3 years old
Hermosa Beach, CA
Warrior #232
I remember watching my eldest daughter skip down the street, thinking how quickly she had gone from a little baby to a happy, silly, talkative 3-year old, and how I missed the days when I could fit her in the crook of my arm. I rubbed my belly, excited to have all those days back with the soon to be birth of our Daisy-bear. Little did I know then that our journey with Daisy would be so different from what we were expecting.
We first realized something might be different when we introduced solid food to Daisy. Instead of gobbling down the avocado and sweet potato, Daisy let the food pool in her bottom lip. We shrugged and thought maybe she needed a little longer to find her love for food. But a few months later it was the same story. Our pediatrician didn’t seem too concerned and steered us to a food therapist. Thus began our long journey from therapist to therapist trying to figure out why Daisy wasn’t eating, why she was missing her benchmarks, and what exactly we were dealing with.
In 2019 we took her to UCLA to get a genetic test and learned that she had SYNGAP1-Related Disorders. My first emotions were a whirlwind of disbelief, despair and confusion. We had just had our third daughter, and the life I had been imagining with my three girls – all the things we would do! – felt like it had just been snatched away.
A lot of families get the poem about landing in Amsterdam, not Paris. My husband and I felt alone and struggled to understand what was happening – we really wanted to be in Paris! It took us a long time to appreciate Amsterdam. However, once we found the CURE SYNGAP1 community, we began to feel a hope we didn’t know could still exist. The community was so welcoming, so knowledgeable, so supportive and so kind – that I finally began to feel that the life I thought had been out of reach was possible. I participated in every study that Daisy qualified for that they sent out. We’ve signed up for every registry and have visited the SYNGAP1 Clinic in Colorado and have an appointment at the Stanford one next month. When I can, I volunteer for CURE SYNGAP1. Being part of this community is what gives me strength, courage and most of all hope.
Some days are harder than others, but Daisy has shown so much growth and has grown into such a funny, sassy and incredibly happy little girl. I don’t think there is a more beautiful sound in life than her laugh. So pure and joyous. She loves the beach and will run in and out of waves like a little fish, happily shrieking with joy each time. She loves to run into our room each morning, jump into bed, lay her head on top of mine – our own personal snuggle time. She loves being with her sisters, just luxuriating in their presence. It is different from what I had imagined, but we are able to do (almost!) all things I thought we would. We watch movies together (Daisy watches her favorite song videos on the Ipad but she sits on the couch with us!), we go out to lunch (always with a place for her to sit on a bench, not a chair), we go to the park (we run after Daisy when she makes a break for it!), we go on drives (Daisy loves the car) – all things that I didn’t think we could do at first.
My advice for anyone who is navigating life with a beautiful Syngapian is this – it is hard, but you are not alone. Reach out when you can, but take the alone time too. Sometimes I am super in, and sometimes I retreat. There is no right way to find the joy, and find the space to grieve. There is so much beauty in watching Daisy become the person she is – her pure joy when watching her Baby Shark songs; her sly little laughs when she gets caught grabbing a cracker she knows she’s not allowed to have; and her demand for head “bops” – placing her forehead on mine and closing her eyes. Her way of saying I love you when she doesn’t yet have the words.
