Sisters

They met on a Sunday afternoon the day before Erin’s third birthday.

We had left for Ukraine two weeks earlier leaving all of our children for the first time ever for that length of time.  Family friends kept our kids in pairs between two households.  They gathered at our home on occasion during the two weeks we were gone with their grandparents (Rob’s parents) for our children to be together and to feel a sense of normalcy.  Rob’s parents were ever present in their lives and lived two minutes from our house in the same community.  They were frequent visitors for evening coffee breaks on the front porch after work a few times a week.  Rob’s parents worked at Fork Union Military Academy and also ran rescue squad in Fluvanna County for many years.  We’d gather on the porch of our 100-year-old faculty house on route 15 in Fork Union where we lived.  While the eighteen wheelers roared down the highway in front of our house, we’d sit on the porch swing and listen to my mother-in-law tell stories she heard on campus and the Motor Lodge restaurant. We’d lean into her words while watching her pause to exhale between smokes.  I’d keep a close watch on keeping her cup of black coffee filled.

We loved her and hung onto every word.  She was probably the smartest woman I’ve ever known.  She never went to college.  She was the first woman fireman in the county.  She could read people.  You knew if she liked you or if she didn’t.  She didn’t mince words.  My mother-in-law was my best friend and constant companion during the formative years of my children’s lives.  She’d call after supper and say, “Got any coffee?”  I’d stop everything and make a pot.  She’d come over.  She didn’t judge me…or, if she did, she didn’t tell me.   She taught me how to be a mom to a brood of boys after raising four boys of her own.  My boys loved her and knew her phone number before they learned their own.  She played video games and knew the codes of all the games they played before they did.  She’d bate them to go to the next level. She told me that’s how she kept her boys reading as they grew up.  She’d read the books they read and tell just enough of what was coming next to keep them interested.  I didn’t play video games or read everything my boys read, but I did learn from her how to stay really connected to what was important to them.  Later in life, she, my father-in-law, and Rob watched the girls one night a week for more years than I care to admit so I could go to class at Longwood to get my master’s degree one class at a time, which was my leisure and a night I didn’t have to fix dinner or give anyone a bath.  I could eat at Arby’s or Pizza Hut with two of my older sons, who were also students at Longwood.  We’d eat dinner and then I’d go to class.  She and my father-in-law helped me stay connected as a parent to an older group of boys while they cared for my little girls.  I graduated with my master’s degree the same day as my middle son and my daughter-in-law graduated with their bachelor’s degrees from Longwood.

I started assembling a doll house for Erin’s birthday before we left for Ukraine to find a sister.  We didn’t preselect a child.  I had in my heart that this new little daughter needed to be about Erin’s age and needed to have a name that her birth mother gave her that could translate easily to an English name.  We had a daughter with Down syndrome.  She was eight years younger than her youngest brother.  Our three boys had each other.  It’s important for siblings to have each other in life.  Our three boys would be grown and off to college by the time Erin was ten.  Erin needed a sibling that was closer in age to grow up with her.  Rob and I felt like that was somewhat of a selfish reason to adopt a child, but then Erin needed a sister as much as the new sister would need a family.  Daniel and Dylan were in high school.  Daniel said Erin needed to have a sister to see the world as she saw it.  Kyle was in elementary school and said we were getting a sister for Erin and he’d never even had a dog.  We got a Jack Russell for Kyle before we went to Ukraine to get a sister.  Boy, was it complicated to figure out what all the kids needed, but we tried!  The Jack Russell was not the best choice of a dog for a family who lived on route 15, which was a busy highway.  The dog was adopted by another family we knew soon after we adopted our new daughter, Diana.

We left instructions with Jack, my father-in-law, to put together the doll house for Erin, so she would have a great present for her birthday.  I had ordered it two weeks earlier.  I wanted Erin’s third birthday to be perfect upon our return with her new sister. Maybe I was preparing Erin to share us with another little girl.   Jack spent the two weeks putting together a doll house for Erin that was much more complicated to assemble than we first thought.  The kit arrived in the mail with tiny wooden Williamsburg blue shingles and white trim that had to be glued on piece by piece just days before we left for Ukraine. 

Everything about that first trip to Ukraine is now a whirlwind in my memory, and especially the last full day of the adoption process.  We left the courtroom in Kyiv with Diana in a pink snowsuit on a snowy Thursday afternoon.  We went to the medical center and received a medical release in a sealed envelope that could not be opened.  We hurried to the American Embassy in Kyiv to get the final paperwork to leave with Diana.  It was two months after 9/11, and armed guards rushed to our taxi when we arrived because no vehicle was allowed to stop in front of the building.  We left later that night with another family who also had adopted a child with Down syndrome in a van with a driver who spoke only Ukrainian and Polish.  We had no translator at that point.  We headed for Warsaw, Poland, for a 15-hour van ride that would last through the night.  We had an 11 o’clock appointment the next morning at the American Embassy in Warsaw to get Diana’s visa to come to the United States.  I remember there were no seatbelts in the van, so I leaned my shoulder against Rob with Diana on my lap to keep from bouncing around on the seat.  I clung to Diana in her slick snowsuit that squeaked as it slid across my coat when the van hit potholes in the road. 

We were stopped along with all vehicles on the border of Poland.  It was dark and spitting snow.  Armed guards were opening trunks of cars to search luggage at checkpoints before crossing the border.  We were instructed to exit the van and stand in the snow.  Our adoption documents were to be reviewed.  We had some medical envelopes that were sealed with gold seals.  We had been told we would not get the visa in Warsaw if the seals were broken.  So, with no time to think, the other mother and I looked at each other and quickly hid those envelopes in the pocket under our seats.  We handed over the larger packet of adoption documents along with our passports upon exiting the van.  The military presence was extensive on the borders and in airports as we travelled home so soon after 9/11.  I held the new little girl in the snowsuit I had just met with the sprig of hair on the top of her head that Rob referred to as his “Ukrainian pixie” close to my chest as we arrived at the American Embassy in Warsaw early on that Friday morning.  We arrived in the Baltimore airport late Saturday night and went immediately to the immigration office where Diana was given dual citizenship that she still maintains today as both a citizen of the United States of America and Ukraine. 

I had been completely out of the routine that was second nature to me.  I had been in a foreign country for two weeks and had barely communicated with my children at home.  The past 72 hours had included sitting in a courtroom where a judge asked to see my pictures in a pink notebook of Erin at school in her early intervention classroom at a primary school in Fluvanna County where children in wheel chairs attended school and had physical therapy and went on field trips to apple orchards and pumpkin patches with typically developing children.  The orphanage administrator in the courtroom asked for the notebook looking directly into my eyes instead of at the adoption facilitator and took it to show the judge.  Oles, our adoption facilitator, sat between Rob and me translating the conversation between the judge and the orphanage director while looking at the pictures of Erin at school with her classmates in a preschool classroom as if they had never entertained the idea of children with disabilities going to school.  They returned the notebook and asked me to return with “people who could train their people” on how to educate children with disabilities. 

I was mom and a school teacher.  I had five kids, two with Down syndrome.  Rob and I had borrowed all the money required for an international adoption.  I told them I’d raise money for therapy equipment.  I’d wake up in the night when we returned home thinking about the request.  Our sons loved to play basketball.  I fixed hamburgers one night for dinner and talked with my sons and a PG basketball player who was my oldest son’s best friend about how to raise money for therapy equipment to send to Diana’s orphanage.  They talked while we sat around the table about having a basketball tournament at FUMA with community church youth groups.  We set a goal of $1000 for therapy equipment.  We raised $5000.  One of the students in my church youth group reminded me the Ukrainian judge asked for people who could train their people.  I asked an early intervention team from Cunningham Elementary School in Fluvanna County (a physical therapist, an occupational therapist, and an early intervention teacher) to go to Ukraine to set up a therapy room in Diana’s orphanage in 2001 and train their caregivers.  I pledged to earn their travel expenses with a second basketball tournament a month later.  Others in our community rallied their teams.  We raised another $5000.  We shipped the therapy equipment and pediatric wheelchairs and a standing table to the Berizka Orphanage in Kyiv region to Diana’s orphanage in June of 2001. 

When I talk about Ukraine, I say “we” and “our,” but anyone who has ever been a small part of something big knows that it’s not about the “we,” the “our,” and especially not the “one”.  It’s all about the cause that gains strength with the building of relationships…relationships within a network that connect people who need with those who serve and have been wanting their whole lives for that “something big” to find them, much like the same reference in The Dream Giver by Bruce Wilkinson about wanting to find what you were made to do.  The Ukraine network is a part of Erin and Diana’s story. What was my hook?  I started as the messenger—a mom of a Ukrainian adopted daughter and an American birth daughter—a parent of children with Down syndrome that linked me to two societies that perceived the fate of these children very differently at the time my daughters met.  As a public school educator, I knew the power of information and had the thirst for knowledge about how children with disabilities can learn and be more productive in life if given the chance to be cultivated during their early developmental years.  I walked through that life and talked simultaneously—to anyone who would listen.  I became one of many fundraisers.  The story of my girls had an impact that went beyond our family both to American and Ukrainian audiences.  Sisters Erin and Diana have never known that having that extra chromosome provided others the opportunity to change attitude, perspective, and belief in a population of people who could be more productive than originally expected within their communities—a story that is not unique to my girls, but in Rivne, Ukraine, it has its place.  And for me and many others who find Ukraine to be a second home in their hearts, it has been a humbling privilege to be a part of the network.  I have witnessed something Divine at work that has changed me.

After that first trip, we began to form relationships with orphanage directors on yearly summer trips.  We went to serve and embrace all of the children.  We bought shoes and school supplies.  We fixed stoves and refrigerators in the kitchens where only one burner was working.  We insulated windows in the baby house.  We provided vacation Bible schools with groups of volunteers who shared with children who had no parents there was a father in Heaven who loved them.  We built ramps with care and repair teams and talked to parent groups who had children with disabilities.  We began to build collaborative partnerships with already established Ukrainian-American Omni Centers that were like the beginning of the March of Dimes in America.  We translated the “Small Steps” Early Intervention curriculum that framed early development for children with disabilities into Ukrainian and published copies that were distributed to early intervention centers across Ukraine through our Ukraine Special Needs Orphanages Fund. We began to find professors and therapists who could train and present at conferences in our Rivne region from local universities and raised money for their travel.  Our corner was education and advocacy in public schools for children with disabilities.

We went to Lutsk, Ukraine, on one of our trips to talk to a parent group of children with disabilities.  I will never ever forget a conversation I had with a mother in a parent group who was bitter and angry, because she could only get limited services for her child who had a disability. She was skeptical and kept searching my eyes during a parent presentation where I was talking about being a parent advocate.  She raised her hand and asked me if I would still be there if I had not had Erin.  I was presenting with two professionals who had chosen to teach children with severe disabilities and had been doing so for 30 years.  I was a general educator who had seldom crossed paths, much less engaged, with children with more significant disabilities and their families.  I said, “No…I would not be here if it were not for Erin.  I would not have considered adoption.  I would not have gone to school to learn how to parent a child with a disability.”  I added, “Oh, what I would have missed in life had I not had Erin and had not found Diana.”  Her eyes softened. 

Diana sat on the floor next to Erin the Sunday afternoon we arrived home watching her intently.  She was 19 pounds at age 2 ½ and was wearing 12-month clothing.  She didn’t talk and didn’t take steps independently.  Erin was much heartier, and would scoot across the floor on her bottom, moving fast among her toys in the family room, singing in a low voice, and talking to herself.  What each girl lacked in early skills, the other one had acquired.  Within a few months, Diana had receptive and expressive language and was walking.  She had fine motor skills and could help Erin manipulate toys better…until she took them from her and ran, which was something Erin had never before experienced.  We handed her a plastic shopping cart and said, “Go get her,” which prompted her to pull herself up while holding onto the cart.  Frequently, Diana was behind Erin pushing a riding toy with Erin sitting on it.  Within six months, Erin took her first steps independently.  This pattern continued, yet it become evident in their first year together that the gaps between them in their skill progression would quickly widen.  Diana could process more complex informational messages and reciprocate with a response that demonstrated her ability to reason—and with determination!  She was opinionated and bossy.   Erin had words but did not connect them to more than simple conversational exchanges that were often one-sided. Therefore, though the girls were always together with us and often shared a room through the years, their preferred activities at home were very different and their ability to connect to each other in play remained parallel most of the time. 

Like many children with cognitive disabilities, there are scattered strengths among the wide gaps of delays.  Erin had an incredible memory for recalling words to familiar songs and experiences she shared with familiar people.  Whatever was the “last” experience that stuck in her memory was your mark for life and what directed each next conversation.  Every once in awhile we’d walk into an experience in the making she had created with intent and purpose, such as the night we went to check on her after putting her to bed.  As we neared the child safety gate in the doorway, we heard her saying, “PUSH!”  She had lined up her dolls and stuffed animals against the gate and was sitting on the floor behind them calling out their charge.  We’d hear her at other times in her room rearranging the furniture.  She had a plan for how to move them and could move most everything by pushing against it.  Erin would practice baton and cheerleading by watching short videos coaches made for her on an Ipad in the kitchen for hours in the evening until her lag time behind the other girls shortened.  She had a plan for clothing combinations for costumes and daily outfits and spent hours applying make-up and nail polish and fixing her hair to then take multiple pictures of herself on the Ipad.

Diana has always been inherently social.  She has made friends with all school personnel and any student who would interact with her over the years.  She would often slip out to visit the neighbors on our block in Fork Union as they arrived home from school or work.  The same is true now wherever we go including grocery stores, sporting events, neighbors when outside in their yards, and even airports the few times we’ve flown with her.  Diana has always had an area of a room in our house with her special belongings stashed underneath a coffee table or on a shelf beside a couch where she is huddled in a particular spot that is her space of her own choosing.  For many years, she spent her time at home coloring using multi-colored gel pens that she would use to fill small blocks with color that were drawn throughout the figures like a mosaic of super heroes on a coloring page.  She played with dominoes and Little People and organized them lining them up in different ways.  She loved to practice writing words in print neatly with certain black gel ink pens and can do so beautifully in all capital letters with small print.  One year she wrote the names of every person in several elementary yearbooks multiple times in a notebook.  Another year she copied an upper elementary science textbook into her notebook working on it each night while she watched her shows on TV as her preferred activity.  In recent years, Diana has become technology savvy.  She taught me how to send emojis on my text messages and can change the TV from Netflix to prime time to find any show or movie.  When a small question is asked in conversation about a person on the news or in a show, like, “How old is Simon Cowell?” she is right on it looking it up on her phone and announcing the answer.  She loves to be in the midst of sports conversations where she can track the final scores of games or stats of individual players and report them to the group.  She switches from playing a coloring game on her phone and looking up information to watching videos on her computer exactly at 9:00 P.M.  We ask her, “Why 9:00?” and she lets us know the answer is obvious but does not provide it.  Diana has several special people in her world, but one of her favorites is Jenny Payne, our next- door neighbor when she was little and a lifelong friend.  They are sidekicks and call themselves Thelma and Louise when they hang out together and have made road trips through the years. 

Erin and Diana lived life alongside each other and constantly commented on what the other one was doing in ways that each alerted the other she was noticed and was being watched carefully.  To Erin, these comments were comical and delivered often knowing a haphazard phrase or statement about something in the present didn’t have to be accurate to provoke a correction from Diana in response.  Diana was always a caregiver and was mostly patient in delivering reminders to Erin of what she should be doing or saying in a situation.  She was always amazingly patient with Erin during tantrums in the car rides home after school through the years where a day of sensory overload could provoke Erin and where that 8-minute ride was the longest ever!   We sometimes had to put blankets or even an object like a suitcase between them as a barrier during some seasons where Erin would cycle into flailing a leg or arm in her direction.  Diana would help soothe her with kind words and reminders that she was OK and would be home soon as I found a song on the radio or searched for her favorite song on a CD while driving.

Erin knew how much Diana loved her.   If Diana went somewhere without her, Erin asked when she was coming home until she did finally come through the door.  I would explain to Diana on the phone when Erin was really sick in the hospital that she could not talk back to her but to tell Erin about what was going on at school and about what she was doing.  I’d put the phone by Erin’s ear and wait.  Every once in awhile I’d think she was finished talking and move the phone back to my ear only to hear her telling Erin about choir class or about a friend at school.  After returning home, Diana was the one who would hold Erin’s hand and say, “Look at my eyes, Erin,” and get close to her face when I had to give Erin a shot. And in the final evening of her life and not realizing at the time what was about to happen, I wondered why Erin asked twice, “Where’s Diana?” soon before she passed.

There are many more details in this story of two sisters that are recounted with a giggle and sometimes a tear from the one left behind.  Our parenting of them has been far from perfect and has not always involved preplanning before pioneering the waters of facing new challenges.  Yet, the lives of two complex girls whose histories connected them because of their genetics were woven together under our roof in a home where every shingle was attached as we figured out something new about them.  Those “somethings” strengthened our foundation as a family, impacted us, and glued us more tightly together as we raised young women who grew into themselves by their own choosing with support and direction as they (and we) needed it from those in our village.

For the sisters and to the village, we will forever be grateful.