What is something unique and special about your child with trisomy that you wish more people knew?

Believing that ALL children are a blessing from God, we were excited to welcome our sixth child. At 39.5 weeks, my water broke and Tabitha Grace eventually presented breech with a dipping heart rate. So, EMS was summoned to our home birth just in time to witness the delivery of our 4 pounds 2.3 ounces daughter, then transport us to the hospital for evaluation. Upon arriving at ER, we were bullied into a NICU admission, for Tabitha, where she was given full stabilizing care of nutrition, hydration, oxygen, and warmth.

Eventually, a neonatologist informed us that there were no physical anomalies or organ defects to report, other than a heart murmur which was later identified by a cardiologist to be a VSD, ASD, and open PDA. However, due to certain physical characteristics, they were confident that Tabitha had a chromosomal variation called Trisomy 18, which we were misinformed was fatal within a month. At this point, we were advised to take her home on Comfort Care and let her pass in her sleep!

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

Although we felt like we had been kicked in the gut, we knew that God had blessed us with a unique opportunity to live out our pro-life convictions. Thus, we determined to give Tabitha every opportunity to reach HER full potential. So, NICU set up appointments with home health therapies, medical supplies, and specialists, while a blood test later confirmed the Full Trisomy 18 diagnosis. With each new medical encounter, we were reminded that Comfort Care was an acceptable option, and encouraged to consider at what point to implement a Do Not Resuscitate (DNR) Order. Since it was a struggle to obtain equipment, supplies, and services that were truly functional and beneficial, we determined to explore ALL options, in search of neuro-enhancing life-affirming care.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

As we wrestled with overwhelming feelings of frustration, guilt, and fear, we retreated into isolation in an effort to keep from losing Tabitha, only to learn that there IS a difference between staying alive and living. When she was four months old, we made the gut-wrenching decision to fly 1,200 miles away for Tabitha to receive invasive heart repair surgery, because it had become painfully obvious that the alternative was to watch her slowly suffer to death by respiratory failure.

Later, we threw the biggest one-year-old birthday party imaginable, praising God for enabling her to defy statistics. Two months later, Tabitha was hospitalized with two concurrent respiratory viruses, and I was forced to advocate for her to receive a standard protocol chest x-ray ruling out pneumonia, which resulted in us finally getting our in-home ICU fully equipped. Since then, Tabitha has been healthy and thriving, except for ongoing issues with constipation and reflux.

Just like her siblings, Tabitha consumes three balanced meals of whole-food per day (through her G-tube); accompanies her family on all outings; and, is given every opportunity to learn and develop skills at her own pace. Although Tabitha remains baby-like in her motor and speech development, her comprehension, personality, problem-solving ability, persistence, and micro developments clearly shine through.

Finally, at six YEARS old, Tabitha IS a tenfold answer to prayer, because she is teaching her siblings to be patient, tolerant, caring, and compassionate citizens, who view differently-abled individuals as blessings. Our eldest daughter summed this up in her high school graduation speech, by urging her fellow graduates to “make the most of today, for tomorrow is never promised,” because all life is ultimately terminal! Thus, we do not cultivate a superior breed of people by exterminating those with neurological disabilities, but by caring for those who cannot care for themselves.