"If you've ever wondered what it's like to be told that your unborn child has Down syndrome ... "
Dreams Change While I am hopelessly in love with my daughter sporting the extra chromosome, some others were just given their amnio results that make them feel as though they were robbed of every last chance of happiness due to this “extra chromosome deformity”. While I am luxuriously enjoying the beautiful shells in my life now, someone else is stuck out in the angry waves- drowning Dreams Change [Kindle Edition ]
If my elderly mother used the internet, she would be able to comment on this piece.
I don’t know how my parents felt in 1970 when a baby girl was born with Down Syndrome. As a junior in high school, I was old enough to know there was grieving going on in our house.
I remember Dad and the grandmothers protecting my Mom and the baby from curious people. I remember Mom spending days in her room crying. I remember a sibling asking me if that baby looked funny. I denied such a thing vehemently, while feeling guilty for also thinking such a disloyal thing. Eventually Dad told us about our sister’s special needs. I remember that Mom switched my sister to a bottle because Naomi’s sucking reflex was almost non-existent. I remember seeing my Dad take an hour to feed her a bottle, coaxing her to learn to eat, to live, to thrive.
That was the beginning of a fierce determination to protect and nurture our family’s new little one. Mom was so angry at a friend’s suggestion of institutionalization that the friendship was never the same. We five older siblings stopped using the word “retarded” as an insult. We began to teach Naomi and rejoiced in progress - she can roll, she can sit up, she can -well, she can’t crawl, but she can scoot on her bottom, she talks, she walks. She charmed us because she smiled and laughed like no baby ever had! We became very proud of our little sister. Mom taught her to help around the house and to read. She taught her proper public behavior. Naomi knows the truth of John 3:16; she has a testimony of faith in Christ.
Our sister was born at a time when education for special needs was just beginning to improve. She did not benefit from vocational training. One might say she was overprotected. Naomi went through difficult times as she entered adulthood with no “life” apart from her family. Grieving for a child does not stop when one falls in love with her. Our parents grieved over a time of depression that lasted about 15 years. Naomi has had to go live with one of her siblings. Mom is happy that Naomi is in an ARC program and in children’s classes at church. But she misses her baby and her baby misses her Mom.
Adult Downs care has it’s very special challenges - daily challenges with daily frustration and daily reward. Parents today have more hope for their child. People used to expect to bury their Downs child, so few prepared for the future. Today Downs life expectancy is sixty and beyond. New research and resources can help a parent prepare their child for a full life and a future without them. Families who know the Lord find comfort, help, and wisdom as they trust a sovereign God who created and loves each person. But never doubt that they will need that comfort, help, and wisdom for the rest of their lives.
I don’t know how my parents felt in 1970 when a baby girl was born with Down Syndrome. As a junior in high school, I was old enough to know there was grieving going on in our house.
I remember Dad and the grandmothers protecting my Mom and the baby from curious people. I remember Mom spending days in her room crying. I remember a sibling asking me if that baby looked funny. I denied such a thing vehemently, while feeling guilty for also thinking such a disloyal thing. Eventually Dad told us about our sister’s special needs. I remember that Mom switched my sister to a bottle because Naomi’s sucking reflex was almost non-existent. I remember seeing my Dad take an hour to feed her a bottle, coaxing her to learn to eat, to live, to thrive.
That was the beginning of a fierce determination to protect and nurture our family’s new little one. Mom was so angry at a friend’s suggestion of institutionalization that the friendship was never the same. We five older siblings stopped using the word “retarded” as an insult. We began to teach Naomi and rejoiced in progress - she can roll, she can sit up, she can -well, she can’t crawl, but she can scoot on her bottom, she talks, she walks. She charmed us because she smiled and laughed like no baby ever had! We became very proud of our little sister. Mom taught her to help around the house and to read. She taught her proper public behavior. Naomi knows the truth of John 3:16; she has a testimony of faith in Christ.
Our sister was born at a time when education for special needs was just beginning to improve. She did not benefit from vocational training. One might say she was overprotected. Naomi went through difficult times as she entered adulthood with no “life” apart from her family. Grieving for a child does not stop when one falls in love with her. Our parents grieved over a time of depression that lasted about 15 years. Naomi has had to go live with one of her siblings. Mom is happy that Naomi is in an ARC program and in children’s classes at church. But she misses her baby and her baby misses her Mom.
Adult Downs care has it’s very special challenges - daily challenges with daily frustration and daily reward. Parents today have more hope for their child. People used to expect to bury their Downs child, so few prepared for the future. Today Downs life expectancy is sixty and beyond. New research and resources can help a parent prepare their child for a full life and a future without them. Families who know the Lord find comfort, help, and wisdom as they trust a sovereign God who created and loves each person. But never doubt that they will need that comfort, help, and wisdom for the rest of their lives.
L Strickler
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