Every night we all four sing a song as the boys go to sleep. "Good night, sleep tight, wake up bright in the morning light." It is like a sleeping pill for the boys (and us, too). Tonight, after our song, as the boys were kissing each other goodnight, Owen suddenly said, "Mama, When I'm a big boy, I'll be able to hold Errol in my arms." And he will. Sometimes my heart grows as big as a house.
1 comment:
Dear Jonathan,
My mother spotted your article in the Winston Salem newspaper. When she saw the "Rubinstein-Taybi" syndrome, it popped out at her. You see my son, Jeremy,has RT. He is 28 years old and he lives with me in Jamestown, NC. I am a Curriculum Facilitator with Guilford County Schools. We have much in common, I guess.
When Jay was born it was a struggle just to find information about the syndrome and then even more of a quest to find the right doctors for him. We have made it this far with a lot of help from family, lots of prayer, good medical care, lots of love, and much hard work. He reads on the 7th grade level, but don't ask him the difference between a $5 and $20. Therefore, he lives about 70% of the time with me and 30% with his father.(Unfortunately, divorce is common among families with disabled kids.) He has his own laptop, cell phone, and circle of friends.
I tell you this to let you know that there is hope for kids with RT. They light up a room with their smile and love unconditionally.
All my best for a great summer and give Errol a hug from another RT family.
Debbie Ray and Jay Pritchett
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