Mommy's Girl
Little Rhianna Blackwell knows how to get what she wants. When the first notes of Barney's "I Love You" song begin to play at the end of the video, she cries and screams until her mother, Tammy, hits the rewind button.
Rhianna has learned that the tune signals the end of the show, a leap in understanding that some thought she would never take. Tantrums never sounded so good.
Her mom explains, "the neurologist says that from the looks of her MRI she should just be 'lying there doing nothing'." Fortunately, magnetic images don't paint the whole picture, at least not in this feisty little girl's case.
Rhianna was born on August 27, 1999 with Pierre Robin Syndrome, lissencephaly and microcephaly. Tammy's pregnancy was normal, and the liss and micro were not detected until her baby girl was about a year old. The Pierre Robin, with it's characteristic cleft palate, small airways, big tongue and small jaw, was noted at birth.
Tammy is a first-time mom to her special girl. A lot of mothers feel overwhelmed by the constant feeding and care that a newborn needs. There are the nightly feeding parties that drain energy along with milk, the constant diapering, the crying...an essentially 24/7 job of keeping another human alive and well. It's tough for anyone to adjust to in the best of circumstances.
For Tammy, there was real pressure in terms of helping her daughter stay alive. Her baby needed to be on her stomach at all times to prevent her tongue from obstructing her airway--something which also necessitated an apnea monitor during sleep. Anyone who has dealt with the beeping caused by loosened wires knows how jangled one's nerves can get over time when living with technology.
Rhianna is not able to suck, so feeding was not a matter of loosening a top and pulling out a breast, or heating a bottle in the middle of the night. She had to use something called a Haberman Feeder that allowed her to squeeze the formula directly into her child's mouth.
The special needs didn't end there. "When Rhianna was ten months old her cleft palate was repaired," Tammy says, "she had a feeding tube placed into her stomach for liquids, she's had nine sets of ear tubes, and corrective surgery for her strabismus (eye crossing)."
A few years into parenting, Tammy is still dealing with sleepless nights. "Rhianna wakes up a few times a night because she has episodes of apnea (cessation of breathing) and she is connected to a pulse oximeter (a device that lets a parent know if their child is receiving enough oxygen)."
Living with the reality of atypical development and endless "special needs" is something that very often forces us to find and develop strength we didn't realize was within us. We rise to meet challenges, and then we rise again. Ordinary parents face extraordinary circumstances. Tammy Blackwell is no exception.
"I can handle a lot more than I ever dreamed I could. Rhianna has taught me patience--something that I never had," Tammy explains. "I have learned that I can get by on three or four hours of sleep a night, and that some things can wait--like those chats with friends when she wants to play. I'm thankful for everything we can do. My daughter has taught me to cherish life and live it at the moment and to not worry about those things that will not matter a year down the road."
But it's not all about the daily march. Rhianna is a fun little girl who is entertaining her family just like any other child.
"Rhianna rolls all over the house, claps her hands in excitement, blows kisses, laughs when we play 'peek-a-boo' and loves to pull my hair. She will grab handfuls and pull you down to her face and then try and bite you--she is rotten," Tammy says.
Recently, Rhianna gave Tammy the perfect Mother's Day gift. "I was sneaking through the living room to get a diaper for the baby, because Rhianna always screams for me if she sees me," Tammy explains, "then I heard a tiny voice say 'mommy'...not ma, or mama, as she had in the past, but mommy!" There's no doubt this little spitfire got what she wanted that day--her mommy's heart in her hands!
Written by Carolyn Murray
