Our lives change: Forever
By: Anise Marshall
Shannon is a warrior and is the reason behind this month’s blog. Writing and creatively directing book 2, A Sister with A Disability Is A Sister with A Superpower, from The Sister Keepers book series, has given me reason to celebrate. I’m not only celebrating the debut of book 2, I’m celebrating her story. Her struggle made her such an amazing child. She says more with her scilence than most do with their words. Shannon has Static Encephalopathy, Speech Apraxia and Epilepsy. She is 3 years old now. I've known since she was about 10 months old that she suffered from epilepsy, but it was not until I moved to Texas that it was diagnosed.
I lived in Southern Illinois for many years. When I gave birth to Shannon, our family felt so complete! When she was about 6 months old, though, we had started to notice that something was off. She wouldn't crawl, babble or even smile/ laugh. I brought up my concerns to the Dr. every time I got the chance. The pediatrician always reassured me that everything was fine. I knew in my heart, that I needed to advocate for my daughter. As she grew older, I noticed that she still hadn't progressed. I spoke to the school to provide her some kind of service in which they were able to get Shannon a speech therapist around 10 months of age.
When she had made 1, I would notice that my daughter would often seem confused and irritable. This usually happened after starring spells, which happened most of the day. It was almost like she was not mentally present. She was so serious and almost trapped, it appeared. A little after her first birthday, my daughter had gotten a little cold. I had noticed that her starring spells had increased and she would even shake a little and drool profusely. I was told, again, that she was fine. The next week, my daughter had a full-blown seizure. 3 of them. Back to back, while I held her in my arms. Her eyes rolled back and her body shook frenziedly. I remember being in such shock and not knowing what to do except to rush her to the hospital.
Once I arrived, she had convulsed again, this time in front of the staff at the hospital. Even though her temperature was only 100.1, they diagnosed it as a febrile seizure. I had heard of those before. I however, did not think this was what my child had. Her temperature was not high enough and her reaction afterwards was exactly what I had been seeing when she wasn't ill. They gave her fluids and my daughter was "fine," after about 3 hours, according to staff. I took my daughter home and still told myself, something else is going on. I did this for almost another year. My daughter was now on her second birthday and not verbal at ALL. The only thing she could say, was “up.” That was a word she would often use because she was terrified almost ALWAYS. She still had never laughed.
One day in early March 2016, my daughter went to school while myself and another of my children lay home, ill, with the flu. I received a phone call from my daughter’s daycare. I will never forget the conversation…
Daycare: "Anise. We have an emergency. While Shannon was waking from her nap, she suffered an awfully long seizure. She collapsed and has been convulsing for the last 10 minutes. We have rescue here right now, and they are trying to stop the seizures. Right now, she is unconscious and that is all we know. Please hurry here."
I got dressed. Quick. I couldn't stop shaking or crying. I don’t even remember hanging up the phone. I had to get my other daughter, who also had the flu, up and dressed. I asked a neighbor for a ride to the daycare. It was the longest 5 minutes I had ever experienced.
When I arrived at the school, all I saw was an ambulance and people scrambling around the front door. I ran inside and collapsed when I saw the EMT standing over my daughter trying to listen for a heartbeat and wake her up. I crawled closer because I was too weak to stand. I could feel my heart beating, sweat dripping down my collar bone and taste the salty warm tears that wouldn't stop falling.
I remember teachers and staff standing around crying. Once I got close enough, I saw my daughter laying there. unconscious. Her body was stiff…her toes were pointed. I screamed in shock. Two ladies help me up to my feet and embraced me. It was then that I saw her take a breath and then look in my direction. She was awake, I thought! Then, she started to jerk again. They placed the oxygen mask over her face, turned her to her side and then checked for a heartbeat. They then rushed her out of the school and into the ambulance.
Two others scurried me to the front seat of the ambulance and informed me that she was losing oxygen and they were probably going to need to do chest compressions. I don't remember the rest of the ride. I was in and out of a haze. I do, however, remember arriving to the hospital. They rushed her to the back and somehow got her stabilized with her breathing.
Her little body still laid stiff…. but, her eyes were open and fixated on me. They let me through and I held her, still unbending, body in my arms. The doctors told me that this was happening because it is the body's natural reaction after a seizure that lasted so long. They also informed me that she was a strong child to be able to wake up from such a time-consuming seizure on her own.
I put a mask on, informed the doctors that I had the flu and they checked Shannon to see if this may have been what she had and triggered everything. She had, in fact, caught the flu as well. Her temperature was at 102 but, in my opinion, still not high enough to cause a seizure that had lasted for so long. They were eventually able to stabilize her and we stayed in the hospital for several days.
Once we got her temperature down, on day three, the staff FINALLY noticed that she had continued to have seizures. I informed them that she had been having them for almost a year but no one believed me. They ordered testing and finally believed me! It only took them an entire 2 years...
About a week later, we went in for an EEG. While in testing, the person performing the test, myself and my husband saw my daughter have a few seizures. We just knew someone would do something about it after that. I got a call back two days later saying her results were...NORMAL!
Me: "How? I saw her have a seizure in the middle of the test? I don't want this to be the truth, but I know there is something wrong! You have to do something."
Doctor: What do you want us to do? The test is normal.
Me: I want a second opinion.
I scheduled a visit for a team of doctors in Saint Louis. Shannon had several evaluations and was seen by a team of doctors. They hadn't even seen the EEG tests and had already determined that there was in FACT something going on. We were scheduled to get some testing done, but my husband was offered a Job in Texas and he took it! I had heard great things about the doctors there and determined that this would be the best thing for my daughters and their health. Not even a week after arriving in Texas, we had already had a neurologist and an EEG scheduled. Within 2 days of the test, I got a call and was told to come in.
Neurologist: It looks like there is something going on here and we are going to take care of it. Let's set some goals and get your baby back.
Me: *breaks down crying* THANK YOU! Thank you for taking this seriously. I knew I wasn't supposed to give up. I knew I was sent here for a reason.
Neurologist: *fights back tears with a shaky voice* She is the reason I do what I DO.
Of course, there is so much more that has happened since this day (the first time I ever heard my daughter laugh/50 seizures a day being brought down significantly/ recognizing her father and saying da-e`). She has also learned a bit of sign language and can now say about 10 words if prompted.
The purpose of sharing this? The purpose is to remind yourself to keep going. Keep advocating for your children. Did I want my daughter to have this diagnosis? NO. Did I want answers and help her live her best life? YES! Would I do it over? YES. It has taught me so much about myself and my family. The purpose of your struggle and the ones you love are sometimes intended to help someone else. Right now, I am sharing Shannon’s story to help someone else.
Book 2 is dedicated to Shannon and the little warriors that live with disabilities. Make sure you purchase book 2 and a portion of the money from the sales will be donated to an epilepsy foundation. CLICK the link below.