Hello all. I just signed up to share my 2 cents (don't worry, they're always free)! I am a busy stay home mommy to 5 beautiful children - my son Caden is 8 and has Rubinstein Taybi Syndrome (RTS), my daughter Avery is 6, son Declan is 3 and identical twin daughters Macey and Madelyn are 19 months. To say that God has blessed our lives with children is an understatement; to say that we expected everything we got along with them is also an understatement.
Caden's diagnosis came when he was only 6 weeks old, though we suspected something from the get-go. RTS is very rare, but is similar to Down Syndrome in terms of mental retardation levels. Caden loves everyone - if only we who are "normal" could be more like him who is "not"!
Writing helps me process. I've been writing in my own personal blog for several years, found at www.thisisournormal.blogspot.com - I wanted to encourage people also getting an RTS diagnosis that it isn't the end of the world, it's merely the beginning of a new normal.
I would love to be able to share with other members of the CRC. I would love feedback and love to hear that I am not the only one who questions, who worries, who wonders and who doubts. Sometimes I think we fall into that pat answer of, "You'll make it with God's help" - while we know it's true, it sometimes feels like a finger-tip band-aid on a big ol broken heart. I long for realness within the community of Christ. I long for people willing to stand up and say, "THIS SUCKS!"
Posted in: Parent-To-Parent Support Area (Blog or Forum)
Hello all. I just signed up to share my 2 cents (don't worry, they're always free)! I am a busy stay home mommy to 5 beautiful children - my son Caden is 8 and has Rubinstein Taybi Syndrome (RTS), my daughter Avery is 6, son Declan is 3 and identical twin daughters Macey and Madelyn are 19 months. To say that God has blessed our lives with children is an understatement; to say that we expected everything we got along with them is also an understatement.
Caden's diagnosis came when he was only 6 weeks old, though we suspected something from the get-go. RTS is very rare, but is similar to Down Syndrome in terms of mental retardation levels. Caden loves everyone - if only we who are "normal" could be more like him who is "not"!
Writing helps me process. I've been writing in my own personal blog for several years, found at www.thisisournormal.blogspot.com - I wanted to encourage people also getting an RTS diagnosis that it isn't the end of the world, it's merely the beginning of a new normal.
I would love to be able to share with other members of the CRC. I would love feedback and love to hear that I am not the only one who questions, who worries, who wonders and who doubts. Sometimes I think we fall into that pat answer of, "You'll make it with God's help" - while we know it's true, it sometimes feels like a finger-tip band-aid on a big ol broken heart. I long for realness within the community of Christ. I long for people willing to stand up and say, "THIS SUCKS!"
Let me know how I can help.