Your Baby Can Come to LMNOP

I first heard about GiGi’s from a patient. I’m a family medicine doctor and during a routine visit last fall, one of my patients mentioned an upcoming fundraiser she was participating in for GiGis Playhouse Lancaster – did I know about GiGi’s? I didn’t. She raved about the programs and said I needed to know about it for any patients or families with Down syndrome. She told me how lucky we are to have the only Playhouse in Pennsylvania, right here in Lancaster. I listened with increased interest because unbeknownst to her, I was about 13 weeks pregnant, had just had an abnormal screening test, and was anxiously awaiting more definitive testing for trisomy 21.  

When my son’s diagnosis was confirmed a few weeks later, I started following GiGi’s Playhouse Lancaster on social media and listened to an interview with the founder Nancy Gianni, on the “If We Knew Then” podcast. It was all pretty overwhelming. As a physician who takes care of pregnancy, newborns and families, I had some, but not a ton of familiarity with Down syndrome. I had taken care of only a handful of patients with Down syndrome over the years. I knew about the most common associated medical challenges, and I knew there had been lots of positive changes over the past few decades in the lives of individuals with Down syndrome. My husband and I were accepting of the diagnosis, but I still worried a lot through the pregnancy- that he would need surgery, that he would be born early or need the NICU, that he wouldn’t be able to nurse (I am a breastfeeding medicine specialist so I felt this intensely), that he wouldn’t hear well or speak clearly or sing in tune, that his life as an adult would be challenging and his older brother might be overburdened.  

One of the things I worried about most, ironically, was that I would struggle to connect with the Down syndrome community and other parents. I sensed some general disdain for/ distrust of the medical system in some of the pregnancy groups I joined. This is somewhat understandable, given the dark history of institutionalization and medical neglect of this population, but still I felt stuck in this chasm between the medical world and the parent world, concerned I’d struggle to find a support network. I casually followed GiGi’s Playhouse Lancaster, looked at event photos and plans for their big move to the new Playhouse building. I told myself I’d get there eventually, but I wasn’t ready to jump into the world yet, worried I wouldn’t find my place.  

Arthur Wendell “Artie” was born full term, 9 lbs 1 oz in March 2024. He was strong, healthy and nursed remarkably well. I took a slow deep breath as some of my worries melted away, and he filled our lives with love. A few special people helped us through his birth and immediate postpartum experience. My primary labor nurse shared that she had a younger brother with Down syndrome and remembered being at his birth. She spoke with such admiration about how he enriched her life. One of my postpartum nurses rode the emotional rollercoaster of early newborn care with me, put up with my tears and demands, and kindly shared her own experience with her now two-year-old daughter with Down syndrome, who participates in programs at GiGi’s. She also made sure I received a yellow welcome bag from GiGi’s Playhouse Lancaster. 

Inside the bag, there were letters, a few from parents, but one was especially striking. It was from Monica, an adult self-advocate with Down syndrome. She congratulated me on the birth of my baby, told me she loved swimming and exercising with GiGiFIT and invited my baby to LMNOP. I remember thinking a few things when I received that bag with her letter. 1) her handwriting is way better than mine 2) I also love swimming and 3) I guess I need to figure out what LMNOP is. 

I made it to my first GiGi’s program, the June Language Music ‘N Our Peeps (LMNOP), about three months later. Artie slept through most of it, but as soon as I walked in the door, I felt welcome. It was a kind, relaxed vibe and the room was full of joy. People from different worlds connecting, caring about each other. Siblings playing together. The space and the purposeful programming was so impressive to me. I couldn’t wait to bring my older son to play- in fact, I brought him back the very next day for a New Family Orientation and had trouble getting him to leave. We returned the following month for LMNOP outdoors with water play and again for the Grandparents Day celebration. Each time, we’ve had engaging conversations and made connections with the variety of people who find their way in the door, brought together by loving a person with Down syndrome.  

My four-year-old proudly sports his GiGi’s T-shirt (which a volunteer kindly gave us when he didn’t have a change of clothes after water play) and is psyched whenever we say we are going to GiGi’s. He’s enjoying learning signs! To him, Down syndrome is just something about his brother and somehow connected to this awesome place with other babies who look a little like Artie. He asked me if he had Down syndrome when he was a baby.  

It’s incredible that his first conception of this world is such a positive one.  

Having those touch points when I was so vulnerable and receiving a handwritten letter from an adult who loves her life, brought me such peace and comfort during those challenging initial days. I am incredibly grateful for that gesture. I also requested some welcome bags to take back to my own hospital where I round on the postpartum unit so that every new parent can feel the same support and care I did, and be personally invited to the GiGi’s community. I encourage anyone who is new to this world and feeling a bit out of place to remember this: there is no typical family or individual with Down syndrome. No matter your background, you will find your people and there is a place for you here. I am often reminded of a song by Jimmy Dorsey and Paul Madeira that my mom, a jazz pianist, often plays, and I now sing to Artie with slightly modified lyrics:  

“In this world, of ordinary people, extraordinary people, I’m glad there is you. In this world, of overrated pleasures and underrated treasures, I’m glad there is you. YOU live to love, I love to live with you beside me. This road so new, we’ll muddle through with you to guide me.”  

We are glad for Artie, glad for GiGi’s in our community, and glad there is you!  

Written by Hayley Ryan, Arthur’s mom 

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