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Down Syndrome Parent To Parent: Good Friday

Posted by Nancy Spiegel. Written by Kerry Ryerson.
A brand new world opened up to me that early spring day in Augusta, Georgia. It was Friday, March 28, 1986 – Good Friday and Sean’s actual due date!!! The dogwood trees were starting to bloom and it was a beautiful day! Sean had been born two weeks early on Friday, March 14. He had been home for one week after having spent his first week of life under the bilirubin lights in the hospital. Every morning of his first week at home I had taken Sean to the hospital to have his heel pricked to check his bilirubin count, followed by a quick trip to the pediatrician, Dr. Hansen. My mom and my 22 month-old daughter Ajda had accompanied me each time.

Today’s schedule was different. We had an appointment to see Dr. Hansen in the afternoon and then get Sean’s blood work done. I was ready to receive the test results that I was certain the Doctor would have by now. The results would verify whether or not Sean had Down syndrome. Being Good Friday, I was overly optimistic that maybe that was a “sign” that the Doctor would have good news!

Dr. Hansen was surprised to see me alone with Sean and he expressed concern that my mom was not with me for this visit. It didn’t take long for me to understand why. He had the results of the chromosome test. Yes, Sean definitely had Down syndrome – Trisomy 21. Dr. Hansen was very kind in his delivery, as much as anyone could have been. I left his office holding Sean tight against my body, wanting to protect him from this diagnosis. I went down the main hall to a short hallway where I dropped to my knees with my sweet, innocent baby and I sobbed with such intense pain that it vibrated throughout my body. I felt completely alone in the world, cradling my baby boy so gently yet so firmly in my arms.

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Update on Restoration of Early Start

The phone calls, emails, letters and tireless efforts of many to restore early start services, which had been reduced in past years, succeeded in getting the attention and support of legislators,

Unfortunately the budget compromise between the legislature and the Governor did not include the funding to restore this program to earlier levels.

But the community can be very proud of the progress made in raising widespread awareness of this issue in the legislature, and raising expectations that as the new budget year progresses, this restoration will be revisited. We thank our local legislative representatives for their support.

Efforts will continue in the coming year to restore broader eligibility criteria for early start services to serve infants and toddlers with developmental delays.

(Currently we are able to serve infants and toddlers with developmental delays or established risk conditions. See State of California Early Start Eligibility Information)

About this Blog

The HRC Blog will be a place for sharing information on special topics of interest such as family support, early childhood development, etc. Submit blog entries to Nancy.Spiegel@harborrc.org.

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