At Home in the Living Room

Last bit of part 2, then right to part 3

Soon after, I awoke to another knock on the recovery room door. In walked Yelena carrying Rebecca. Rebecca was wrapped in her mother’s arms. At two years, she was obviously smaller than her peers, but what a cherub; beautiful face of bright blue eyes, platinum blond hair and glowing rosy cheeks. We call her Rosy Posey! Rebecca waved a plump pink hand at me and smiled in her shy way. Yelena sat down with me, as Wendy had done, and shared her two-year journey with Rebecca with me. Like Wendy, she said, “ You can do this! We will help you. There’s lots of support here for you.”

By the time Joann and her son Zachary left me the following day, I had a realistic image of Down Syndrome children, knowledge that our community had many agencies and resources to help raise Mark, a support group, and an armload of pamphlets about raising children with Down Syndrome.

Whatever entity I had directed my Oath to (when I was ten,) was holding me to it.Now I had my chance to redeem my self as Sister Carmella of the Special Needs Child, and the field trip bus was going straight to my house!

Chapter 3: At Home In The Living room

We brought Mark home and set his cradle up in the living room. He slept and was extremely quiet as though he was still finishing his gestation. While he slept, I read. The most influential book was a (working on getting the name). It was almost the only book on caring for an infant with Down syndrome at the time.

Inside there were two children featured throughout the book. The first was a thin little blond toddler with Down Syndrome who slumped as he sat in pajamas that were large and sloppy on him. His sparse hair was dry and his gaze vacant. The other toddler was dressed in cute pajamas. He sat more strongly and his brilliant blue eyes showed a bodily attention in a robust attitude. His bright eyes locked on the camera taking his picture in every pose. Note: In regular child development manuals, the children are usually dressed in stylish clothes!

I made a promise to Mark in those days that he would become as the second child, only always dressed in stylish clothes That visual image glowed in my mind’s eye and sustained me as Mark slept the next few week’s away. When he made any noise at all it sounded like a kitten mewling. There was neither complaint or enthusiasm in it; just the validation,” I’m here.” He breast fed with difficulty, but persisted until he was full, and slept his days away.

In the meantime we were preparing for his Infant Stimulation program. We took off the fuzzy objects on his cradle mobile and replaced them with bold black and white paper designs facing down at him, where his gaze could have no choice but to include them in his field of vision. We duplicated those designs in his crib, over the sink where he bathed, on the back of he car seat he faced in the car seat. Big brother Ryan helped. Then, we lined his cradle with the same shapes but in bright felt shades of color hot glued onto the cradle bumpers. Wherever Mark’s gaze would rest, there would be something easy and familiar to focus on! We read to him, left the TV on and played music of all kinds to fill his world with sound. Mark tolerated his daily bath, but drowsed though it as if it was a welcome return to the womb, Daily infant massage received little reaction as well. Thank heavens, he continue to gain weight.

Waiting for Mark to grow was a challenge of faith. Some days were full of stifled sobs, others we went about daily business as if he wasn’t even sleeping in the living room. Developmental Delays began to take on meaning. We massaged him, took him out with us, kept stimulation up even if he didn’t respond. The idea of Infant Milestones absorbed a surreal juxtaposition to suspended animation.

He took his time deciding to join us, He was giving us the tutorial for raising him on his own terms, and in that, Mark was very clear. It was his life, and he would realize it on own time.

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About Carmella Miller

I live in Nevada City, CA with my husband Steve. I am a retired 7th and 8th grade English, Art and Drama teacher. I thought it would be fun to share the"Markie Stories" featuring our son Mark Miller, age 24. When a parent hears they have a special needs child, grieving and isolation often follow. Maybe because we finally "got" Mark raised up, that, now we see how funny it was at times. And we definitely know how how proud we are of him and ourselves.
This entry was posted in A Mother's Diary, Down Syndrome Help, Raising Down syndrome Boy and tagged , , . Bookmark the permalink.

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