The Big Sister
Her world as she knew it; forever changed when she was 22-months-old.


We were about to rock our first born’s world. Her position in the family was going to make a seismic shift. A baby was on the way, and she was going to discover a different role in her young life. In an ideal world I would have waited another year between babies. However, I was so sure I would have a child with Down syndrome I told my hubby we were getting this next baby in before I turned thirty-five.
The risk of having a baby with Down syndrome rises as the mother ages. At the time I had my first baby I was at a 1 in 1000 chance of having a baby with DS. But I told my hubby I had a 100% chance of having a baby with DS. Being a mathematician at heart (really, he’s a physicist, but math was a first love, but too boring) he gave me all the statistical reasons why it would not happen. I told him his numbers lie. I knew I would have a child with DS because I also didn’t believe it was a big deal. They’re wonderful children (says the pediatric nurse that fell in love with a little one with DS in 1979), so we will have a child with DS, was what I told him. I also suggested as I was still at a 1 in 1000 chance, maybe we would fool mother nature. As the commercial once said, “It’s not nice to fool mother nature.”
I tried to talk him out of having children, we could have more disposable income. We could travel a lot and frequently. He was having none of that. He wanted children, preferably girls as his family had a dearth of females—7 generations of all sons on his dad’s side.
We had AJ well past her due date and what a snuggle bug! She was a content baby, as long as she was held. As a first baby, she got held a lot. I strapped her on when I was doing anything that necessitated two hands, just call me earth mother. I nursed my babies, made homemade baby food when it came time for food. What can I say? As much as I love earning a paycheck and being a nurse, I wanted to stay home with my babies.
Once we had AJ my hubby made note that I did not have a baby with DS—his statistics were right. I queried; do you want another child? Then the jury is out. We will have a child with DS. I took a course to become a childbirth instructor early in my second pregnancy. AJ would help me set up the room. We talked about babies. We started reading picture books about having a new baby sister or brother. We did all we could to prepare her for the event.
There’s nothing like reality for helping a child learn about what it means to have a sibling. This new baby was nothing like the quiet, calm, content first baby. I told hubby, if all babies were like AJ, I would have half a dozen, knowing full well that not all babies were alike. My mother used to say to me that she hoped and prayed I’d have a child like me. This was not meant as some sweet blessing. This was always said when she was exasperated with me.
I was determined not to sideline AJ, push her away when I got busy. As it turned out when baby number two arrived, we discovered we would indeed be very busy. A commercial once said, “It’s not nice to fool mother nature.” And so, this time around I said the infamous words, “I told you so,” after Sheila’s birth. He discovered his statistics were meaningless. I was still under 35 years old when the number jumps from 1 in 1000, to 1 in 400 chances of having a baby with DS. We learned statistics are a funny thing. In reality you have 0% probability or a 100% probability of having a baby with DS. As much as it was a shock to be right, I wasn’t really surprised.
By the time Sheila was 6-weeks old she was enrolled into an Early Intervention program. We would be having a SEIT (Special Education Itinerant Teacher) services for 2-hours a week and OT (Occupational Therapy) services 1-hour per week. I scoffed at having SEIT coming in for two hours in one lump of time to provide services to a six-week-old baby. But it was in the days when we had to go through Family court to get services, and we had no choice with what services would be provided and how they would be provided.
The upside was when the providers were working with Sheila, I would set AJ up with activities nearby and I would position myself so I could pay attention to what they were doing at the same time I was coloring with Andrea. The teacher, in particular, was very good at involving AJ in what she was doing to. Sheila, baby with a heart condition—a massive hole in the center wall, would fall asleep 30-35 minutes into that 2-hour chunk of time. The teacher would talk to me about games to play with Sheila, even better, she would show AJ how to play with the baby.
The power nap would last about 20-30 minutes and Sheila would wake up, so the teacher would encourage AJ to use her new play activities with Sheila. It was several months later the teacher came in and confessed that I intimidated her, because I was already doing the type of stimulation activities, she was supposed to be teaching the family. The OT and teacher were lovely to work with and they both made sure that AJ was not ignored. Since Sheila tended to be awake for a bit and then do the power nap thing. I made sure that Sheila’s nap time was dedicated AJ time.
AJ was in a weekly playgroup, so I would have my parents come and watch Sheila for the morning of playgroup. I was careful to not schedule anything on playgroup mornings, that was sacrosanct AJ and mommy time. I needed it just as much as she did.
AJ was 22-months old when her baby sister interrupted her world. She was a bright, happy child, but she was not talking. She had said a few words. Her first word being, “owl.” She loved a book called Owl Moon by Jan Yolen. One night we were coming into the house after dark. There was a large full moon hovering low over the house and all of a sudden, we heard a haunting hoooo hoo hoo hoo hoooo sound coming from the woods behind the house. She was dozing on my shoulder. She perked right up, whipped her head around to stare out the sliding glass door and said, “Owl. Hoo hoo.” Yes, there was no sweet mama, or dada for her first words. It was owl and hoo. The power of reading to your children.
AJ would finally start talking at 26-months old. I suspect she could have talked at a younger age as when she started talking, it was in full sentences of five and six words. Sometime after she started using words, she wanted to put her own shoes on. We were on the floor of her bedroom sitting on my lap. As she was casually putting a shoe on her foot, she glanced back at me and said, “Mommy, do you know God is inside of us?” I made a non-descript sound, not wanting to interrupt her thoughts. She went on, “He’s outside of us, too. You know he is all around?”
Is it any wonder she grew up to become the irreverent reverend? You may visit her irreverent reverend blog on Substack by clicking on the underlined link in the prior sentence.
Upper Left: Now a master at playing with Sheila. Upper Right: or showing Sheila a new skill of shucking corn. Lower Left: First day of big school for Sheila. Lower Right: And then there were three, new baby sister, Colleen-3-days-old (c) 1991-92









“Mommy, do you know God is inside of us?” I made a non-descript sound, not wanting to interrupt her thoughts. She went on, “He’s outside of us, too. You know he is all around?”
I love this sooooo much.