My husband and I had just gotten use to leaving Ethan home alone for a few hours at a time.  Seizures brought this  to a screeching halt. Once again we adjusted, never letting him out of our sight. Becoming a teenager while having seizures didn’t allow for much time for himself. A few good friends understood Ethan and were well versed in the procedure for seizures, this allowed Ethan some time away from his parents. We were dedicated to making life as “normal” as possible even though in reality we were so far away from “normal”, we couldn’t even comprehend what it would be like.

I never really thought about how seizures were affecting us as a family. Each of us did what we had to do with our head constantly looking forward. In April 2009, when the second seizure medication was added the seizures stopped. Suddenly, I understood the stress it was taking on me and my family.  Sizures had become part of our daily routine. After two days we had seen none, I could identify the amount of stress we’d been under.  It felt as if a switch had been flipped.  We continued to be prepared, but it went unused.  A sensation filled me that I couldn’t explain.  The only word that even comes close to describing it would be “free”, a new sense of freedomed had been given to my family. We no longer felt the strings of tuberous sclerosis strangling us, threatening to forever maintain control.

Since May 3rd, 1996, there hasn’t been one moment of any day that I have forgotten that my son has tuberous sclerosis.  At times, like regaining seizure control, we feel that at lease tuberous sclerosis has moved on and forgotten us for a little while longer.  Once again we live  one day at a time, never knowing when it will all come crashing down upon us again. Never knowing when and if seizures will return tomorrow or the day after that, or the day after that…..

The old saying goes “the third times a charm.” For my son, I hope this isn’t the case. This is his second procedure on his kidney and the damn thing won’t shrink or disappear. On the positive side, this second time, Ethan is less anxious since he knows what to expect.

I will never know if Ethan’s anxiety is caused by the disease or ordinary genetics. The night before I went in to be induced, I about lost it. The ultimate unknown about sent me over the edge. I don’t have tuberous sclerosis, but now that I better understand so many medial issues, I’ve identified my own anxiety issues. Often these same issues I can identify within the mind of my own son. Growing up, I didn’t have a mother who understood how my mind worked, or at least didn’t acknowledge it.

I never thought I would ever have an only child. It was my goal, not to bring just one child into this world. God must of had a different plan. Who’s to say that God doesn’t know what he’s doing. Ethan and I have a very special bond. As he transitions into an adult, I know he will begin to understand me more than he ever thought possible.  We are so much alike.  At this point he just wonders, “How’d you know that!” One day, he will understand.

I know many parents who have “normal” children and who become irrationally over protective. I wish I had that opportunity. Today, I have to turn my son over the medical professionals – whom I have saught out the best – and trust that my son will be O.K. Throughout his life, I will have to routinely do this again and again. In this life, I don’t get the option of keeping my son to myself and sheltering him from outside pain and suffering.

To those parents who fail to let their children be just that, children. I want to slap your face. Live life. Stop taking things for granted.  You can’t protect your child from life.

As these “episodes” continued, we grew more concerned. His one year check up was quickly approaching so we videotaped them for the doctor.  Once our pediatrician saw these, she knew exactly what it was. Ethan was born with white spots all over his body. One of the largest is located on the back of his head on the left side.  It expands up into his hair creating a white patch. I claim that God made my son stand out with this marking because he feared that I might loose him in a crowd. Little did I know that a diagnosis of tuberous sclerosis meant that my husband and I would choose not to have more children.

After the pediatrician broke the news to us, she still had to get confirmation with and EEG, EKG, CT Scan, and ultrasounds. The list of tests seemed to multiply as quickly as we completed each test.  Time after time, we heard physicians report that our son would be “retarded”, “autistic”, with multiple “learning disorders”. We would politely reply, “Hmm, is that so?” When in our hearts, we knew that only one person knew what our son would be, and that is our son!  At home we took one day at a time, pressing forward with a “normal” life – which we learned doesn’t exist – giving Ethan every opportunity to learn, experience life, and thrive. Ethan defied the dozens of prognoses.

Today, thirteen years later, he is a normal pubecent teen.  While some parents would be disappointed with a child with an average IQ – we are estatic that Ethan’s falls smack dab in the middle of average. In school, Ethan’s IEP (Individualized Education Plan) covers accommodations for his unique  medical needs.

A medication called ACTH, got Ethan’s infantile spasms stopped within 24 hours. I gave him one shot a day for thirty-five days. After 35 days, seizures were gone for the next decade.  At the age of eleven, in the sixth grade, Ethan began having simple partial seizures. Again, they appears unseizure like, we thought they were panic attacks.  It was February 14, 2007 when he had his first status seizure – it lasted three hours.  At the emergency room, they chose not to use diastat which I knew many families used, and selected another medication.  After eight doses, and three hours, I had to demand another type of medication – cerabyx – this one worked almost immediately.

After a very long day waiting for Ethan to wake up and respond, he woke up admitted into a local hospital. This is where we stayed for the next three days once again, tests, tests, and more tests.  The EEG was normal, but it was obvious that he was having seizures. Now it was time to put him on another medication. Keppra brought good control for about eighteen months.

Last summer seizures returned and over the next eight months they progressively increased in intensity. They disrupted his school day, but the trooper he is, he missed little school. Not long ago, we added Topomax to the mix and have gotten control again.  For how long we will never know, once again, we take one day at a time.

For ten years we spent seizure free and medicaiton free. During this time I couldn’t take things for granted. Tuberous sclerosis is a disease where nothing is normal and the unexpected should be suspected.  Education and preparation is the only defense against this damn disease.  Research held warning flags that seizures could creep back into our lives. It was on February 14, 2006 when we were slapped in the face.  Episodes that we had suspected to be seizures blew up out of control. My eleven year old son went into a seizure and didn’t come out for three hours in the emergency room.

Medication entered our lives again.  Keppra was selected. It worked for nearly eighteen months. During the summer of 2008, seizures returned. After a few months it was obvious that another medication would be needed. After just a week on Triliptal, skin rashes forced us to switch to Topomax. This medicaiton is what finally brought back some calm into our lives.

August 2008 through February 2009, seizures were a daily event. At school or at home, it became to be the norm. During this time, my son never shrunk from attending school. He bravely faced crowds of kids who had witnessed seizure activity with the utmost dignity. I can’t say that I’d have the same courage.  But, as his mother, it is my job to help him be that brave. I can love, support, and encourage him to face life on his terms. But my heart also aches for the level of difficulty he must live with.

My place is at my son’s side.  I bravely stand by him as he begins to slip into the goofyness that preceeds the deep painless sleep. Reluctantly I turn to walk away.  If prodical allowed, I would scrub up and take a place right by the doctor throughout the procedure. Unfortunately, mothers are not allowed. 

Knowledge that my son lies in a blissful slumber was my only comfort. Sitting helplessly, the second hand on my watch appeared to standstill. Waiting is pure torture. Evil minds continually attempt to devise cruel ways to torture other humans; when in fact, the medical profession has them topped.  Nervously, I squirm in my chair, fidgit with gadgets, praying that everything goes well.  Among the thoughts swirling in my head, that negativity always works its way in.  What if? What if? With every ounce of strength I can find, I push these out of my head. Waiting, worrying, hoping, and praying is all a mother can do.

Blue scrub garments rush back and forth across the open doorway, all look alike. As each blue blur flashes in the corner of my eye, I hope it is the doctor with good news. Waiting in a hospital for two hours feels like an eternity when they have your child sedated under the knife. Any medical procedure has its risks, certain procedures are considered routine, nothing is routine when its your child.

 Life is different for my family. eight days before my son’s first birthday he was diagnosed with tuberous sclerosis (TSC). My husband and I would spend the rest of our life educating the people about this disease. I guess when it comes to diseases we held the winning lottery ticket.  Our son could just have a simple disease that affected one organ, TSC can affect any and every vital organ. Tuberous means what it sounds like, tuber (like potatoes) like growths appear anywhere they want. Knowing this, preventative medical maintenance is key to helping our son have a long normal life.

Living with TSC, meant for us that we had to begin to understand the disease. Knowledge was our only defense for our son’s health and our own sanity. At a year old, we learned about every medical challenge that could affect him during the next two decades. Connecting with parents around the world, sharing stories only enabled us make the best medical decisions for our son. 

At eight, the first laser treatment on his angiofibromas. At ten, the second laser treatment on his angiofibromas. At eleven, the seizures returned.  At twelve, a tumor was embolizaed on his right kidney. At thirteen, the third laser treatment on his angiofibromas. This list will only grow longer with time. Taking one day at a time seems to be all we can do.