WILLA AND CHIEF

PHOTO BY RANDY BACON

WILLA WITH CHIEF

“Truly a WONDER”

(Story written by Beth, mother)

Willa was born 13 weeks early in 2012. Weighing only 1lb. 12 ounces. She has a twin brother named Chief. She had to be a fighter if she was going to graduate from the NICU, which she did after 130 days of hospitalization. Because of her micro preemie status, she had lots of complications from blood pressure, breathing on her own to brain bleeds.

At three days old she was diagnosed with IVH Stage 4, which is a hemorrhage in the brain that involved brain tissue. It was within her first week of life that we were told “if she makes it, she will not be like other kids her age.” From that moment on, I did not care if she was ‘normal’, I just wanted her to live a life that was happy and free of pain.

She has undergone over 9 surgeries in her short life to treat various things and she’s come through all of them like a rock star. She has been diagnosed with hydrocephalus, seizure disorder, and cerebral palsy. These diagnoses may limit her, but they do not define her. She has overcome so many obstacles and continues to do the same today. She doesn’t know she is different, she just knows she wants to walk and play and be just like every other kid out there. She has to work a little harder to accomplish this, but she has stayed the course since she was born.

She started therapy immediately after her NICU release and she’s still going strong today - 7 years later! Willa is mentally different from her peers. She has trouble self regulating, she gets overwhelmed easier than most children, she has trouble expressing emotions, and sensory processing disorder. The psychological and mental aspects of her are just as complicated to work through as the physical disability. It’s a constant struggle, but we keep persevering and finding out what works and doesn't work.

Willa loves music and to sing and jump on the trampoline and swing. She’s a daredevil. She’s brave. She’s beautiful. She’s SO smart. She has the best memory. And the BEST thing about her- she is not afraid of other people. She talks to everyone. She doesn’t have the capacity to discriminate. She doesn’t see anyone as different. She is perfect LOVE. She inspires me and so many other people to never give up, to try your hardest, and to make every moment count. When she was in the NICU one of my friends coined the name Wonder Willa- I did not know how true this was until I started seeing her defying odds, coming out on the other side of pain, working until her little body can’t take anymore. She is truly a WONDER. Anyone that knows her will tell you that!