My husband, Tom and I have four children. Allie was 6 and Cameron was
2 when our twin boys were born, Braden and Grant. Braden was born with
Down Syndrome and several heart defects. He was missing the membranes
that divided his heart into four separate chambers. In addition, one
chamber was half the size of the others. His heart defects were so
profound that hospice care was an option that was presented to us.
Without open-heart surgery, he would certainly die within a year. And
yet, the doctors feared that even with surgery he would die when removed
from the heart-lung bypass machine. However, we were told that those
were decisions to be made if he even made it home from the Neonatal
Intensive Care Unit.
Braden did not give up and a month later he came home. Not without
oxygen, monitors, medicines, and countless doctor appointments. We
decided to give him every chance at life. On Valentine’s Day, 2002, our
3 month old, 11 pound baby boy survived his 9 hour open heart surgery!
Unfortunately, over the next couple of days things turned very grim. He
developed double pneumonia while on the ventilator. His lungs collapsed.
His heart was beating at 220 beats a minute even while in a drug induced
coma. He developed acidosis, which causes the body to shut down and
major organs to fail. We were told to call our families and have them
come in and say goodbye. We refused. We did not give up on him and
slowly he began to recover. He fought to live and a month later he was
home from the hospital.
My husband is a self-employed computer consultant. The individual
insurance policy that we carry was the best available to us and cost
$800 a month. Unfortunately, it would cover none of the therapies that
Braden would need. He required occupational therapy, physical therapy,
and speech therapy weekly. Each therapy session costs close to
$100/session. At $300/week; $1,200/month we would never be able to pay
for this privately. Through the Delaware County Board of Developmental
Disabilities, and the Early Intervention and Help Me Grow programs, we
were able to obtain the therapies Braden so desperately needed to
strengthen his body and help him reach his developmental milestones.
They provided the training on how to continue his exercises throughout
the week. He worked hard on everything from eating to sitting to
walking. It all took so much work-by him, by his therapists, and by his
family. His speech is extremely delayed. So we taught him sign language
after we were encouraged to do so by our Early Intervention Specialist.
They provided the books and videos that allowed us to teach our families
and ourselves how to sign. Soon Braden had close to 100 signs. He could
sign everything from mama to pizza to airplane. There is no greater gift
than to be able to communicate with those you love.
Unfortunately, the week our twins turned one, at the age of 32, I was
diagnosed with Breast Cancer. The Delaware County Board of Developmental
Disabilities was there for us. Through Family Directed Resources program
they provided respite care by a qualified nurse for Braden while I
underwent weekly reconstruction procedures for months following a double
mastectomy.
I hate to think of Braden’s life without the benefits of the Early
Intervention and Help Me Grow programs, The therapy he receives helps
him reach his greatest potential and create the highest quality of life
for him and our family.
My son’s beautiful face lights my life and challenges the stereotypes
stamped on him by the world. Today, Braden plays in the sandbox, and
swims in the pool. He loves to eat ice cream and wrestle with his
brothers. He sleeps every night with his favorite bunny and wakes up in
the morning and jumps in his bed. He giggles when blowing bubbles and
loves to color eggs for Easter. He squeals with delight as he swings and
he gives hiss twin brother a gentle push down the slide. My heart melts
when he calls me Ma Ma and I’m ready to wring his neck when I find him
playing with his rubber ducky in the toilet. He loves opening presents
and blew out his birthday candles with all the wind he could muster.
Simply, he is a little boy and does little boy things. The support he’s
received from the Delaware County Board of Developmental Disabilities
and through the Early Intervention and Help Me Grow programs allow us to
dream big dreams for Braden. We have hope for a bright future with our
son. Help him. Support him. Believe in him. His very life is proof he
doesn’t give up.
