In the fall of 2022, an e-mail came through that the creators of the social media-based disability parenting community, Extra Lucky Moms, planned to publish a book for mothers new to the journey of raising a child with a disability. This of course piqued my interest, not only because writing is central to my identity, but also because writing about Hope is pretty much all I’ve done for the past seven years. I contribute across multiple blogs, including Bergen County Moms and Extra Lucky Moms, but here was an opportunity to lift At Her Own Pace from the sometimes flighty web and place it lovingly and intentionally onto the printed page…tempting!

Fast forward through a few whirlwind weeks and my letter was accepted for printing alongside twenty-seven other moms’ experiences in a book titled Dear Mama: Stories of an Extra Lucky Life.

You know that I write about Hope a lot, like a whole lot, and for a really long time now, but I don’t share much about Henry, her little brother, or our experience raising him. He also has a disability, born with upper limb differences, having had surgery for his thumb hypoplasia when he was 22 months old. He was also recently diagnosed with moderate scoliosis and will undergo an MRI of his spine, an echocardiogram, and a renal ultrasound within the next several weeks. We’ll be in and out of the city for a while during this initial diagnosis phase, receiving care at the Hospital for Special Surgery on the Upper East Side and adjusting to life in a brace.

So why on earth don’t I write about him?

Frankly, I don’t know. When Hope was diagnosed, I had next to zero experience with disability. Everything about her was new to me, from infant surgery to therapies, navigating insurance and advocating for her in medical settings where her life was quite literally on the line. Raising Hope has changed the course of my life, and while that shift was just beginning, along came Henry with a special story all his own. There was no time to really think about why we were doing what we were doing or how we were doing what we were doing. We just did what needed to be done, and over time we found our family had gone from surviving on a life raft to standing firm on a solid new foundation of hard-won knowledge and experience.

This foundation is what supports my letter in Dear Mama. I wrote about a mother’s need for community, as well as some specifics on learning about Henry’s arm in utero and the first few days with him in the hospital. Putting a small piece of Henry’s early story down on the page was a beautiful way to validate his experience as an important piece of our family’s narrative.

The other night, I had the pleasure of meeting virtually with the other authors included in Dear Mama. We were encouraged earlier in the year to follow each other on social media, but most of our accounts don’t tell even the half of what has shaped us as moms, so having this time to put faces to names and learn backstories was such a gift. Whatever concern I may have been holding onto regarding the viability of this book has absolutely cleared—in the words of its editors, “You’ll get to hear the good and the hard, the very raw feelings but also a whole lot of hope.”

Dear Mama is finding its way into the hands of moms new to diagnosis, pregnant moms via birthing centers, extended families, universities, public libraries, and bookstores. Do you have someone in mind who could benefit from having Dear Mama in hand? Here are some ideas of who may be interested in receiving a copy:

• a mom or family member of a mom raising a child with a disability
• medical professionals of any type in any field
• students and faculty, for example in medical sciences, psychology, genetic counseling, or social work
• a parent who has experienced child loss due to disability or who is lacking community due to a rare disease diagnosis
• public library, local hospital, or house of worship

If you choose to order a copy, please consider using my affiliate link. Every last cent of the 5% proceeds I get from your orders will go directly to Hope’s National Down Syndrome Society NYC Buddy Walk fundraising page in one lump sum donation closer to the walk date in September.

Thank you as always for your support!