 25 hours a week and babysits at time on the weekends. She fills in whenever my husband and I have
work obligations that might interfere with the children’s routine. She’s been with us for a short five months
and has Type I diabetes as well so we feel comfortable when the children are
with her. We want to offer her a
full-time position but can’t financially afford it presently.
Our children have a hard time coping with the ailment because of
how they are treated at school by their peers.
While the preschool they attend is NAEYC accredited and the staff is
amazing academically, I believe a lot of the staff is ignorant to the fact that
having Type I diabetes is a lifestyle.
There are many things my little ones cannot do because of it and I do
not feel that administration and their teacher are intentional enough where the
twins are concerned. Carmelo is a lot
more reserved than Calla because he’s very intuitive and sensitive. They recently started wearing a pump that
administers insulin and monitors glucose level which my husband and I have both
realize has diminished our stress level.
We are both constantly checking on the children at school throughout the
day. The school recently advises us to
get Calla in a program because they believe her quiet nature is interfering
with her learning.
Economically we have taken a hit… While both our employers provide
healthcare, the medical bills have been piling up for three years. We’re happy the twins have not had to be in
the hospital for the past six months because we want them to be healthy but also
because we’ve had to adjust our lifestyle to cover medical bills. There is the nutritionist, the newly acquired
pumps, the strict diet (organic and natural food) for the whole family, the
emergency room runs, the hospitalizations, and so much more; we now have to
find a therapist for Calla. Due to the
psychological effect the disease has on all of us, our nutritionist suggested
seeing a family therapist as well.
Neither of our health insurances will cover any of that.
Federal and State governments provide some funding for
research but because research is what will increase my babies’ quality of life,
my husband and I volunteer our time to JDRF (Juvenile Diabetes Research
Foundation); He sits on the board of Directors.
Health Education and Awareness is the primary issue for
me and my family. Our children are only
five and cannot be counted on to administer insulin. They do not like wearing their new pumps and
take it off sometimes as a result. My
family and I are in need of mental health and support. My children will always benefit from an early
childhood education but the healthcare system needs to consider middle class
families with children with special needs when setting up services to support
healthy development. My husband and I
are looking for resources hence why we decided to become part of JDRF. We look to support our children in any way
that we can.
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