Thursday, December 10, 2015

Two Of A Kind!

In 2012, when our family lived in Maryland, I wrote a post on June 1, 2012 about then 22.5 month-old Orion titled, "There's No One Like Orion" and talked about "Orion Syndrome".

Now I can say there's two of a kind!

There are pictures of both Orion and Clarisa here and I will tell you who is who at the end of this post.
Beautiful baby #1
(Image description: Seen from the chest up to the head, a white haired day-old infant, eyes shut laying atop a textured blanket.)

Beautiful baby #2
(Image description: Seen from the chest up to the head, a white haired infant, eyes shut, a pink binky lays nearby.
In Wisconsin on June 30, 2015, a Deaf couple, Justin and Rachel, who we knew from our days in Maryland, gave birth to their fourth child.  Their new daughter, Clarisa Delilah Vollmar, was born with amazing white hair and her eyes were yet to be seen.  Our mutual friends were immediately busy tagging the adults of both our families on Facebook.  What are the odds of two families, each with a DeafBlind child with white hair born years apart in different geographic locations, knowing each other prior to the arrival of Clarisa?  The Vollmar family knew of Orion when he was born, too! Our older kids played together occasionally before the Vollmar Family moved to the midwest when Orion was around a year old.  Who knew the circumstances of Clarisa's birth would reconnect us?

After my first reaction of shock learning that there was another kid exactly like Orion in Clarisa, I was so happy for Clarisa and her family.  My joy was flavored with knowledge of the challenges that lay ahead of them as our family started traveling on our path with Orion almost 5 years before (Orion turned 5 on July 19th, 2015).

Photo #3: A swaddled baby burrito!
(Image description: A baby's head is covered in a fashionable pink and white hospital cap, is sticking out top of the "papoose" wrap, along with a hand peeking out.)
Separately, I showed the picture Clarisa's parents posted of her on Facebook to Orion's big siblings Skyler and Anastasia. When asked who that picture was of, both replied, "Orion."  They were so surprised and amazed, too.  Someone like Orion?!

Even to us parents, it's remarkable how similar and gorgeous our littlest ones are.

Genetics

Back in 2012 we learned from our NIH National Eye Institute visits in Bethesda, Maryland which genes had a part in Orion being deafblind.  From that, we learned how it was that the rest of us were deaf, except for our hearing daughter. I will share more in a separate post.  Clarisa's genetic story may or may not be similar, but looking at these kids and looking at both families and the fact there are Deaf siblings, the answer seems pretty simple: the same genetic dance happened for her.

Challenges and Joy

The seas of raising a DeafBlind child is not easy, our two families will have a lot in common, yes, and our children will guide us on their own journeys that may look very different, or actually parallel in experience. Every DeafBlind child, even with similar etiologies who could pass as cousins or even siblings as seen here, is different!

Photo #4: Another swaddled baby burrito!
(Image description:  baby's head, covered in a fashionable pink and white hospital cap, is sticking out top of the blanket wrap, laying content in the newborn warmer.
Talk about the discovery of the final frontier!  Gathering information* without our distance senses (sight/hearing)!  Exploring the dark depths of our oceans, mysteries of the human mind, putting ourselves in the perspective of our young children, as well as learning of strategies, information and experiences of the parents, friends, role models and professionals who "sailed the seas" before us.  We have first row seats experiencing the little, yet burning magnesium bright, accomplishments of our DeafBlind children.

*Gathering information: The best in-a-nutshell description of deaf blindness I've seen is that it's an information-gathering disability.

Identities in the photos:
#1: Orion
#2: Clarisa
#3: Clarisa
#4: Orion

Clarisa's dad, Justin, put these photos together side by side to see if friends could tell the two kids apart.

(Image description: Text on top reads, "Can you guess which is Clarisa or Orion?" Two head shots of two separate newborns wearing blue/white/pink striped hospital caps. The one on the left wrapped little fingers around an adult's thumb; the one on the right is being kissed on the forehead by a female.)

Orion is on the left, Clarisa is on the right.

3 comments:

  1. I can tell look eye and nose 2 babaiee different yeah easy to catch them who his parents..no plm there no misundy..i knee whats look like faces easy can tell both..i have good sense read their faces..allrigjt both are beautiful and cute..God blessing U All..

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  2. Unknown ohhh sorry this is me KATHY TAYLOR OOPS..That i wrote above ok

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  3. Glad you involved with your child need to feedback when Orion looking different than Clarisa. I am sure you learn lot to patient with your baby. Lot of challegne for hearing and deaf parents often keep their baby. They are so unquie family to taught you. Thanks Clarisa's family know what to do with ASL brilliant is very important to communicate. She will be smart and Orion will smart if you raise him better and taught you how to dealing with D-B. Deaf community love deaf-Blind wonderful unity lot. Hope you keep faith to feed with their parents.

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