Published on in Trisomy 21 Update
Mia is Ava's mother, and biggest supporter. The family has been coming to Children's Hospital of Philadelphia for years of care from the Trisomy 21 Program, developmental and clinical specialists, as well as physical and occupational therapists. This is their story, as written by Mia.
It's hard to believe I gave birth to Ava nearly 20 years ago. My long, hard labor was followed by a rushed, emergency C-section. The obstetrician joyfully exclaimed “It’s a GIRL!”
Moments later, she informed me that my precious daughter had Down syndrome, also known as trisomy 21. They whisked her away and checked her while I laid there stunned, confused, and quite honestly, heartbroken.
The diagnosis shocked me. My brain quickly shuffled through stereotypical beliefs I held of people with Down syndrome, I did not plan for a baby with a disability.
I wish I knew then what I know now.
I quickly fell in love with Baby Ava and vowed she would reach her maximum potential. I swore I'd give her 100% of myself and access to every available resource in our area. We started with early intervention, Down syndrome support groups and local play groups, Woodbine House books and a multitude of doctors' appointments.
The early years were a rollercoaster of emotions. My enormous love and hope for Ava was peppered with intense, often anguishing fears. She was diagnosed with a leaky heart valve; then a catastrophic seizure disorder called Infantile Spasms. The neurologist informed me that the few milestones Ava had reached may fall away if she had another seizure and regressed into a permanent vegetative state. The grief and mourning of this possible fate was soul crushing.
I researched every treatment. I prayed. I sought out fellow Down syndrome moms, whom I call "sisters" because we trudged the same winding road. These strangers knew my family and I on a deep level.
As time passed, her heart valve closed appropriately. The seizure disorder was successfully treated and Ava began to thrive and reach new milestones. The relief and intense joy fed me. We stood on a mountaintop! My fellow "sisters" stood with us; they knew the highs and lows, as well.
Advocating for her daughter
The school years came and Ava’s varied skill set provided opportunities for therapies, modifications, growth and acceptance. I advocated for her to be placed in inclusive educational settings where she could learn from a variety of her peers.
About Trisomy 21 (Down syndrome)
Some years it was appropriate for Ava to be in a typical educational setting; in others it was not. Determining “what was right” for Ava was often unclear. Her educational journey was filled with a mix of rough terrain and verdant pastures. Each year was different, and the emotional rollercoaster continued.
When Ava was 14, we began transition planning to determine what her life might look like after high school. I had no idea what to expect, but hoped my daughter could continue learning and growing in some sort of educational setting.
Ava loves learning and had long dreamt of going to college. But, I was uncertain what form that would take or if it could even happen. Her high school transition coordinator told our family about Thinkcollege.net, a national organization that promotes post-secondary education programs. We were excited to learn there were almost 300 colleges and universities offering non-traditional learning programs.
We toured and fell in love with the Harrisburg campus of Penn State University (PSU) and its Career Studies Program. The school offered a well-rounded, person-centered program that included:
- Instruction and support in general academics
- Customer relations experience
- Career trips
- Job shadowing
- Practicum experiences
- Strong emphasis on self-determination and advocacy
Each student in the Career Studies Program is paired with a peer mentor to act as a friend and support. Students are expected to immerse themselves in student life and participate in many of the on-campus activities. Penn State Harrisburg is close to our home, so commuting was possible or she could live in off-campus housing.
Ava applied to PSU and, in April 2020, was accepted! In August, she was awarded a generous, one-year scholarship through the D.R.E.A.M. Partnership. We were overjoyed!
Today, my loving, brave, friendly and inquisitive child is a college student. In just the first few weeks of classes, Ava has blossomed and grown so much. She now walks with pride and confidence. I can see her becoming the young woman I had hoped for so many years ago.
I have no doubt Ava will reach her maximum potential. As parents, we know we'll continue to ride the ups and downs through life with our daughter.
But, we also know life is full of beautiful and unexpected surprises: the greatest gift we've ever received was one we never planned on.