To my fellow LGS moms and dads:
“I am strong. So are you. I am a survivor. So are you.”
Words were so empty in the beginning days of my grief. No one had the magic words that made everything better. You have no idea how much those words have come to mean to me over time. Life as a young mom moved so fast. Raising four boys and being a single mom to kids with special needs certainly didn’t slow it down any. Life holds many surprises but mine seemed to be playing out a series of tragic events – one after another. I kept thinking, “This is the last lesson, right?” During the most difficult days, the love I have for my children was the glue that held me together. I was searching for the positive outcome but it seemed like the more I fought, my lessons only got harder. At home were Brian, age 10 and Eric 9. Then in September 1995 I had my third son, Matthew and in 1998 brought the addition of my fourth son, Jacob. I loved my perfect family!
Immediately following Matthew’s birth, my mother's instinct was telling me something was terribly wrong. I had no idea what to expect as I started to question Matthew’s "episodes" that I was witnessing. After I insisted on an evaluation by the “experts”, we were given a generic diagnosis of seizures. Today, I believe that Infantile Spasms was the true diagnosis. With infantile spasms having never being properly treated, his diagnosis evolved into Lennox Gastaut syndrome. Everyone in the home knew how to react to the multiple tonic-clonic seizures that we expected daily. Seizure-free days were heaven not only for Matt but also for the whole family. I thought learning to live with the unpredictability of seizures and seeking a cure for Matt was the hardest thing I was to face as a mom. Years later, my oldest son, 16 at the time, made the most common mistake of all and fell asleep at the wheel of his car. The accident left him with a complete spinal cord injury; a high school athlete faced with never walking again. I wasn’t sure he wouldn’t give up on life but I don’t think I have ever heard him complain. He is truly my inspiration.
I will never forget the next moment of heart wrenching pain that came 5 years later. It was Eric’s sophomore year, he was a psychology major – wanting to change the world before he even hit 20 years old. My world stopped that cold night in December when two police officers came to my door instead of Eric arriving home to celebrate his birthday and Christmas break. My heart shattered as they spoke. They were at my house asking questions and not giving much detail. But my heart already knew. Eric had been involved in a car accident and I would never again hear my son’s voice, give him hugs or say goodbye. How is it fair that Eric had suffered fatal injuries and his passion for change in the world would never be realized? My world turned grey and every day I woke to the same thing, missing Eric and the feeling that my shattered heart would never heal.
Learning to live my “new normal” was difficult as Matt’s seizures only increased and became more severe. We tried every drug available, in every possible combination and dose. With no options left, brain surgery would hopefully provide relief for Matthew and stop the seizures that only got worse with each passing day. Brain surgery gave us a short break in the seizures. Twenty days seizure free!
But then, the seizures returned. Every night, I would crawl into bed next to Matt so he could get a bit of sleep before the seizures started for that night. I wanted my hand on him to feel him as he breathed, be immediately able to intervene and stop the next seizure. While lying there resting, I closed my eyes only to plead, beg and cry for miracles for my family. Unfortunately, life had others plans. My youngest son Jacob was diagnosed with Ewings Sarcoma, a bone cancer that does not have the best outcomes. The treatment plan was put in motion immediately.
Jacob, quite a trooper, defied all the odds and chemotherapy was successful. He won a battle I was told we had no hope of winning. Today, Jacob is a 6.5 year cancer survivor. Things were finally looking up! Maybe just maybe, I would be granted two miracles? Instead, the plan was for LGS, seizures and SUDEP to take my child. Matt passed on September 13th, 2013 from Sudden Unexpected Death in Epilepsy. How could this happen? How could one parent feel the pain of a broken heart twice in her lifetime? Life was feeling like a series of unbelievably bad jokes that just kept coming. I had everything under control, did my research, asked every question and made every call I could. I even put every preventative measures in place that I could think of to stop this from happening. I had no choice but to look up and ask, REALLY?
All these events, as horrible as they seem, including the ones that my fellow LGS moms and dads have experienced have actually given us the gift of growth. Finding your way is one of the most valuable lessons in life. The lessons taught me that I am strong. So are you; I am a survivor. So are you; I am proud of the work I have done to be standing here today. So should you; I can fight when I have to but I don’t have to fight all the time. Neither do you; I had to accept that ultimately in life we are not in control – a power greater than you or I has the final say. Given the option to change anything, I wouldn’t. My heart was shattered the day my children went before me but I believe that all the difficult moments I have survived have led me to my purpose of being an example for others. I am here to fight beside you. You can overcome anything life asks you to face, you can stand strong and believe in a positive outcome, and you can believe that the darkest moments just might bring the brightest light to not only your life but the people’s lives you touch”. Today, I am simply here as a mom, a supporter in your fight of finding the best for your loved one. I am no expert, but I can share my experiences and encourage you to make that call, ask that question and never give up hope for the best outcome, even if it means accepting an outcome that doesn’t appear to be everything you asked for. Through helping you, I get the amazing gift of putting my heart back together piece by piece. So thank you for allowing me to know you, to feel the emotion of your walk and know that I share in your passion.If you are still reading, I have to say the most important thing is that you know deep down, the bond of Love is truly never broken, its lasts through even death. Love is the cord that connects our souls. It can never be severed. It’s the best lesson that my children have taught me! I could only have learned this by them going before me. Please, love each other, don’t be scared of what you face, be proactive, ask for help from others along the way, put everything in place you can and then please do one thing for me and my children….LIVE and ENJOY every day!
Reprinted with permission from the Author from: http://www.childneurologyfoundation.org/disorders/lgs-lennox-gastaut-syndrome/