Susie Steiner

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Our Sweet Birdie

As a new summer is starting I am compelled to share how our last summer ended. I share it as part of a healing process for myself and when we share we provide opportunities to relate and connect. 

Birdie is the youngest in our family and she has blessed us with her sweet ways. She loves soccer, gymnastics and singing. She has a love of all living things. There are moments when she is an anchor for our busy family with her wise words. Lately, she's had a mischievous streak. She painted her hand and then made a hand print on the wall in her bedroom. She is seven now and knows better. She explained to me that she did it to always remember the size of her hand when she was seven. I want to remember too.

Last summer, Birdie gave us quite a scare. We were staying at the Lake Lawn Resort at Lake Delevan which is a time-warp of sorts. And time did stand still there for me. Nothing has changed at the resort in 30 years or more. It's sprawling with a couple of swimming pools, a restaurant, convention center, golf course, mini golf course, and, of course, an ice cream shop. When we arrived, I appreciated the nostalgia the resort provided. We were there for a regatta that our boys were sailing in. The kids had so much fun sailing, swimming in the pool, playing card games in the lobby, and enjoying plenty of sweet treats from the ice cream shop. And Birdie, being still quite young, did her best to keep up.

One morning, Sierra, our oldest (14 at the time), and Birdie stayed at the resort to enjoy a leisurely breakfast while the rest of us rushed off to the race course to watch the sailing. We were just five minutes from the resort by a quick boat ride. The plan was to pick up the girls after the first race.

Our cell phones have become appendages to our body and they are a blessing and a curse. This particular morning they were a curse. When Sierra and Birdie returned from breakfast Sierra noticed Birdie’s lip twitching. She asked Birdie about it and Birdie didn’t know it was twitching. They started to get dressed and the twitching didn’t stop. Sierra started trying to reach me but the service was spotty and she couldn’t. Birdie’s twitching started spreading to her whole face and her tongue. Sierra realized that something was very wrong and she wasn’t able to reach us so, thankfully, she called 911.

 I happened to pull my phone out and noticed a couple missed calls from Sierra and for some reason my heart raced and I asked my friends to rush me back. I knew something was wrong. Just as I was landing at the pier I was able to pick up Sierra’s call as she frantically cries, “mom, get here now, it’s Birdie. Something is very wrong. I think she is dying, 911 is on its way.” Then the call dropped. I had no idea where they were in the sprawling resort.

It is amazing how in a moment you can see your life change so dramatically and time as we know it becomes elusive. I felt like I was in a horror movie and that it just couldn’t be true as I ran across the lawn up to the resort, down the long hallway and into our room, where I found my baby girl laying on the bed, non-responsive, while the left side of her body twitched. Sierra was holding her hand and talking to the 911 dispatcher. My dear friend, a doctor, was with me and quickly assessed the situation while I paced the room. Our sweet Birdie was having a seizure. She had never had one before. It seemed like ages passed before the 911 team finally arrived. They moved in with authority and determined they needed to do an IOD into her leg. It was the fastest, most effective way to give her medicine to stop the seizure. Sierra wouldn’t leave her side and I was too scared to do anything but pace. They stabilized and moved her onto a stretcher and carried her out to the ambulance. They wouldn’t let me ride in the back with her, so I rode in the front. I did not know if she was ok. I did not know anything about seizures. I had never seen one in my life. The driver tried to comfort me by telling me that she was likely to be ok. I looked at the country scenery out the car window and I didn’t know how I would go on if she wasn’t ok.

Jason raced to the hospital from work. We all arrived at the hospital at the same time. They did a series of tests, they took her off oxygen and slowly she woke up agitated and confused about what had just happened. She was not dehydrated, there was nothing unusual in her blood. The tests came back normal and just like that they discharged us and sent us on our way. They recommended following up with a neurologist for more testing. We went back to the resort in a state of shock. Not understanding what had just happened but overwhelmed with gratitude as Birdie seemed to be coming out of it just fine. The boys came back from their day of sailing wondering why we weren’t out watching. We looked at each other and didn’t know how to explain what had just happened. I didn’t want Birdie out of my sight ever again. An intense fear filled me with questions that lodged themselves deep in my belly and heart. What if it happened again? Why did it happen? Was it my fault?

I am grateful for our circle of family and friends that loved and supported us. Nobody really understood what happened. There were those who tried to comfort me and themselves with rationalizations. But, in truth, we have no idea what caused Birdie’s seizure and we likely never will.

We did go to the neurologist the following week. And Birdie braved many tests. They confirmed that she has irregular brain activity. The good news was that they ruled out a tumor or mass in her brain. But the gradual development of her seizure, coupled with its length and an irregular EEG, concerned us all. The neurologist recommended anti-seizure medication to be on the safe side. Long seizures are dangerous and can cause brain damage, so we chose to be on the safe side and treat her with the medication. It took time, but she adjusted to taking two pills twice a day. We have to always carry emergency medication with us now as well.

Those first couple weeks after her seizure, she slept with us. I couldn’t manage without her by my side. I became obsessed learning everything possible about seizures. My fear of losing her still overwhelms me at times. I sought out a therapist and processed what we had been through. And then time performed its magic and I slowly came out of my fog. The questions still haunt me. There is a part of me that will always believe it was my fault – that her seizure was caused by a horrible cocktail of chlorine, environmental toxins, and sugar that I could have had her avoid. But the neurologist tells me that isn't the case. And I’ve come to accept that we will never know what caused it. Just like with all of life, we never know what may come; all we can do is be present and live with love.