Conner's Journey

Our beautiful little boy was placed in our arms at one day old. We had tried over five years to have children before we decided to adopt. The first time I saw my little Conner, I knew I was in trouble. He stole my heart instantly. I couldn't imagine being able to love anyone more than I loved him. I was so grateful to have a beautiful healthy boy to call my own.  

From the time we brought Conner home, he was never an easy baby. He slept only a few hours a day, cried for hours on end, and had bad acid reflux. At two months old, one day after his DTAP (pertusis) vaccination, I noticed a strange shaking movement in his hand. It terrified me. I contacted the doctor immediately and was told that it was normal for babies to make strange movements. At four months old, he did a repetitive head nod. I knew right away there was something very wrong. I took him into the doctor's office and was told that he might have a sleep disorder or epilepsy.  One horrible morning when Conner was six months old, we got our answer. I woke up to Conner making a gasping sound and convulsing in his crib. I saw him laying there foaming at the mouth. I had no idea what was going on. I called 911 and Conner was rushed to the emergency room. There he was put through many horrible and painful tests. The doctor started him on a seizure medication. We were terrified.  Two weeks after his hospital visit, the pediatrician decided to take him off of the seizure meds.  A child that has a seizure once doesn't necessarily mean that the child has epilepsy. It could be caused by an illness or some other unexplainable reason. 

We were thrilled and relieved at the news. Unfortunately, it was short-lived. Within just a few days, Conner had another seizure. This time it lasted about twenty minutes. From that day on, Conner was known as the adorable little boy with epilepsy.The first eight months were hell. Conner was diagnosed with Myoclonic Astatic Epilepsy (MAE), otherwise known as Doose Syndrome. The doctors also said that he had medically refractory epilepsy which meant  that he didn't respond to any medications or other treatment.  Conner seized almost everyday. The doctors decided Phenobarbital wasn't doing the trick so they put him on Keppra and Lamictal. He just kept getting worse. He was admitted into the ICU twenty-four times in that eight month period. His seizures increased in severity and duration. His longest seizure being almost three hours long. He just continued to get worse. Then one day, Conner's neurologist thought that the combination of drugs he was on could be making things worse. He told us that in rare cases, the combination of Keppra and Lemictal can worsen seizures. We took him off of the Lamictal, and sure enough he improved. He continued to have about sixty myoclonic jerks and absence stares a day, but the tonic-clonic seizures decreased from everyday to one every two weeks.

Unfortunately, his improvement was short lived.  Conner's seizures increased again. We tried many more drugs, the Ketogenic diet when Conner was 1 1/2, and then the VNS right after that. Unfortunately, after trying the diet for three months, we couldn't keep him into ketosis. The VNS improved Conner's postictal period drastically, but did not decrease the duration or severity.

During Conner's life, he had many continual EEG's, MRI's, tried EVERY medication available, even those only available in Canada, tried natural remedies, Vagus Nerve Stimuator, diets...you name it, we tried it.   One continual EEG a few years before he died, picked up 720 seizures (drops and myoclonic jerks) in a twelve hour period. His last continual EEG showed that even when Conner wasn't seizing, his brain waves were totally abnormal. His seizure patterns changed so regularly, we never knew what to expect.

 My little boy suffered so much during his short life. We were desperate for a miracle. Conner deserved a miracle! He was affected daily by this disorder.  He couldn't even eat a bowl of soup by himself. His meds and seizure activity affected his sleeping, and he was awake a big portion of the night, which in turn made his seizures worse during the day. He attended second grade and absolutely loved it. His nurse rode the bus with him and was there with him at school. The problem was, if he has a big seizure during the day or clusters of little seizures, he was not allowed to go to school. You can imagine how many days he missed due to his seizure activity and how disappointed he got when he couldn't attend. As for activity, he had a hard time even walking in a grocery store.  Developmentally, he was right on track until age four, but after that, he declined rapidly.   

He loved to be outside but had more seizures because he was excited. When Conner was excited, his seizures got a lot worse. Most birthdays, Christmas mornings, and other fun times were usually cut short due to a big seizure. That's probably what saddens me the most. Anytime he was happy, he had more seizures. It was heartbreaking. The seizures affected his memory so he couldn't even remember the fun time he was having before the seizure hit. As a parent, I wanted to take his pain away. At two years old after suffering a lot of seizure activity, he walked over to me with his hand on his head and simply said "Hurt, Mommy take away hurt". That moment I will NEVER forget. I'm his mommy, and mommy's are supposed to be able to make them better, and this one thing, I couldn't fix.

Conner was re-diagnosed in February 2009 with Lennox-Gastaut Syndrome, a very devastating disease that leaves 95% of people permanently disabled, mentally and physically.  Between 2009 and May 2011, Conner lost a lot of function. He was only about a two to three year old level. He lost the ability to get himself dressed, buckle himself in the car, and his speech became very hard to understand. He even walked differently. He has lost the ability to play and though he was not Autistic, he was on the spectrum and developed many Autistic tendencies and ticks. He whistled, tapped, banged, clapped, etc. He had also developed many obsessive/compulsive behaviors including pulling out his toenails and fingernails. We tried him on Banzel; a brand new medication specifically made to treat Lennox-Gastaut patients. Unfortunately, there was no improvement.

 Though his seizures took the freedom most young boys enjoy, he found a unique way to savor life.  Conner was a happy boy.  He loved people, kisses, Herbie the Love Bug, watching movies, throwing rocks, cheesy chips, and proposing to pretty girls.  He was sweet, compassionate, and had a naughty side too.  He enjoyed bugging his sisters...and his mommy!  He laughed a lot.  To this day, I can hear his out of control giggle in my head.  His spirit was strong, and strangers would come up to me and say, "I don't know what it is, but there is something very special about your little boy."  They were right.  I knew it the moment he was placed in my arms.  He was going to do extraordinary things.  He did, and he continues to enrich lives today, even though he isn't physically here with us anymore.

One May 6th, 2011, Bryan and I went into Conner's room at 8am to get him ready for school, and found him face down in his bed, not breathing.  He passed sometime  in the early hours of the 6th from a seizure.  Though we do not know exactly what happened, we do know that he seized and aspirated.  After he passed, we heard the term SUDEP for the very first time;  Sudden Unexpected Death in Epilepsy.  Though we knew how fragile Conner's life was, we never thought this day would actually come.  Twice during Conner's life, he stopped breathing and his heart stopped during seizures.   We had to resuscitate him frequently because he would stop breathing and needed help.  Knowing this actually gave me a false sense of security.  May sound strange, but I would think to myself, "He does this all the time yet, HE ALWAYS COMES BACK!"  He will ALWAYS come back.  This time, he didn't.  Sometimes I beat myself up for not hearing the seizure.  I always heard!  It was my job to hear!  Then my friend pointed out something that changed me forever.  "Maybe he didn't make a sound or maybe you were not SUPPOSED to hear.  Maybe Heavenly Father was just answering his daily prayer, "Please bless I don't want to have seizures".  He decided that Conner's earthly life was complete and he was rescuing him from future pain and suffering."  Though I am so grateful that Conner is no longer suffering, I miss my boy.  I miss his laugh, his smile, and everything else that made Conner, Conner. 

Believe it or not, I am still thankful for my Father in Heaven and all of the blessings he has given me.  Trials too.  I have learned so much about myself.  I have learned that I would sacrifice ANYTHING for my children.  Even though I have suffered a great loss, I wouldn't change my eight years with Conner for anything.  Yes, it was hard, and yes, losing him was the hardest thing I've ever gone through or will ever gone through, but he was worth it.  I would do it a million times over just to have him in my life.  He was "My bestest boy in the whole land." Yes, he could be the biggest turd on the planet, and we butted heads a lot, but no one could cuddle like we did.  We could fight and fight and then crawl into bed and snuggle.  The day before he died, he had a really bad seizure day.  At about 11am he and I retreated to my bed and just held each other close.  He had his "Duckies", which was his favorite blanket, and he sucked his thumb while rubbing one of his tassles on his nose.  I will never forget that moment, as it was the last time we ever held each other.

Life is full of ups and downs.  I have discovered that I am a much stronger person than I thought I was.  I am still standing because of our amazingly supportive family and friends.  They have been with us through wonderful times, and really horrible times. I know that with them, the knowledge that families can be together forever, and God at our sides, we will be able to survive whatever life throws at us.  My husband and I will fight for everyone affected by Epilepsy and SUDEP.  We will do everything in our power to educate people, and support people battling this disorder.  Awareness is the key to finding a cure.  We need funding.  We need support.  We need YOU on our team.  Help us fight for a cure.  Help us remember people like Conner, who died, and people like Hannah, who are still bravely fighting.  We can do this.  We can bring about CHANGE!!!