In the harried moments after a child is born, parents find themselves waiting to simply hear their child is OK.
"That's when I asked my doctor if she was healthy," Kristan Manselle said of the November 2010 birth of her daughter, Augusta. "She (doctor) turned away from me to speak with the nurses, and all I could hear was whispering. I started crying and asked Ryan what was wrong, and he just looked confused. And that's when the nurse said it. "She has a couple characteristics of Down syndrome.'"
In the ensuing minutes and hours, the Manselle family learned that Augusta, their second child, did have Down syndrome.
The days that followed were filled with questions, appointments and the beginning of acceptance of their new life. But Kristan said the blessing in it all, Augusta herself, was never lost.
The preliminary tests have shown Augusta to be a healthy child, with none of the heart problems or other serious medical problems associated with Down syndrome.
"Needless to say, my prayer was answered," Kristan said in her blog. "We brought her home after just one day of being in the hospital. At seven weeks old, she was nearly 10 pounds and had already learned to roll over, thanks in part to her wonderful therapists. She sleeps through the night, is in the 75th percentile for growth and hardly ever cries. We call her our little snuggle bunny because she loves to curl up in our arms. So far, the only health issue we have is her hearing."
In the coming months, Augusta will be fitted with and begin using hearing aids. While she does not have complete hearing loss, there are some frequencies and sounds she cannot detect.
Upon hearing the diagnosis, the family began doing research and eventually was connected with the Down Syndrome Association of Greater St. Louis.
"They have become our resources. They sent us books and things. We found the support we needed when we needed it most," Kristan said.
The family has Augusta enrolled in First Steps, an early childhood program to help children with disabilities. She takes part in occupational, physical and speech therapies. She is also being taught sign language, and she seems to love that, Kristan said.
"She is very observant," Kristan said. "And as we sign to her, she smiles and pays such close attention to your hands. It is very cute."
Forced to make frequent trips to Columbia, Kansas City and St. Louis for appointments, the family spends a lot of time at appointments and on the road. But the successes they have had already makes it all worth it.
"She was rolling over at seven weeks. She had Maverick (older brother) beat on that one," Kristan said. "But as she ages, we are becoming aware that Augusta will do things in her own time."
To help spread the word about Down syndrome and how each child is still a loving, unique child, the Manselles have formed a team to walk in a fundraiser to raise money for research and support.
"We formed "Team Augusta' and are participating in an event called "Step Up for Down Syndrome' on June 5 in St. Louis," Kristan said.
As a fundraiser for that event, a par-3 golf tournament is being held Sunday at Osage National Golf Resort at the Lake of the Ozarks. A silent auction, dinner and a live band will follow. The silent auction starts at 6 p.m. Proceeds from the auction go to Augusta's medical expenses (hearing aids and ear surgery) and to the Down Syndrome Association of Greater St. Louis.Â
Ryan is the head golf professional at Osage National Golf Resort. For more information on the event or to register to play, call 573-365-1950.
In the days since Augusta's birth, Kristan has spent much time thinking of her daughter's future. Not just health wise, but how she will be socially accepted.
"Our biggest goal is to help spread the word, and acceptance and love that goes with understanding. As a baby, she is just a ball of cuteness. But as she ages, that worries us," Kristan said. "Kids can be cruel - the awareness is so important for us and all kids with Down syndrome."
Follow Kristan's blog at www.ourunexpectedblessings.blogspot.com/
For more information on Team Augusta and the upcoming walk, go to www.firstgiving.com/fundraiser/Team-Augusta/2011-step-up-for-down-syndrome.