“I don’t do Facebook,” Connie would say whenever I would share the latest drama or dust up on that platform. Where would she have found the time between her epic tours of Europe, her family and banging heads together all over the internet? No mere keyboard crusader, Lilady insisted I put her in touch with Melody Butler from Nurses Who Vaccinate to help in any way she could with her drive to collect and distribute baby supplies after Hurricane Sandy hit New York. As Science Mom at Just the Vax tells:
Lilady had a severely developmentally and medically disabled son whom she cared for with the deepest love and commitment I have ever known. She became a fierce opponent of state mental institutions that cruelly warehoused special needs people and fought tirelessly for their closure. She was the original Mother Warrior. Through her trials and tribulations along with other parents of special needs children, she “adopted” the son of a friend whom she helped care for until Lilady passed away.
There isn’t much I can say that hasn’t been said about Lilady, the stalwart of the Respectful Insolence comments section. She was fierce. She was warm and she was a friend. We shared photos and stories via email and phone calls that became a source of amusement in our house. “I’m going to call Connie. I’ll only be five minutes.” My husband believed that statement only once. It was never just five minutes but always felt like.
She was a guiding light – not just as a formidable battler of BS that one could strive to emulate but never equal but as a mother who knew well the joys and struggles of parenting a disabled child. She made me feel like I was doing something important by writing this blog. My attentions have been diverted elsewhere as the Pwd’s needs have changed and cuts to services have impacted our lives. I’ve neglected blogging for a while and, it hurts to admit, I have not been as attentive a friend as I once was. I hope, if she is anywhere, she will forgive me.
The overwhelming majority of parents I know who have children with severe and profound developmental disabilities, love their children deeply… work tirelessly to change the system, to fight for increased funding/resources for in-home and out-of-home respite care…
And yes, these activist parents advocate for alternative living arrangements, nearby, “right at home, right in the neighborhood”, commensurate with the individual needs of children and adults born with developmental disabilities…so that they can live out their lives with dignity and participate in society.
Her own words describe the Lilady I knew perfectly. I will follow in her foot steps with renewed vigour.
Connie, you were a champion. My heart breaks that I’ll never hear you call me Martine the mobster again and that the Pwd can’t sing his new songs for you. That can be nothing to the grief those who held you closer must feel and to them, this family across an ocean, sends love and deepest sympathies. Rest in peace, Lilady RN.
More tributes can be found by following these links:
In Memoriam: Lilady – Harpocrates Speaks
In Memoriam: Lilady – Respectful Insolence
In Remembrance of Lilady – Just the Vax
Lilady RN – A Memory of a Passionate Vaccine Supporter – Skeptical Raptor
The people thought you were immortal – EpiRen at Medium.com
Many of Lilady’s friends and fans are donating to Shot@Life in her memory. Shot @ Life is “A movement to protect children worldwide by providing life-saving vaccines where they are most needed.”
Thank you. I have been in tears since I heard.
“I don’t do Facebook” and “I’m going to be offline for a few hours” were the things I heard from her so frequently. We should all try to get together to be “online” to fulfil her mission. Not every hour, but at least every week.
Lilady was – is – an inspiration. The knowledge she shared and the example she set is still out there to learn from and enjoy. As sad as I am, thinking of when she and EpiRen cornered Bob Sears over the measles outbreak at Huffpo makes me chuckle.
I miss her greatly. She had a warmth to go along with her fierce devotion to advocating. Her love for her son (and her “other son”) were always present.