A Blessing – A Struggle; Living with Tetrasomy 18 P

The story of Debra

At the ripe old age of fifty, the “shock” of learning you are having a baby pales in comparison to the moment when the doctor confronts the ultrasound technician and asks”Yeah, but where is his stomach?”

Our son was born with a very rare chromosome disorder, Tetrasomy 18 P. He is a blessing! He is the happiest baby with a bright smile that stops strangers in the market and a contagious laugh that reaches your soul, despite the thirteen surgical procedures he has required in the first year and a half of his life.

The struggles of juggling his medicine regimen, doctors appointments, and therapy sessions coupled with working full time is grueling. Added to the struggles are the constant battles with insurance for coverage of his exhaustive care and the resulting financial upheaval for non-professional parents.
We subsist on four to six hours of sleep a night. We wake up to puke in the morning and go to bed to puke at night.

I love our son with all of my being. When he throws his arms around my neck in a strangle hold of love or blows kisses via FaceTime., my day is complete. We take each day as it comes with faith that he is who God wanted him to be, that he has already touched people’s lives in ways never imagined, that our love for him has helped him to progress to levels the specialists didn’t dream of.

Perseverance, patience and undying love holds us together through the good, the bad and the ugly. always with the goal of helping our son to achieve his highest potential, whatever that may be. He is our blessing, our gift and our greatest joy.

Meet other families living with Chromosome 18 abnormalities – RareConnect.org