A Moment (1)

She flipped over Emmy’s hand and uncurled her very tiny pinky, looked up at me until my eyes met hers and she spoke. “See this line right here? The one that is crooked? Look at yours. Yours is straight. It’s not crooked.” And I felt like our traveling at light speed journey with all it’s crazy anxiety and facts swirling in my mind-it all came into perfect clarity in one moment. In one second. When I saw that she possessed something other. Something different than what I gave her. Than what her Daddy gave her. The crooked crease that represented so much more. How had I missed it? I had seen everything else, but I missed this. After all, I knew her best.

I traced it with my finger before they began to measure each section of each digit. I traced it so that it was embedded in my mind, accepting that it was there, not going away, that I couldn’t change it. I was acknowledging the “other” and also the fact that she was very much mine. I kissed the top of her head covered in silky black hair, reveling in the softness of it, how much I loved it. I closed my eyes and breathed in the smell of her. I looked back down, opened up her fist again, took in the crooked crease once more. And again. And once more before I let it go. Clarity. For once in the last 7 months. Painful clarity.

They went about their shuffling and procedure and it all went back to blur. The observations being spoken aloud, like jumbly nonsense spoken underwater. And I kept thinking about her pinky. I saw the crooked line even when I closed my eyes. Clear as the button nose on her face, as obvious as the tear I choked back.

 

 

 

Dear Emmy, 

Yesterday the sun showed up in the dead of February cold and I watched you run down our sidewalk chasing your friends’ laughs. I see those legs are lankier now and your stride is quicker. Your 25 pound frame is carrying a lot of pride on its shoulders these days and independence is all good with you. You’re wearing your three years well, Emmy-doing your own thing with classmates and teachers and mommy’s learning to let go a little bit at a time. 

You spend your morning hours away from us and it is blowing my mind thinking of you in the great big world beyond my arms. You walk down the big kid hallways and have your own seat on the bus. You mingle with kindergarteners and play in the gym. You use scissors and hole punches, paint brushes and glue and I think you know more people than any of us did when we were three. You’ve become a little famous, little girl. 

I’m learning that the big deal things of yesterday aren’t always such big deal things today. The things I thought were scary are proving you brave and the things I thought were “never” are now “of course!”. The things I thought would be so hard are the exact things that make me sure of myself and you. You make it all seem like it’s nothing big, Em with your newfound courage and your winsome grin. 

I’m so proud to call you mine and always so grateful for the things you show us and the light that you bring. Great job, Emmy or “high five” as you like to say. High fives for being amazing and beginning to make your way. We’re still here watching, shaking our heads at the goodness of it all. 

Love to you,

Mama

  

The Visitor

A visitor came to my door-a stranger, his face and purpose unknown and he asked of me to come in and stay for a while. 

Reluctant, I tried to refuse him, for his unannounced visit seemed dangerous to invite inside. But as I pushed the door closed, he slipped his hand between our life and his and he begged me not to shut him out. There he said to me, “I may seem a stranger now because we’ve never met face to face, but I’ve been here all along, from your earliest days of joy, you just didn’t know it. But now I’m asking you to allow me in, allow me the place designated for me. I had permission to come from One who knows better than you or I.” 

So I opened the door and showed him in, seeing him more closely and clearly now as I eyed him up. I studied his gait and his way…he wasn’t what he appeared to be when I saw him from the inside looking out. From here he was somehow heartbreaking and intriguing all at once, filling up my space in the most unexpected manner. He shared his name, which I had never heard and offered his hand. As he reached for mine in his awkward confidence, all I could do was stare at his invitation, ready and waiting for mine. He seemed unaffected by my hesitation, determined to receive my open hand in return, but I said I wasn’t ready yet. I needed to understand why he was here. “Have a seat”, I said. And he took a place that seemed to be waiting for him, though I never missed his absence before and even now, I wished him on his way, leaving me to go back to my normal. But I left him there to do what he must.

It became too much to stare him in the face, so I went about my business wondering if he would go if I simply ignored that he was there. I tried stepping over him as I walked through my routine, but his presence was overwhelming and begged me to confront it. Each way I turned, he seemed to be waiting, changing the direction I was headed. Frustration began to rise to the top and spill over and eventually I couldn’t help but cry out to him, “I never planned on you coming! Why are you here?!” He humbly looked down, as if to wait for me to realize he couldn’t and wouldn’t be leaving…

Exhausted I relented and stopped trying to remove him or pray him away.Though it was never my idea to invite him here, I began to respect him and give him his position. A new question became my effort and I began asking “What will you teach me if I consent to letting you have your place here?” 

His answer has been long and curious, but it involves a joy I couldn’t have heard elsewhere, the kind that comes after seeing the flip side called pain…the kind that showed up unannounced on the doorstep of my plans, asking me to make room.  He offered me wisdom that couldn’t be conjured up or manufactured because it was refined in the hands of hardship. He showed me gifts set aside for me from the One who allowed him to come and delivered grace I wouldn’t have known if I’d feared him or ignored that he was there. 

A visitor came to my door and he lives with us still. He is what he is, but also a little more. His time with us needed our acceptance or life would be very uncomfortable and not nearly as full. Why he came I only know in part, but one day I’ll know in full. In the meantime, he’s here, and I’ve opened my home, shaking hands with an unforeseen visitor whose now part of the shaping of me, of us, of this surprising story that’s ever unfolding.

 
(I’ve been thinking about pain and how sometimes it deserves a place. Deserves respect. 

This is about our unexpected visitor who came in the form of a diagnosis, which may have been difficult at first, but I’ve learned that I can let it “be”. Let it teach, let it abide with us. It’s helped me heal.)
(Photo credit, Lindsay McIntire)

Dear Peter,

I knew you were good the first time I saw you. I had yet to meet you, but I saw your eyes, dark and true and they told me you were good. 

We were babies with college degrees when we walked the aisle together-this evidenced by the fact we had chosen both board games and fine china on our gift registry. We thought we were clever and knew everything and we were ready for life and what we thought it would give us. Then we had four children before we knew what hit us and not all at once, we realized that our days wouldn’t always be what we planned and our futures aren’t always able to be chosen. We knew there would be bumps in the road but not scars to bear and we didn’t know we’d need Grace on top of Grace to make it. But we promised each other a lifetime in blind and limited faith and I’m so grateful we did. 

As Emmy’s mom, I am surrounded by cheerleaders-high fiving my efforts for her and spurring me on when it gets hard. I’m applauded for my work and have a vast support system to share the burden of uncertainty and the joy of accomplishment with. I need them and they make this journey sweet. 

But you love Emmy and our other children quietly. Endlessly. Constantly. Even when no one cheers you on. You pick up where I come up short and you take the baton when I’m weary and cranky and “just can’t take it anymore!”. You are steadfast when I ride the roller coaster of emotions from one extreme to the other and you make time for playing and movies even when I’m convinced there’s no room for that in our days. You are trustworthy and loyal to us and you work endlessly to provide for us-without applause, without recognition, often without any praise. You remind me that there is quiet time left for just us-because we were us before we had them and remembering each other is to be kept sacred. 

We haven’t seen the only or last challenge life will throw at us, but I feel hope more surely now because of you beside me. My sight for Emmy’s future is in the days that are just ahead but you are the one who dreams for her. When I only plan for the minimum, you remind me it can be much more fun than that. You fill in the color to the black and white I lay down. 

I guess what I’m trying to say is thank you. 

I guess what I’m trying to say is that you are good.

I guess what I’m trying to say is that I love you. 

Always,

Katy

  

Photo Credit: Lindsay McIntire

The Reason I Write.

  
I write to Emmy because I want to leave her something beautiful. 

In a world that is full of rush and little reprieve, brimming with harshness and short on harmony, creating something for her that is my heart, that is my best-something that soothes her when life becomes too much-this is my earnest desire and wish.

I want to leave something beautiful for all my children. To each, gifts both tangible and not.

It is interesting that beauty takes on a different definition than it used to for me-now using my mothering eyes and perspective. From here I’ve learned that it is not a perfect version of myself and the best things that can be bought for my kids. It is not parenting without failure, but rather leading them with  grace. It is sincere apologies after loud and frustrated words. It is stopping to hear them when they tell me the things that made them laugh or the stories they’ve dreamed up, even when time is short and responsibility screams my name. Listening to their words and heart when they cry and helping one more time when I feel I’ve already given more than I am able. Carving out time just for each one in the crowded places of life and putting down my distractions so I can be truly present to them. It is creating quiet refuge for them in my arms when the world rejects or harms. It is gratitude from the very depths of me for them-so much that it’s tangible in the way I hold their cheeks and kiss their heads. It is all of these things.

But it is also my letters. I’ve found a way to express to them how I feel and how to mark the momentous and minute-it is in words, in simple black and white. Not always polished and certainly not perfect-but maybe all of these broken parts may add up to an aesthetic expression of my affection for them.  

Someday they may be desperate to make sense of nonsense. They may believe that chaos and cruelty are winning and they may feel overcome or afraid. I want them to have something I tried hard to make lovely, something that softens the rough surfaces of their lives, something that they can return to-to remind them of who they are.

I write because I want to leave them something beautiful. 

Her Next Steps

In a few weeks I’ll be passing a torch. The one that I’ve been carrying for three years now, the one that represents a large portion of my time, effort, and heart. In a few weeks, I’ll hand Emmy’s educational and therapeutic needs to her new teachers and therapists, outside the security of our home. Outside my ability to watch over all that is taking place, beyond my boundaries of protection and safe keeping. Replacing it will be a kind of blind faith that she will thrive in her new environment and that others will be blessed by caring for her.  Replacing it will also be a heartache I haven’t known yet-the beginning of a new chapter that is letting my vulnerable child go while still trying to keep a watchful eye. It seems a little impossible right now, at the beginning before I’ve tried, before I’ve experienced it in real time. It is the beginning of a trust I’ll need to know well in the years to come.  I don’t think “difficult” quite captures my feelings around letting my bright eyed girl with the wide smile go into the world that will continue her education.

As her hand leaves mine for the first time, I want to convey that I wish for them to love her. As she wraps her fingers around theirs, I want them to think of her as a newborn that did the same to her Mama and Daddy. And how we marveled at her soft, dark skin. I wish I could recount for them her first painful months and the life changing moments we had following a diagnosis. If I could transport them back to the days when I searched her eyes for potential and promise, I would. I would have them with us in the room when she took her first steps and said her first words and they would see joy in its purest form as we watched her do things I secretly wondered if she’d ever do. I’d want them to see how her siblings have become different kinds of kids, ones who now notice needs beyond their own. I would want them to see how she turn heads and makes everyone feel special. I’d want them to realize a thousand things at once all adding up to the amazing little person of Emmy.

Maybe I could write it all down for them and hand them a novel-the story of how she’s changed us. Or a picture book, documenting the memories we wouldn’t have without her. But I won’t. Because they’ll see it for themselves and all we need is time and patience to watch it all unfold again.

I’m passing them the torch, but I’m still running and I’ll still be rooting for her for all the steps, turns, troubles and triumphs of her journey.

Dear Emmy,

I feel summer slipping away, one barefoot night at a time. I want to hold onto it-not let the freedom we find in late morning wake-ups and lazy breakfasts go.

  
We’ve had the adventures we hoped for and the everyday just being that fills up July afternoons. You’ve had sandy feet and salt water skin as you rediscovered the ocean and experienced the freedom of walking (walking!) on the beach and letting the tide touch your toes while you held on tight to my fingers. Your tan skin has reminded me that you’ve had your time in the sun, not left out because you couldn’t keep up.  I’ve loved brushing your long curls into a side ponytail over and over again to keep your neck cool and your brown eyes clear. We’ve eaten freeze-pops all day and you’ve learned how to push them up all by yourself, your tiny fingers not minding the sticky drips of grape and blue raspberry.  You’ve hustled down the sidewalk, chasing the bikes and scooters ridden by your friends, but your favorites were still bubbles and chatting, making sure everyone heard a hello. I’ve heard “Mommy, Mommy, watch this!” so many times to which I’d respond, “Ok, I’m watching” and only then you’d spin around in the grass or make a silly face.  You know what it is to have fun now, to tell us what you want and need and it’s all been so very sweet.  

  
So now the seasons are changing and I keep singing my old favorite song that says “Summer’s beginning to give up her fight”…and in my heart there’s a shift to what’s ahead for you when you turn three. School days and new teachers and this quiet time we’ve had at home won’t be all you know anymore. I do know that just like you’ve done great big things in our tiny living room and in our front yard, you’ll keep doing them in the new places. But as the leaves change this year, I’ll be holding you tight because the never-again days of toddlerhood will be ending. But I love all the seasons of you, Emmy, and just like we’ve learned to savor the summers and find hope in the winters, these new days will be rich with colors, songs, and new stories to tell. 

  
I love you all the time, 

Mama

Dear Ava, Jude and Piper,

As long as I can remember I can see the picture memories of you leaning in over me, all three of you scrambling to hold me, your three sets of brown eyes looking out for me. I couldn’t tell you then but your noses scrunched into mine, your soft kisses, your arms wrapped around me-those things were the first notes of your constant song in my life. My first days – they all held moments of light from you. 

I don’t know if you noticed, but the worried wrinkles in Mommy’s brow went away when she saw us together. And the tears she cried for a while? She wiped them away when she watched you play your days away and you reminded her that everything – that I – would be OK in the end.

Hours upon hours of visitors came to help me walk, eat, sing and talk. They taught me with you before me, beside me, behind me… and after they left, you were the ones who kept showing me the things of happy childhoods – the freedom I could earn if I kept trying. You cheered for me and called my name from so many directions that I didn’t know where to look first. And I never knew what it was like to be alone.  

I ask more of you than most kids will have to think about and I’m not sure how to thank you for walking ahead and always checking behind to see if I’m on my way too. You circle back and make sure I keep going even when it slows your pace. From where I stand, our world has been so much fun – full of the things I love, like hanging on your every word, watching you dance, and singing the songs we clap to. I can’t wait for the days we’ll have together that seem so far away now… but they are right on our heels waiting for us to fill them and I’ll need you then too. 

I want you to know that your place, your role, your hand in my life is a gift I didn’t know to ask for, but one I couldn’t do without. Thank you for braving this unknown trail with me. I hope the journey has been good for you – ’cause so far for me, I’ve had the best of times with you. 

Love,

Emmy

  

Dear Emmy, 

I’m not sure how you do it, but you make us all feel like we did something special to deserve your smile. I see people walking by, minding their own world and suddenly you catch their faraway eye when they hear you say “Hi!”…right at them, with no second thoughts about who they are, or how they aren’t inviting your interaction. They weren’t looking for you but you found them.
And then, just like that they stop. And words like “Oh my goodness, that smile!” and “Well that made my day!” come out.
And for some, there is an inevitable urge to reach out their hand to touch yours…as if to say “Thank you for that…” and then it’s all over-you got them. You win their affection and they do all they can to get another grin. It’s your thing.
I’m not sure how you do it, but your curious joy puts me right on the edge of my seat. You distract me in every way and I simply can’t stop watching you. You make me proud a million times and then some when you go around making our days.
I’m not sure how you do it, Em. But you do. You fill our cups and you change our pace.  You make us feel noticed-which is all most of us want anyway. How did you know?

All My Love,

Mama

What to Say When…

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A good friend asked me to think back to the first days after Emmy’s diagnosis and write about what was helpful when others reached out.  As a friend, it can be difficult to be on the outside looking in as this new normal unfolds for someone else. For me it’s hard to give a black and white, one size fits all answer of what to do or say in these situations but I’ve tried to remember the things that helped us in the very beginning when things seemed so uncertain and confusing, scattered and scary.

The first thing I remember was needing some space. But not too much.

At first I just simply could not talk about Emmy having Williams Syndrome. When the words started leaving my mouth, they were closely followed by big soaking tears and choked words and honestly, I didn’t really have much more information than someone could find on the internet. I didn’t have answers, only a new name to all the doubts and questions I’d had over her first 8 months of life. What I did know is that she surely would not be like my other children and her future was, well, just too much to think about let alone talk about. But that didn’t mean I didn’t want my friends “around” in other ways. Simple texts from them with no expectation of a response from me were a reminder that people cared.  A simple “I’m thinking of you today and saying a prayer for you now” took some of the sting away and reminded me that life was still going on outside my upturned world. A few friends wrote to say they had a meal for us and some asked if they could take the other kids for an afternoon while Emmy had an appointment.  Tangible help, simple words, consistent touch points, and a lot of grace-these things were very meaningful, even if I couldn’t express it at the time.

Then I needed some cheerleaders.

I didn’t feel better when people would tell me about someone else’s high functioning child with “Down Syndrome, Autism, or (fill in the blank) Genetic Syndrome”. Even as her parent, I knew there were no promises just yet for Emmy.  We still had yet to see many specialists and she was still so young that the days to come were realistically, unclear. What did help were words of encouragement to me as her mom.  “I know you can do this, Katy.  It’s really hard, I know.  But I believe in you and you’re a great mom”.  Those were the words that helped me rally some strength.

And after more time passed, these things helped too.

When people took a little time to read about her diagnosis on their own, it showed such thoughtfulness and concern.  I appreciated when someone would say something like “I saw that kids with Williams Syndrome are usually very relational” or something of the like.  It meant so much that they took the time to take a glimpse into our new world.  After a few months, and along those lines, I welcomed questions about her-even if they seemed “dumb” to the person asking.  If you genuinely were curious about Emmy and about her condition-I was so grateful that you wanted to know her more.  Actually at that point, I had a lot of newfound knowledge too…and I’m a talker, so I welcomed the questions.  Looking back, I think the only thing that hurt was silence.  I would have rather someone brought something up than be afraid of offending me and saying nothing.

Most of all, I loved when you loved on Emmy.

There were no guarantees made to us in the beginning.  I longed for them, but there were none.  Everything was a “probably” or a “might” or a “hopefully”.  I hated this at first but what it pulled out of me was a decision-a choice-to love Emmy for exactly who she was right then and there.  I loved when our friends and family asked, “Can I just hold her?” I loved that they simply wanted to be near her and just like I don’t want to be loved for what I do, but rather for who I am, I wanted that for my Emmy girl too. No expectations based on what the world would wish her to be, no crossed fingers that she would one day “contribute” to society, just simple acceptance of who God made her and a desire to get to know her.

In conclusion, I wasn’t consciously looking for anything in particular from people, but when someone reached out in the best way they knew how-I was humbled and thankful for the community, the curiosity, the effort, and the love. Thanks for reading.:)