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Life Between the Tumbles

Author: Jessica Woolwine
Published Date: Tuesday, July 05, 2016

Today Abby fell. She was walking on a dry, flat and familiar surface. All it took was her brother passing a little too close to throw her off balance. It wasn’t Jackson’s fault; it wasn’t hers. Down goes a Bensten.

Abby was diagnosed with cerebral palsy, which can make balance and coordination a challenge. Tears, hugs and an extra dose of TLC might be all this fall needs. But in the back of my mind, I know that it might need more.

Abby is my former 24-week preemie. She took the majority of her hurdles in the neonatal intensive care unit at CHKD like a champ. But, the grade IV brain bleed moved in like an unwanted houseguest before she was even a week old, so a little tumble for Abby becomes a big worry for me. Will she fatigue easier? Did she hurt her good leg so mobility is an issue? Did she hit her head?

If it’s a big tumble, and she hits hard, like last week on the playground at school, it turns into a trip to the emergency room.

So far, so good today. Nothing a 10-minute cuddle session won’t set right. But even still, as the evening rolls around, we could be headed to Vomitville and a visit to CHKD. That original brain injury from her NICU days is never too far away from my mind.

Living with a lifetime diagnosis is not easy. I don’t necessarily want anyone to know Abby has this particular label in her chart. I want people to see her as I see her: kind, loving, silly and adventurous. Sure she walks with what I fondly call the “Abby Hustle”: fast, irregular, widespread steps with her left arm tucked up. But she does it with the biggest smile on her face.

As parents, we never want anything to be wrong with our kids, but that’s not always something we can control. There’s a balance parents of special needs kiddos have to find: knowing a child’s limitations, finding their talents and helping them excel with the knowledge of both.

For example, Abby could handle the NICU’s metaphorical hurdles, but I’m not about to have her jump actual track and field hurdles. After this spring’s gymnastics and dance class, I’m not sure it would be beneficial to have her perform anymore alongside other little ones her age with her current gross motor delays.

But …

Abby excels at using her imagination. She stands on our fireplace hearth and performs these elaborate soliloquys. She can belt out a new song like she’s a 4-year-old Adele. Get. It. Girl.

She loves to read and do crafts. Color. Make dresses out of PlayDoh for her dolls.

This spring, she started taking horseback riding lessons at Dreamcatchers in Williamsburg. I don’t think she could love anything more than riding her favorite horse, Macy, and feeding her carrots and ginger snaps.

A little tumble here and there is going to happen. But take it from someone who knows – no matter the lifetime diagnosis, it’s best to focus on life between the tumbles.

About Jessica Woolwine

Jessica Woolwine is a native of Hampton Roads and lives in Hampton with her three “miracles” Jackson (9), Abby (5) and Henry (1). As a mother to a childhood cancer survivor and a micro-preemie, she began the blog Mothering Miracles in 2014 to support other families dealing with health issues. Jessica also works as Creative Director for Rubin Communications Group and enjoys mixing her talents for graphic design and creative writing with community relations. She is a past member of both the CHKD Family Advisory Council and the CHKD NICU Family Advisory Council.