These Are The Shoes

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These are the shoes that I first picked out for my baby girl, Emmy. I was so excited to have another baby and couldn’t wait to put her sweet little toes into these cute shoes. I pictured her walking around the playground, climbing up the steps to the slide, with these precious flowered shoes on her feet. I bought these shoes and put them in her drawer, waiting to embrace the day she took her first steps.

Well, she never wore them. They are still brand new.

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THESE were her first shoes. I’m not joking. A far cry from cute, eh?

Our first Physical Therapist (who was wonderful) determined that Emmy has low muscle tone and needed a more supportive shoe. She asked me to find some shoes at a thrift store which she was going to cut up (gulp). I scoured a thrift shop, using her specific instructions, and presented her with the cutest pink shoes I could find that still met her criteria. I was hanging onto the notion that Emmy’s first shoes would be sweet and girly. That’s when our Physical Therapist grabbed a scissor and started hacking away. She cut off the fronts of the shoes and then sewed on black straps, which were intended to hold Emmy’s foot tightly in place. She then glued padding to the inside.

Emmy wore those shoes for about a month, and I grimaced every time I saw them. I longed for the first pair that I picked out that were still sitting in her drawer, brand new.

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These are the shoes that Emmy wore after the frightful pair. She needed more support on the side of her foot, so we graduated to these white shoes. They say “My Baptism” on the side. I think most children wear their baptism shoes only once, but Emmy wore hers for months, which made people chuckle.

I had a woman stop me in a store, point to Emmy’s shoes, and say, “Oh, I remember when we all had to wear those ugly first walkers!”

What she probably didn’t realize is that nobody wears ugly first walkers anymore. Most baby shoes are blinged out. She didn’t realize that I didn’t have a choice in the matter, and there were very cute shoes sitting at home in a drawer, brand new.

The next step was to move Emmy into orthotics, which are braces that go inside shoes to help stabilize the foot. When this idea was first brought up to me, I thought, “NO WAY.” I pictured unsightly braces up to her knee. In fact, one of our therapists has a brother who wore clunky metal orthotics when he was younger.

But it isn’t about me. It’s about what’s best for Emmy. So we got her fitted for orthotics, which are much prettier and smaller than I imagined. You can barely tell that she’s wearing them, and she’s very comfortable in them.

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These are the first shoes Emmy wore with her orthotics. She loved to pull open the velcro strap on the top.

And, in the end, she didn’t care what her shoes looked like. She just liked walking around; getting into everything. Through all of the shoe changes, she didn’t blink once. She just wanted to get up and go.

She has no idea that I still look at those first pair of shoes and feel a pang of regret, a pang that she didn’t get to experience her first years as typical children do. Or maybe it’s my own experience I’m thinking about–the regret that I didn’t get to put those cute shoes on my baby when I really, really, wanted to.

Sometimes things turn out differently than we planned. I’m a VERY (read: obsessively) good planner, so that’s been a challenge. But what hasn’t been a challenge is looking over at Emmy’s bright, smiling face and knowing that we’re doing what’s best for her. Right now, she doesn’t need cute shoes. She needs support.

We Have Each Other

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I’ve been at a loss for words this week. My friend has experienced a tragic loss that defies words and explanations.

There are many thoughts that have gone through my mind over the past few days. Why do bad things happen to good people? How can life be so fragile? Where are the miracles that I’ve dreamed about?

I’ve been thinking, thinking, thinking. And then something so strong came into my head, as if I didn’t even think it myself: “We have each other.”

Even if my questions do not have answers, we are standing strong together. Our hugs have been so tight. We’ve felt other people’s tears against our own cheeks. We’ve grasped hands and rubbed backs. We’ve leaned on one another.

We can’t predict the future, but there is comfort in knowing that we can rely on others to help us get through the tough times. These personal connections are essential.

This is what I know: It is my honor to support my friends. Yesterday, today, and tomorrow. We have each other.

Feeling the Fear

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I am living in a place of fear right now. I have a friend whose child is in the hospital recovering from heart surgery. My own child is scheduled for heart surgery in a month. My friend, Erin, posted the most heart-wrenching story on her blog, which has just rocked me to my core: http://edivaput.blogspot.com/2013/04/when-it-just-isnt-fair.html

And then of course there is the horrific event coming out of Boston and that sweet boy’s picture on Facebook holding up a “Peace” poster.

I am living in the middle of fear. I must admit that a large part of me feels comfortable in a place of fear. My first reaction to any uncertain circumstance is usually fear, so this emotion feels spot on.

But I am very much aware of the anxiety in my chest, the constant nerves; the guzzling of caffeine which only makes it worse. Recently, I’ve found a new way to address fear which is to eat. I take those Lindor truffles that are only 73 calories each…and I have 10…in an hour. I fantasize about the rosemary fries at Smashburger. I eat slice after slice after slice of cheddar cheese.

Finally, I confided in a wise friend who replied that I was feeding the fear to make it go away.

I hadn’t even realized it. Instead of feeling the fear, I was feeding the fear.

The problem with that (besides the tight pants) is that even though I’m stuffing, I’m still feeling everything under the surface. The emotions are still there, bubbling up. They haven’t gone away.

Now that I realize what I’m doing, I can look at myself objectively.

“Self, why are you doing that?” I ask.

“Self, you know exactly why you’re doing that,” I answer. “You don’t want to feel.”

But, self, it’s natural to feel. It’s completely human to feel afraid and sad and upset and angry. And then it’s beautifully human to feel support and connection and love and generosity. And then it’s entirely human to feel hope and bliss and joy. It’s normal to feel all of it.

I don’t think that living in a place of fear is a good place for me. But I recognize it and look at it objectively and reach out to others and hope that there will be great joy on the other side.

Salt Water

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Salt water is nature’s remedy. When faced with difficult circumstances, I make a hasty retreat to the beach.

I don’t mean “retreat to the beach” as in “put on a bathing suit and sunscreen and relax on the sand.”

My version of going to the beach over the past few years has been more like “put on two sweatshirts, sit on a bench in the cold wind, and gulp in the salty air.”

It helps.

In some ways, we’ve had a tough few years. Dan’s mom died in 2010 from cancer. Dan’s dad died in 2012 after many years battling Parkinson’s disease. We found out that one of our daughter’s has a genetic condition that is coupled with medical issues. And now she’s due to have heart surgery next month.

But, despite all of this, the last few years have also been wonderful. I’ve given birth to two precious children, and we learned about a fascinating genetic condition that has brought a lot of love and community into our lives. We have also leaned on each other, which has made our marriage stronger. Over the past few years, we’ve come to the beach many times to have the salt water heal our wounds, and I’m thankful that we’re in this together.

I told Dan that, when I met him in 2002, I never could’ve imagined what life had in store for us. I was sitting at my desk with an eye on the door, when the “new guy” walked in. His boss started introducing him around the office, and I couldn’t wait to get to know him. Maybe it was the facial hair.

I thought back to myself at that time, caught up in the excitement of meeting the love of my life. Really, I didn’t have a care in the world, and it went on like that for quite some time.

In certain ways, I’m surprised at what life has brought our way. And in other ways, I feel as though we’re right where we need to be. These were our lessons to learn.

This week hasn’t been easy. I’ve had an imaginary little bird on my shoulder whispering “heart surgery heart surgery heart surgery” in my ear–constantly. It reminds me of the same little bird that whispered “Williams syndrome Williams syndrome Williams syndrome” after Emmy was born. I hadn’t heard from that bird for a while, and I’m sorry he’s back. He’s giving me a migraine.

So it felt good to go to the ocean and give my problems over to the salt water.

And as I walked down the windy boardwalk with Dan by my side, my migraine started to dissipate. I was comforted by the fact that when Emmy goes in for surgery, I’ll have a strong hand to hold.

I May Throw Up

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We got a phone call with a date for Emmy’s heart surgery. It’s a month away.

I was surprised that I didn’t cry. I couldn’t cry. I even tried.

I just felt sick.

The phone call came yesterday and, for the past 24 hours, I’ve felt as though I’m going to vomit.

The threat of heart surgery has been dangling over our heads since Emmy was born. She has narrowing in her aorta. As it gets narrower, it gets more dangerous because the heart has to work harder to pump the blood through.

Now, as her numbers keep rising, it’s time.

I know other families who have been through this. I have met so many incredibly supportive people–both in the Williams syndrome community and in the Congenital Heart Defect community. I lean on them. I also lean on my other friends and family who haven’t been through this before but who feel everything I’m experiencing as though they were walking in my shoes.

I’ve realized this about myself: I’m someone who needs support.

I didn’t think that was the case for most of my life. I didn’t reach outwards. I turned inwards. And I heralded my independence as something that was precious. In the past, I didn’t want to show weakness or vulnerability. Why would I lean on others? What if they weren’t there for me when I really needed them? I didn’t want to take that risk, so I didn’t reach out.

But I have been schooled in the lesson of support. For me, there is no other way. I know I can’t do this alone.

And now, as I finally let the tears flow freely and move past that awful feeling of wanting to vomit, I am so incredibly grateful for the people I know.

From the Heart

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Charlotte got a new doctor kit and has been running around taking everyone’s blood pressure and temperature. She says things like “This will only hurt a bit” and then administers a fake shot. I always howl “OWWWW! You didn’t tell me that would hurt!” to make her laugh.

I heard her happily humming as she took Emmy’s blood pressure. She triumphantly declared, “You’re 100% healthy, Emmy! Good job!”

I felt a knot in my stomach. I wish I could capture the innocence of childhood, even though I’m well aware that is fleeting. Charlotte doesn’t know that her sister has Williams syndrome, nor does she know that she has a heart defect which may require surgery in the next few months. Emmy’s narrowing in her aorta has gotten worse and, at our last cardiologist appointment, we started talking about surgery–an inevitable situation that has been hanging over our heads for almost 2 years but has never been so close as it is now.

I have met children with Williams syndrome who have undergone heart surgery, and they are doing amazingly well. You would never, ever guess that these energetic, cheerful children have had open heart surgery.

I also belong to a support group for parents whose children were born with heart defects, so I see first-hand how wonderfully their kids turned out, even after multiple heart surgeries. These kids have 100 times more energy than I do! I have a friend from the group whose sweet son is undergoing his third open heart surgery right now. I’m thinking about them.

It’s something that I never imagined myself facing as a parent. I always thought about washing down scraped knees, pouring orange juice for a cold, and kissing little bumps on heads. The thought of the scary-sounding heart surgery, which seems like something that only happens on tv, never crossed my mind. Today it does.

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