If you new to my blog, start here. After reading the background, scroll down to start from the oldest posts and work your way up. This will help make sense of it all. Enjoy.

There are a few moments or dates we never forget as we journey through life: the first day of school, your wedding, an anniversary, or the birth of a child. For me, November 26, 2010, is one of those significant dates. It will forever be etched in the forefront of my mind. On that day, a surgeon disconnected the malformed, left side of my daughter’s brain from the other half – The good side.

I know the concept sounds impossible and unthinkable to most and even barbaric to some. What’s worse, I didn’t just decide this fate for her but in the days leading to surgery, I begged and pleaded for it in hopes of saving her life. Nothing else could save her from the intractable seizures that took over her tiny body. Her young brain was like a big city on the verge of a blackout.

Thinking back on that day my husband Billy and I were rightfully scared, but found ourselves equally relieved to finally see an end in sight, grateful to have this option, and somehow at peace with our decision. Quite honestly, in the end we were left with no other choice if we wanted to give our daughter any semblance of a normal life.

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I began to journal my daughter’s story after her diagnosis just to make sure immediate family and friends got updates on Katie’s health. It got so I couldn’t remember whom I had told what and Katie’s condition started changing daily. The number of updates grew as did the number of people checking in. Before long my family had an account of our lives and I found an outlet for my thoughts, fears and joys.  Friends and strangers alike began to pray for a little girl and follow her down life’s unwritten path. It became an inspirational voice for a rusty communications major. It hasn’t been an easy journey for any of us but life’s blessings come in all shapes and sizes. You just have to hold on for the ride and keep your eyes open to see them.

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The Beginning

Our journey began in the Summer of 2009 at my daughter Katie’s 18 month check-up. Her pediatrician and I realized her developmental delays could no longer be ignored.

He recommended getting her assessed by Early intervention in our county and started the referral process to get her seen by a local neurologist. With delays in children it’s always a good first step to get evaluated by a neurologist to rule out a medical or genetic component.

Katie is our second child so I didn’t stress out over her accomplishments like I did with our son. Although I referred to her as my “late bloomer”, she eventually met most milestones; However, by 18 months she was nowhere near walking and eating tablefoods proved to be quite a challenge. It’s fair to say a touch of denial played into my reasoning for not pushing for testing sooner. I remembered thinking it was the difference between boys and girls. While our son Nathan was very active as a baby, she seemed content to stay in one spot and play with her toys. 

I can even recall the relief after giving birth to her thinking to myself how lucky we were to have two healthy children. It was everything we wanted. The future was bright. Ten fingers. Ten toes. One boy. One girl. Two healthy children.

After Katie’s initial evaluation, the Early Intervention therapists determined she qualified for speech, occupational and physical therapy. They worked with our case manager to coordinate therapists to come provide services to Katie in the home. The results of their findings were hypotonia or poor muscle tone but we were told it was just an opinion as it’s not their place to diagnose.

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Now that the wheels had been set in motion is seemed a bit overwhelming and unreal at first, but after a little thought this didn’t seem too devastating to me. I could handle hypotonia. It was nice to have a tentative label that could be typed into a search engine. It wasn’t a technical diagnosis but it did explain her delays. After all, muscles are needed for walking, chewing, swallowing, talking and most everything we do.  My husband Billy and I wanted to get her in to the neurologist but we weren’t in a hurry. We were no longer silent observers. We had a plan. Therapists started coming to our home and we went on with life as usual. This plan lasted for a few months.

On September 28, 2009, Billy heard Katie cry out in her sleep. The cry didn’t sound right and sent him to investigate. By the time he got to her crib she seemed to be twitching. Upon picking her up she was mumbling and her eyes were really dazed. 

I remember getting ready for bed in the master-bathroom and looking up to see my husband carrying our daughter in to me with a worried look on his face. He was looking to me for a call of action. This is when a mother’s intuition steps in. I didn’t know what to think but seeing them in the doorway caused the hairs on my neck to stand up and my stomach to rise up to my chest. Katie seemed weary and confused so we decided to take her to the ER. 

We don’t have family in town but that weekend, my in-laws just happened to be in for a visit and were staying at a local hotel. One late night phone call and grandpa was on his way to stay with our sleeping son. I dashed out the door to follow Billy and Katie to our local emergency room. Well, you know children….by the time we got there she seemed fine. 

The ER doctor couldn’t confirm or deny if she had a seizure or not. We did our best to explain what we saw but knew we hadn’t seen the entire episode. It’s hard to put into words something you only saw briefly and weren’t expecting to see. The plan was to take her home and get her seen by her pediatrician the next day.

The good thing about her episode is it expedited her referral to the neurologist. A suspected seizure will do that. We stayed on high alert for any sound coming from her room and in the next few days she had a few more episodes. We didn’t know it at the time but we were witnessing the first of many seizures and our lives had been changed forever.

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The formal testing process began with a routine EEG before we even went to the first appointment with the neurologist. He explained said she had 20 abnormal peaks in her brain activity in only 28 minutes and recommended more tests. He suspected a brain malformation or a genetic disorder. I don’t recall asking any questions at that point. I felt like I was having an out of body experience. I could hear him speaking but the words sounded foggy and weighted like I was underwater. I just stared at my beautiful little girl while he was talking thinking this just couldn’t be happening. In that moment, she looked so perfect. It was hard to believe anything could be wrong.

The worst thing you can do with partial information and a few new medical terms is get on the internet and consult Dr. Google, but it’s very difficult to just sit back and wait for testing when it’s your child. While I can be more of an ostrich with my head in the sand when it comes to major life events like this, Billy got on the computer that night and began reading and searching for answers. After reading he narrowed down a few possible syndromes. We suspected Angelman, Rett syndrome, or a pediatric stroke, and none sounded like anything you would wish on your worst enemy much less your own child. We really didn’t have enough information to know what it could be or even what to hope for so we prayed for what would be the lesser of possible evils.

With the abnormal results of the EEG, her neurologist ordered more tests for the upcoming weeks and scheduled us to come back in. This was the first of many times we have had to wait for answers. After drawing blood for genetics testing, we scheduled her MRI and all seemed quiet on the home-front until Halloween. Up to this point the few seizures she had were during sleep so we still hopeful. In scouring the internet, we read that children with night time seizures can grow out of it. We held on to this theory until we were told otherwise. 

Halloween afternoon changed all that. She woke up from her nap and while standing at kid’s table having a snack, she took a sip from her apple juice box, dropped to the floor, and went into a seizure.  She had a couple more seizures over the next few days.

On November 5, 2009, our baby girl turned two and spent the morning at the hospital getting sedated for her MRI. Just a couple days later , we got a call from the neurology nurse requesting us to come in for the results. I’ll admit this call made me catch my breath because we had been told it would take 3 weeks to hear test results. When a doctor asks you to come in to the office for results, you are about to get bad news.

The appointment began with the neurologist saying,”Well, I wasn’t expecting what we found.”

At that, he may as well have punched me in the stomach. Left Hemimegalencephaly, a severe form of cortical dysplasia. As he began to explain this deformity I was still trying to recall and repeat the words in my mind.

The short answer is the involved hemisphere is larger than normal. In addition to being large, it is also profoundly dysfunctional as the brain in that area has not developed properly. The unaffected side typically has normal cortical development but can be abnormally small, because the large abnormal side restricts the normal growth of the unaffected side. In layman’s terms, this means “half big brain” and it is a very rare condition. This abnormal formation of the cerebral cortex is causing the seizures, hemiparesis (weakness) on the right side of her body, developmental delays, and low muscle tone.

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Finally, an answer we could read and learn about. It was this time I did accept this news and began to look on the internet for information and support. I was able to find the Hemispherectomy Foundation and with that a group of parents with children like Katie. The wealth of information I found and the unlikely friendships there gave me the first glimpse of hope….and fear.

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The amazing brain of a child will allow the better side of the brain to compensate for what the malformed side can no longer perform. Of course, this is brain surgery and that ideal outcome doesn’t come without a price. Many children can expect hemiparesis (weakness down one side of the body) with little to no use of one hand/arm, hemianopsia (half the field of vision in both eyes is lost), and global developmental delays. Some children have a feeding tube, speech delays or no speech, and/or…..the return of seizures that got them the surgery in the first place. If you find yourself catching your breath at the thought of putting your child through such a radical procedure, try doing it three or even four times as a few brave parents I know have done just that.

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Looking back…

Without much effort I can take myself back to that day. Katie’s surgery was scheduled for the day after Thanksgiving in 2010. The symbolism is hard to miss. There is nothing I could have been more thankful.

Billy and I celebrated our Thanksgiving meal together in Katie’s hospital room. There were no china plates, fluted glasses, burned rolls or gravy boats in sight but I we felt the true meaning of Thanksgiving.

Surgery was scheduled for 7 am the following morning. It was my night to be “on-call” in the cramped hospital room. We had been living this shiftwork life for months even prior to coming to the hospital. Katie’s seizures had gotten so bad in the night we began taking turns to be with her while trying to keep some shred of our own sanity. Knowing we would eventually get sleep kept us functioning and allowed one of us to be with her at all times. At this point, we had been at Duke University Hospital in Durham, North Carolina, over a week alternating between the unsavory, discount motel room and the battle zone of the hospital room caring for our daughter’s declining condition. 

I wanted to be the soldier on the front line that night. Her seizures had consumed my days and nights for more than a year and I had a battle to win. I intended to stay up and witness the last seizure.

The final days leading to surgery had been desperate and dark with the final hours proving to be no different. The seizures had grown worse with each passing day. They seemed to cluster together and kindle like the embers of a campfire. Despite all efforts from her medical team, nothing was putting out the flames.

The night before surgery I couldn’t even find retreat in the cramped recliner lodged by the corner window. In those wee hours, she seized every couple minutes. I finally stood bedside leaning over the rails holding a suction tube to remove excess drool in one hand and oxygen in the other. At times it was hard to determine when one stopped and the next began. Some of the night I think she was in a constant epileptic state. The nurses buzzed around us. They exchanged a kind look or caress to my neck when they passed. We all knew there wasn’t much to do accept wait until morning. At some point between 4 and 6am, when the nurses came to transport her to surgery, the seizures stopped and we had both fell asleep. Physically and mentally I was so overcome with exhaustion I don’t even remember ever leaving her side. I awoke with a start thinking allowed, “I wasn’t supposed to fall asleep.”

Billy arrived as they began loading the monitor and wires that would accompany Katie and her crib. We gathered our things and down the hall we were led to the pre-surgery area. For the first time in days Katie was sleeping peacefully and to our relief didn’t wake up before we said our goodbyes and let them prep her for brain surgery. 

It was somehow easier and less dramatic letting them take her to the OR as she slept. I didn’t want her to be scared and I couldn’t handle telling her goodbye. In order to make it through the hours of surgery, I couldn’t allow my emotions to consume me right before the finish line. It was just as well that she slept.

I had been told by other parents this day would be the most terryfing and hopeful day imaginable. After the team wheeled her away we knew we made the right decision. We had been praying for a year that if surgery was the right decision God would lead us to that day. That day was here.

The hours of surgery

After softly kissing her sweet face and whispering a last prayer, we left our baby in the gifted hands of the surgical team. If things went as planned we had five hours to get through. Five hours to wait. Five hours to worry. Five hours to think. Five hours to pray.

Everyone handles stress differently. We certainly could have gone for a long walk, paced the halls of the waiting area, headed to a bar and started a tab, or thrown ourselves in the floor and crumbled from the weight of worry and tears. Instead, we headed to the cafeteria for breakfast. In finding our sense of peace with our decision, I suppose we found our appetites too. Even though we were facing this day alone, we were surrounded with prayers of support and love from Texas to North Carolina. 

Over coffee and egg sandwiches we shared a meal like it was just another day. We found ourselves talking about any and everything but the surgery. I suppose it was a defense mechanism for us. Of all the things I remember about that day, I fondly remember discussing the history and origin of pumpkin chucking with my husband. I don’t think we could have come up with anything more random if we tried. After all, it was Fall and certainly pumpkin season so despite what we were going through, the rest of the world was going on with their lives. Apparently life for some includes building contraptions that hurl large pumpkins into the air for sport.

In hind site, I suppose it was a ridiculous conversation to have over breakfast while a team sliced into my daughter’s brain but it was a necessary distraction. After our brief escape from reality, we headed back to the surgical floor waiting area.

We got our first update about an hour later – the first cut had been made. One hour down, four more to go. They have the waiting area down to a science. When you check in a secretary gives you a pager. Throughout surgery, your medical team sends updates to the secretary who will page the family members and provide updates. 

Another half hour or so past and we both felt the exhaustion setting in. Neither one of us got more than a couple hours sleep so after scouting out the floor a bit more we found a section of recliners partitioned off as a quiet area. I guess it’s a wonder or maybe even a crime to nap while your baby girl is having brain surgery but nap we did. The lack of sleep and mental exhaustion caught up to us. The time comes when you have done just about everything there is to do. I had taken her to specialists, tried different medicines, gotten other opinions and spoken to other families with the same unique needs and complex medical histories. The time must come when you just have to let go and feel confident in the professionals you have chosen to care for your child.

Unfortunately, our naps were short-lived and restless. I vividly remember dreaming of being lost in the woods in the dead of winter with nightfall near. I wanted to find a soft place in the leaves under a tree to sit and cry and give up, but then I looked up and I saw a horse in the distance.  I knew my only hope of trying to escape this wilderness was by horseback but every time I tried to jump on the horse he would buck and pull until he finally galloped away. I then woke to see other patients and visitors passing by pulling luggage and rolling briefcases behind them across the tile. As the wheels rolled over the tiles, I heard the sound from my dream. Galloping horses. 

Billy’s nap was no more restful. He shared his dream of walking through the airport alone only to find a knife in his pocket right as he was entering the baggage check area. No matter where he turned he couldn’t find a place to get rid of it. Helpless. Even in our sleep we both found ourselves helpless. Even in our dreams, there was no escape.

A few more hours past, a few more pager updates, a few more cups of coffee and we got word it was over and the surgeon was closing her up. We were led to a separate room to wait for the surgeon to come update us. He said she did well, there were no complications and he even finished sooner than expected. It was over. 

After surgery – Our second chance

After an hour or so she was moved from recovery to the ICU and we were then able to see her. She looked so small and innocent. Her head was tightly wrapped and a visible drain was sewn into the side of her scalp to remove excess fluids and debris from the long surgery. Her eyes were closed and the effects of the anesthesia and pain medicine seemed to pull her back under when she tried to stir.

I was so relieved to see she made it through surgery. All the months and weeks that lead us to this day were finally over. All Billy and I could do was stare at her. For the first time in months she was sleeping peacefully.

After getting past the initial relief of getting my daughter through a surgery like this, I couldn’t help but think about what was next. I wondered if she was still my same little girl. It seemed selfish to consider at the time when you realize the seizures were already pecking away at her and changing her. I shared these worries with other parents and her surgeon and was told not to worry. She would have her share of challenges to overcome but everyone said she would still be our Katie. Her surgeon said he had removed right hemispheres and left hemispheres so it was really a mystery where the brain holds personality.

Though she was just out of surgery and still remained so groggy, I leaned in to let her know I was there and said, “Hi, baby, it’s Mommy”. To our delight, surprise, wonder and relief she used her sign language to sign “hi” “Mommy” without even opening her eyes. I knew she wasn’t really awake yet but this small gesture told me she was still in there somewhere. She was already fighting her way back. I will always say that was literally my sign from above that everything was going to be just fine.