What’s normal?

My family….  Rob and I met at Va. Tech and married soon after I graduated.  He had another semester and summer to finish college, and we spent the summer after we got married in Blacksburg tubing down the New River in Blacksburg on weekends while he finished school. I remember him as a skinny guy with thick dark hair in a flannel shirt and jeans.  A favorite early memory is the time we were stranded on a mountain road when my car broke down on the way to a weekend trip to Lynchburg.  I have this picture in my mind of Rob sitting on the hood of my car playing the guitar; enjoying the scenery with no worries in the moment.  I loved him.  We got married.  I started teaching sixth grade in Fluvanna.  He was the school social worker in the county while going to grad school at UVA to become a middle school guidance counselor.  He got a job as a guidance counselor at the same middle school where I worked as an 8^th grade English teacher.  We started a family soon after college and eventually found ourselves running after 3 rambunctious boys who loved building tree houses, forts in the woods, digging muddy pits in the backyard, and playing Little League sports.  I spent summers pitching to my sons in the corn field by our home and running them to Little League games, not to mention getting them to VBS weeks at local churches.  We lived in the country, and I’ll never forget the nights I spent teaching the neighborhood boys how to make a quilt at a sleepover during VBS week as a project after a campfire in the backyard.

Did I mention snakes?  Yes, I did not realize when I married Rob that his stories of loving snakes and going to nature camp growing up might transfer to acquiring one or more in OUR household.  He loved snakes and looked for them in the woods growing up while digging for old bottles as a teenager.  So, as my 3 boys were growing up, we had snakes… a boa constrictor, “Spike” the ball python, and several other snakes, like the “beautiful” king snake, rat snake, hognose snake, black snake, corn snake, all in cages in the basement.  The rule was the snakes had to be in the cages when Dad was at work.  I remember the day my son, Dylan, was riding a bike outside with “Spike” around his neck.  He ran inside the house while I was vacuuming, put “Spike” on the couch, picked up his left-handed glove, and ran out to play baseball with his brothers and the Chamberlain twins across the road.  I turned off the vacuum cleaner and looked at “Spike”.  Rob was at work.  I didn’t touch the snakes.  Was our house normal?  With a snake on the couch?  What’s normal?

Then we had Erin who had Down syndrome…a Feathers girl born into a long line of boys.  She was medically fragile at birth with a two-chambered heart that would need surgery as soon as she was 10 pounds and could go on the heart-lung machine.  She reached 10 pounds and had the big heart surgery…survived RSV…thrived and was adored by parents and brothers.  She walked at age 3.  When she found her voice, she grew in volume as she gained strength.  Meaning, when she found her voice, she expressed herself loudly and with great repetition.  She had no filter and figured things out in self-talk with whatever volume was required to work through frustration or solve a problem.  I frequently woke up in the middle of the night with Erin pressing her nose against mine saying, “Erin, be nice to friends,” after a day when she yelled at a classmate, or “Be nice to Mrs. Scarborough,” after an incident of sensory overload where she hit the classroom aide and added, “Erin, we love Mrs. Scarborough,” with deep conviction.  Erin never went to sleep easily and seldom stayed asleep all night.  She wrestled with being both exhausted and overstimulated.   Getting her to go to sleep would take hours and she woke up early.  We laughed with our grown kids at the beach this past summer as we remembered the days waking up to Erin staring intently at the sleeping person from the doorway trying to keep herself from blurting out, “Erin, be quiet!  Daniel’s sleeping!” before slamming the door.  When she was in your doorway, you felt her presence before you opened your eyes and heard her voice.  Her presence day or night commanded our attention.

Erin was developmentally about 3 years old with the determination of a 15-year-old when it came to independence.  Having a child who was tall enough to open the front door to get out of the house and walk down the road but who could not identify this action as dangerous was a constant concern.  We had older sons who had friends coming in and out of the house.   We had a chain lock near the top of the door with a sign that said, “Please lock the door.” If she ever got out without us with her, which was not often, she might go in a neighbor’s house and sit in a bedroom or closet. Once I had to go inside a neighbor’s house when they were not home to find Erin sitting beside their Great Dane on the couch.   Whatever she had experienced, she would repeat. If a neighbor invited Erin inside to visit, she might return to that location unannounced or when they were not home.  It became a new pattern, so we had to be careful not to create new pathways we could not supervise.  We lived on the property of Fork Union Military Academy during her life in academy housing.  (God bless our neighbors!)   We lived across the street from a pond, which was beautiful in the early morning light with a cup of coffee in hand sitting on our deck.  There was never a concern Erin would go to the pond, as anything that was not introduced to her did not become a routine or repetitive pathway.

Anyone who knew us got used to Erin saying, “Shut up!”  “Stop yelling, Erin!”  “You need help tying your shoes, Erin.  Ask Mom.  Great idea, Erin.”  I loved hearing, “I love you, Erin”, as she went to sleep at night, or “Aww!  I love you, too, Erin!”  in response to herself.  Rob’s mom often said Erin would never be lonely because she always had Erin.  The important lesson about living with Erin was knowing that normalcy was defined by the statement, “It is what it is.” Our lives were both predictable and cluttered with new issues with Erin that frequently surfaced.   Without a big discussion, we adjusted to what was required and worked together to do our best to help make daily function and coping (mostly with the sensory environment) easier for Erin.  A sense of normalcy would plateau until the next issue would present, which would mean we would adjust around what she needed and continue with life as usual.

Our sons’ friends learned how to interact with Erin.  Kyle bantered back and forth with her with strings of nonsensical syllables.  The big boys with lax equipment sitting by the front door and smelly shoes after practice became the dress up clothes of Erin and Diana.  The boys who grew up with my boys over the years at Fork Union-and having brothers- all had a hand in scaffolding developmental milestones for my girls.  I smile remembering the Berizka Basketball Bashes to raise money for therapy equipment in Ukraine with area youth groups after we adopted Diana and the evenings spent in our living room with a certain FUMA basketball player and our sons walking in a circle with a hula-hoop attached to Erin to teach her to stand and walk.  And…seeing her finally walk!  Diana, who also has Down syndrome coupled with a caring heart, was always close beside her to provide reminders or encouragement.  I remember the day Diana said, “Erin is older than me, but I am the older sister.” 

So, was life normal?  No… Yes.  We learned to go out to eat at sports bars that were loud, so it didn’t matter if Erin yelled.  We learned to ignore occasional looks in public when she was struggling and to just relax with what we could not control.  The times between episodes where Erin was “in sync” were filled with giggles and finding enjoyment in the small things in life.  Though there were times through the years when Rob and I looked at each other and said in jest, “Our household is not normal,” looking back today, we would not change a thing.  For our family, the daily life experience has left its mark on our hearts and minds and is now woven into our perspectives on many things.  Maybe we have a bit more tolerance and apply a broader lens to people and issues.  Rob and I have lived life richly with family that we gave birth to and others we claimed as ours -loud, honest, and real. So, for today, I am grateful.