Dear Emmy,

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You got a special pair of princess shoes that are going to help you stand up strong and start putting one foot in front of the other. We chose the butterfly print for you because Ava thought they suited you best. All this time, Mama has gotten the chance to let you be my baby girl (you’ll always be my baby girl), but now it’s time for me to put you down and let you learn to walk. Soon you may even do it without my hand holding yours and I couldn’t be more proud.  

I watch your face as you pull yourself up and I know how hard you are working just to see over each hurdle. You’ve tasted a little bit of freedom now and your smile beams as you look behind you to see if I see. I see you, Emmy girl.Image

Do you know that so many people cheer for you? They walked beside you and behind you a few weeks ago to show you that they think you’re wonderful. They showed up to help give you every chance you can get to walk strong and sure. And once again, we got to experience something new and good because of you.Image

You make this journey fun, Emmy.  Every time I look at you, I notice something new.  Some new beauty that makes me sing.  Goodnight Emmy girl. 

Love,

Mama

This Day.

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I never thought I’d know what it’s like to sit across from a genetics genius and have her tell you the very hard things that change life forever. August 2nd 2013 is a day I won’t and can’t soon forget. The Friday that I kept asking myself, “How did we get here?”

I remember it in bits and pieces, both generally and specific…we didn’t plan on going that day, they said it would take 3 months. But it didn’t and they called after just 5 days and said “Can you come this afternoon at 1:00?” So I scurried and shuffled and arranged for my other three loves to be taken care of and I called hubby and told him I would go and it’s ok that I’m alone because there “just isn’t any other way today…we didn’t have a chance to plan for this…”

And so we went, me and my babe who would turn 8 months the very next morning. My babe who I just knew in my very core was different and needed me to know why. We went. Just Emmy and me…because Mamas walk hard roads with their babies even when they don’t want to face the fear of fear.

So we checked in and they were friendly and marveled at her hair (everyone does) and her eyes (they twinkle) and her smile so big and endearing (it’s her trademark). They took us back and the hall was long and unfamiliar and they gave us a room. I still remember the room. They weighed her (“She’s so petite!”) and I smiled and agreed and then we sat in our room and we waited some more. Finally, a knock and a stoic introduction and lots and lots of questions to which I had answers and all the while a well of emotions that rolled and thundered and lurched inside…

“Why did you bring her?”
“She’s not moving the way my other kids did…and they said I might find answers here.”
(I brought her because I can’t sleep some nights. I brought her because I know it’s not ‘nothing’.)

“May I see pictures of your other children?”
“Sure!” (They are beautiful and she looks like them…except sometimes she doesn’t.)

“Mrs. Manni, have you ever noticed that Emerson doesn’t look like your other children?”
“Sometimes.” And a hot tear came from the depths and welled up but I told it to stay put.

And there was more and she was supposed to be writing but I saw that she wasn’t and I saw her eyes studied and stayed on my Emmy. My Emmy intrigued and her features confirmed. And good doctors look (really look) when they suspect. She suspected and she looked.

Then I said, “I’ve been reading about something called Williams Syndrome.”

An affirmative nod…”Yes, I think she has Williams Syndrome. I’ll be right back”.

And the door closed behind her and and I pulled my babe to my chest and held her tight. I held her and then kissed her forehead like I’d done so many times before but this time I felt the truth was approaching us quickly and I had to hold on tight. And hubby was texting with his heart in his throat wondering “How is it going?” A quick reply that was something of “they think she may have this but it’s ok because she’s wonderful and it’s always been this way, we just didn’t know”.

Then 5 people came in and said they had some work to do. They asked me more and held her tiny hand and showed me a line there that I didn’t have and my heart raced and again I shooed that tear away for fear the dam would break. They measured and examined, they noted and talked, they walked me through their observation but I limped behind them, too much to take in… I wanted to think that things were fine and all of this came from my worried imagination. I wanted to speak up and say in that moment, “But she’s so engaging!” But I stayed in reverent silence and just then the geneticist said, “See how she doesn’t let me out of her sight? How she focuses on me no matter where I go? That is telling me it’s Williams Syndrome because that’s what they do.” The one thing that had given me hope until now that all was fine, the fact that she was so attentive to the world, was the very thing that was convincing them of her disability.

They showed me pictures in a book and I saw her smile on the face of another child and they told me to “keep my head and hang in there because we had to wait the 7 days until the blood test confirmed”…confirmed what I already knew. I knew that day that her secret had been Williams Syndrome and nothing else. We had found an answer and I was relieved and completely terrified. I was drawn to her in a new way and simultaneously leveled as I began to feel the weight of life and the shift it was making. Because nothing would be the same now…

They recapped and gave instruction.
I told myself to breathe.

They spoke of follow up and phone calls.
I reminded myself to stand.

They said goodbye and shook my hand.
I packed up and made the hard choice to steady my trembling hand, pick her up, and start walking.

“We didn’t have a chance to plan for this.”

 

 

 

Gratitude

Gratitude, I believe, has saved me.

When Em was diagnosed, there were times I withdrew my open hands from accepting what He had allowed.  And then the weight of things would begin to feel very heavy.  So I would reluctantly unclench, reach out and slowly open them again with a neediness in my spirit that broke me and built me all the same.  It wasn’t an altogether bad place to be.  I began to be thankful for things I never knew I was thankful for.  Coming to the end of myself has a way of doing that.  So today, this Good Friday, I am reflecting on gratitude…

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See how Piper’s fingers rest on Emmy’s back and the gentle way she closes her eyes?  I’m grateful that the sun shown that day and my kids ran down the sidewalk. They ran.  Grateful.

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See that she has a sense of humor and took a selfie that made her giggle and me when I found it a day later?  I’m grateful that she laughs.  She laughs.  Grateful.

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See the way they lean in against Emmy?  The way they hold her so she doesn’t fall?  They love her well.  They love.  I’m grateful.  

That I can breathe them in. That there are 4 of them. That they color with sidewalk chalk, make up stories, play pranks, and they still hold my hand.  Grateful.  That Emmy is tiny and still tucks perfectly in my arms when I cradle her.  That her hair is thick and curly and looks perfect with a big bow.  That her smile beams and she holds my cheeks when we are nose to nose.  That it will take her some time to be able to walk because it makes me celebrate each step in the process.  Grateful.

That I am here, in this place where things may not come easy but there is hope that is big.  That my children and my mothering do not define me but they sure do bless me.

I’ve walked in ingratitude before and it began to crush me, the weight of it more than I could stand under.  Gratitude allows me to stand up.  It moves my beyond myself and the boundaries of my circumstances.

It frees me.

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Dear Emmy,

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My Girl.  Last week you crawled.  I could just burst thinking about it.  We’ve worked so hard, Em! We’ve worked hard for a long time, but somehow when you started moving forward, all of those weeks of trying became a memory and we celebrated because Hope shone through. It was the first time your little body caught up to your mighty spirit.

And I was reminded that I don’t have to give up my dreams for you.  Not a single one.  My hopes for you abound and they are wide and vast, full of joy and the anticipation of all the celebrations we’ll have.  I’ve walked beside you but really it’s you, Em.  It’s you who climbs the mountain and it’s you who will do and say the things that make our eyes wide and our hearts swell.  So I say we keep going, we keep trying, we keep showing up and we keep hoping.

One thing I love is that you’ve given us a purpose that we didn’t have before.  You’ve given your siblings someone to cheer for.  Do you know they can’t walk in a room and not wonder where you are and what you are doing?  They want to know you are safe and happy and trying.  …”Where’s Emmy?” “Look at Emmy!” “Good Job, Emmy!”… I could listen all day because these are the things I now cherish.

These are the things I now cherish…

Love,

Mama

 

Happiness

Dear Me,
Remember that happiness and heartache can exist at the same time. Simultaneous bliss and grief can dance together, each taking a turn and claiming their rightful places in my heart. I can look too far ahead and the tear that always awaits its turn spills over my cheek. And then I catch one glimpse of her and the joy steals the sorrow.

“Happiness feels a lot like sorrow
Let it be, you can’t make it come or go”

How do they do this to me? The babes that have to me been given…how do they make my heart nearly burst with these impossible depths and peaks? I can hold them, but never tight enough. I can teach them, but they still have a will their own. I can try to tell them all the things they are to me, but what happens after they hear is their own story. And I’m reminded again, they are not mine forever…not even now fully. For just a short time they are close enough that my arms can cradle them.

“Happiness is a firecracker sitting on my headboard
Happiness was never mine to hold
Careful child, light the fuse and get away
Cause happiness throws a shower of sparks”

So how do I do this? How do I keep walking? I suppose it’s ok to let the happiness and the heartache move side by side in my soul. I suppose it’s ok to embrace this ironic duo. Because I get to be their Mama. And someday I wish for them to know the belly laughs of happiness and also the pangs of grief that will grow their hearts big. Dear Me.

“Happiness damn near destroys you
Breaks your faith to pieces on the floor
So you tell yourself, that’s enough for now
Happiness has a violent roar”

Dear Ava,

Do you know that when you were a small baby and you would cry, my heart would jump? It’s hard to describe what it’s like to be a new Mommy…but there was and is something about you that makes me want to run to your side at the first tear or even the slightest giggle that leaves you.  I love all of your emotions and all that makes you my Ava.  Sometimes I wonder if you ever feel lost in the shuffle of our life.  I want you to know you never are.  I always know you are there, my tender companion.  You never walk far from me, it’s just the way you are.  An adventure usually makes you uncertain and scared…because you have a special ability to see ten miles down the road.  And like your Daddy, you think of all the possible outcomes before we take the first step.  But this makes you brave, my strong girl.  Braver than most, because you often choose to go anyway, even when you’re scared.

When we first told you that Emmy had Williams Syndrome, your first question was, “I know what Emmy is like now…but what I wonder is, what will she be like when she’s older?”  You get me with those questions because you often ask the very same question I wish I could answer for myself… “We have to wait and see, sweetie…” That’s what I said to you.  I hope you haven’t worried.  Because she’s doing really well, Ava.  And that is in part because of you.  You are an invaluable gift to her-her big sister.  There may be times that you don’t want to be that.  It’s ok. It may not be easy.  But it can be good, if you look for it to be good.  And just like I’ve promised Emmy that we will walk this road with her, we will also walk it with you…”so that you’re never alone.”  So I hope that this adventure with Emmy will be like the ones you’ve dared to take on before…there may be times when you don’t know how to respond, times when you feel angry, times when you feel like you’re not quite sure what you’re supposed to do with the gift of your little sister.  But know that there will be Grace in the midst from us and from the One who loved you before we even knew you.

Ava, you occupy a place in my heart that is all your own.  I love your soft face, the way your wrinkle your brow in concern, your vast, beautiful imagination, the intensity of your feelings, and the precision with which you create art.  I marvel at the things you think and adore the things you say.  Put one foot in front of the other when things get difficult…even if it’s just prayer uttered or a choice to be grateful.  I love you my Ava.

Always,

Mama

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Dear Emmy,

Hey big girl.  I wanted to tell you that the other day I saw some college students pushing one of their friends in a wheel chair.  I watched as they wheeled him past me and I tried not to stare, but it made me proud.  And then this week I saw a woman in Target who had a disability.  She was making her way through her grocery list and had a friend there to help.  It was hard for her, but she was doing it.  One item at a time, she was getting what she needed. Seeing them made me think about their journey…the things they’ve had to try hard at and the things they’ve overcome.  I thought about their Mamas and how they must have held them close like I hold you.  Emmy, you know how Mama told you that having you makes me stop and notice the world?  There are things that, in my hurrying, I never noticed before.  But now…now I treasure new things. New people.  See Em? You’re already changing me.  

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I know that people notice you.  They notice how you draw them in with your sparkly eyes.  They notice how you say “Hi” (already!) and how you reach out your tiny hand for theirs.  They notice how you make them forget that there are hard things that we will have to conquer.  
 
But you’re doing it, Em! You are moving and getting stronger, you are babbling and even saying some words.  You are standing with our help, trying new food, being silly on purpose, and pushing your brother away when you’re mad.  You are trying new things and cheering yourself on.  There is a Strength you are discovering and my cup overflows.  How could I be so blessed?  
 
Keep going, Emmy.  You’re doing so good.  
 
All My Love,
Mama
 
*photo credit: Lindsay McIntire

The Hard Questions

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.

Psalm 139:13-15

It’s not a secret that I am a follower of Jesus.  He has changed me forever and I am ruined for anything else but Him.  I heard the above verses over and over after we learned Emmy’s diagnosis.  They were recalled many times in my memory and written by our friends to reassure us.  But there was a struggle that I couldn’t get past…a seeming conflict actually.  Why was Emmy made this way?  Why do my other children have every piece of the DNA they need and Emmy is missing 26 genes?  26 genes that will make such a profound impact on her life and ours?  I had to let the question sit.  I gave it space in my thoughts.  I let it burn in my mind for some time.  It hurt. My heart was broken.  But I had to allow it to be there so I could stare at it for a while.  I couldn’t dismiss it and yet I couldn’t come to terms with an answer.  And I wasn’t content simply accepting an answer I had always received. If the God who loves us knit Emmy together in my womb, did He leave part of her 7th chromosome out on purpose? Or did He simply allow it to happen…

I think the answer may be “both”. I don’t believe anything happens outside of His providence so I still had to believe He created her exactly as she was.  And yet I also know that He does not intend for anyone to suffer.  He didn’t “mess up” so in that sense I had to believe that He allowed it, even though He knew she would struggle.  I also knew that I would never completely get my head around it.  So then my focus had to shift…

Maybe I’m not supposed to know.  Maybe there are some things that are meant to be secrets.  Maybe it mattered more how I responded to a life that was different than I’d imagined…

Could I be grateful in the midst of heartache?  Could I acknowledge my sadness but then choose to embrace the hard things?  Could I relinquish my fear of something happening to my children…because something finally did happen?  Could I work hard to get Emmy what she needed when I felt like running and hiding?  Could I ask for strength to keep going as an already exhausted Mama of four?  And give myself grace when I inevitably fail in every one of these areas?

I want to say my answer is yes.  Not every time…sometimes I feel like it’s impossible.  Sometimes I give up and get lazy or angry or selfish.  But I can try to keep coming back to the “yes”.  Because I love Emmy.  Because I love my other children and they need the best chance they can get at a life and a faith that fills them.  I know as their mom I can either make that easier or harder for them depending on my response to these hard questions.  I don’t fully understand the “why?”.  But I’m kind of happy about that. I want the “why?” to be secondary to the state of my heart.  He is good and I can trust that Emmy is indeed fearfully and wonderfully made.

Dear Emmy,

Baby girl, next week you will be one. It’s been quite the year, Love. Your first birthday represents a lot for us. When I think about your year, I see snapshots in my mind that play out like a new song…a song that grips my heart.  The fall brought back memories of your heart beating under mine.  I wondered what you would look like, what it would feel like to hold a tiny baby again, to breathe you in. There were hopes and dreams that I held for you, all the while promising myself that I would cherish you whoever you were.

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Then they handed you to me and your dark hair and eyes captivated me. I wrote to you that first night…my first “Dear Emmy”.  I told you your birth story and made sure you knew you were loved even before your first cry.

Emmy, your first months were hard. We didn’t know it but you were trying to tell us something.  Most of our days were spent trying to soothe you, comfort you.  It’s a bit hard to remember actually…the days faded into the nights and the nights into the days.  But there were these moments also…

       

And then those hard days became fewer and further apart.  We saw your smile more  often and you rolled over and sat up.  You loved watching your brother and sisters and they loved watching you.  I loved watching all of your “firsts” and I studied all the things that made you, you.  And the dreams Mama had for you began to take shape.

Emmy, there have been surprises this year.  Surprises that made my heart skip a beat, surprises that me think, weep, smile, worry, love, search, hope, and celebrate.  As we prepare to light the candles on your very first birthday cake, we celebrate all the things that a year of life brings.  But most of all, we celebrate you Emerson.

All My Love,

Mama

Open Hands

When Emmy was first diagnosed, I found myself wondering how close to normal we could still be.  I even wondered if Emmy could be all but “normal” and maybe people wouldn’t even know she had Williams Syndrome.  I hate admitting that but I guess it was possibly a grasp at holding on to our old life.  I found other people wanting the same thing though…and this truly doesn’t make me upset with them.  I think it is just a picture of our natural tendency to fit in, to not want our loved ones to struggle with being different.  When people would ask about her, they wanted to know how severe her diagnosis was, and ultimately what would she be like when she’s older?  Everyone breathes a sigh of relief when the possibility remains that Emmy could be “highly functioning”.  But what if she’s not? I had to ask myself how I felt about that and the answer surprisingly has come around to, “yes”. Not all at once, but yes, I am ok with the fact that Emmy might not be able to do all that I hope she can.  

Pete and I recently went to a conference for parents and caregivers of kids with Williams Syndrome.  The children and young adults with WS were there too as there was a weekend of activities planned for them.  Walking through the front door of that hotel  was a very emotional experience.  I’ve never met anyone else with Williams Syndrome.  As soon as we walked in, a little girl with WS who was probably about 6 or 7 years old, greeted us with a cheerful “Hello!!”.  I had to catch my breath.  It was like seeing Emmy in a few years.  Individuals with Williams Syndrome have very similar facial features, so they are easy to identify, especially now after seeing it in Emmy everyday.  As we walked through the lobby and down the hall, we saw more children, teens, and adults with WS and it was so overwhelming.  It was sweet. But it was overwhelming.  Then we went on to the many breakout sessions to learn about the latest research in their health issues, managing behavior, advocating for them, and planning financially for their future.  It was a glimpse into our future…a real glimpse, not just a picture on a website or words on a page about what life might be like. That day we had to face the many possible realities of what lies ahead for Emmy…not for the first time or course, but it was the most poignant of those times.  

 

All that to say, here is what having Emmy in our lives is forcing me to do: keep my hands open.  She is not mine to control.  That is up to Someone else.  I have to do my absolute best to make sure she is getting the most effective therapy, the best health care, and the most positive environment at home.  But ultimately, I embrace who she is no matter what.  She is Emmy.  And I hold her future loosely, learning to be content in any circumstance.  I’m learning not to “white knuckle” my way through life.  I can delight in the unexpected, the ordinary, the average, the unknown.  It’s really hard.  But it can be good too, an adventure of sorts and we don’t know the ending.  Come to think of it, none of us know the endings…What I do know is I get to be Emmy’s mommy and she blesses us every day.  

 

Thank you my readers for following what I call my “streams of consciousness” that do not always flow perfectly. 🙂  I hope they make some sort of sense.