Gratitude

I have always been sensitive. When I was three I told my mom that I wasn't going back to the babysitter's house because she'd snapped her fingers at me. Reportedly, I said "I can't handle it." For me, sensitivity is not just getting my feelings hurt easily. It's also about having feelings come to the surface easily, whether it's hurt or anger or sadness or joy.

BeYoYo has been doing a funny eye roll thing for probably about a year. At first we thought he was being a punk in response to something he didn't like, but then he'd do it at other times when that didn't make sense. We realized it wasn't voluntary. Google told us it looked like a Benign Paroxysmal Tonic Upgaze, a rare but harmless thing he'd grow out of. It has the word benign right in the title, so I read about it and didn't worry about it. At his two year check up a few weeks ago I mentioned it to our pediatrician, and I showed her where we'd accidentally caught it on video. She wasn't worried, but she said she'd like to get a pediatric neurologist to see him just to be safe.

Today was our neuro appointment. BeYoYo was pleasant, flirting with the staff and telling everyone about his horses he brought. (Their names are Bucker, Cowboy, and Latigo. He's a classic 90s Garth Brooks fan). They ate him up.

The first doctor came in, and we showed her his video.

She wasn't quite sure what it was, but thought it was likely a childhood steri-OT-o-pee. I'm guessing this comes from the word stereotype. The Husband asked about a Benign Paroxysmal Tonic Upgaze, and we apologized for googling medical conditions. She said the BPTU would be an example of a steri-OT-o-pee. Then she had her student intern watch the video, and after she examined BeYoYo, listened to his heart, checked his eyes and reflexes, and watched his gait as he chased bubbles, they had an additional neuro come in to watch it. He agreed that it could be a BPTU, or that it could be an immature nervous system, and he also suggested that it looked consistent with seizures. They all agreed that they'd like BeYoYo to get an EEG so they could have more information.

I use my mom's best friend as our personal nurse call when my kids have as much as a hiccup. She's a nurse practitioner, and I consider us continuing ed for her, always making sure she's up to date on childhood illnesses. I texted her throughout the morning to update her that we were getting an EEG and what the doctors thought. She looked up steri-OT-o-pee and sent me information.

We were able to get the EEG today as well, with just a minimal wait. They called us into a separate room for the test. BeYoYo only gets his pacie, which he calls his "boppie", at night and nap time. When we walked in to the EEG room and there was a full size bed he immediately asked for a boppie. Luckily I had a spare in the car. They needed my active two year old to lie still with electrodes on his head for 30 minutes, plus they'd need him to cooperate getting the electrodes on and off.  Kid could have anything he wanted.

I wasn't really worried about him. The neuro told us the fact that this eye roll happens infrequently was a good sign. But something about seeing the tech putting electrodes on his head was hard for me.  I settled down on the bed beside him and found an Elmo horse video on YouTube on my phone. We had told him they were going to put stickers on his head to take some pictures of his head, and when the tech placed the electrode gel on his scalp he said a quiet "ouchie" through his boppie. I moved the phone to the left and to the right so he would look in the direction she needed him to so she could place the electrodes. "Yeehaw!" said Elmo.

She proceeded to place about two dozen electrodes on him, and tape them down with medical tape. Then she placed a wrap around them, and a medical hair net/skull cap contraption around his head and chin to keep it all on. She told him it was a special hat. He used his pudgy little hand to reach up and gently pat the hat to see what it was about, and he didn't bother it again. He settled down with me in the bed to watch Elmo.

He looked worse than he was. He reminded me of the Shirley Temple's dad in The Little Princess when he had amnesia in the hospital after the war.

There he was watching Elmo with his boppie, looking very much like a baby, yet he was being much braver than I would have expected considering he couldn't have understood what was going on. Maybe that's why he was brave. I cuddled up beside him and kissed his cheek. And then I cried.


Tears spilled out of my eyes to see this child hooked up to a machine. Not sobbing, weeping, worried tears. Just a few rolling, escaping, silent tears that are hard to explain. I knew this was minor and precautionary, but suddenly I was sad for every child who has to go through medical tests, and every parent who has to watch them. No kid deserves a life like that. I thought of all the kids for whom this is a normal part of life, and thought of their parents who held their phones up with no concern for their numbing arm or their data usage. In my head I wondered about what my own parents went through when I had heart surgery as a child and stayed for a week at Egleston. A tear rolled out for St. Jude commercials and families that need them, for kids with cancer who might not have another birthday, and for those who will make the most of the second chance they've been given. I thanked God for the opportunities my kids have to play ball and argue and run in the grass, to go to birthday parties and play dates and preschool. I sent positive thoughts to all the parents, who through no fault of their own, worry about blood counts and tumors and failing organs instead of snack calendars and bug bites and carpools.

He did really great for the whole EEG. Once he sat up and asked for a snack, and the tech said we could appease him with two cheez-its. Other than that he laid still the whole time, and The Husband and I told him he was doing so great. He winced when she took off the electrodes, and said it hurt. He also got some of the gel on his hand and asked "mommy clean it?" Even though I knew he wasn't in much pain, I wished I could have done it in his place.

When we were done we checked out and loaded in the car. BeYoYo immediately asked for his barn for his horses, and we gladly complied. The Husband asked him if he wanted something for lunch and he replied "chicken nunnets!" so we headed to the Chick-fil-a drive through. I sat looking at this boy, with his barn in his hand, his boppie in his mouth, and electrode gel in his hair, and I was overcome with emotion. Thanksgiving that this is not our norm, compassion for the kids and parents who have to do this all the time, and gratitude that there's likely nothing serious wrong. I was so grateful that we get to take him home, and that we get to get him chicken nunnets. So grateful that he gets to hold his barn, and that I get to hold him. I wiped tears away.

Sometimes The Boy's slow pokiness makes me want to pull my hair out. And I'm wearing a sling on my arm because I dislocated my shoulder pulling BeYoYo from playing in the toilet. But Lord, today I was so grateful for all the messy, tiring life that I too often take for granted. And tonight when I got home from work I loved on my kids and listened to what they had to say, and really appreciated getting to sit with them at dinner and tuck them into bed. I paused this moment in my head and held it with gratitude, before sitting to have a drink with The Husband on the porch. I may not remember it tomorrow, but today I am drunk with gratitude for the life which I have done nothing to deserve. And sometimes that's what it's like to be sensitive.