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Raising a child with spastic diplegic cerebral palsy

When my beautiful daughter was born two months early, we worried about her future.

I trusted our NICU, and happily learned how to care for our baby under the guidance of qualified doctors and nurses. Once she came home, we experienced the exponential learning curve of parenting—with the added difficulty of developmental delays.

After her diagnosis of spastic diplegic cerebral palsy at 15 months, I couldn’t help but wonder if she would be able to enjoy the things I did growing up—playing tag with neighbors, searching for frogs in ponds, racing my bike down the street, playing catch, riding waves at the beach, just to name a few. It was a time of great uncertainty. A time where a parent searches endlessly for answers that don’t exist. A time where patience becomes a moral imperative. A time where hard work, “grit”, becomes your lifestyle.

Our lives became a practical cornucopia of therapies. Exercises and play to develop fine motor skills, feeding, speech, gross motor skills, sign language, speech, oral motor skills, incorporating all kinds of sounds, textures, and integrating her as best we could into play groups for socialization (for her and us). We tried to balance therapist appointments, doctor’s visits, surgeries, child care, work, while buried under insurance paperwork and trying to have some semblance of a family life.

It was a time of great uncertainty. A time where a parent searches endlessly for answers that don’t exist.

Out of this experience evolved the ability to adapting our world around us so our daughter could explore it. Trying to make things accessible becomes a natural part of our lives. As she grew stronger, we were able to use existing equipment to help her instead of relying on invention.

Her AFOs helped form her feet and give her stability. She used a tiny walker for two years before we made the complete transition to loftstrand crutches—which, together with her leg braces, continue to be the most vital pieces of equipment in her life. Her world grew larger as she could explore uneven terrain—including pebbles, hills, snow, and sand.

While she hasn't caught frogs, she has caught fish—in a handheld net—in the surf on the beach (using one crutch). She plays with neighbors, and bikes with her trike, hoping to one day ride a two-wheeler. She auditioned and won the lead part in the school musical. As a family, we’ve traveled by car, train, ship, and plane, and as long as we have her crutches and wheelchair (for the long distances) we’ve been set.

My daughter is almost 12 now. She is funny, talkative, intelligent, and willing to try anything. Gone are the days where I wonder “if” she can do things; now my thoughts move to “how” she will do them. If there is anything I have learned after 12 years of parenting a child with a disability, it’s that there’s more than one way to accomplish any task. In today’s society, with modern technology, worldwide delivery, advances in health care, a robust online community, there is so much potential for inclusive good—her future looks bright.

You can read more about Elena on elenadoodle.blogspot.com

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