I stand at the end of Pine Street at the close of each Longwood LIFE day with the program staff who work with our Lifers; sometimes, long after the last parent or school driver has picked up a student in the program. A few staffers may scoot out to meetings or eventually leave for class or home. All who can will stay until the last person is finished talking and ready to go…until we find closure as a group.

It is there at the end of Pine Street that we ritualistically and informally circle up and process our nine hour day with our Lifers. It’s a casual gathering. We turn toward each other. Someone starts the sharing: a student concern, an incident, a struggle, an endearing moment, something humorous, a small or significant observation demonstrating growth, a specific or open-ended question. It is within this circle we share our perspectives, fine tune our planning, laugh at ourselves, capture the mutual realization of our deep commitment and common love and respect of these individuals with disabilities who amazingly add value to our lives through knowing them. We share a common bond with them and unpack the complexity of their uniqueness in attempt to help support their success in classes, in interactions with peers, and in their jobs on campus. We step back and reflect on ways they are becoming more independent-ways they need our prompting less often.

Though our huddle holds adults of all ages-college students, teachers, and parents, we each bring what we have each taken from our daily life experiences within the program and beyond to support each other in the present. And, just as often, it is the more seasoned students who offer their reflection and advice. It is at those times I particularly smile within myself, even when a challenging interaction is shared with a tear behind the eyes, affirmation is extended to a peer with all-knowing compassion from a veteran student job coach in the program. It is at these times, especially, and in this place where I park, enter, and exit campus most days, where I pick up bits of meaningful wisdom from others. And in the process of mixing these new experiences with new people who walk a common road as I have and who are creating their own pathways to meaningful life and work into my own life experience as a mom and teacher of students with disabilities; I, too, am paving new pathways of my own.

This is how I go on and keep moving forward, how I live with loss…

And, now, as I’ve entered Erin’s birthday week on the fifth year without her in my daily life, I reflect on what I am able to take forward into living each day with greater contentment and purpose, reflecting on my own personal growth beyond having the privilege of providing support and scaffolding for hers-beyond charting her growth each and every year. Taking her impact on my life with all of her both challenging and endearing qualities into what I do everyday as I seek to make a difference in my own way with what I have to give. Always knowing a part of her is tucked deeply in my heart, and, as always, eternally grateful for the gift of having been her mom for eighteen years-and for the continued gift I have of sharing life in the everyday with her sister, Diana, who brings such joy to our lives.

I take note that I now share an occasional Erin (or Erin and Diana) story in my classes, with fellow parents, with program staffers-ones that might add an example or perspective on ranges of characteristics and abilities of people with Down syndrome. More often these make me chuckle, especially when shared warmly in our home among family.

This year, I have stopped intentionally avoiding preparing for holidays until the last minute. Holidays bring sadness without her in them. Erin loved all of them; and being eternally young, she anticipated the magic of each, watching the storefront windows and neighborhood yards for the next one to arise. Laughing at holiday commercials between her favorite holiday shows, wearing the costumes, singing the songs.

But, we love them, too. I want that anticipation of holidays back in my life…I have pumpkins and turkey decorations on my tables and am Christmas shopping a little bit each week this year. I linger a minute at the storefront windows. Diana and I listen to the Pentatonix Christmas music as we walk on cold Sunday afternoons.

I want to stop avoiding familiar places that bring forth feelings of sadness. I had lunch in Charlottesville recently with Erin’s dialysis nurse, Mary Duffy. A visit I needed at a particular time and place. We caught up with each other in the now and laughed as we told Erin stories. Mary could repeat all the exact phrases Erin would say while capturing her voice and character. I asked about all the docs and nurses I knew and loved during the span of her illness. I asked a few palliative care/end-of-life questions and sought her perspective on things I was not previously ready to hear. On that beautiful fall Monday, we sat outdoors at The Virginian Restaurant on the corner down the street from UVA Hospital, a place where we spent so much time during Erin’s life, and the place where she died.

At the end of Pine Street, the Longwood LIFE days begin anew as students happily exit vehicles with a skip in their step while swinging book bags over shoulders with one arm, often reaching out with the other to hug a greeter or point out their cool shoes or Longwood clothing. Days end the same way with students waving goodbye with warm grins and occasional hugs, happy.

And as I reflect on how we gather at the end of Pine Street to process life in the dash of each of those days, that space between the beginning and the end, I find closure for another day added. For it is has become a reality for me that with each passing year since Erin left us, the dash of my life is getting longer…

And though the struggles, tears, and pain of my losses still remain as a part of the process of doing life in the present, sometimes surfacing at recollections of all I loved about her, her presence still lingers warmly in small ways within me and in my world around me…

And, if in the grand scheme of things, if in the bigger picture-Life really IS short (as they say) and could even be as short as Pine Street, I don’t want to get to the end of mine without knowing-being completely sure-that I’ve lived it well and to the fullest.

Ever since our kids were very small, we all looked forward for months and months to Beach Week. In the early days, we’d go to Kill Devil Hills, NC with Rob’s parents. Later, we switched to Ocean Isle Beach, NC. We did life together in Fork Union with Rob’s parents, so it has always been a natural transition with the grandparents each year throughout our kids’ childhood and adolescence to go from our normal routine of life at FUMA to the beach house at Ocean Isle as a caravan of families converging together.

Eventually, we (the second adult generation) took over the planning and involved our own now adult children in the location and house selection. Everyone still comes and wouldn’t miss this focused week of togetherness. We lost my mother-in-law several years ago but carry on her traditions set at the beach such as no schedules, playing games at night, hanging out on the front porch until late talking, and creating the fun and wonder of discovery that can only happen at the beach-like planting perfect shells in the sand and in plain view just ahead of hopeful grandsons skipping down the beach in pursuit of ocean treasures with buckets in hand, looking for sand crabs in the dark with flashlights, looking down the beach for the Icee stand umbrella to appear with dollars ready, playing putt-.putt and getting a hole-in-one, and providing quarter rolls for the arcade beside the pier on the night before we leave.

I miss my mother-in-law, Donna, especially, at the beach. I’d sit beside her on the front porch or in chairs near the water and listen to her stories and perspectives on people while we watched the kids-and especially Erin-who had no fear of the water -unlike her cautious sister, Diana. We’d brace ourselves, ready to jump up at a moment’s notice when Erin might notice an interesting wave break farther out and turn her boogie board toward it or drift aimlessly with the current down the shoreline ignoring our calls and frantic waving to get out and walk back toward our chairs and umbrellas. Once, she took off toward the horizon (it seemed) without her board, glancing over her shoulder at us before committing to her quest to escape by collapsing into the crashing waves that enveloped her. I jumped up and took off after her eventually stepping hard into a hole and spraining my knee.

I am thinking of that stubborn girl these days as I anticipate our beach trip in a couple of weeks and am especially remembering Erin’s last trip to Ocean Isle with our family in the summer of 2016. Erin was coming off of three months in the hospital after having endocarditis; she and I were both 20 lbs. lighter: Erin from lying in a hospital bed being fed with tubes and me from just standing day and night beside the bed watching her-hoping she would make it home, hoping she would get to see the beach one more time.

So, when she did finally wake up, we talked about the beach, “Go beach, Mom?” My discussions with nurses and doctors included questions about her readiness to travel and feasibility of carting her peritoneal dialysis supplies with us. We bought a van to transport her medical equipment, ordered her boxes of solutions, cassettes, and tubing to be delivered to the realty office handling our rental, and arranged for blood draws at an urgent care office near our beach house while there. And we got the news Erin needed an increase of time each day to be on the dialysis cycler machine (12 hours) overnight to attempt to take off even more fluid. Tagged onto the morning hours included the waiting time for her blood pressure to recover, to rise out of the scary range, so Erin could could sit up/stand with assistance, and so her energy could return. And, it did along with her smile and laughter as her brothers would carry her down to the ocean’s edge and plop her right on the sand to feel the surf wash right up over her, knocking her backwards again and again, rushing over her catheter and feeding tube securely taped to her torso covered in layers of waterproof plastic wrap underneath her pink bathing suit and swim shirt, sometimes filling her mouth as she belly laughed and spit it back out again and again even though we’d tell her to close her mouth, freeing her from all the rules of securing the sterile field around her daily regiments of medical care-allowing her to just be the eternal child she was at 17 inside of herself, to taste the salt in the water and suck it off of the fingers she’d insert in her mouth between waves, to remember the excitement and feel the joy of being in her favorite place in the world with all the people she loved and would call over to sit with her in anticipation of the next wave, to watch them dig moats and a city of sandcastles around her, to feel the relief of constant needle sticks and multiple faces she would frown at and snort her disapproval as they’d clean out a wound or constrict her arm or leg with a blood pressure cuff-having only her people around her.

Sitting on the sand at the beach provided total freedom and relief from her new normal for a few daytime hours at a time each day-as much as she could tolerate. And, when she’d catch my eye of fear or caution that she might tire or that ocean water might seep into a crevice of the clear plastic layers wrapped around her protecting her tubing, she’d call out, “No, Mom” with a stern look of warning to not intervene or take away this perfect moment, to not step into her space-one where she felt in control of her independence, one where taking risks in the moment was not life-threatening and full of setbacks, one she had worked for weeks to gain personal strength back after weeks of not using her muscles while intubated, and then having to learn how to use her hands again, gain strength and coordination back…as she would knead her fingers through play dough and run fingers through the tub of sand with sand toys I brought to the hospital to motivate her to work to regain her strength in her hands and to remind her to work to get stronger for playing in the sand and surf on vacation.

And, while watching the waves roll over her body, I heard in my mind the voices of Erin’s nephrologist, dialysis nurse, and palliative care nurse advising me to let her go, let her do as she pleased, give her the choice to do what made her the happiest, while neglecting to tell me explicitly in words that it might be her last opportunity to enjoy life to the fullest on this earth in the way she loved the most.

Also on that trip I think about and remember the foster sons and sister who escaped daily challenges and burdens of family trauma on this trip, if even for brief moments offering relief, laughter and fun-thrilling risks-ones that kept me on edge as my sons’ best friend, Mason, staying in his RV in our driveway for the week along with my oldest son took them on a midnight raft ride in the surf. Always on my toes; yet, seeing the same relief in their eyes as they ran soaking wet back from the beach in the dark. There was getting to know my eight-month-old grandson in a relaxed setting after only holding him and pushing him in a stroller around the hallways of the 7th floor of UVA Hospital’s PICU for his entire life. For the first time in many months I found myself relaxing with all of our children together along with our extended foster family, a great grandfather, and our new grandson-watching them all interact with a family member who was dearly loved and who was very sick…knowing she would never again be the same-living-all of us-with that knowledge-unspoken-that our Erin was dying…wanting everything to feel normal, and wanting to make her happy…wanting to find our happy place with her while also feeling a small place of misery within each of our hearts-but not talking about it.

Yet, we would not trade that last vacation-would not have missed it-not one minute of it, if only to hear her joy in the sound of her belly laugh as the waves washed over her body, cleansing her face, with handfuls of sand dripping through her slender fingertips as she raised her arms to let the sand drip, seeing her rocking back and forth in the rhythm of the tide, seeing and feeling with her the momentary sigh of relief from pain and circumstances, needing to feel the moment with her and to remember its significance now that she is gone from this earth.

I still hear her laughter in the rhythm of the waves and feel the joy in her spirit. I smell the saltiness of her spunk and obstinance and feel the warmth of her deep love of her people in each sound of the waves creeping and crashing against the shore, with such determination to fight for each moment to live and dwell in the presence of places and people who both love her and feel loved by her.

Erin, I will forever think of your perseverance as I watch the tide grasping the sandy shore and hear the joy of each deep belly laugh in the rhythmic sounds of each crashing wave. I will forever remember you within the center of our family gatherings demanding your just attention due…for you, I will always look to find a glimpse of recognition on each morning walk along the shore on each family beach week vacation.

And as the sun rises on the edge of the island, so will your presence remain with each of us in our hearts and within the deep laughter and love we share on the shores of Ocean Isle.

I’ve been supervising practicum students for the past few weeks in intermediate and middle school placements. Students are back in school after many months of being home and sitting at computers, logging in as required to get credit for attendance. Teachers have been trying so hard to motivate them, to find some connection, to figure out how to teach with video disabled and audio muted and with just seeing a name on the screen. Maybe all have been doing the best they can on both ends, trying to connect and make school matter, just wanting to meet in person. And now, these students are back in person just in time for SOL testing.

The best part of my job at Longwood University is getting to see my students become teachers.

It makes my heart soar to sit in the back of classrooms or on a Zoom observation and watch them teach. They use all the deep learning questions they practice in methods classes. They integrate core content into interdisciplinary lessons. They connect with squirmy students who need attention and keep them moving forward in the learning process. They provide affirmation at all the right moments with ease and adjust to amended schedules on the last weeks of school while pitching in to hand out snacks, bag lunches, cover classes while teachers are testing, whatever is needed, as required and requested.

That’s the life of a teacher.

I have left the intermediate and middle schools after supervising my special education teacher candidates these past few weeks with a smile on my face and a grateful heart. Students are back in school. Hallways are full. Tardy bells are ringing. Kids are going in and out of classrooms. Parking lots are dropping off kids with book bags.

We are returning to normalcy…and it feels right. It feels good.

After these visits and as I have driven down 460 West back to Farmville, I have remembered a classroom much like the self-contained class I observed in one neighboring county intermediate school. It was one of the most challenging jobs I have ever had with students I hold dear to my heart still. One of the students in that self-contained classroom was my own.

Erin was in my class for two years. She was by far the most challenging student I taught. She called me Mrs. Feathers at school during instruction and at the same time would wave me off behind her back to stop me from following her from a distance down the hallway to be sure she made it safely to her next class.

Sometimes, she didn’t make it to the next place.

Like the time we had a fire drill and everyone was outside the building…everyone except Erin. I had left school in the middle of the day to take Diana home sick. I tag teamed with Rob to watch her, so I could go back to school to finish the school day only to find that everyone was out of the building but Erin. Lavetta, my classroom aide, knew where to find her and was rushing back into the school and to the sensory corner of my classroom, behind the sea-themed shower curtain hanging from the ceiling to the fluffy bean bags, the quiet lighting, and the trickle of fountain water where she felt safe. At some point in the steady movement of the packed hallways of shoulder to shoulder kids swiftly streaming toward exits while stern voices of adults issued directives that rose above blinking lights and blaring monotones of fire alarms overhead, Erin had stopped in her tracks, shrinking backwards, turning around, working her way back through the crowd of students, probably yelling, “Get out of my way!” But her peers were used to her yelling and, I imagine, had conceded without notice.

And now her name was being passed over walkie talkies across administrators and staff as missing while Lavetta fled back into the building to find her-and did find her- quietly and safely tucked behind the sea of fish and fluff of pillows oblivious to any concern extended on her behalf.

Erin needed time and space-to retreat, regroup, and reset. At times, her outbursts could require clearing the room to minimize the disruption to instruction. I’d signal to the class to grab their work and quickly move to the kitchen counters adjoining my classroom where I could continue teaching and still have eyes on Erin, dimming the lights, giving her space from sensory triggers innocently imposed by rustling papers, chiming voices, and constant movement across her field of vision. Not that Erin was the only student with sensory integration issues or the only one who prompted relocating the class momentarily to provide a bit of privacy and space needed to work through an issue-to preserve dignity; yet, her sensory needs were the most intense and could cause her to spiral downward for the rest of the day, if not kept in constant check with the help of implementing a sensory diet-a set of small breaks throughout the day for the purpose of implementing interventions to the sensory systems to provide either input (sensory information) or to provide space. a place, and time to dispel a sensory system when overloaded.

For Erin, her output included her vestibular system, and she would spin around in chairs on wheels (and I would let her) or on her belly on scooters in the gym before collapsing to reset with quiet music retuning her ears through headphones and quiet-sometimes colorful- lights rotating across her clothing as if to offer a quick touch of reassurance as she followed its path with her eyes…and touch. Along with the soft textures of pillow tops or soft blankets, she sought proprioceptive input by piling her desk supplies…all of them and heavier books… into her book bag and slinging the book bag onto her back to keep her centered.

On one occasion while observing a practicum student this past week, I was reminded of the reassuring power of the senses as I observed in that intermediate school self-contained classroom and was impacted by a petite young girl who was blind as she timidly re-entered her classroom in the middle of the lesson and explored her surroundings through her fingers. With her soft black hair combed evenly from her crown across her head in all directions, she tapped across the room to place her belongings at her table while running her fingers across the furniture. She turned asking about individual students by name. They answered kindly from a distance as she went to each one greeting them in words backed by gratefulness in being able to be close to them and touching their arms or hair. She explored her table and proceeded to unpack a bag she brought with her of small figures and stuffed animals while class instruction resumed with the cooperating teacher explaining to me she needed to settle into the class environment…and time and space to do so was granted. As she emerged shortly afterwards to go to her seat, her hair parted from her face and a big smile emerged.

That moment touched me.

As I drove that day back to Farmville, I embraced feelings of being in the hallways of an old school reflecting on the creaks of rubber sneakers and the faint smells of cafeteria food mixed with hints of cleaning supplies wafting across my senses bringing a sense of security and hope for normalcy for what I have always known and loved…being in schools…places in which I have found great purpose and fulfillment in life.

And in the midst of those memories that surfaced on my drive back to Farmville from that intermediate school and with permission granted to feel its environmental influence and to witness the social-emotional interactions between peers and teachers, I felt, for a brief moment, a close awareness of my Erin brush past my heart as she came to mind along with that special classroom by the kitchen in the old wing of Fluvanna Middle School…a place, a class, and a girl who all together impacted my life and perspective in mighty ways.

Being inside an old school brings the touch needed to reconnect to all that is relational and meaningful when reestablishing community.

Each time we cross the bridge over the James River in Bremo Bluff, Va. connecting Fluvanna County to Buckingham County, we think of Erin. In recent years, we pass over at dusk just as the sun is slipping behind the horizon in route to weekend visits with family or on return trips home. We slow down and quickly roll down the window to grab the last glimpse of rich orangey light trailing over the field beside the riverbank or bending across the moving water below the bridge.

The ‘Long Way’ was a whispered request of Erin to her dad during the last year of her life when she was so ill. She would wait for Rob to come home from work, sit up straight on the couch when she heard the door open, and call, “Dad, go the long way”. They would take off together in the car…always a sacred father/daughter time; yet, sometimes Diana or I would ride along in the backseat. Rob would head down Rt. 15S to the bridge at Bremo Bluff where Erin would push the buttons to roll down all the windows, stretch her arms out the window, lean her face into the wind, and with hair flailing wildly, open her mouth in laughter as they sped across the bridge. The temperature outside didn’t matter. For when it was bitter cold, Erin would reach out further to freeze her fingers and quickly put the back of her hand on her dad’s face. Rob would then turn the car around and drive back across once again to repeat the daily ritual with his arm extending out the window following Erin’s lead. Either before the bridge or right after the trip back across, Erin would direct Rob to go the ‘Long Way’, which was the loop through Bremo Bluff down a short country lane with historic homes and a steep hill leading down to the riverside road that floods every time the banks overflow….and to the old white houses with cats. Rob would slow down for Erin to count cats…on and under porches, in yards, by garages, under trees…”Three cats, Erin?…Four cats?” She’d return home with a proudly stated accomplishment ..”Four cats! Yoo-hoo!”

These days the ‘Long Way’ seems long ago…We don’t often travel this way and cross the Bremo bridge less often. But when we do cross over, roll down the windows, and feel the wind brushing between our fingers, those familiar feelings arise in our hearts…bringing with them mixtures of warmth and sorrow along with episodes – brief clips – of the simple everyday interactions we shared woven over a lifetime…Erin’s lifetime. We hear her voice in our minds, see her face more clearly, and feel her close to our hearts as the sun sets with its brilliance taking her from us once again across the sky and behind the horizon.

Until next time…Love you, Erin Lee.

March 21st each year is World Down Syndrome Day. I’ve been thinking this week about the people who have touched my life… who also have Down syndrome. Considering all the years I’ve been teaching, I have actually not known many people personally with Down syndrome. You’d think the extra chromosome on the 21st pair affecting all or some of the cells in the body – such a unique genetic configuration – would cycle through the humans I’ve known and loved more than just six times in my life.

Of course, I’ve seen more than six people with DS of all ages and in all settings and know many folks with whom I share a kinship through our familiar association as a family member or teacher. I sense an instant connection with others who are also part of my network of family or who have been touched in some way by the one with DS in their lives. We connect with a smile and exchange a few words or even stories to add context to our meeting – finding each other by merely being in the presence of a very significant person who has changed our lives by just being part of it.

It just takes one person with Down syndrome to alter perspective on life’s everyday experiences; and though these folks have similarities, it is their uniqueness that always captures my attention and makes me smile…not a corner of the mouth curled upward…but a smile that fills my face and spreads light through my chest. It’s not the overall profile that strikes me and stops me in my tracks – like when reviewing a resume or checking boxes off on a grading rubric. Instead, it is that I simply and somewhat unexpectedly don’t want to miss the finely-tuned details of what is shared so enthusiastically and so importantly before me…

So, today, I recount some of these moments of uniqueness to which I have been gifted when among friends (and family and students) who also have Down syndrome…

Elizabeth was the most independent and adult-like middle schooler I have ever known. She often shared her stories and freelance journals with me full of hope and positive words. She fell lost in her books and imagined herself within their adventures.

Erin loved to sing and sang before she talked. She engaged others around her in singing with her who would never have dared to allow anyone to hear them sing aloud and in public but did so joyfully with her just because she asked and expected an immediate response. She always ended the performance with a “Good job!” calling the person by name and adding “funny bunny” rabbit ears – her ultimate sign of approval…one that must be earned. I hear her silly voice in my memory and feel her in my heart each and every day.

Rachel is full of passion for people, ideals..and of course, music! She touched my heart the afternoon I met her when she came to speak to my evening class. It was a small graduate class, and we planned to all meet for dinner first, so we could enjoy her company and the fellowship of each other which included Rachel’s dad. As Rachel and I strolled out to the parking lot, we talked about our love of the Beatles. We locked arms and sang our favorites all the way to the restaurant. Rachel intrigues me with her thoughtful reflection, elaborate vocabulary, and heartfelt self-expression when we talk. She holds a special place in my heart, and I truly enjoy our occasional phone calls since our Longwood LIFE days together.

Zach is the earliest arriver to Longwood LIFE…packed and ready for the day. He jumps out of the car ready to show me his fitness center work shirt and his Longwood gym clothes. He always has a Mt. Dew in tow and greets others either signing an “I love you,” or cupping his hands like a heart. He shares his favorite videos or pictures of his adorable niece, who equally adores him. He constantly surprises me…like on last Wednesday when he beat everyone else’s time on an office vocational task by 3 minutes counting each step aloud, looking to see if I was watching, and adding an approving “Yeah!” when he finished…no prompting needed throughout the entire process. I had no idea he could do it so perfectly. We giggled. Diana and I think of Zach everyday as we walk by the house in our neighborhood that has a car parked in front with the ASL sign decal on the window meaning “Hang loose.” We turn to each other, do the sign, say “Hang loose”, and think of Zach, who reminds us daily in Longwood LIFE not to take ourselves too seriously.

Diana is the master of keeping track of small details for everything from sports stats to ages of famous people in movies or TV shows. She goes over the details in preparation for upcoming events including packing and unpacking book bags-frequently switching and repacking – laying out what she will wear to the next event on her bed as if she were inside it. She navigates streaming platforms on our TV and her computer with ease and is readily available to help her parents with these important tasks. From the time she was very young, she colored figures in coloring books with colorful gel pens dividing the space into small sections to color like a mosaic picture. With great determination and detailed printing, she copied yearbooks during her middle school years and once copied a science textbook over the span of a year. She has spent time during this Pandemic Year coloring these intricate pictures to give to people she loves to encourage them. She now is able to read spread sheets of ISBN numbers with section codes at the Longwood Barnes & Noble Bookstore to pull textbooks off the shelves to pack up to send back to publishers. She is my everyday sidekick and my walking buddy. She always reminds me I am loved.

Thomas sits across from me at lunch in Dorrill Dining Hall on Longwood LIFE days. He enjoys the social activities surrounding the dining experience even more than eating and never misses an opportunity to meet a new college student or make a new friend. He double teams the social scene at our table with daily calls to his adult siblings at work to check on them and go over the details of their days. He looks up and lights up with a “How ya doing, Brady?” when his favorite friend and peer mentor joins our table. Thomas is on top of his game when sharing music on his phone and stories of weekends at the lake. Just this past Friday, I enjoyed his explanation about how to catch a fish and cook it to perfection down to the seasoning recipe. I always learn something new from Thomas – including new dances. Sometimes, he invites others to join him – extending a polite invitation and a hand extended while on one knee. I love the times I see him just walking down Brock Commons with his headphones on and a jig in his gait as we move around campus. He reminds me to feel the music of life in the moment.

So, to celebrate World Down Syndrome Day on this March 21st, I’ll sing that song that makes me happy, take that walk with my sidekick to “hang loose”, reflect on the people who impact my life in the smallest and grandest of ways…

And I’ll dance.😊

They were always at odds…for spite…for sport…delivering insults with a grin and with eyes cutting sideways to see how their charged words left their mark on the other…if the impact would turn from snort to snicker.

 “Hushabye your tootsie face, ‘Dan’l!” 

 “Erin, Erin, Erin!  Hey-E!” 

The oldest and youngest birth children could ignite the household when together under the same roof.  Erin would yell at the top of her lungs.  Daniel would guffaw in retort. Erin would yell, “Dan’l!  Go back to ‘Rado!” (Colorado) and then laugh and wait for his next move…which would come in a Nerf gun shot at her from around the corner of the living room hitting her on the top of her head.  She’d brace herself knowing it was coming.

So abrasive and yet so alike in many ways.  Daniel and Erin.  Both with fighting spirits…untamed by nature and passionate about what they loved and who they loved. Protective of their things and yet masters of loving unconditionally. Demanding to be heard and understood. Forgiving to the core and always recognizing their need to be forgiven when their anger or actions were uncapped. Always knowing they had a place and always preferring to be in that place in the center of our family.

On this day each year, February 12^th, I find myself on the eve of a celebration of this battling duo with such conflicting feelings. 

February 13^th is the day four years ago that I kissed Erin goodbye in this world and sent her on to one in which she will live forever in a place full of eternal love…a place where I know she is safe and held close and free in ways she has never before experienced.   

February 14^th was the day 36 years ago I gave birth to my oldest son, Daniel, who now, in life, is living his best life…one that began anew at the start of his recovery just 3 ½ years ago…one in which he is thriving in his own home and family and his job.

I am filled with conflicting feelings of joy for both as well as loss of the times I had them together in life stirring up our lives in the most amusing ways…ones that brought me great joy and were a pure demonstration of the deep connection they shared.  I’ve come to understand the grieving process, experiencing conflicting feelings that dig at each other back and forth all at the same time as I hear the banter of their voices in my memories.

They not only shared the battle between them…they each battled within.

Erin has always argued with herself in third person… “Erin, stop it! Stop yelling! Be nice to your friends! Don’t hit! Erin, LISTEN! You can do it! Try harder! I love you, Erin! Aww….I love you, too, Erin!” Typical of people with Down syndrome, Erin had no filter and worked through her thoughts aloud. We could all hear them…daily…nightly…and rallied around her to help her find her safe place where she could calm down. She could hear herself, scold herself, redirect herself, affirm herself…aloud. She sought out people and soared when she was engaging with others in her inner circle who understood her and could help. She surfaced with full emotion, bringing all her physical strength to meet the moment, sometimes working through a problem with her fists…lashing out and, then, retreating with a loving expression and kind words. So sorry for her actions and totally impulse-driven without restraint, but not with ill-intent. Seeking that sense of control and needing to find that place within herself to settle, knowing she had a safety net in her space and with her people. Though a constant battle, fought daily, she found a place to be herself, to be happy…a place where she knew she was loved. I love her still with my whole heart and miss her each day and think of her each day. I fight harder in life because of what I learned about love in loving her harder to help her function better and to be happy each day.

Now, that battle is over, and I believe, I feel, I am absolutely sure…She is free.  I am sure Erin is living her best life.  I imagine what that is like for her each and every day when I walk down the street and look up at the sky at the sun at sunrise or sunset…the clouds…the stars…and the moon.  I see her in my mind and feel her in my heart as I listen to music while I walk.  I am comforted by the belief in something greater than this life and that I trust with my child.

Erin is living her best life.

Daniel. I love him…so dearly. He has always challenged life to the fullest and expected to find the best in it. His second grade teacher said he worked out his problems with his fists. He has worked harder in life to find his best self. He is committed fully to his passions and always has worked hard to achieve…in lacrosse, on the slopes, in his jobs, in relationships…the most committed friend you’ll ever find. He loves his family and is ever present from wherever he is across the country to brothers, sisters, parents, grandparents, aunts, uncles, and cousins. He loves and feels what all are feeling in the moment when he calls. He is a person who is present, loves, and is loved. He does not judge and is there at a moment’s notice, if needed. He knows himself. He is honest in his battles and struggles. He reaches out. He calls. He knows who will be on the other end of the phone at a moment’s notice. He’s always been there for others because he also knows others are always there for him. That’s what makes life work. We love hard with Daniel. We learn all that is real and that matters in life in love and family from Daniel. He has taught us to love harder and better in all of his talent, loud voice, and huge personality. We learn to live our best life because we see him living his. He has overcome his battles and is still aware of the fight, always trying to stay a step ahead of it. Always thankful. I love that guy…grateful for my son.

Daniel is living his best life.

On the eve of this weekend…on February 12^th, the eve of the 4^th year of Erin’s passing, the weekend of Daniel’s birthday, and the day we celebrate love, I am grateful for my Erin and my Daniel.  I am grateful for the recent walks around the block on a bitter cold night when Daniel visited briefly on the East Coast for work… for being real in the moment and sharing who we are and how we are changing in life for the better. Living better and loving each other more in the now.

This evening, I celebrate the best life for my Daniel and my Erin in the here and now…always connected…always celebrated…always loved…always remembered.

To stay ahead…to stay connected takes heart and all we are.

Erin’s birthday is Thursday. I have felt like I needed to dig deep and call up my fondest memories of my girl. It’s the fourth birthday without her. I suppress and compartmentalize thoughts of her. I call them forth when I need to feel her presence. I embrace her in a rush of song lyrics that were her favorite Disney tunes. I tried to watch “Tangled” Sunday afternoon to bring her close in honor of her birthday week. Rob asked, “Why are you doing this to yourself?” I turned it off. It made me feel incredibly sad. I thought I needed to plan how I could celebrate her 22nd birthday in a purposeful way. I thought I would go look at cakes and gifts she would have enjoyed. That worked well on the first few years without Erin. As time goes on, I fear the fine-tuned details of her will begin to fade.

I am a last minute shopper. I used to go to Walmart at Zion Crossroads a day or two before Erin’s birthday. It wasn’t so important for the gifts to be perfect. She always wanted the same things…soft Disney blankets, disco balls, coloring books, markers, something purple, something princess, chocolate cake…predictable and perfect. I miss that. I thought maybe I would stroll through the princess blanket aisle and run my fingers across the fluffy overstuffed neon-colored pillows like the ones thrown on Erin’s bed in her pink room. We moved to Farmville four months after Erin died. Though we had passed most of her clothes, shoes, and coats on to a family of girls who needed them, we weren’t ready to discard the pink presence in our home. So, we let one of the guest rooms be pink, with Erin’s covers and carefully chosen items we wanted to keep of hers stored in the dresser drawers and closet. We added accents that were not hers and used the space to store the port-a-crib and high chair for our young grandson. It seemed ok to let the pink linger. I don’t go in there often, but once in awhile I go in and just look around…and let myself remember.

The beautiful urn with her ashes resides in that room, except when family comes to visit. It is painted with sea oats swaying in front of soft blue hues of ocean water. I imagine the scene depicting the calmer periods of a day, such as early morning or dusk, just after the sun has gone down. The shadows cover the sand and darken the wispy oats highlighting Erin’s name and dates of her lifespan. We intended to spread its contents over the ocean from the pier at Ocean Isle a few summers ago…and then we didn’t. Now, Rob packs up the urn each summer with a few key items of Erin’s, including her red sunglasses, pink flip flops, and her pink beach hat, along with a small picture of Erin to sit on a corner table in the main room of the beach house…a place full of laughter with all of our family. And, in the midst of making new memories, if even for a moment, at some point during our stay, when we pass by the table, we pause…and remember.

There are those times others remember…a picture from long ago will surface on Facebook or from a photo gallery on phones of friends. Those times we wake up to a new day with a text, a quick memory shared, and an Erin grin. We share it with each other, snicker at her funny expression, feel eternally grateful for people who shared their lives with her and with us, and save the moment and the picture. Sometimes, memories are shared when we least expect them…the primary school teacher who shared she puts Erin’s school picture on the side of her file cabinet in her classroom each year and wrote to tell us and show us the picture as she was unpacking her classroom for a new school year. Or, seeing Erin’s laughing face in a picture on a memory table beside a small white candle burning among other family members’ pictures who have also passed away at my nephew’s wedding last month. Unexpectedly seeing her joyful face evoked a subtle tearful response that touched my heart with such warmth, as I remembered how excited Erin always was to gather with cousins, aunts, and uncles calling them out by name in the car ride one by one as she prepared to meet them.

So, when I worry that memories might fade or that I might linger less in the pink room…just when I think I might get caught up in making new memories reading to my grandson, Cooper, who tries to read “The Three Billy Goats Gruff” right along with me with the same voice inflection I use for each character but can’t get all the words out fast enough…When I chuckle at the deep reflection of his brother, Wyatt, as he tells his third-base coach at an early Saturday morning tee ball game that his legs just don’t wake up that early as he pauses on the base….If I get distracted and am drawn into watching my three boys in the kitchen of Dylan’s family’s new house late on a Friday evening laughing and telling stories while leaning against the counter as we gather for a weekend…If I post a picture on Facebook of just Diana-without Erin-and wonder for a fleeting moment if that is ok or not to do it-even though the picture is about Longwood LIFE and friends in Farmville-in a place and capturing experiences Erin is not a part of…to celebrate our daily lives with Diana in the here and now with her delightful laugh and insightful perspectives….Living in the present and looking into the lives of those I love in the here and now does not mean I am losing sight of Erin or my memories of her.

She slips into my thoughts when I am swimming at the Y, and I think of our days at Mee-Maw and Pap-Pap’s pool on endless summer afternoons when she wouldn’t get out of the pool until we started the car in the driveway to go home. She slips into my heart while I walk around my neighborhood each day as I look at the sky at all times of day and in the evenings. I feel her close to me as I see the sunrise, watch clouds moving across the sky, or walk quickly down particular streets that open up to fields where I can capture the best view of a full moon.

So, maybe this year on Erin’s birthday, I’ll do just what I do most Thursdays. I’ll drink coffee in the early morning and listen to a new tune I want to learn to play on guitar before going to the Y for a quick swim. I’ll put on my necklace and rub the heart between my fingers to be sure it’s on the right side before going to work at a place I love and where I find purpose. I’ll relax with family at home and talk with Rob and Diana as we stroll around the neighborhood and as thoughts of Erin come to mind. And, in the quiet of the late evening, I’ll put in my earbuds and listen to the songs that speak to my heart about her and what she means to me. It is at these times…I remember her most of all.

Times to remember are not meant to be intentional, I have decided. They are moments of recognition that Erin is still with us in our memories and in our hearts…times that mix in and out of our days and nights where she feels close…where we still know she loved us…where, as I remember, she knew she was loved by us.

And, the pink room will still be pink…

Until it isn’t.

Erin loved Curious George. She watched the movies and all the episodes numerous times. She talked back to George in his language throughout the shows. We all watched them with her just to watch her reactions to George. She identified with him. She loved watching him make a mess that grew and grew knowing he was about to get in real trouble and not be able to fix it. She could see it coming and would giggle and issue warnings to stop him while her facial expressions were egging him on. I believe she loved watching him get into more trouble than even she could muster. George always turned every good intention upside down without even trying. He recognized at some point the situation was out of control and would either run to find the man with the yellow hat to fix it or reluctantly sink down into the mess and wait…hoping for his safety net to arrive. Erin knew the routine. Her safety net in life was her dad. She’d call him to watch George with her or to report his mischief. As a little girl, she’d put her two fingers in her mouth and climb onto his lap to watch George with her. As she got older, she’d call “Dad!” adding a bit of George language to follow. He always came to sit with her and watch. She’d scoot over on the couch and put her head on his shoulder or under his arm. If Dad wasn’t around at the moment, she’d call for brothers to come. I was usually there, too, all set up for grading papers while sitting with her for the Curious George marathon afternoon.

Where has that “upside down” feeling gone? I desperately miss it. Erin created it in the most powerful and demanding ways. She brought it to life and made it a daily reality. She literally sought out every opportunity to BE upside down…on monkey bars, on the trampoline, even hanging off the couch. My father-in-law rigged a portable bar in the door frame between the kitchen and laundry room when Erin was younger for her to swing upside down while I cooked dinner and did laundry. When Erin was in my classroom after a long day of school, she would sit in my desk chair with wheels and spin around and around with my Ipad in hand playing “Fireworks” and “The Climb”. She craved the feeling-the sensory input- created by spinning, swinging, and hanging upside down. She’d eventually settle into a calmer state as her vestibular system would reset.

For me, and maybe most people, feeling “upside down” is that part of life that clashes with all that is normal. Simply, without the “upside down” presence, life is just normal and predictable. Erin was the catalyst of “upside down-ness” in our lives. She brought something to my life that is contrary to how I am wired. I strive for normalcy and balance in life and work as defined by spinning many plates in the air at the same time. Keeping them all in motion at the same time is my measure of productivity. It’s a sign of normal life driven by a schedule, a routine, balanced by exercise, driven by household chores…keeping up with laundry and grocery shopping…bills paid…checking in with family on facetime and phone calls. Work goals and challenges are always in the back of my mind pushing me to read more, write more, create more, connect more. It’s all a part of learning more and is exactly what drives my days and nights. It all gets done…maybe not at the end of every single day, but at the end of a week or maybe a month, I find myself where I want to be most of the time. The journey is as much about thinking about what I need to integrate into daily activities and trying to utilize any available time to grade assignments or prepare for the next class or meeting. I work faster while in this mode. Yet, that upside down familiar feeling does creep into the subtle chaos of daily life. I recognize it. It is pending on my agenda…a new challenge, task, or interaction. I may dread it and even fear it at times. Yet, it can serve me well. It demands I gather my courage. It pushes me out of my comfort zone and into places of growth. I can’t claim to be a lifelong learner and not go there.

Erin wasn’t the first person to bring upside down-ness to my life…Life with students in a classroom was full of upside down opportunities each and every day – looking into middle schoolers’ eyes, listening to their interpretations, watching their responses, figuring out how they learn – unpacking the steps in their thinking process to find what they know and don’t know, discovering where to jump in and connect, how to bring them forward.

Becoming a parent brought upside down-ness to my life…late nights with babies wide awake or little boys with asthma up all night…thinking about which parent would stay home the next day while the other went to work…starting the sub plans for school between nebulizer treatments at 3AM. Later, juggling multiple game schedules posted on the refrigerator and sometimes switching fields during games to keep family eyes peeled on sons…consuming way too much fast food in route to multiple games each week…clinging to my coffee cup during the day to keep me alert…our lives seemed a bit upside down during those days. I miss them. Wouldn’t trade them – not for anything.

My older boys learned to drive mostly with their dad as their wingman. With my youngest son, Kyle, I had my turn at giving carefully delivered reminders to brake with my foot pressing the floorboard in the passenger seat to somehow aid in the process. He chose me to clock the required daytime and nighttime hours behind the wheel. He offered to drive me the hour to Longwood University after school for my evening classes, so he could hang out with Dylan, my middle son, and then drive me home afterwards. It was on these trips I experienced the upside down feeling that crept up on me within seconds of getting in the car. It’s that type of panic that hits you after the fact as you realize what almost just happened…like the times Kyle would hear me say, “You might want to brake now” as we were almost passing the gas station we had agreed would be the next turn, or swinging into the interstate ramp at 50 mph and exiting with Kyle saying, “So, that’s how you merge.”

It was on those trips to Longwood that Kyle introduced me to the music of Jack Johnson. He had several CDs and would turn up the tunes while we traveled down Route 15 through Buckingham to Longwood as the sun was setting in front of us. I loved that time together and loved hearing Kyle learn to play his songs on guitar. I’ve always been amazed at how fast he can roll out the lyrics while keeping track of chord progressions with ease. I loved those days of watching my shy son deliver humorous side remarks, maintain his calm demeanor, and grow in quiet confidence through his music.

I took Erin to Longwood once in October of 2016. It was after she returned home from her long stay at the hospital. She was weaker and needed to stay even closer to me. I had a Friday night commitment to work with a few grad students from the ASD certificate program. We were going to meet to make visual supports for communication. Rob was later than usual coming home from work, so I didn’t have time to debrief with him about Erin’s meds and prepare him for her evening schedule. I quickly packed up her supplies and wheelchair and put her in the red KIA to drive to Longwood in the pouring rain. She had her bookbag full of new coloring supplies to do her own work at college. I remember I had searched everywhere that fall to find Halloween coloring books for her and had finally found them at the Longwood Barnes and Noble Bookstore the week before. I’ll never forget that night in Room 247 of the Hull Building. The few students were so kind to her, and she smiled and flirted with them while we all worked. She loved being there. When the session was over, the rain had stopped, and we headed home on the dark country road with the windows down. In our jean jackets and with our hair flying across our faces, we laughed and listened to Jack Johnson. This time, we had the soundtrack to the first Curious George Movie. Erin put her arms up and danced in her seat to the theme song, “Upside Down.” We stopped in Dillwyn to split a small dish of soft vanilla ice cream in the car. With Erin on dialysis, her fluid intake was extremely limited; but every once in a while, we shared a small treat. Soft vanilla ice cream was her favorite. I loved that night. It’s my only solid memory of taking Erin into the Hull building at Longwood in all the years I took classes and taught as an adjunct. She would talk about my going to Longwood. A night out for class was my diversion for many years. What began as an “upside down” moment and panicky feeling that rainy Friday night while unexpectedly deciding to leave home with her turned into a memory I’ll choose to keep close, and on occasion, smile over as I pass Room 247 in Hull.

Today, I’m feeling grateful for the girl who turned our lives upside down. She kept our lives spinning. She showed us the world through her lens, which meant we had to help her find her niche and ours in life with her. “Who’s to say what’s impossible and can’t be found?” We are stronger and better through living in her upside down world where we constantly asked each other, “Is this how it’s supposed to be?”

I don’t want this feeling to go away…

It’s been a season of walking. I anticipate the bumps in the road throughout the familiar avenues on the west side of Longwood University in a community where I live and work. As the miles accumulate, I look up at the sky both in the heat of the day and as the sun sets and the moon rises. I open my mind to think through things I’ve shut tightly away within myself. Most people spend some time during summer breaks organizing closets, basements, and garages. Others paint rooms, stain decks, and do landscaping. When life stands still in many ways, people open drawers and sort through the numerous items that were stashed away during busy days when time was short. I don’t do that. I am intentional about not opening drawers with things I know I must accept and cannot change. I find a focus in some form of work that is purposeful for me. What I give outside of myself feeds my soul in life. I don’t seek it out for that reason; but, selfishly, I know the return of mere involvement will make me better and hopefully contribute toward the betterment of someone or something else as well. Life works that way for me. I do best when my attention is away from myself. To stay home in seclusion…to stop over a period of time…might force me to unpack the boxes I’ve shut tightly and housed on shelves within my heart. I know they’re there and pass by them in fleeting thoughts. I function very efficiently in this manner. Is this a way of grieving?

Most people grieve over something. It’s not always a death, and trauma can rear its head in many forms…not just in one significant life-changing event. It can span over time. Most people have a few significant things locked away somewhere deep inside that are wrapped into some sort of loss from different stages of life. I have my few.

I mention how grief permeates throughout the lifespan because of its important role in preparing us-in preparing me-to function and flourish in my current circumstances of walking with the loss of my daughter. For me, reaching back into childhood, adolescence, and early adulthood has been a helpful exercise in the process of walking with grief and allowing it to mix in and out of daily life. It reminds me that daily life has its share of highs and lows, and any amount of optimism and focus on finding the good in all situations cannot replace the importance of recognizing the impact of losses in life and how it has changed me.

As I vary my routes on daily walks, I find myself looking up at trees…into the ways the trunks are split and woven into intersecting limbs bearing leaves into patterns that provide protection from the heat of the day. When I walk with Diana during hot days, we pick routes that have the most shady spots along the sides of the road and pause in the shadows locking our fingers behind our heads to breathe deeply as the wind blows slightly, bringing some relief and renewed stamina to push us forward. This is how we deal with the elements and set our walking pace while sweating through it. What began in early March with a growl and a “Let’s get it over with” from Diana has become a central part of our daily routine and an activity in which we all enjoy together. It is filled with laughter as Rob joins us prancing circles around us while issuing teasing challenges as he moves ahead at a faster pace. We listen to music together and watch for our favorite houses and yards with the purple flowers that I love.

Music brings thoughts of Erin. She joins us as we listen to music of any kind. For, music with nonsensical words, deep rhythmic tones, Disney flavored themes, simple faith, and all of our favorites from the 60s/70s either soothed her or provoked a humorous response from her in ways that now warm us and keep her close to us. Rob, Diana, and I share this together, since we were always a foursome in life.

We often cut through the cemetery to rest on the bench beside the paved drive that is covered by the branches of a beautiful willow oak tree; and in the peaceful setting, we sit quietly and wait for the coolness of the shade to calm us. I often return for a second walk alone and find solace in the brief pause on the bench beside the wide-based tree with the woven limbs that topple into clusters of low-hanging branches above me. As in “It’s Quiet Uptown” from Hamilton, we “are working through the unimaginable.” Months after we began our family walks and on a walk with just Rob, he played this song for me reminding me of its connection to the musical we had seen several months earlier. I had forgotten about this song from when I heard it initially. At the time, I was so excited to just have the opportunity to see Hamilton and was totally engaged in the whole presence of the performance and overall story. As we walked up a hill toward “The Avenues” (the Uptown) from “The Greens” (where we live) listening to the song, I cried and realized the impact of months of walking immersed in reflection and quiet and my connection to “working through the unimaginable” while walking.

Reflection is helpful in healing from the loss of Erin. Not the kind of healing of a wound that disappears completely from existence and leaves a scar on the skin changing its appearance forever, as is the impact of some other types of losses. This healing does not require our leaving her in the past, which is truly unimaginable. This healing is a process of weaving her life-a life that was so important to us-into ours. It’s a process that consents to mixing her existence into both the highs and lows of our everyday lives as we laugh together on our walks, look into nature, say her name, voice the fleeting memories that come to mind, and even let the tears well up in our eyes, spill over, and mix with the salty sweat on our cheeks.

I am no more certain of how to move forward from loss than I am of the success of my quest while walking to find two trees that have managed to weave their branches out of their trunks in the exact same pattern. I only know that each tree has either done it-grown into full leafy branches- or died. Each tree I’ve seen is either living vibrantly in the heat of summer, standing tall and providing the chance for all breathing life to exist, or it has ceased to thrive and exist due to the natural occurrences of life. I believe it is that way with our significant losses we encounter throughout our lives. Each can stunt our personal growth, even bring it to a halt, or be the fertilizer that strengthens the heart and soul. Each can promote a positive or negative change in how life is perceived or lived. As life continues, the collective impact of loss is naturally woven into what happens next. It takes root and can contribute stability if respected for what is gained from the experience, what is discarded, what is remembered, what is kept in the present. It is considered in future decisions and is drawn upon for advice when similar circumstances present in the lives of others. It becomes a component of wisdom that adds value to life in significant ways for what was loved and lost.

I choose to keep walking…

As parents of children with special needs, we orient toward fight or flight-one or the other-or sometimes both. We’re back and forth. When we send our children beyond the stretch of our arms, we do so with great caution. We are quick to anticipate what they need in the moment and provide it at the first sign of the rumbling stage before the outburst. We read the body. We see the eyes. We are on constant watch. We know what could happen. We respond before others see it. We respond so others won’t see it. We can catch it, scoop it up, control it, prevent it. The elbow drawing back, the side-look before running, the shirt jerked up over the face, putting hands in the mouth after digging in dirt patches on the sides of lacrosse fields while watching games, looking down while talking to other parents to see a muddy face and having a wet wipe ready to clean up before others notice. We know what can happen. We have sharp instincts and quick responses. We trust few to do the same. We come prepared. We understand. We notice when our child gets a second glance in public or when a childcare professional is describing an altercation as tactfully as possible but with some discomfort. Instinctively, when we see a look, sense a hesitation, or hear a concerning report from others, we draw our sword or lift our shield…ready for the charge..or the retreat…all for the sake of protecting our child’s dignity…and ours.

Last week, I held a mock IEP meeting with Diana and our graduate assistant on Zoom for special education student teachers who are currently quarantined instead of in classrooms in order to provide them an experience of attending an IEP meeting. I wanted them to be able to reflect on each component of the IEP and see a model of how to conduct a meeting with parents. It was smooth, very positive, and engaging. I became the case manager/special educator while the graduate student posed as Diana’s mom. I shared my screen of her current IEP and talked through her special education services that are now focused on transition in her post-secondary high school program that includes her participation in the Longwood LIFE two-year non-credit certificate program. Diana reminded me it was “her” IEP and giggled proudly on occasion throughout the questions prompted by her “mom” about how we collected data and used it to interpret progress in her performance. Afterwards, I thought of some of Erin’s IEP meetings with equally positive and engaging teachers and administrators; yet, hearing the realities of her behavioral struggles could sometimes prompt me to close up inside as I listened to episodes that were too familiar. It was painful to realize I couldn’t control how she reacted and wasn’t there to support teachers during the day; though, there were times teachers called Rob at work for Erin to get on the phone for a dad conference or have a hallway conference with me at the door of my classroom. We knew what they were seeing and were seeking any way to help Erin function better throughout the day. I’d waver between wanting to fight harder to support the team to help Erin be successful in school and wanting to pull her out of the situation to avoid probable frustrations of others before they reached exhaustion. I’d duck my chin focusing hard on the IEP draft reading every word; though, I’d already read it at home before the meeting, mostly to avoid those looking in my direction or trying not to directly meet the eyes of sometimes six to eight people sitting around the table. The process was methodical and somewhat scripted due to the complexity of the IEP, the time allotted for the meeting, and the legalities surrounding certain components where signatures were required.

I had an advantage in that I taught in the school system where Erin and Diana attended school. I worked to be supportive and vowed inside myself to always “stay in the same canoe” with those working with my girls. I knew of their support system as well and areas in which resources and circumstances were ideal and also where support could be stretched thin due to caseload numbers, sharing of paraprofessionals, and domino effects of clustering children with behaviors together in one self-contained classroom. When the girls were young, I dropped them off at school and picked them up each day around my teaching schedule. I had the advantage of having a quick face-to-face with Erin’s teachers at the beginning and end of every day during her primary years. Since Erin couldn’t tell me details about her day at school or tell her teacher on those mornings when she had not been able to calm down to sleep until midnight or had awakened in the middle of the night and was a bit out-of-sorts, I felt I needed to deliver the reality state of affairs when passing the torch. It helped to be on the same page, and, I believe, making that personal contact each day reminded each of us-the teacher-and the parent- that we were human. (Don’t judge me. I’m tired. I tried to get her to sleep or to nap. What worked yesterday did not work today…It’s your turn…) Seeing each other and sharing those bits of information about the schedule of events and behavioral data connected us and made us a team…not like the IEP team that met once a year and communicated on official documents with annual goals and objectives or nine-week progress reports.

Don’t wait to communicate…not lengthy details only in an email…not unloading tough revelations over a phone call…in person where you meet face-to-face. Offer it first. Not behind the barrier of the computer screen inputting the data during the meeting, but on a draft of notes on paper only briefly to keep the face-to-face nonverbal communication in the forefront.

I grew to love these teachers (and paraprofessionals). Though we were both assigned to Erin and to each other, we began to let our guard down and learned to depend on each other. It’s not about being right or wrong. It’s not about making the other one change. It’s about realizing that in order to “stay in the canoe” together as a team, we can’t stand up and tower over each other. We can’t jump out without tipping over the canoe and dumping each other in the water. We’ve got to pick our position, hear the other’s perspective, settle on a plan, and row in sync. Without blame, we adjust. It’s not about either of us anyway. We feel the pinch when we can’t fix it or we fail. We focus hard on fighting for the person (Erin) and the cause that is more important than being right or justified (her being able to function more independently and be successful).

When my oldest son was in elementary school, I once got a note from a teacher that had a “tone” that put me on the defensive. I read it in the car on the way home from school after picking him up. I was hot and immediately knew I would get angrier the longer I waited. I knew I would fester inside and replay the words again and again in my mind…

Sometimes I hate that I can’t NOT communicate.

With the teacher and the note, I knew I needed clarification, so I turned the car around and went back to school. I found the teacher and asked about what she meant, explaining I needed to ask so I wouldn’t get upset. To wait would have made me overthink the words in the note. I told her I didn’t want to misunderstand. It served me well to just ask.

When the stakes are high…When there is time, investment, and heart behind words exchanged, it can take everything inside to fight FOR instead of against the teacher, the system, the team and what you know in your heart will bring strength to the team on behalf of your child and the organization…

Once Erin went to school, I could no longer zoom into the moment and support her at a moment’s notice with what I knew worked for the most part. I had to learn to allow the team to help. That team was not just at school with one teacher in a classroom but spread down hallways to other staff members in the school who stopped to connect with Erin (and Diana) and across community settings, such as church and our neighborhood. Others learned to high-five and to smile when a “not so nice” comment might follow such as “You’re weird” or to grab a hand and lead her back into our yard if she wandered off or needed for some other reason assistance that only we could provide.

The team is always worth the fight.