Love is Being an STXBP1 Grandparent
Grandmother Helen and Granddaughter Juno
When Juno was born, my son kept insisting that something was not right. I just chalked it up to the stress of the birth, the sleep patterns of a new baby, the worry about how his 3 year old son would handle a new sibling and the worry about his wife’s recovery from a C-section. Knowing my son and knowing that he is a worrywart, I pushed it aside. However, somewhere in the back of my mind I always remembered what he said and would constantly remind him, as Juno grew chubby and cute, that she was FINE. Doesn’t she hold her head up? Isn’t she smiling? Isn’t she babbling? But that niggling voice in the back of head said why isn’t she rolling over? She should be rolling over. Then I would live in the moment, play with her and her brother and tell myself to stop worrying. All kids roll over eventually, right? All kids learn to talk, right? What are the chances Juno won’t develop into a typical child, albeit at her own pace?
As months went by and Juno missed more and more developmental milestones, the worry turned very real. My son and my daughter-in-law turned over every stone to discover what was causing Juno’s developmental delays. And then she had a violent reaction to eggs. Allergies. To eggs, nuts, soy and dogs. Her allergic reactions became a focus and her other issues took a back stage for a short while. After a genetic test, Juno was finally diagnosed with STXBP1. As a grandmother, I tried to hide my sadness and tears. I cried for not only Juno, but for her mother, her brother, myself and for my son, who saw that something was not right the day she was born.
As a grandparent that lives in the next town, I have been able to be a “presence” in the lives of all my grandchildren, including Juno. But now, as she has gotten older and bigger, I can no longer pick her up, or change her pamper. I can – and I do – bake eggless treats for her – try to sing her favorite songs – and just recently spent a morning with her for the first time in a very long time (Covid!). She loves my dog, playing with balloons, bouncing balls and tapping away at her iPad. She hugs me, kisses me and kisses my dog!
As Juno approaches her 8th birthday, I feel the urgency to do more than bake muffins and fake the lyrics of Moana when Juno points to me to sing her favorite song. What can I do? What can any of us do?
As a former fundraiser, I know what to do. And I am hoping you will join me in doing it. I would like to create a special grandparent group, the Grands Society, that will keep grandparents informed of the latest developments in working to find a cure, helping to raise awareness of STXBP1 and finally to raise funds to support research, clinical trials and the needs of the STXBP1 Foundation.
Are you in? To join the Grands Society, send your email to grands@stxbp1disorders.org and together we can support our grandchildren and each other.
-Helen Rigby