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

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

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.:)

When we first learned that you had Williams Symdrome, people reassured us that God knows exactly what He’s doing when He gives kids like you to parents like us. To Mamas like me…

I would shake my head and argue every time that I wasn’t any more prepared or special than the next Mama.  I couldn’t let those words sit with me but now I realize that they are in fact, true.  God did need to give us you-but not so much because you needed me.

He knew how much I needed to change, how much more I needed to see. And because He loves me, He wouldn’t leave me there unknowing and always wanting.  He knew how fast I was running through life, checking off our days, only celebrating that we made it through another 24 hours.  He saw the fear that lived in my heart-the kind that made me flinch at the thought of any pain that might come near us, the kind I’m more comfortable with now because the pain came and it isn’t as scary as the anticipation of it.  He was familiar with my survival tactics and the many moments I missed in the name of ingratitude or exhausted distraction.

He wanted me to see the many, many others who live, struggle, limp and thrive with a disability.  I needed to look at their eyes and begin to understand that success  isn’t always a milestone met on time, but simply a choice to keep trying even if it’s hard.  He helped me let go of the happiness that exists “only if” and be open to the hard earned beauty that comes from a life interrupted.

Emmy, you are tiny but your presence is big, overflowing into all the parts of our lives big and small.  I wouldn’t have asked for you to have a disability but look at all the things I’d never know, never celebrate if it wasn’t for you.  I’m thankful that God knew, long before we did, what it would take to make me smile big at a story I couldn’t have written-a life that is full of precious lessons learned and memories made.

All My Love,

Mama

“Wheelhouses are small spaces with excellent visibility, where the skipper is in control of the boat and prepared to face any dangers that it might encounter. In a wheelhouse, a boat’s pilot can practice his ‘core competencies’ in an area with lots of ‘blue ocean’ and the opportunity for plenty of ‘blue-sky thinking.'”*

I really wanted to drink lemonade.  I wanted to sit back and enjoy the view and the fruits of our hard work in these months. I wanted to watch the sun rise and set be pleased, relieved and filled. I wish I could plan life and have it obey me, allow me to tame it.

I’ve found myself a bit undone though. Unexpectedly but maybe expectedly actually, when I think about what I’m trying to accomplish-the raising of four souls who will understand who they are and Who loves them better than I, a home that houses peace that we can return to after a day that’s long, a wellness and happiness in myself and all that well-roundedness that I hear is so important. And also the endless amount of things that I spread myself way too thin over till I come up empty and wondering how on earth I ended up here, with nothing to give.

Here. Where I’m overwhelmed with life and my shortcomings and not sure what absolutely necessary thing I should tackle next with the very little I have to offer. I want so badly for life to be easy. I want so much for answers and reassurance right in front of me in black and white where I can see that it’s true that I’m doing ok, that I’m liked and loved. But then I remember again that the hard things remind me of who God really created me to be and how easy doesn’t make me better.

Here. Where I’m asking, “What do I want to do? What do I REALLY want to do?” “What do I love and what moves me?” I’m trying to wrangle this wandering spirit in me that moves in impulsivity and hand it over to Jehovah Raah who is “The Lord my Shepherd” because He leads me and helps me to keep simplicity a reality. He centers me on what I love. And not what I think I “should” do or do only because I’m afraid of not.

I got out of my wheelhouse recently and it hasn’t gone well. Thankfully there was grace even there. Grace in the form of a husband who listened long into my words laced with tears. Grace in the form of friends who told me where to put my foot when I wasn’t sure there was ground to stand on. Grace in the form of the early spring sun coming out of dark winter.

I’m always tempted to keep a pretty facade on our life. One that doesn’t reveal stumbling or doubt or need. But then I think of how relieved I am when someone braver admits to these very things and I feel my shame and my pride fade. So here I am. Admitting that there are times when life feels hopeless, impossible, distracted and disorienting but Hope has found me again and I’m seeing the blue ocean that I love and long for. The one that allows for “plenty of blue-sky thinking” and a place to write these words.

*Bruce Watson, Senior Writer for DailyFinance

I wasn’t blindsided by Emmy’s diagnosis, it was more like watching a large wave form in the ocean as I was standing in the surf. I saw it coming, ominous and scary and there wasn’t anything I could do but stand firm. I felt the sand moving out from beneath my feet as the water sucked out and then I braced myself for the pounding force of the truth. You can’t outrun truth and knowing that this wave was a powerful one that could knock me over and send me reeling, I tried to stand as strong as I could.

And then for a few months,
I cried.

As I regrouped I moved forward with steely determination to do my best by her. I stood in the face of the ocean of Williams Syndrome and did my best not to see it as a foe but rather part of who Emmy is. I learned all I could, and spent many long moments staring at her-taking in both who we made her and trying to accept who Williams Syndrome had made her. I stared so hard that I thought I might be able to see into her future-hoping for assurance that she would be ok when she was 5, 15, 30…Her dark eyes seemed endless and I decided that her huge smile was a gift. Her soft skin and button nose were intriguing and irresistible…even if slightly unfamiliar. As I stared I knew I didn’t really have a choice to back down and bail out. So I simply clung to Hope and kept my head up and waded through the new waters, one step at a time.

As this New Year turned, I found myself finally wanting to just sit down on the beach. My legs are tired. Even though I wasn’t blindsided, I still got hit. The inevitable arrival of altered dreams did a number on me. So I guess there does come a time when rest is just the thing. Right now there isn’t a wave on the horizon and I think there may be time now to sit and watch the rolling in and rolling out of things and also to drink some lemonade. There are also beautifully amazing things to see from this spot-things I don’t see when I’m planning and learning and speculating. I see a bright eyed, curly haired, smiling Love that is a treasure I can barely describe…I know that the tide can turn again and it may ask of me to bear down again. But until then, I’m choosing to slow down a little, to catch my breath, to dream about the next things for us.

It’s been two whole years since I first reached out to pull you in, since I first felt your head lay on my chest, and two years since I first tried to memorize your face.  Two years ago, I could not get over your hair as I stroked it with my hand, I let your tiny fingers wrap around mine, and I watched your Daddy hold you while you slept.  Two years ago I whispered my first prayer of thanks that you were here, part of our family, part of our story, and part of my heart.

Two years ago, I was a different Mommy-I was thankful for all I had but didn’t realize all I was missing.  I was fairly certain I knew how things would go for us, and unaware that life’s suprises could make me someone new.

Emmy, your smile reminds me of all that I am hopeful for and at the same time, all that I am grateful for just as it is today.  The words you say, the seconds you stand, the steps you take, the songs you sing…I love you more than I can tell you, more than these words I write.

Happy Second Birthday, Emmy Girl.

Love,

Mama

I’m not sure I always know what to do when Williams Syndrome shows itself clearly in our every day life. It’s a strange combination of pride an anxiety that well up as I watch Emmy interact with the world. There was a day last Spring that I go back to often…it seemed to mark a truth about the future that made me pause. We went to Ava’s classroom for their annual poetry reading day.  Piper, Emmy and I went to see big sister share her work. We came with many other proud parents, each eager to hear what their child had created. As we sat down in miniature chairs, Emmy caught the eye of the Dad next to us. He smiled at her and that was all she needed…

“Hi!”

…”Well, Hi there! Aren’t you cute! How are you?”

Smiling, staring, locked in on his eyes, Emmy again said, “Hi!”.

…”Hi! You’re not shy are you?” “She’s too cute, Mom.”

I thanked him and introduced myself, all the while Emmy continued to stare at him.

“Hi!”

…he only smiled this time, then looked straight ahead. The kids were about to start reading…

“Hi!”

I “shhhh’d” quietly in Emmy’s ear, getting out a toy from my bag to try and deter her now unceasing gaze at this gentleman. A single shake of her toy and she tossed it aside, much preferring the attention of her new friend.

“Hiiiiii….” She said again, verbally begging to get just one more interaction.

He waved and whispered a polite “Hi” in response and I knew at this point, it was probably best that we change seats.

I wasn’t embarrassed, just trying to be conscientious…acknowledging the fact that beginning now, we have to teach Emmy the social graces of our world. And I feel like that is the line we will walk often….the line between believing that Emmy is capable of doing anything she wants and at the same time accepting that she has Williams Syndrome. It makes her different. Pleasantly different. But different. She’ll know it one day. Because she’s smart. And science shows us that her mind does and will in fact, work differently than ours. Her emotions and attachments to others are unique to those with WS. I think giving her boundaries in her interactions now will ultimately help her succeed in her life and relationships. It’s a curious journey we are on and there are only snippets of instruction for what to do. But honestly, how can you resist her smile and her light?

Next month she turns two. She’s getting older and she’s not the baby she once was and seemed to be a little longer than the other kids. I still feel unequipped and unprepared.  I still don’t understand why this is our path, but all I can do is take it one day, one situation at a time, keep breathing, keep seeing, and as Pete’s Nana has always reminded me, “keep my chin up”.  All it takes is one smile, one look from her and it all seems doable. So amazingly doable. Like maybe we even lucked out if luck was real.  But I don’t believe in luck-I believe all of this is on purpose.

I was thinking yesterday about how every great story has a conflict, has a struggle. Every great story has the moments that make our mouths drop and our eyes widen. Or maybe even break our hearts…I was thinking about how skipping the hard parts makes for a lackluster story. And I don’t want lackluster for you….I want for you to live the full story…that one that makes us cry and cheer, the one that makes us love deep and live free. The one that makes us so thankful that you are in it. I don’t want to shield you from grief just like I don’t want to shield you from joy, Em.

When the day comes that you realize that your mind and heart work a little differently than others’, it will be hard. You will struggle with it and it may cause you to ask, “Why me?”. But I hope you also learn to ask yourself in those moments, “What can I learn?”, “Who can I now help?”, and “What is the Truth?”. I know you will find good things that you wouldn’t have found if not for the heartache. I know you will find gifts from Him in the unexpected places. Things don’t always go the way we hope, but then we don’t always know best, Emmy girl.

What will you do, Emmy with your life? I cannot wait to see.  I hope you learn how to brush the dust off your knees when you fall, how to look outside the fences of circumstance, how to take the chances that scare you, and how to tell us your uniquely amazing story.

You make life better for us, Emmy.

All My Love,
Mama

I’ve sat down too many times to write and the words just haven’t felt easy or authentic. The flow was forced and I was trying too hard…maybe because writing in the midst of trials is easier than writing when things are going well. Because they are going well. But more than anything, I want to remember so I figured I’ll just write. This has been a good place for me, this place where I make at least a small attempt at documenting the complexities and sweetnesses of the everyday…

I’m not saying anything new when I acknowledge that a Mama’s day to day is a grind. I turn the wheel and make this train move and most of the hours are filled with the same repeated words to small ears, teaching and reteaching, cleaning the mess, recleaning the mess, and wondering if I ever imagined I would be this tired. But then. Then there are these few small moments that are really actually kind of big. For me anyway. For the last year I have given up my iPhone. I traded it in for a phone that does nothing. As in, for the first few weeks I had it, I would reach for it like a recovering addict every time I was bored or lonely or even happy or sad. I reached for it to make it through the grind. But it didn’t do anything. I even needed two hands to text and I usually don’t have two hands available. So that was that…and slowly my first thought wasn’t “I need to take a picture of my littles doing this or that beautiful thing…and also see what other people have to say about the this and that beautiful thing.” My first thought became, “Let me just look. Look the way I used to when Ava was a baby…before my virtual audience gave me company. When it was just me and her. Her and me.” Anyway, ironically it’s hard to not want to post a picture here, but one of those beautiful moments happened just the other night and I just wanted to grab it in my mind and tuck it away forever. Ava was sitting on a tree swing. The ropes long and swaying slow as she pushed the ground with the toe of her flip flops. She held her sketch book open on her lap and she thoughtfully drew the wildflowers around her. The summer evening breeze blew her hair over her cheek. I didn’t take her picture. I just snapped it in my mind and it’s there now to treasure. No lens in the way. Just the sweet memory of her doing her thing.

And then there’s Piper who, as I described to someone meeting her for the first time the other day, will say something inappropriate and something hilarious all in the first 30 seconds after hello.  And she did! She is full of might and perfect comedic timing that is beyond her 3 years. Most of the time I wish she needed me more, but she is the independent one, making her own path. And I catch myself staring at the way her baby cheeks still round out her face and the way her hair shines in the sun when she’s running outside. Sometimes she lets me hold her hand and I love how it feels in mine, small and soft and sometimes sticky, but still…3. Not a baby anymore, but not quite big. I capture her often because I know in a blink, she’ll be all grown up. My Pip.

My boy is still loving on his Emmy, making it his mission to help her along. He’s also testing the waters of “boyhood” with his friends as he is surrounded by sisters when he’s home. I wish I could say it more creatively, but watching him ride his bike, swing his baseball bat, play a make-shift soccer game with the other boys, build his legos…it all just makes me so happy. He’s getting bigger, but I think one of my greatest joys is when he sits on my lap and relaxes into me. It won’t happen much longer so I’m breathing it in now…capturing it, holding it in my mind and memory…not regretting that he’s growing but appreciating what is the “now” of Jude…so I don’t miss it and forget how he became what he is and how he is becoming what he will be.

Emmy girl is doing well. The year anniversary of her diagnoses came and went without even really noticing it. I didn’t know if there would be tears or not. There weren’t. I don’t feel like I have anything to be sad about anymore. What I once feared has become a reality I rather enjoy. Love actually. She’s pulling to a stand now, cruising, yelling at her siblings when she’s mad, scrunchy face giggling when she’s happy. She has the cutest scratchy voice (part of Williams Syndrome) and my favorite thing is to hear her saying new words…one at a time, always with passionate inflection, even saying “Ewwww” when she burps. She’s doing the typical toddler things just a little later than is typical. Almost every time I pick her up, she turns her head, rests it on my shoulder and keeps it there for one incredibly sweet moment. She loves well, my Emmy.

I have to finish with some photos. 🙂 Because you know they still hold their place. Bye for now and hoping to be here more often this fall…