Dear Emmy,

You’ve changed from the baby girl to the big girl right in front of me. You don’t ever stop-always moving, always finding, always making messes that make me crazy. I wonder what I might write about-what’s changed or where we’re going. The big picture eludes me. But I do see your little tan feet and how pretty you look with your hair back-with whispy pieces brushing your cheek and a curly ponytail behind.


Your biggest brown eyes and the cutest mole underneath one of them. It looks like a speck of the wonder tumbled out and landed right there.  Your pretty, full lips and how you purse them together when you’re thinking of what to say. Your cheeks that are thinning and your small chin that fits right in the cup of my hand. I hold it when I want to capture a moment; slow down the seconds that make you older.

I have a confession to make. I fear that I would have been a very different parent if you hadn’t been born with special needs. I think laziness would have been the daily temptation, sitting back watching life go by in a state of fatigue or surrender. Four babies can wear a Mama out and I think you’d be getting away with an awful lot of trouble. Raising yourself with a little help from your siblings while I dreamed about what was next for yours truly. Or maybe I would be focused on the kid-race of early achievement, signing you all up for this and that, running you all here and there. At the very least, I’d be checking off the boxes of stages and moving right along with little pause for gratitude.

But our story is different. It’s more exciting. Having you has kept me from falling asleep, Em. I have no choice but to stay in this and not give up. It’s not in the cards. I feel like we got to the final lap and learned there were miles more to go. So I’ve had to dig deeper, mining endurance and willingness from a well deep down and asking again for help from God, whose been walking this path with us all along. It can be an exhausting journey but that’s the best kind of journey I think. When I’ve worn myself tired for the good purpose of sacrificial love that manifests in tiny hallelujahs along the way.

You keep me awake, Em.

Awake to summer sun which has always looked good on you. Awake to the time that’s slower in summer…the time we have together that’s not hurried for once; to snuggle-wrestle on the couch with your brother, to have your sister walk you to your seat on the bus in her jammies, to beg your daddy for popcorn late and long after dinner when you should be in bed.


Awake to your curious mind, trying to stay one step ahead of you-but giving you just enough space to take some risks, so I don’t stifle the adventure of childhood. Awake to what you need and what the next season might bring. Awake to your questions, your songs and your stumbles, your affections, your tears and your touch.


Awake to a thousand good mornings of new days and new hopes for you. For all of us.

I love you, Emmy.

Now and Always,

Mom

Hustle

Sometimes I feel like the only thing I know how to do is hustle. I can still hear my high school softball coach yelling, dirt flying from my cleats, as I tried my darndest to get to first base at a respectable speed. I think one time he actually told me to “Unhook the wagon!” So. Good thing I could throw. But anyway, I was never known for my actual speed, but I had heart and my heart really wanted to be fast.

I hustled my way through college too, rarely missing class and studying hard, graduating magma cum laude. I kept up the actual running too-mostly to try and outrun my freshman 15, but I ran nonetheless. I still had a coach, albeit in my mind, screaming “Dig, dig, dig!”.

I’ve always admired those who hustled, the ones with worn out sneakers and grease on their elbows. I’ve also always had this sense that if I stopped hustling than I would drop the ball. And if I dropped the ball, I would lose.

Hustling has served me really well up until now. I was rewarded over and over for it with making teams (by the skin of my teeth), getting the grades, crossing off that to-do list like a boss. But now it doesn’t always work out for me so well. Now I realize I may have missed some important little things along the way when I had my nose to the ground, sniffing out the finish line. Now I’m not as satisfied when I arrive on time, mad at everyone else in my path who doesn’t have the same sense of urgency. Now I don’t feel like that hurrying always pays off with a great sense of accomplishment and pride. Now I may be missing the point and now I just feel pretty tired.

I keep preaching the slow down gospel because I need to keep hearing it. The truth is I am absolutely horrible at letting up the pace. Most of the time I don’t even know how to do anything but work. Something I’ve learned is that un-learning something is really hard. I thought the stuck-in-your-ways habits were only stubborn in the later years but I’m finding that they have an iron will even now as I round the bend to 38. I’m a little insensitive and unaware sometimes until life grabs my shoulders and looks me in the eye, asking me to be still again. To stop for even just a little while, to rest before I work again.

I laid in the sun today on our front porch, right smack in the middle of February, the weather an unusual 60 degrees. I listened to the kids next door do bottle flipping and I read a book about writing and how it’s not about perfection but more about clutter and mess and finding treasures right there in the middle of it all. Warmth in winter, words read through the noise, bringing the hustling to a slow and then full…stop.

My form of perfectionism might be working so much that it might just make life the way I want it to be; accomplished and well done. Perfect with smooth edges. The fact that the work is never all done is the thorn in my side and until the day I die, I’ll probably be trying to outrun it or maybe just make it a neck and neck race. But the contest won’t ever be close and if it is, it’ll be but a moment before I’ve fallen behind again. I know I don’t always share outright here about my faith, but you may know that I am a Christian and this drives the things I do and think. But so often I get in the way and start adjusting the speed of this thing, thinking faster is more and better and proves my worth. But God knows better than this and I think that rest is one of the gifts He gives. He created it in the Sabbath when He rested and looked at all He had made and said it was good

I’ve even written and re-written this post for a few weeks now, wondering what my point might be. I’m not sure there is one. Other than maybe dropping the ball doesn’t always equal losing and running fast doesn’t always equal winning.

And I think I just needed to get that down in writing. Thanks for reading my friends. Now go take a rest…

 

Dear Emmy,

My favorite thing that you say might be something I hear almost every day;

Mommy, I wanna hold you.”

What you mean by that is that you want me to pick you up. But I think it means more than that. Because when I hold you Emmy, you do hold me too; in more ways than one. When you hold me, you wrap your arms all the way around my neck so they criss cross in the back, locking me in, enclosing me tight. You tuck your head right in and I bury my face in your unruly dark hair, the rest of the world pausing for that moment with you. That’s a good moment right there, Em.

I have some other favorites too-like when you know I’m worried or upset you say,

Take a deep breath, Mommy…It’s ok, it’s ok…” while you hold my cheek and nod your head.

Empathy flows from your little soul and I didn’t teach it to you. It’s all wound up and knitted into your genes, into the very essence of who you are. It can seem so peculiar when I try to reason it all out, the little different things you say and do. But then I stop trying to explain it and, relieved, I shrug my shoulders and decide I’m so very grateful for each of them, explainable or not.

You like your nails painted purple now and you tell people you like their shirts or their boots, a little fashionista in the making. You ask to wear other women’s jewelry and I think you may know now that you pretty much get what you want with those requests. But before people think you’re all sugar and spice, you call one of us a “mean head” and we hide our laughter and tell you that’s not nice. Your scream can rival an emergency siren in volume, those little lungs an impressive force. I know I need to come looking for you fast when I call your name and you respond with “Nothing!” This absolutely means you are squeezing out an entire tube of toothpaste or decorating your clothes with permanent marker. Just like your siblings, you can bring me right to my wit’s end but you’ve got a knack for bringing me right back, your shenanigans changing to affection at the drop of a hat.

But that thing you say, that you want to hold me…that might just be my favorite thing of all right now. Even though you’re not saying what you mean, what you do say slows my rushing down to a full stop. So I can let you lock me in again. I don’t think I’ll ever correct you-who knows…maybe you know exactly what you’re saying.

I can’t imagine a different life, sweet girl.

Thanks for holding me, Emmy.

Love,

Mama

 

The Intern

I was a frantic intern to an impossible boss. The demands and requests were downright oppressive as I tried to navigate a way to success. The word he used most often was “should”. He repeated it ad nauseam, reminding me often of where I stood and how far I had yet to go. The “Should-er” was relentless but it motivated me onward, guilt-ridden and people pleasing, afraid of what might happen if I “didn’t”. My boss’s voice was also loud and obtrusive, I couldn’t hear reason over it or the voices of those most precious to me when they softly whispered, “say no…we need you more…”.

“You should do it or they won’t like you,” he would declare.

“I love it when people like me,” I would respond. And I’d answer yes one more time.

“You should volunteer! Who will do it if you don’t?”

“You’re right, there’s noone else, so please send me,” I dutifully replied.

“You should blow this task out of the water. Be amazing! You don’t want them to think you’re incompetent,” he barked.

“Oh, I’m very competent. I’ll prove it! I can be counted on!” I promised, hand held high.

“While you’re at it, you should be silent about what you need. Eventually you’ll forget about that anyway. But you’ll be fine. Carry on.”

“As you wish…”

The first time I said no to my boss felt like certain destruction. Things were bound to fall apart if I told him I couldn’t, I just knew it. But a forgotten small voice was calling me somewhere else, toward open space and choices and at the end of me, I declined his request for once and I flinched as the sure punishment came my way. I opened my squinted eyes as I moved toward the quiet, ignoring his calls and to my surprise, a growing distance made him smaller and smaller. And the further away from him I got, the less I wanted to work for him. He was a slave driving menace that could not be pleased and would never approve. I could never do enough for the “Should-er” and the crazy thing is…I created him. My boss was only in my mind, a rogue part of my conscience, still trying to prove something to the collective “they” and I was his dutiful intern for a very long time. Always the pleaser, not willing to let him, or anyone down for fear of being disappointing.

This fall I have taken some time to build what my good friend calls margin into my life. Margin being the buffer before the edge of things. The extra space that catches me when life spills over the lines. The breathing room that comes from saying no to the imaginary boss. I’ve cut out some of the unnecessary so I have more than just a few crumbs of patience for my family during the witching hours and bed time.  So I have some leeway to be still and dream again through changing Autumn and the Advent of something much better that is upon us now. I thought I’d be writing away about all of this and all that I’ve learned in this sacred hush and newfound haven.

But I think I’ve just been enjoying the silence.

10

I’m a size 10. In my mind I’ve been an 8. Single digit, the smaller side of “medium”, petite little 8. In my mind I am not a 10. I am an 8. But in actuality-I am in fact, most usually, a 10. Size 10 jeans, size 10 pants, dresses-size 10. I’ve always been a “medium” girl. Never skinny, always curvier than most of my friends despite years of sports and semi-regular running. I could maybe have squeezed into the “trim” category like a pair of those elusive size 8 jeans on my good days. But that is not the norm for me. So now you know this fact about me and tomorrow I may regret that. But this is part of my story and this draft has been sitting in the unpublished folder for quite some time so usually I know that means it’s time to write.

When I was in the 7th grade I had a music teacher who told me I was too heavy to get the part of a dancer in our school chorus concert-my skinny friends being chosen for the part instead. She said I did a good job on the dance. But. Ah-there’s always been a “but” for me. But seeing as most ballerinas are tall and thin, the part would not suit me as I was petite and precociously curvy in my 13 year old body. I mourned this day for years-the beginning of my “but” perception of myself. I may have been pretty, but. Those hips. Those thighs. The rounded out parts of me a nagging reminder of the gap between me and beauty. Over time, I’ve become more kind to myself, even thankful for these “imperfections”. I’m proud of what I can do and so very grateful for my healthy body.

But this winter, I’ve been over here getting a little bit, well, a little bit fat. My running came to a hard stop (minus a couple runs in the rain) and I happily settled into hibernation mode. And like a little squirrel I filled my cheeks full, not really caring about my midsection that I could hide under a poncho and buttery soft leggings.

But alas, Spring is approaching and that old familiar voice of my elderly music teacher is nagging me again. And I really would just like it to go away. Kindly go away, Mrs. G, may God rest your soul. All I wanted was to get out of study hall that day, not your Two cents ringing in my ears for all my days.

Before you feel sorry for me or think I’m fishing for some reassurance let me tell you that I’m not. I am writing about journeys because I don’t live in the beginnings, the rough patches, or the happy endings. Each part is moving and before I forget about it, I want to document it. It makes it real for me-this stating of the obvious-and I have to think that someone else can relate too and that makes it worth it. I’m not even sure I know what to do about this spot I’m in-I guess I need to do something. But I’ll start with where I’ve come from and where I’m at and maybe that will help me get to where I’m going.

*I just really hope it isn’t a place where iced coffee doesn’t live. Because then I might just stay in my poncho all summer long.*

Night. Night.:)

Dear Kindred Spirit,

I saw your son at the grocery store today. It’s not the first time- I’ve seen him there before, working at the checkout. He’s in the lane that makes it possible for him to be a cashier because he can sit while he works. He’s so friendly, always chatting it up with his customers as he swipes and types and bags. A few years he’s been there now, right? He really is something, your son- his smile and the way he brightens days.

I saw him today, standing this time.

I saw the shiny plastic braces that hugged his legs from ankle to knee and studied his labored gait as he greeted his co-workers and friends. I overheard him tell them he was stopping in one last time to “say goodbye”. I guess he’s moving on… and they all, every one of them, responded with strong handshakes, arms around his shoulders, and firm pats for a job well done-actions that spoke the words, “We’re going to miss you!” They were sad to see him go. I saw it in their eyes. He must have changed them, maybe a little. Or maybe a lot.

You should have seen him today, you would have been so proud.

I wonder what it was like for you? Raising a differently abled son 50 years ago, maybe more. Before all the social awareness, IEP’s and “kindness matters” campaigns. I wonder if you held him tight as a baby, praying prayers into his ear as you rocked him, asking Jesus to hold him too. I wonder how hard you must have worked to help him walk and what the doctors must have told you- if they were hopeful and kind or if they told you only of hardship and limitations.

I can see you taking him to his first day of school, swallowing hard as the tears dared to spill, letting go of his little hand, praying again there would be at least one that was kind to him, one that would circle back to make sure he was coming and asked him to play on the playground. Did you think of him often during those days and wonder how it was going? Did you breathe a sigh of relief when he came home smiling and did your heart twist when he came home rejected? Did you hold his cheeks in your hands, pull his chin up when it dropped and speak life into his soul? You must have because I still see that life in his eyes and in his warm smile now.

I can hear confidence in his words- he must have learned that somewhere. Did you tell him he could be whatever he wanted to be when he grew up? Did you tell him not to curse those legs that didn’t work the way he wanted them to? Did you tell him to remember who he was, to not give up or feel sorry for himself and to press on when he felt like he couldn’t? I think you did. And all of that loving endurance must have paid off when he graduated high school, when he got his first job, his first home, his own good life.

I think you were a pioneer, not by choice but by unique necessity. You braved a world scarcely understood long before I’ve had to. Thank you. Thank you for walking it first, taming the path a bit for the rest of us coming behind you. I have a little dark haired beauty who is differently abled too. You’d love her if you met her. We’re still in the holding days and the early years of sending her off… the days where I wonder what it might be like for her when she’s big and I practice the words that she will need to hear in the growing years. You’ve never met me or even known that my little dark haired wonder  exists but you have touched me through your son’s smile and the story that I’ve imagined behind it. You’ve given me a sneak peek of the later chapters, a sweet spoiler alert that moves me onward and tells me the good endings aren’t always the easy ones. They are the ones that have seen overcoming and love-stubborn perseverance.

You should have seen him today, you would have been so proud.

The Visitor Stays

{You can read about The Visitor’s Arrival here.}

Our visitor had no intentions of leaving, so life began with him now in it. We thought, moved and planned with him in mind as he now influenced every step we took. He, like all visitors, carried luggage that now needed unpacked and moved in as we allowed room.

His first days in our home were the most difficult. Even speaking his name felt like an intrusion, a confirmation of the interruption he was causing. We felt we had been just fine without him, now allowing him in felt a little like we were giving in or giving up and it certainly felt like we were a spectacle to behold. I could almost hear the whispers of others…

“How are they doing?”

“Do you think they’ll be ok?”

“Please pray for them-they have a visitor that isn’t leaving…”

Sleepless nights blurred to hazy days when I would look out the window longingly at the greener grass of normal in everyone else’s yards, wondering if we could at least attempt a life as close to theirs as possible. I’d turn back to stark new reality and stumble over our visitor’s bulky and awkward suitcase, still not used to its presence, spilling its contents onto the floor. This big bag of uncertainty was now a mess on my floor to be dealt with, to be confronted, to be folded and made sense of. New colors, strange patterns, foreign fabrics…everything was unfamiliar and it seemed there was no place to put it all away-so there it stayed, an intrusive reminder that there were things I couldn’t make neat and tidy.

But after a few weeks of stepping over the mess, paralyzed to put any of it away, I got down on my knees and began putting things into a semblance of order the best I could. A little bit here, a little more there but only what was necessary to survive, nothing more. It seemed he was asking so much of us, our visitor. His requests were unending which I felt was rather presumptuous if you really want to know. He asked of me give up the safe feeling of knowing things would be ok. He asked me to consider opening my hands to predictable, calculated days and to accept hours of waiting and questions. He declared that I did not have simple answers when someone asked how I was doing. It was more complicated now, with 100 shades of “fine” or “not fine”. He requested I sit and watch microscopic milestones unfold, an inch at a time for months on end.

Repeat.

Repeat.

Repeat.

I found him a little rude if I was honest. Showing up uninvited, expecting us to move over and give him room. He felt loud and obnoxious without saying a word and I wished he’d never come.

But there was redemption in his story too. He offered a new lens with which to view life now. We moved slower now, our quick answers quieted, and there was newfound thankfulness for the miracles we had grown bored of. Empathy multiplied and there was kinship with others who had visitors of their own. Patience for chaos and celebrations for things we never saw as praiseworthy were the way of things now. New dreams formed out of the dust of our old ones and expectations were now framed with an open mind instead of rigid corners.

And time has passed and he’s become quieter. His requests continue but they don’t feel so offensive and foreign.  He stays on, our visitor. He resides with us always, a permanent fixture I’ve become so accustomed to and at the same time will never fully understand. And there are many more bags to unload-I keep discovering them as he leaves them out for me. I imagine we will be unpacking forever, each season presenting a new wardrobe of his. And all at once I’ll realize again that things are not as they should be and just as they should be all at the same time.

Dear Emmy,

Summer is here again and the warm sun mornings on the porch and flip flop afternoons are making Mama remember again to be thankful for the little, little things. Sweet peaches by the bowlful remind me of my Grandpa’s house and the orchard next door. The way we ran around his giant yard like we owned it and made homemade black raspberry ice cream on his porch. We poured salt into the ancient churn and watched it spin, Grandma pouring the sweet puree into the cream and it barely swirled together before we helped ourselves. I always remember the levity of it-my memories perfection, filled with the laughing and the tired legs and skin tanned exhaustion of a good Summer’s day spent with cousins.

And even though life has taken it’s turns since our days at his house, I still find new reasons for joy…

Like your dark tan legs, growing taller and faster taking great big steps up the school bus stairs. The way you hold my chin and say with such sincerity, “I love you so much” and then ask me for “ice cream cones with sprinkles please”. Your left arm swing that’s part of your swagger now and the way you still sleep flat on your belly, your dark curls across your cheeks. The way people smile when you ask “What’s your name?” with your little head tilted to the side and how you say you’re 10 when they ask your age.

The sticky salt air at the ocean where your siblings played and the way you let me hold you on the beach chair because your feet didn’t like the sand, your head tucked in my neck as we watched the waves go in and out, you warm on my chest. That you’re still little for a little while longer…these are the whispers of God to me in our chaotic world.

Emmy, I wish you all the great joys of childhood. I hope for silliness on summer afternoons and the “good tired” sleep that comes after days by the shore. I pray for barefoot belly laughs on summer grass at night and ornery adventures that grow your independence. I want you to live the rose colored memories too, black raspberry ice cream and all. And someday when you’re big, you’ll hold those memories close even though life has changed…but hopefully they will teach you to keep the little things near to you, collecting them one by one, thanking God for them as He speaks quietly into your life the hope of heaven yet to come.

Love,

Mama

Because It’s Funny…

On the way to church yesterday, Piper noticed an (overweight) man riding precariously on a bike…

“Mommy, there is a fat man riding a bike.”

“Piper, you should not say the word ‘fat’ out loud. It almost always hurts someone’s feelings and that’s not ok.”

******{long, thoughtful pause}******

“Mommy?”

“Yes?”

“Can I say that his bike is very tiny?”

A Moment. And a Few That Followed.(2)

“Mrs. Manni?”

“Yes-Hi, this is Katy.”

“I am calling because I have the results of Emmy’s bloodwork back. Her test came back positive for Williams Syndrome…I know this is difficult news to hear, but maybe we could set up an appointment for you to come in and we can go over Emmy’s next steps.”

(Eyes close. breathe. swallow. lump. tears. tremble. speak.)

“Ok. I think we set a date already…most of us knew this was coming.”

I recently learned that people are drawn to conflict in a story. I’m not so sure it’s just the conflict but maybe the possibility of some sort of redemption.

Nights blurred to days after the phone call and I wasn’t sure what to do with myself or the four littles at my feet, pulling at my fingertips with needs unending.

So we’d go outside.

And I would watch them play, oblivious to the conflict inside of me, the mess of little pieces that fell out when life turned over, the pieces that I was trying to put back together.
Sidewalk chalk and wiffle ball, bug catching and tag and all I could do was watch, jealous at first that they could still laugh. Baffled at their easy distractions until finally-sweet pieces of redemption crept in when I realized that life was still going, still beating. There was still giggling and happiness in the way they plopped down on the concrete, butts covered in pink and purple dust, scratching out hopscotch and their names all swirly and sprawling. They hopped on an off their bikes like they had somewhere important to go, racing up and down our street because someone needed saving or the bad guy was on their tail. They pretended in the middle of harsh truth and they imagined a world that contained mermaids and fairy dust while Mommy tried to keep her head up and her eyes open. I learned to breathe them in and out and their play filled me up with keepsakes called pause and presence.

And tick tock the moments marched on, unaffected by me, by conflict, by heartache, even by joy. So I brought them into focus, the moments, and kept them under the magnifying glass of gratitude, capturing little snapshots in the middle of tailspins. Redemption was creeping in a little at a time, keeping me afloat, drawing me back to joy.