(“Stop the presses! My article made the Buffalo News, My View column! 🌟 If you’re reading this twice… 🎉 Sorry for the déjà vu!”)

My training for a Doctorate in Motherhood (Mh.D) began in 1982 when I delivered our first child, Jessica. Our daughter was born with a rare chromosome deletion and a Ph.D.-level syllabus of challenges. Before long, in 1984, we added our son Alex to my training, and finally, in 1987, our daughter Carly was born. I was running a full-time crash course in chaos management and sleepless nights—graduating with honors in trying to hold it together.

Training

Raising three children is the most fundamental, frustrating, fulfilling, humbling, selfless, and loving job I will experience. Training started the day I gave birth. Of course, there are books, well-meaning advice, nosy neighbors, and intrusive family members; however, none matters when you are alone for the first time with a squirming alien who needs EVERYTHING!

As an infant, Jessica received a diagnosis of a severe developmental disability and complex medical difficulties, including a seizure condition. Physicians train for a decade to provide the expertise to care for children like our daughter. Yet here we were trying to figure out how to help Jess become the best she could be, keep her safe, and, for lack of less harsh words, stay alive.

At first, the doctors didn’t know why Jessica was delayed in every milestone. Many years later, as technology evolved, the geneticist identified a rare chromosome deletion, 1Q43-44. The challenges of raising a child with a rare chromosome deletion are immense, from navigating the healthcare, school, and social service systems to managing your kid’s systems. It’s a journey that requires constant learning and adaptation.

Are You A Doctor?

“Are you a doctor?” Yes, doctors ask me that question! That’s how much I know about Jessica. But don’t ask me about other medical conditions—for there, the truth will quickly be revealed. I haven’t a clue. I can talk the talk about seizures, medications, bilateral hip dislocations, gall bladder, and other Jessica medical needs. Ask me anything about Jessica’s chromosome deletion 1Q43-44, where the deletion affects the subtelomeric region of the long arm of chromosome one, resulting in a portion of banding 43-44 missing. Does that sound doctor-y? Just don’t ask for advice about other non-Jessica conditions. Yikes! Please don’t ask me – then you will get all my Dr. Google stuff, which is really not helpful.

Parenting

Parents of children with disabilities and complex medical conditions have an additional responsibility to advocate for quality care in unique situations. Often, families know more about their child’s unique condition than the providers. There is no magic class or degree; knowledge comes from experience, networking with others, research, asking questions, and trusting your gut. Parents find wisdom, strength, and determination in the daily activity of loving their kids.  

Every child is unique and brings a new set of rules. Strategies that work with one child can be epic failures with their siblings.  Although Jessica needed so much support, in many ways, she was also the easiest to raise.  No talking back, no behaviors, an abundance of hugs, kisses, and smiles. Carly and Alex taught my husband and me completely different parenting lessons. They challenged us to be the best version of ourselves. We learned to be soccer and baseball parents, theater and orchestra parents, and many more lessons of a lifetime. And now Jessica is 42, Alex is 40, and Carly is 37; we are fortunate to call them our friends.   

Mh.D.

My Mh.D. training is limited to our children. Jessica pushed me from my Master’s in Mothering to a self-awarded doctorate in the subject of all our children.  My husband Mitch earned his Dh.D. (Doctor of Dadhood) and knows all the same stuff.

I am not unique, and I suspect many readers are now awarding themselves Mh.D and Dh.D’s—congratulations, you earned it!

Vickie Rubin, Mh. D

P.S. Jess and two of her housemates are on day 2 or is it 3 of Covid. (I lost my Covid day-counting skills)- They are all improving – Please keep them in your thoughts – XO

For more moments that will make you laugh, shed a tear, and leave you feeling inspired, discover Raising Jess: A Story of Hope—a powerful, uplifting, and quick read!