A Mother's Diary: Part 3, At Home in the Living Room

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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.

Stay tuned, next week is the Announcement...

A Mother's Diary: Part 2, Friends in the Recovery Room

Haven't read the beginning? Go here to read it.

...Dr. Wagner had just gone through the Down syndrome fact checklist from the magazine in the waiting room, and I knew. I watched Steve’s face closely as Dr. Wagner finished his piece.

“Mark may have been born with a genetic condition called Down syndrome, but he is a beautiful baby boy and you should take him home and love him as a baby first and let nothing else get in the way of that.” God Bless Dr.Wagner! He put Mark, with his toes, fingers, ears, eyes, and the creased little hands into our arms and left us to fall in love and untangle our emotions.

Chapter 2: Friends in the Recovery room

The world of the unknown future pressed around our family. Yes, we cried and worried how this would all play out. My mother cried while my father held Mark, and studied him closely.” There’s nothing wrong with this baby,” he said. Luckily Mark was healthy in every way except for a heavy dose of jaundice. He would spend the next seven days sleeping in a bilirubin box, while I paced in anticipation to start his infant stimulation regimen.

The next day after Mark’s delivery, I woke up to see a strange man sitting on the bed next to mine. He had a small frame, gangly, straight black hair and bight blue eyes. He sat calmly sat with hands clasped in his lap, legs hanging down the side of the bed, and huge warm smile focused directly at me. My first thought was, “ How rude is this!” Who is this stranger in my recovery room? Meet Mr. Mike Mann, Alta California Regional caseworker.

I was astounded at this intrusion until I understood he was there to offer support and services for our family. Alta California Regional was there to provide or guide us into finding any services that we would need to raise Mark into a happy healthy child. Our hospital staff routinely called in the local support services for parents when a special needs child was born. Wow!

Not long after Mike left, I heard a riotous laugh and commotion heading my way. A sudden quiet and a tentative knock, followed by a child’s blond head peeking inside at me, gave me the surprise of the day.Wendy Paye followed her daughter Allison into my room, not really asking to visit, but telling me that they would be visiting! More strangers! Sure, why not!

I had Mark in my arms, and without asking, but filling the room with laughter, Wendy put Allison on the bed next to me. Allison was five years old. Stunning blue green eyes met mine in a smile I will never forget. Allison talked about Markie, talked about her family, talked about five year old type things, made me laugh, smile, and then she boldly took out Mark’s tiny feet and counted his ten beautiful toes for me. She could be a miniature talk show host!

I was still reeling with the weirdness of these people marching into the sanctity of my very birthing recovery room, when Wendy told me that Allison too, had Down syndrome. Allison was beautiful, animated, and engaging. Allison would always be my beacon for visualizing what Mark could accomplish and Wendy became the touchstone I would cling to for the inspiration needed to keep expectations high for Mark. SKY HIGH!

part 3 is here...

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A Mother's Diary: Part 1 Mark was born

The following is an excerpt from a large compilation of pieces written from the perspective of a mother of a person with Down Syndrome.

... Mark was born. I went into labor three weeks early, without a nursery ready and without any baby lotion on hand. Deep into a surprise labor, I went to Thrifty to get the newborn baby things. No newborn of mine was going to go without baby lotion! Panting in line, the clerk asked me when the baby was due. Soon as you ring this up- so hurry!

Waiting for my husband, Steve at the hospital, the only magazine next to the bed had a cover of ten Down Syndrome teenagers smiling for the camera. It was a crowd of happy teenagers, arms linked in camaraderie, laughing at the photographer. Inside was a list of Down Syndrome facts. Top of the list? “Commonly born three weeks early.” Mark was born at 7lbs 3 ounces. Nice and fat! At the first instant I saw him I suspected Down Syndrome and felt surprisingly comfortable with it. Later, sweet Doctor Wagner brought Mark to us swaddled and clean. In a most loving manner, he began to give us a “tour” of our baby. “Look at these toes, see this wide space between the big toe and the rest of the toes? As long as there were ten toes Steve and I were not impressed! SEE this curve in the little finger? Ahh! Thank heavens there were all ten fingers! See these little ears? Cute as could be! See these elongated eyes? So beautiful! See the long slant of his eyes? Looking back at us was a sleepy newborn. See this straight line across the palm of this hand? Love exploded as I grasped the little hand and it squeezed back.

Dr. Wagner had just gone through the Down syndrome fact checklist from the magazine in the waiting room, and I knew. I watched Steve’s face closely as Dr. Wagner finished his piece... stay tuned for more. NEXT