T to B: Sydney meeting her new sister; Kenzie at
6 weeks old and smiling during her bath; Kenzie having
some "thumb time" with her daddy.
Warning: This blog post is going to reach monstrous word count proportions.
Once upon a time, I never wanted children. I wanted to be a career woman. All through college, my resolve built. My plan was to work my way up through the specialty retail company I started working for while a junior in high school. I even transferred to a large metropolitan market after obtaining my college degree. My plans continued to take shape, but instead of visual merchandising, which I was good at, I found myself being drawn towards loss prevention. I liked order. I liked keeping meticulous files and helping out at other stores within my district when store personnel were caught stealing. Maybe it was the mystery book lover in me. I don’t know, but I liked being an official witness while employees were being questioned by our regional loss prevention coordinator. I liked watching justice being served. Other managers got nervous when they heard our coordinator was out and about in the district doing surprise audits. I looked forward to their visits. My store was in order, I had nothing to fear, and we would spend time catching up.
My husband and I had entered into our marriage four years earlier with the mindset we’d spoil the hell out of our nieces and nephews, but never have children of our own. We’d be DINK’s (double-income-no-kids). Then, age thirty was in sight. My husband caved first. He caved like an igloo in July. For months, he kept reminding me that age thirty was approaching for both of us—mine especially. As if my biological clock would suddenly wind down before I was finished blowing out my birthday candles. Part of me was hoping that that scenario would really happen. My only baby experience involved holding my oldest niece, Stephanie, when she was a newborn and she barfed down my cleavage. I was wearing my favorite Victoria’s Secret bra and, no matter how many times it had been laundered after the incident, I swear I could still smell regurgitated Similac. I still haven’t forgiven her. At any rate, my husband had his work cut out. In the meantime, we ended up moving back to our hometown through our respective companies.
Almost six months later, I finally gave in to starting a family. Mind you, it involved numerous bargaining sessions. I made him promise he’d help out by changing diapers, giving middle of the night feedings, staying up with a sick infant, etc. And he agreed. (I should have had it in writing and notarized because the diaper thing seldom happened, he slept through all middle of the night feedings, and never once stayed up all night with a sick infant.) Fourteen months later, a 6.5lb baby girl came into our lives. We named her Sydney after Annette Benning’s character in The American President. A year into being a mom, I asked for a demotion and transfer in order to be closer to home and work less hours. So long career woman. It was all good though. I acclimated to motherhood, surprising myself, perhaps, the most. My heart swelled with love. Three years later, a 6.9lb baby girl joined our little family. We named her Mackenzie. Second babies are so much easier. The first child is the practice child. By the time #2 comes along, you’ve been there, done that. Don’t get me wrong. You still get a little nutty when they’re sick, but you don’t freak out like you did with the first.
|L to R: Kenzie and her bedtime bottle with her favorite stuffed animal, Mr. Lion; Sydney and Kenzie|
As Mackenzie grew, I began having concerns because she wasn’t hitting milestones at the same rate her older sister did. She crawled later. Didn’t say much. Walked later. Items I brought up with our older pediatrician who told me I needed to stop comparing her to her sister. Sydney was a precocious child. Mackenzie was going at her own rate. Most of her milestones were falling within range, but on the upper part of the range. Just enough that her doctor wasn’t concerned. Even by three years old, she wasn’t the chatterbox her sister was. He asked me why would she need to talk when her older sister talked for her. And it was true. Mackenzie would point and grunt at something and Sydney would tell me what she wanted or get it for her. Time and time again. When Sydney started kindergarten, Mackenzie did start to talk more, which fell in line with what our pediatrician had said right along.
I began volunteering at Sydney’s elementary school. My favorite was helping out in the kindergarten room during Kid Writing. Go figure. I just loved watching them draw their pictures and then come up with a sentence to go with it. The best part was watching the progress they each made as the school year went on. By the time Mackenzie was old enough to be enrolled, I knew she wasn’t ready. I spoke with the principal and she told me that if I felt she needed another year at home, then that’s what I needed to do. Especially since her birthday was in August. I chalked it up to Mackenzie not being mature enough. She had a hard time sitting still. While Sydney loved watching movies when she was little, Mackenzie couldn’t be bothered. She was always on the go. The same as she was when I sat down with her and tried to teach her how to write her first name or learn her letters and numbers. She barely knew her colors. I couldn’t get anywhere with her. Not to compare my girls again, but by eighteen months, Sydney could count to twenty in English, German, and Spanish. By three, she knew how to write her first name. She also was an only child then and getting my full attention.
|Sydney and Kenzie when they used to "love" each other.|
The spring before Mackenzie started kindergarten, my husband and I decided I would take early retirement from my job of eighteen years. Financially, we knew things would be tight for our family of four, but we could swing it. We knew it was the best choice for Mackenzie. She needed a stay-at-home mom and not someone working nights, holidays, and weekends. She needed routine. (Routine is a word that will come up again in this blog post.) I got to experience my first summer at home with my girls. It was great. Everything I hoped it would be. And then the new school year began and, with it, the daily phone calls from school. Sometimes, twice a day. Mackenzie was acting up. Thank God I knew all of the teachers at school from my prior years of volunteering because, otherwise, I don’t know if they would have been as gracious. My husband and I learned what B-Mods were—Behavior Modifications for those unfamiliar. At school, they used sticker charts and reward charts with mixed results. One day, she’d be good and, the next, terrible—climbing under her desk and refusing to come out, running around, or having sudden outbursts of words or nonsensical noises. We had progress meetings. Discussed her poor academic progress and her behavior. When summer vacation arrived, we found a fantastic pediatric psychologist and took her weekly for sessions. The psychologist helped us immensely as parents. We had to learn a totally different parenting style for raising Mackenzie. Things that worked for Sydney didn’t yield the same positive results with Mackenzie. By first grade, I was afraid she was going to be kicked out of school because she was so disruptive. I even started smoking again—a habit I gave up when we decided to start our family. But I couldn’t help it. I was a nervous wreck.
Six weeks into the school year, the phone rang shortly after dismissal time, but before the bus dropped the girls at home. My husband, already home from work, answered. It was Mackenzie’s art teacher—a former school friend who I’d reformed a friendship with after Sydney started school. While I was waiting to hear how horrible Mackenzie’s behavior was in art class that day, something else happened. He had even called his father, a retired school administrator, to get his opinion before calling us. His father concurred with his observation and urged him to call us immediately. His story: Mackenzie’s class was his last of the day. He asked the students to stack their chairs on their desks to help the custodians for later. All the kids stood and went about their task. Mackenzie got up, but stopped. In fact, she froze. While twenty-eight other first graders stacked chairs and talked excitedly, she wasn’t reacting. My friend took note of it because her classmates were trying to get her attention since she hadn’t stacked her chair. He then tried to get her attention, to no avail. Suddenly, she jerked and was back. The "spell" lasted a minute and a half to two minutes. He said her eyes were open and she didn’t blink. She just stood in place. He was fairly certain that what he had witnessed was a seizure of some sort.
His phone call brought about a long chain of events. The first, was to call our pediatrician's office. Our regular pediatrician was out of the country. We weren’t sure about seeing someone unfamiliar with our child, but took her in anyway. After arriving, we found out the pediatrician was not only unfamiliar with Mackenzie, she was young and new to the practice. But our uncertainty about her qualifications disappeared immediately. She was thorough, concerned, and moved heaven and earth to set up tests and an appointment with a pediatric neurologist. First came the EEG appointment. Mackenzie had twenty-some electrodes attached to her head. The lights were dimmed and she had to go through a series of activities while her brainwaves were monitored. Keeping her still and making her cooperate wasn’t easy, but we got through it. Three days later, we met with the pediatric neurologist and he delivered the news: Mackenzie had epilepsy. More specifically, absence seizures. The EEG indicated she was probably suffering hundreds of five to ten-second seizures a day. A day. They were so short in span, no one noticed--until that one day in art class when it lasted so long. The neurologist told us she probably started having them at around three years old. Her behaviors, in part, were due to the seizures. She was living in a stop and start world and acting out was her way of dealing with it. He told us it would heavily affect her academics. My husband and I felt horrible. We felt as if we had failed her for not noticing. According to the doctor, unless you have prior experience with someone suffering from them, chances are, you wouldn’t know any better. Her final diagnosis came with the following words: Predisposition for a Generalized Seizure. He told us that, while she was prone to absence seizures, her EEG indicated she had a 10% chance of having a grand mal seizure. The good news was, he felt she had a 90% chance of maturing out of her seizures after puberty. It was a bad news/good news prognosis. It took seven months and three different medications until we found the best match for her. A year later, she was diagnosed with ADHD and started Adderall. Between the controlled seizures and ADHD, her behaviors at school made a complete turnaround. However, she still struggled academically. Despite the seizures ending, it was overwhelmingly evident she had learning disabilities and her social skills were lacking. By fourth grade, she was diagnosed with an Autism Spectrum Disorder—which justified my earlier fears about her hitting developmental milestones late. I had been comparing my children, yes, but with just cause. It explained her need for routine and order.
Mackenzie is fourteen, almost fifteen now. At the start of summer, her neurologist consulted with us about weaning her from her anti-seizure meds in an attempt to see if she was now seizure-free. It took six weeks to do using a gradual withdrawal approach. Her last dosage was on July 9th. In that month, we noticed a slight decrease in her appetite. One of the drawbacks of anti-seizure meds is weight gain. Mackenzie gained 21 pounds this past year. Our celebration was short-lived. On August 2nd, Mackenzie suffered her first grand mal or generalized tonic-clonic seizure. It was the most terrifying moment of my life. My husband’s as well. Thankfully, we were home together when it happened because the whole incident took teamwork. While she was on the floor, unconscious and convulsing, my husband, who got to her first, went down on the floor nearby her and talked to her, monitoring her, while I called 911. We leaned on each other to keep it together. She seized for around ten minutes total. The first, longest wave, lasted a minute and a half to two minutes followed by a series of smaller seizures. During the third or fourth, she stopped breathing for thirty seconds. I almost came unglued while talking to the 911 dispatcher at that point. Even though it seemed like hours passed from the moment the seizure struck and the ambulance arrived, in reality, it was more like fifteen or twenty minutes. Mackenzie was conscious by then, but she was utterly confused, mumbling, and when she could form words, they were slurred. It was so nice having familiar faces from our local ambulance association show up and take over. Mackenzie handled everything like a champ. The girl who doesn’t like being touched, even by family, knew the people swarming her were trying to help even though she wasn’t sure what was happening.
Mackenzie was admitted to the hospital overnight and administered a mega-load of her former anti-seizure medication. Again, at the hospital, she was a total champ. Talked with doctors and nurses. Actually joked because she had a slight warning, known as an aura, come over her before the seizure hit. She told anyone who would listen she should have yelled, “Timber! I’m going down!” She did give my husband notice, but it came a little too late for him to react and, unfortunately, she collapsed from a standing position into the arm of the loveseat, face-first. Luckily, she didn’t sustain a concussion or fractures from the fall. She was left with bruising on her arms and legs as well as developed broken capillaries all over her face, neck, and shoulders. The later was a combination of physical straining and elevated blood pressure during the actual seizure’s tonic-clonic phase. My poor baby looked like one giant bruise.
She’s been home for over a week now. Back on her regular dose of anti-seizure medication. Lingering side-effects of the seizure have left her fatigued with a slight headache, nausea, as well as muscle aches. They lasted a few days. I haven’t been able to let her out of my sight. I slept on her bedroom floor at night and during the day during her catnaps since I wasn’t sleeping well at night. It sounds like paranoia, but I had to periodically make sure she was breathing. It was like having a newborn and worrying about SIDs all over again. During the past two days, I have relaxed quite a bit. She still needs to be monitored while bathing. Her neurologist has restricted her from activities with heights and from swimming. She has to avoid electronics with the strobe effect. He feels she will be fine and is hopeful we can try to take a break again in maybe two years. I have mixed feelings about that, but it is the only true way to see if her seizures have left her. An EEG during the break could cause a false positive. I never want her to have a grand mal seizure again. It was horrific to witness. I can’t imagine what it was like for her when she felt it coming on and didn’t know what was wrong. Or how scared she must have been when it was over. She has no recollection of the actual seizure or what happened immediately following. Amnesia is common. Her memory returns to her somewhere during the commute to the hospital. She remembers talking to the EMTs and inviting all of them to come back to our house sometime so she can show them her pet chickens.
|L to R: Kenzie upon discharge with her "freckles" from the broken capillaries and her smiling face, four days later, and the freckles are almost gone.|
I am so thankful to have her back to herself! Everything could have been much worse. I think about John Travolta's son, Jett, and how he died from injuries sustained during his seizure. Mackenzie was lucky. All in all, the event has made me reevaluate my priorities. I’m spending more time with her. We've colored and did word searches and read her summer chapter book while doing little things to make it fun like spreading a blanket out under a shade tree in the backyard. We’ve “played” together. She’s fourteen and growing up, but in many ways she’s always going to be like a seven or eight year old child. I have to remember that. I have to spend time with her and cater to her mentality. She isn’t like Sydney. She’s Mackenzie. And she has her own likes and special needs. I know that, but sometimes I don’t live it.
If you made it to the end of this long blog post, thank you for hanging around!