We were your typical expectant parents- pulsating with excitement and fear over bringing home our first-born, our daughter. Averi was delivered to us on the evening of Friday, January 22, 2010 and all was right with the world. As the weekend progressed I longed for a home cooked meal and my own bed, but my budding mommy instincts told me something was wrong. Averi wasn’t eating and she slept throughout most of the day so I requested that the nurses look after her in the nursery overnight on Saturday. Late Sunday morning we found ourselves watching in disbelief as a team of strangers wheeled her away in the tiniest critical care unit in existence. Instead of heading home as we should have been, our beacon was in a LifeStar ambulance “red-lighting it” to Saint Peters University Hospital. As quickly as our sweet baby girl was in our arms she was gone.

We floated through a barrage of tests to a set of chairs in an empty recovery area, face to face with our daughter’s neurosurgery team (what are we doing here?). At two days old our baby would have brain surgery in hopes of resolving the hemorrhage that threatened her fragile being. The hours that followed were excruciating. We looked to the neonatal team begging to know if she would survive; no one could be certain. Only ten days later we came home, elated in spite of the additional worries of caring for sutures and identifying seizures. Weeks, then months passed us by slowly and without incident. At every appointment and every follow up test we implored to know how she would develop; would she be “normal”? We received evasive answers; we just had to wait and see.

At eight months of age Averi started Physical Therapy. By eleven months she was in Occupational Therapy. The celebrations of her milestones might as well have been national holidays around our house. At sixteen months she walked. Not one, not two, but seven steps. Crawling? No thank you. Cruising? Hardly. Most of the typical milestones Averi had reached were accomplished for the first time with the assistance of a therapist. On this day Averi had decided that this achievement would be hers and hers alone.

When she was about a year and a half old we got our diagnosis: Left Hemiplegic Cerebral Palsy. While we were not necessarily surprised, we had to make peace with the idea that this was not something that would dissolve in a few years’ time. Averi would be shouldered with lifelong and ever- changing physical challenges. What we did know, resolutely, was that this child would be supported and loved. We would make available to her nothing less than what was blanketed by the stars. We declared that Averi would always know that she could do anything she put her mind to, even if the way she did it happened to be differently than her peers.

Today the path I had planned for my family two and a half years ago has shifted somehow for the better. Averi has been the light in our family and small town, bringing joy and laughter to an expanding network of friends in an astounding way. We take nothing for granted. We are grateful for the time we get to spend together. Averi is a loving, empathetic and gracious. She has a lively spirit that touches everyone she meets and reminds her father and me that “what might have been” could never compare to what we have today.

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