One Week from Today

OneWeekfromToday

In exactly one week, Emmy will have heart surgery. I’m still in denial. I keep waiting for the phone call where a doctor says, “Oh my goodness, I am so sorry for all the confusion! Emmy’s numbers were showing up backwards! Whoopsie.”

Or, when we go in for her pre-op on Monday, I’m expecting a nurse to say, “I have good news! The narrowing in Emmy’s aorta has completely disappeared. This kid is healthy as horse. Take her home, and we’ll see you…never!”

It probably won’t feel real until Emmy gets wheeled into the operating room and I’m left behind to obsessively stare at the clock.

There’s a chance that she might need a blood transfusion during or after surgery and, because we have the same blood type, I was able to give a directed donation earlier this week. Dan came with me and donated to the general population because he and Emmy aren’t a match.

The woman who worked at the blood bank was so unbelievably kind as she took down my information. I hadn’t told her who I was donating to because I didn’t want to cry, so I just acted nonchalant.

As she transferred my information onto the form for Emmy’s surgery, she saw her birthdate–July 2, 2011.

The woman looked back at me and, with tenderness in her voice said, “This is for a small child.”

I steeled my jaw, intent on not breaking down, and said, “It’s for my daughter.”

She was so kind and offered comforting words. As I was giving blood, she asked lots of questions about Emmy. It made me feel good to have support, even from someone I’d never met before.

After Dan and I gave blood, we sat down at the small snack table and made conversation. We dutifully drank our juice and ate salty pretzels.

All of a sudden, Dan’s face turned grey. His breathing got shallow, and his eyes weren’t focusing.

“Are you ok?” I asked, stunned.

“I’m…having…trouble…breathing,” he managed to get out.

I jumped up, still woozy from having just given blood, and hobbled over to the kind woman. I choked out, “My husband…”

She called out to her coworkers, and a swarm of people descended on him, putting ice packs on his neck and keeping his head down.

“This can’t be happening,” I thought, as I stood back from the crowd. My mind flashed to Emmy’s surgery. “This can’t be happening.”

The kind woman who took my blood looked over at my panicked face and said, “He’s going to be just fine.”

I didn’t believe her.

They put Dan on a stretcher with his feet in the air as I nervously looked on. It took him a solid fifteen minutes to regain his color. Finally, he climbed off the stretcher and came to sit back down with me.

“That was really scary,” I said.

“I don’t know what happened,” he replied.

Dan is a strong guy, which is why he is my rock. To see my rock go down left me feeling completely helpless.

We’ve had a stressful week trying to get our ducks in a row before surgery, and I think the weight of it all has taken its toll. As nervous as I am for surgery, I just want to get it over with so we can finally exhale.

Meant to Be

MeanttoBe

It’s Williams Syndrome Awareness Month, so yesterday we met up with a bunch of other families for a beautiful walk to raise money and awareness.

We were at the same walk last year, which made me realize how much Emmy has grown. Last year, she was a baby, so we pushed her along in a stroller while she snoozed. I remember looking around at the other children who had Williams syndrome and just taking it all in–trying to figure out what my little girl would be like. I had read all the literature, but I still didn’t know what to expect. I still didn’t fully understand what the diagnosis meant for Emmy and for our family.

My experience has been that I can read all I want but, until I’ve lived it, I don’t truly comprehend it.

This year, Emmy wasn’t snoozing. She was dancing and laughing and eating burgers and tackling her sister and giving hugs and trying to make friends. She’s just so much fun to be around.

By all accounts, Williams syndrome is a completely random genetic occurrence. It could happen to anyone. I think the word “genetic” can be misleading because it sounds like we had Williams syndrome in the family prior to having Emmy. On the contrary, I’d never even heard of Williams syndrome! It was a total shock to everyone.

But spending time with Emmy over the past 1.5 years has made me wonder…

Was this really random?

I can’t help but think that this was meant to be…

She has taught me so much about myself and others. I’ve learned that I’m much stronger and more capable than I ever thought. I’ve learned that other people, whose brains are wired differently than mine, see the world in a special way. And, best of all, I’ve learned much more about what these words mean: love, acceptance, and authenticity.

And one more thing…

Before Dan and I had kids, we talked about what we wanted for their future. Because we’ve both been painfully shy in the past and had to work hard to push through that, we had only 1 wish: That our kids would have social personalities.

When we found out that Emmy had Williams syndrome, we immediately looked it up online. And here’s what we saw:

People with Williams syndrome have “highly social personalities.”

Gives me chills every time I think about it.

Yes, it was meant to be.

We Have Each Other

WeHaveEachOther

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.