It’s very bizarre to fill out medical paperwork on behalf of Emmy. Since we moved a couple months ago, we’ve entered a new school system, and we’ve had to find new doctors and dentists. We’ve also signed up for extracurricular activities, like gymnastics. This all comes with a lot of paperwork…and a lot of questions.
First, the questions ask for me to go through her health history. Gosh, this is still tough for me. I have trouble rehashing her heart surgery in 2013 followed by 2 cardiac arrests and a week on life support. She also has a lasting problem from that event, which makes me sad to think about. And then, of course, there’s the fact that she has a genetic condition. And, while I’ve completely accepted and embraced the fact that she has Williams syndrome, sometimes just thinking about that first year can bring back memories of complete uncertainty, confusion, stress, and exhaustion. Trying to grasp what Williams syndrome meant for our child along with setting up doctors’ appointments alongside Early Intervention services was just EXHAUSTING.
Next, after filling out her health history, I’ll no doubt see the following question which is phrased in many ways but most commonly: “Is your child healthy?”
I don’t even know how to answer this question. I mean, yes, Emmy has both Williams syndrome and a lasting issue from her cardiac arrests. But she certainly SEEMS healthy. She smiles a lot, runs around all day, expresses her MANY opinions loudly, and pushes herself in everything she does.
I don’t even know how to define “healthy” when it comes to Emmy. On a day to day basis, she seems healthy to me, even after everything we’ve been through.
Then we’ll have moments that will make me positively freak out.
A few days ago, Emmy ate some mango (her favorite food). Then a couple hours later, she said, “Mommy, I need some help.” I looked over, and she was practically green. She then threw up twice.
And I got nervous. I’ll tell you why… When we were in the hospital after her heart surgery, one of the nurses told me that when something is wrong with the heart, it often presents itself in the stomach first. So vomiting could be a sign of a heart problem.
I tried to put that thought out of my mind and deal with Emmy’s situation as if it were just a stomach bug. I did all the usual things that I do with stomach bugs–cleaned her up, gave her some water; tucked her in bed for a bit. But she wouldn’t settle. I brought her downstairs and sat with her on my lap, as she clung to me. She was acting differently. She could barely sit up. She kept saying, “Mommy, I’m scared.”
All this after throwing up only twice??
She seemed to be getting worse quickly. She was practically limp in my arms, and then her eyes rolled back for a second.
And that was it. My mind took off racing. What if it is her heart? That was all I needed. Without another thought, I grabbed my purse and put her in the car. She didn’t even have shoes on! I ran back in to get her shoes and then hopped behind the driver’s seat. I turned around to look at her again. Am I overreacting??
“Emmy, are you ok? Should I take you to the hospital, or do you want to go back inside?”
She said weakly, “I want to go to hospital.”
Done. I frantically drove to the hospital, peeking back to check on her along the way. She looked like she was going to pass out. Her eyes were closing, and her head was hanging down. I tried talking to her, but she would only answer in a slight whisper.
“YOU OK, EMMY?? ARE YOU EXCITED ABOUT YOUR BIRTHDAY COMING UP???” I was trying to get her interested in something–anything!
When we got to the ER, I breathed a huge sigh of relief. At last, we were safe. Someone was going to help us.
I practically ran her inside, and rattled off her health history. Emmy seemed to perk up when she noticed the tvs. And then she perked up even more when they brought her some Batman stickers. And then she REALLY perked up when they brought her an ice pop.
And all of a sudden, the child who completely scared the heck out of me an hour prior was sitting up in the hospital bed, happily watching Monsters Inc., eating her ice pop, and chatting up the hospital staff. She looked great. And then the attention started to turn to mom…
“So, mom, did you call the pediatrician?”
“You didn’t call the pediatrician?”
Noooooooooooo. Honestly, it didn’t even cross my mind to call the pediatrician. After what we’ve been through medically with Emmy, I didn’t want to waste a precious second. In the past, I’ve seen her situation change in, literally, a heartbeat. She’s gone from “ok” to “clinging to life” in the space of a few seconds. The doctors will remind me that it was different back then. She was post-surgery. That was 2 whole years ago. But after living through that…after witnessing what happened to her…I can’t just forget. When I see her start to fade on me, my mind goes back there in a split second, and I freak out.
I think the staff in the ER thought I was a little bonkers. My child threw up twice, and I brought her to the ER. That’s all it takes, apparently, for Mom to freak out. I was told that she’s a healthy child, and I should treat her just like any other. And if she vomits, I shouldn’t worry about her heart.
So it seems the answer is, yes, she’s healthy.
But, seriously, telling me not to worry is like telling someone else to stop breathing. Worrying is what I DO. And I’m quite good at it! I’ve actually perfected it, thank you very much. 🙂
But here’s the deal… I wouldn’t be able to live with myself if there were something seriously wrong with Emmy and I brushed it off as nothing. When I feel like she’s giving me signs, it’s impossible to ignore them. I’ve witnessed things changing in an instant. I know the circumstances were different, and that was all 2 years ago. I know she was post-surgery. But after living through that, I can’t forget it.
So, yes, we may be back to the ER one day, and Emmy may get a repeat of Monsters Inc. and an ice pop. But next time, I’ll call our pediatrician on the way over…