I am a farm girl at heart. A farm girl who grew up in a megalopolis and who needs painted toenails and fifteen pounds of ethnic necklaces around her neck. I’m only slightly exaggerating about the weight of the necklaces … thirteen’ll do me. Instead I live in a small suburb of a small metropolis with lots of open space nearby, so I get my fix.

My two sons are incandescent and just shy of two years apart, both born in June; we joke September is my fertile month. Our eldest is a spitfire and too bright for me; he keeps me on my painted toes. Our youngest has Exceptional Needs and it is really his journey which has / is shaping me as a mother, as a woman, and mostly as a human being.

He is considered a Medical Enigma: that is, modern medicine does not understand the genesis for his multiple medical disabilities (last count: twenty-nine known) nor do they know how to provide tonic therapies. He does have multiple diagnoses, the primary medical most likely being Continuous Spike-Wave during Slow Sleep Syndrome (CSWS). Within a six-week span shortly before he turned three and a half years-old we believe it induced a catastrophic regression in which he lost all his ADLs (activities of daily living). Back in a diaper. Unable to assist in his dressing / undressing. Finger food or we spoon-feed him. Acquired absolute global aphasia, which means he has neither expressive nor receptive language skills: he can no longer speak or sign or draw or write (not that he could write before, in all fairness); he can no longer understand the spoken or signed or written word. We don’t understand his world, and he clearly doesn’t understand ours. We’re trying. We’re really trying. We love him so. He loves Patty Shukla’s signing songs, Weston Woods’ version of “Chicka Chicka Boom Boom” and watching Glee’s version of Lady Gaga’s “Bad Romance.”

Our Little Angel is the purest person I’ve ever met. Due to the severe brain damage this CSWS has most likely induced, he is a simple baby in a growing boy’s body. He has no concept of manipulation. He wants to be cuddled, to be sung to, to eat (oh my god does he love to eat — genetically mine, after all!), to be bounced on the trampoline, to be manipulated through warm water, to swing, and to ride his horse. Oh to ride his horse, esp to trot. In order to ride he requires two sidewalkers and a horse leader.

riding horse slp hippotherapy

As a little girl living in London (England) my parents had me take equestrian lessons — the pictures of me are darling with my towheaded self madly scowling, clearly hating riding. I’ve never been a Horse Girl. But my Little Angel is a Horse Boy, so I’ve become the horse enabler. I enable his horseback riding.

I don’t drink, smoke or do drugs but I do eat my feelings in chocolate.

My motto is borrowed from the Yiddish idiom: “Dare to pick the fruit of every tree.” I’ve climbed the tallest mountains and the pyramids. I’ve lived the world over. I’m a polyglot. I am a hardcore people person. I love people. I love communicating.


2 Responses to About

  1. I enjoyed your blog. It is truly a different world for us moms with our kids. After my daughter was born with Down syndrome I found a deeper purpose for being here. I can relate to others who have no clue of the difficulties we face on a daily basis. Being a single mom, I find myself overwhelmed a lot and sometimes wonder when it will get better. It helps to connect with others who are on the same path.

  2. jodibuchan says:

    We are comrades with children who horses speak to. Thank you for sharing.

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