Being an open book has served me well in my life. I like to speak frankly about myself, to not have any illusions about what I am and what I am not. I have no problems being on Twitter, FB, this blog and telling the world anything about myself. Except that I don’t. Not really. Speaking about personal things is not my forte, instead I would rather focus on the superficial.
When bad things happen, I don’t really talk about them. I never have. I run, I hide, I ignore. I like to talk about the fun things in life, the happy things. I make fun of my kids, because they are funny and easy targets. I don’t talk about how my daughter Emma has given me worry lines on my forehead since in the womb. How lucky I feel to have her here with us, healthy, happy and often bratty.
This has been the hardest thing I’ve ever had to write. Yet I felt compelled to write it. I couldn’t stop. Only a handful of people know this story, people who were there at the time. I don’t talk about it now, or much back then either. It’s become somehow important for me to share this, to be open with you all if I ever expect you to be open with me.
When I was 3 months pregnant, it was hard to get into an OB/GYN here in Calgary. It was also hard to get a family doctor, so I was just kind of used to seeing whatever doctor worked in the closest walk-in clinic. Before having kids, I was actually a pretty healthy person so it was rare that I ever needed to see a doctor.
So when we found out we were pregnant, I went to a doctor immediately. The first one I found, who actually knew very little about prenatal care. After my 3 month ultrasound, we were called in to be told that our baby suffered from something called Single Umbilical Artery or SUA. Our doctor had never heard of it (!!!) so she had printed off some info for us. It was stupid, scary, BAD information that told us things like our baby had a high chance of mortality, birth defects, etc. I had never been so scared in my life and I cried and cried and cried that day.
Thankfully, because of the SUA, we got prioritized to see an actual OB/GYN and he knew his stuff. He assured us that SUA is in fact pretty common. It did not mean our baby was going to die, only that because there was one artery instead of two in the umbilical cord that it was just a little harder for the baby to get its nutrients. We just had to go to monthly ultrasounds to monitor the growth. Other than that, no biggie.
So Emma’s birth came and went and there were absolutely no complications. She certainly had no problem getting nutrients as she weighed in at 8lbs 6oz and was one week early.
The next two years went by in normalcy. She had colic, she got teeth, she crawled, walked, ran. But one night, she made our hearts stop.
We were watching a movie in bed, she had fallen asleep between us. I felt her tickling my arm with her little chubby two-year old fingers. I looked over at her and she was sleeping with her eyes open again. It was such an unnerving thing, but one we were used to. Except this time she wasn’t sleeping.
As she continued to tickle my arm, I got a terrible, sinking feeling. I turned to her again, saying her name.
Her eyes were still open, her fingers were moving rhythmically in the air, grasping at something that wasn’t there.
We tried shaking her, we tried yelling her name. Nothing worked. I frantically screamed at Dave to call 911. I had absolutely no idea what was going on, but I had never, ever in my life been so petrified.
The ambulance came, the EMTs bustled into the house, checked her vitals and gave her oxygen. At some point, she had closed her eyes, and now with the paramedics in the room, she was coming to a bit. They packed her up into the ambulance, and I rode with her while Dave followed in our car.
All they could tell us at the hospital was that she had a seizure. Febrile seizures are somewhat common with small children, however – they are brought on by fever, and Emma did not have a fever. She was in perfect health before that moment. She woke up fully at the hospital and seemed ok, if not groggy.
In the months that followed, we spent a good amount of time at the Children’s Hospital. She saw neurologists, she had a CT scan, an EEG. There were no brain abnormalities to be found, thank God. We were instructed to keep an eye on her, to do small tests with her. She often stared off into space, and no snapping of fingers or saying her name could shake her out until she was ready. I had always thought this was normal, I really did. Who doesn’t stare off into space? Well, most kids don’t, actually. When she did this, we were to scratch her palm with our fingernails. Hard. It seemed so mean, but the doctors had to know if that would snap her out of these episodes. It didn’t.
So back to the neurology department we went. The staring off into space are called absence seizures, or more commonly known as Petit Mal seizures. Her doctor gave us all sorts of information, her big seizure was what is called a complex partial seizure. They didn’t really have much more information than that. We were given the choice to put her on medication, but the side effects sounded so awful, and she had only had the one seizure and then the absence seizures that weren’t harmful to her day to day life. We decided to go against meds, and went on with our lives.
After two years, Emma was seizure free. We were patting ourselves on the back for not using medication. We felt home-free, that it was an isolated incident.
In May 2008, it was the morning of our very good friends’ wedding. Dave was a groomsman and was already at the church. I was in charge of getting myself and the girls there in time, which was no small feat. I was getting into the shower when I heard the strangest sound of my life. It almost sounded like a cat moaning, a high, guttural keening. I walked around, trying to determine the cause. I found Emma on the bed, her eyes open and staring, her lips smacking together like she was chewing.
“Ok, I know this drill, I am prepared for this.” I told myself.
Turn her on her side (apparently that tongue thing is true) and she should come out of it on her own. Her doctors told us there’s no need to dial 911. Except as I watched her, her lips started turning the strangest shade of purple blue. Her face looked grey to me. I watched her chest, there was no rising, no falling. She had stopped breathing.
Again frantic, I called 911. The 911 operator talked to me through everything, the ambulance was on its way. When the woman on the phone informed me that the EMTs were there, I hastily put on clothes and ran to open the door. They ran upstairs, and again with the oxygen, again with checking her vitals. Charlotte was 18 months old and crying in her crib. I was a mess, alone – scared all over again. The paramedics were my heroes. They installed Emma’s car seat in the ambulance. They talked to me patiently, with gentle care. They helped me call my friend Tara who drove over immediately to take Charlotte to my mom’s and to bring my car to the hospital for me so I could ride in the ambulance.
By the time we arrived at the hospital, she was acting normally. She was desperate not to miss the wedding, she was so proud of the fluffy pink dress she was to wear. So we went to the wedding. There’s nothing like walking late into a Catholic ceremony. I bawled at the vows, so happy for my friends, so exhausted by my morning, so relieved that the little girl next to me was happy, smiling, breathing.
Again we met with neurologists. Epilepsy, they said. Two major seizures like she’s had – they define as epilepsy. Now that she’s had two, expect more, they said. Another EEG. Still no abnormalities. I felt angry, out of control. Are we just supposed to sit around and wait? Hope that she doesn’t have a seizure while swimming, riding her bike, doing normal kid things? Yes, they told us. Why is this happening? WHAT is wrong with her? There was nothing they could tell us. The brain is a mystery, they said.
Emma is going to be 8 soon. She had a seizure at two, at five. Every three years. This is the third year, yet we’ve been seizure-free. Do I dare hope? Is it over? Lots of people seem to grow out of epilepsy. I have no answers, no solutions. Emma has no idea about her seizures really. We don’t talk about them, we try to forget. Her sister Charlotte has been perfectly healthy from day one.
We are lucky, so very lucky. Emma is whip smart, she’s funny, she’s sarcastic and she’s wise. The seizures have really had no negative effect that we can see, except on our hearts.
I don’t talk about personal things because it’s hard. I don’t want to admit that there’s something wrong with my girl. Instead I focus on the everyday amazing, because I can’t see how anything could be more important than that. All we can do is just live these glorious lives.