Rise Up

I remember most the pavement. The silver stripe of the car running board giving way to the dark charcoal colored asphalt, with flecks of lighter gray throughout. I don't remember it being painful, as my parents tugged me back and forth, between the car and the street. I just remember staring at the floorboard of the old Maverick, the edge of the curb, the pavement. Back and forth, back and forth, as my mom tried to keep me in the vehicle while my dad worked to pull me from it in an epic game of tug-of-war. It couldn't have been more than a few seconds. I was breathless during those seconds, my face growing red as I helplessly watched the ends of my long blond hair hanging down, swaying over the floor of the car, then once again over the pavement.

They were not equipped. They couldn't manage the situation calmly, having a discussion about what was best for the children. They reacted from the gut. My father, thinking the latest abuse allegations were an opening for him to win, to conquer my mother and take something precious from her. My mother, afraid in her mama-bear heart that her precious children would be taken by a man who had already stolen so much from her. In that moment, my parents' responses were animal-like. Just the deepest, most instinctive knee-jerk movements of two people so broken and conflicted that they could only grasp and pull on what felt like their victory. But they were grasping and pulling on me, their child, a real person who would forever remember the way the pavement looked as her parents struggled.

I've been doing my own wrestling lately. Playing a daily game of tug-of-war inside my own brain. It's overwhelming sometimes, the power those instinctive thoughts and feelings can have over a person. It is easiest to let the habits and the instincts win. It is a fight to hold on to truth, when your brain is overrun by lies. It is easier to believe that I do not have my own value, but that my value is only in what I can do or be for another. My instinct says that I should not try, since nothing I do will be good enough or make a difference to anyone else. So the knee-jerk answer is to shut down, to give up, to let the battle rage on and to feel helpless to change anything. But the truth is that how I live my life each day makes a difference to me. And the truth is that I am valuable. I am not just a pawn in the great game of tug-of-war in the world. I can stand on my own two feet, and use my voice, and it matters.

When I consider that game of tug-of-war my parents played I consider my own powerlessness in that moment. I think about what I would do if I could go back to that day, when the forsythia was blooming along the driveway and the men were pushing and fighting one another and I stood by silently, letting my hair fall over my face to cover my eyes so I wouldn't really see everything. 

I want to go stand beside that girl, and sweep her hair out of her face, and whisper to her of her worth. I want to tell her that she has value far greater than she can understand. I want to show her the beauty of the forsythia; sweet, tiny yellow blooms formed by a Creator who cares about her so much more than each beautiful flower. I want to step back and watch her rise up, fill her lungs with air, and tell the world that she is not a victory to be won.

I can't go back to that day, but I can rise up now. I can sweep my hair back from my eyes, stop hiding and fill my lungs with air. I can break free from the tug-of-war being played inside my heart and my mind. I can stand tall and overcome and keep telling the stories of that precious girl, who needed to know her worth. I can rise up. And although I may feel like I am repeating myself, like the story is the same, I can keep telling it until I don't remember the pavement anymore. Until all the fear in my heart is replaced with Love. Until my knee-jerk reactions don't leave me in a worthless game of tug-of-war, because my own heart knows its worth. Until the image of that day is of a girl, standing tall and proud beside the forsythia bushes, knowing how much more beautiful she is than the sweet, yellow flowers of spring.

Do you know the feeling, this game of tug-of-war that seems incessant and constant and overwhelming? Perhaps you can see nothing but pavement today. It's possible you are being pulled in different directions by commitments and responsibilities, or by the story of your past, or by feelings that you'll never have enough, do enough or be enough. I want to stand beside you, too. I long for you to break free from the battle long enough to see all of the forsythia in bloom. Those bright yellow flowers, the first to rise up and herald the arrival of spring, are created for you to enjoy. And you are more valuable than those flowers to the heart of the One that created them. So rise up, friend. Even if you feel like the battle is on repeat and you're crying out with the same words, rise up. Rise up, again and again, victorious in the battle for your own heart, filling it up with truth and love.

It doesn't seem revolutionary, but it is. Each of us taking our place, owning our story, rising up out of the daily battle, walking with one another, doing our part to see the beauty in this world and spread it--this is how we change the world.

Click the link below for some beautiful inspiration and strength for today, because we rise up together.

Rise Up, by Andra Day

Five Years: A Footnote

They told us this would happen. I read all the stories that promised me that one day, Down syndrome would be just a footnote in our lives. It would appear in teeny-tiny subscript, not as the bold heading at the top of every page of her story. At the time, I couldn't believe it. The day she entered our world, those words felt so huge and so heavy, I couldn't begin to imagine how much they would shrink. As I clutched her to me, staring at her red cheeks, folded ears and creased palms, I couldn't understand how this small, helpless, sweet bundle brought with her this enormous, heavy, scary suitcase we would have to unpack. All I could think was that I had so much to learn, there was so much we didn't know, and I was so afraid of what our future held. I didn't speak the language yet, of early interventions and individual education plans and occupational therapies. I wasn't sure I wanted to.

In the beginning, I tried to hope that one day our lives would not revolve around her diagnosis. But it was so hard at first to see past the feeding difficulties, my fears for the future, and the disappointment I felt because of what I thought her diagnosis meant. I thought it meant something other than our beautiful daughter being herself. I thought it meant sacrificing years of hopes and dreams.

We did all that anyone can do. We put one foot in front of the other, we tackled one challenge at a time. Those early days did take a lot of strength and energy. Even though our girl was born healthy, Down syndrome and the challenges it presented did seem to take center stage for a while. Feeding her was so difficult, waking her every two hours, pumping for 15 minutes after every feeding, mixing high-calorie formula with breastmilk and praying she would begin to gain weight. I remember sitting on the floor next to our bed, listening to the whir-thunk-drip of my pump, looking at her laying on a blanket next to me. I was thinking about the next therapy appointment, the books I should read and the sleep I wanted so desperately. I cried and prayed that I would have the strength to give her what she needed.

Just when we thought we were getting a system down, we began to hear strange noises in her breathing, lungs that sounded like a bowl of Rice Krispies that had just been hit with milk, snap, crackling and popping our way into an early and prolonged hospital stay. At just six weeks old, our baby girl was diagnosed with the respiratory virus RSV, and words that bothered me so much more, "failure to thrive." When her pediatrician saw my eyes fill with tears, he told me he was sorry, but she had to go to the hospital. It felt like my failure, my inability to keep her healthy, to give her what she needed to grow. It felt like the weight of her success was on my shoulders, and I wasn't strong enough to carry it.

That hospital stay was five years ago this week. When I sat up all night, rocking my tiny baby who was restless from steroid treatments and struggling to breathe, I couldn't even begin to imagine how beautiful her future would be. I was consumed by the now, by her needs and by my fear. I worried about her brothers, with needs of their own, being neglected for the sake of their baby sister. In those earliest days with our sweet girl, I thought Down syndrome would be the bold heading of every chapter of her life. I could not have been more wrong.

The chapters of Brynnlie's life right now are full and rich and exciting to read. There is a chapter on ballet, where we watch her twirl and jump and learn and interact and dream of being a superhero ballerina.

There is a chapter on the care and keeping of baby dolls, with interactive moments of loving on her favorite real life babies. Presently, every chapter has a reference to Daniel Tiger's Neighborhood, which she could not live a day without. Right now Brynnlie's story is about pretending to bake everyone birthday cake in her play kitchen and pouring us all a cup of coffee. It is about how she is leading her class of typical peers, telling them how to build a bus out of chairs, then making them all sit and take a pretend drive to the Zoo together (with her as the driver, of course).

I couldn't understand it then, but now I see it's true. Down syndrome has a place in our family's story, but it is not the bold heading at the top of every page. It doesn't dictate each new chapter we will explore. It is simply a footnote, a small piece of information that enhances our story and helps others to understand where we are on our journey. We have new chapters ahead of us, and I'm sometimes fearful about them as well. Starting elementary school, reevaluations and meetings and individual education plans are still part of what we will face. I still get nervous when she gets a bad cold. But I have learned that this story is really about Brynnlie Grace, and she is not about to let Down syndrome or all the rest take away from the chapters she gets to live.

I wouldn't want to write her story any other way. I cannot imagine our family, our community, without Brynnlie Grace. Our view of the world is broadened and brightened by her presence, and also by the fact that she does have Down syndrome. I love having that footnote enhance our lives, and the lives of those who know our little girl. If I could go back in time, to find myself young and dreaming of my future and family, I would tell myself to dream of one day having a little girl with Down syndrome. I would tell my adolescent self that it was the best thing that could ever happen to me. I would tell myself as I planned for my future family that it would be full of more love than I would have ever believed possible. I would whisper to my heart that this was actually exactly what I needed for my journey, that it would be the extra glue that would hold our hearts together, slow us down, and remind us of all that was really important. I wouldn't believe myself then. I have a hard time believing it now.

We're only five years in, but her story keeps getting better and better. Life is good. It's beautiful, really. And having Down syndrome noted among the pages of Brynnlie's story only highlights how beautiful her precious life is.

it is already winter

Today, the snow settled softly on the barren branches of our tree-lined street. I will probably never have words to describe the stark beauty of the landscape in winter, with the sky fading from rosy pink to pale gold to a deep sullen gray. The black branches of the bare trees shoot upward into that pastel colored sky, creating harsh contrast. It is already winter where I live, and it brought with it the kind of cold that settles in your bones and requires gallons of strong, hot coffee and layers of fuzzy, soft blankets to eradicate. In winter, everything is so crisp and clear and frightfully hard outside. The view is breathtaking, but so is the bitterly cold air.

Winter feels so... Decisive. 

You are either indoors, cozy and warm, or you are out in the elements, exposed and body shaking with cold. One step outside the door and you are slammed in the face with the reality that is Winter. Beautiful, yes. But so severe and unforgiving, too.

I am feeling, in the face of this decisive winter season, plagued by indecision. I am confronted with big choices about the work I will do, the words I want to write, the way I will live and love and parent. I am also challenged by tiny questions like what to have for dinner, whether or not to go to the store, and if I should even attempt to clean those mysterious blue scuff marks off the hardwood floor. I get lost in the space of making lists, brainstorming ideas and looking for solutions and never actually take steps to move forward.

The reality is becoming more and more apparent that the time for wavering in indecision has passed. I am running out of room for uncertainty and hesitation. I feel pulled to put on my coat and hat and gloves and risk stepping out into the cold, with all of its incredible beauty and bleak decisiveness.

One year ago this month, a friend of mine passed away. She was young, a mother to three-year-old twin girls. We thought the days were long, when we sat refilling steaming mugs of strong coffee, watching our little ones play together, bemoaning the trials of potty training and sibling rivalry. We were in the light and warmth of each other's company, unprepared for the bitter cold air about to fill our lungs.

Her passing feels so... Decisive.

Her bright spirit was here, and then in a moment, her light and warmth were gone from this earth. My heart aches, exposed to bitter cold, knowing that her babies don't hear her resonant, earthy voice singing to them every day. My body shivers and gets stuck, frozen in place, wondering how it can be possible that such a beautiful, generous, welcoming person has left such a cold and gaping hole.

Losing my friend so young and so suddenly makes me think more fully about the work I will do, the words I want to write, the way I will live and love and parent. Her absence, while it produces a harsh ache, simultaneously exposes me to the beauty still around me. It reminds me to be unutterably grateful for the blessed opportunity to wake up in the morning and choose what to feed my family for dinner, make that necessary trip to the store, and stare lazily at those mysterious blue scuff marks still covering the hardwood floor.

I have grown tired of my own hesitation. I want to embrace the decisions I make, to know that I am living the life I am choosing. This life is full of work and preparation and mundane daily tasks and infinite failures but each of them always begin with my choice. My decision.

My heart feels so... Decisive. 

I feel like I am finally ready to live with boldness. To stop wavering back and forth, caught in the web of my own inability to choose, and to be bold in ways I have not felt bold before.

My friend was bold. She was daring; some might have called her audacious. She made gutsy choices throughout her life and she owned her decisions as well as their consequences. Living boldly sometimes produced seasons in her life that were harsh and cold and severe. But looking back at the whole landscape of her life, all the people she loved and those who loved her, all the lives she impacted and changed, I believe it is easy to see that living boldly produced a life that was in all seasons incredibly beautiful.

Bold is not going to come easily to me; I doubt it comes easily for anyone. Stepping into boldness feels like stepping outside into cold winter air. It is beautiful and courageous, a sparkling cold adventure, but it can be hard and bitter, too. Just sharing the proclamation that this season will be one of boldness for me is like posting an icy prediction of my own failure. Deciding to be bold presents a danger all its own.

But there it is... I have already decided. I feel like I could waver more, continuing to consider how challenging bold will be. I could write about how scared I am or what it means or the ways I will need to prepare myself and bundle up against the cold. But it is already winter, and I haven't got the time.