By Karen D’Angelo
“At the end of the day when the weight of
the world has fallen upon me, I lie comfortably in bed knowing my
husband is picking up where I left off. When I’m too tired to make
my son’s meds, or greet the night nurse, it is my husband who never
says “no” and who is always willing to go the extra mile for me and
our children.”
My name is Karen, my husband is Pete and our boys are Brennan, age
12, and Trevor, age 9. Trevor was born with a metabolic disease
that no other child in America has. Trevor’s health has slowly
deteriorated and currently he cannot walk, cannot talk or make
sound; he breathes using a trach with continuous oxygen and a
ventilator every night, is fed through a g tube, and is very
lethargic due to several medications he is on to prevent seizures.
Trevor spent 100 days in the ICU last year and he is dependent on
others for every facet of his care.
My husband Pete is a full-time teacher and a super full-time husband
and father. Due to Trevor’s intense medical needs, a night nurse or
wakeful caretaker is mandatory. Due to the shortage of homecare
nurses, it has been our job to make sure Trevor is physically safe
and maintaining a safe airway when a nurse isn’t available. Many
nights, Pete has had to stay awake to make sure Trevor is safe. Our
only other choice would be to put Trevor in a home or institution.
This would break our hearts. I am especially tired at the end of
the day due to a heart condition I developed as a result of my
pregnancy with Trevor. The medicine I take makes me unusually
tired. This means Pete has to take care of Trevor in the evenings,
even when he has planning and grading to do for school. My days are
often spent on the phone trying to organize doctor’s appointments,
driving to various pharmacies to pick up medicine, stocking the
house with supplies, and keeping up with the proposals to Medicaid
for the items Trevor needs such as a generator, a hoyer lift and a
new wheelchair. Pete always puts his family first; and if that
means he has to be up all night to get things done for school, that
is what he will do and that is what he has done several times.
There are so many
families who are challenged the way we are and I’ve often heard of
marriages that fail because of stress. I am proud to say that my
husband and I have thrived because Trevor has become our lifelong
project, something we work at and for “together.” When I can’t take
anymore, Pete is there to take over and lift me up, many times by
massaging my feet or back and just making me feel loved and
comfortable. My husband not only cares for our beautiful sons, but
he remembers daily to care for me, too. There have been more nights
than I can count that Pete has had to put in a full day at school,
only to come home, pack a bag and drive an hour to the hospital to
stay with Trevor for the night, then go back to work the next day.
Please consider my
husband Pete as an ultimate caregiver. He is a role model to me,
our family and, most importantly, to our eldest son, who will no
doubt be a super dad someday!!
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