Brittany's Story--
It has been nearly 9 years since Brittany was born. It has been 8 1/2 years since she had gotten sick. Yet, the story does not get easier to tell. The truth is that no person should have to endure such suffering. It was certainly the hardest time in my life. My whole world crumbled, all my dreams and hopes had died. To this day, when someone calls me because their child is having the seizures Brittany had (infantile spasms), my heart aches for them. They have no idea of the path they are headed down. They have no idea how their life as they know it is going to turn upside down.
I rarely tell our story. In fact, even in my lectures that I give and the support and networking groups I work with, I never go into the deep, deep agony that I truly felt. The first time, I gave a speech, I could barely talk. Now, I am able to hold it together and tell it with a smile. It could be acceptance, it could be healing, it could be that I have supressed all those hard feelings. But I feel it is important to share her story, for people to see the re-building, the re-structuring, the re-born person that I have become and the wonderful person that my daughter has become. There is hope, it just takes time.
At six months old, Brittany was diagnosed with infantile spasms, the worst form of epilepsy. It honestly just started like she was looking up. Thankfully, her pediatrician recognized the signs and recommended a neurologist. (Rule 1- don't take no for an answer). The neurologists receptionist told us she had an appointment for two weeks. We should go on our trip to Hershey as planned. It didn't sound right to me (Rule 2-always go with your gut feeling) so I called another neurologist. This neurologist told us to come in immediately. Within four hours, Brittany was hospitalized and place on steroids (ACTH). My baby blew up within a day, she wasn't acting like my baby. She just kept crying and wanted to eat. Here we are in shock, MRIs, EEGs, Catheters and so much more tubes. Quickly I learned that the responsibility fell on me (Rule #3-the mother is responsible) --I had to record what she was doing before the seizure, how long they lasted, how many times her eyes rolled, how long each cluster lasted. I literally bought a stop watch and kept track of what I could. I was exhausted, I was scared, it was so unreal. My baby was a pin cushion and an observation (Rule 4-don't go into a hospital in July unless you really have to. The new shift of interns come in and you are the freak at the circus). These interns would just come running in and instead of helping would just stare with their mouths open. I can remember driving home from the hospital one night, with the GooGoo Dolls Iris on the radio--"And I don't want the world to see me, cause I don't think that they'd understand, how everything is meant to be broken, I just want you to know who I am". That night, it took all the energy in the world to not put my foot down on the gas and speed out of control until I crashed. I was numb, I just walked around and was in a fog. I was home alone that night. My husband was sleeping in the hospital. I went on the computer and I researched. Just to discover that no matter how horrible I thought this was....it was a million times worse. Basically, she was going to be mentally retarded, non functioning and the seizures would never stop. We were destined to live in hospitals with her the rest of our lives. I laid on my bed that night and the tears for the first time started falling and they wouldn't stop. I screamed and screamed and begged G-d to please stop this nightmare. Please bring my baby back to me. I can still feel that pain of that night and the tears still come to my eyes. Finally, I started screaming, let me know you are there. Help me. And, a picture on my dresser of my family fell over. Now, I never was a believer of spirits being around (and I am not sure if I believe it now) but in my heart I know that my Aunt (who was in that pix and died) and my grandparents were there with me at that minute.
One more weird thing, is that I had a dream while I was pregnant with Brittany that something was going to be wrong with her. And, I know no one would believe me but thankfully I had called my girlfriend crying that day and told her my dream and my weird day. Otherwise, no one would have believed me. I know that. I had this horrible dream that she was sick, my grandmother was with her and my Aunt (both who are passed). I jumped up very shaken by the dream but I went on with my day. I had a doctor appointment that day. As I was driving on the Expressway, there was a bus of kids with disabilities next to me. As I pulled off the exit, there was another bus with kids with disabilities. I was freaking. The topper was when I went to the Y that day, there was some kind of Downs Syndrome event and then at the supermarket, I had another encounter. I called my girlfriend, hysterical. I guess I knew that day and it was tucked away in my subconscious.
Back to the story--after two weeks, we finally left the hospital. While there, I started to learn the ropes quickly. (Rule #5-With a smile, let them know how it is going to be) A lion protecting her cubs. I learned how to make them schedule tests better, that there was no reason for a catheter and if they wanted blood--a person had one shot and they better be a pro at taking blood from an infant. The seizures now were uncontrollable. I slept leaning against her crib for nights on end. I had to learn how to give my baby a shot everyday and take her blood pressure 6 times a day. I was injecting this steroid poison into my daughter's body and watched as I turned her into a zombie. Each day, each shot, I lost her more and more. Until all she did was stare, rock and have seizures. This had to be hell! All she did was rock and cry. All I wanted her to do was smile at me and acknowledge that she knew me. she had to be somewhere inside there.
The next three months, were a blur. I was destroyed, I was lost, I went through the motions. In and out of hospitals (for a year). Never knowing when an emergency was going to surface. Friends and family were always on call for that late night--someone come get my son. Many nights we just threw everyone into the car and my parents would pick my son up at the Emergency Room. The pressure and decision was all on me--when were the seizures so bad that I had to take her to the hospital. The whole responsibility was on my shoulders.
I remember looking in the mirror one day and actually not recognizing the person who stared back. I was an empty shell. I would walk in the supermarket and just walk. Thinking, do these people know I have died. After the initial shock (three months about). I began to put the pieces slowly back together.
Before all this happened, I was a very strong woman. I was actually an Account Executive selling radio time, I owned my own publications, I felt I was invinsible. I always thought if you worked hard enough you could reach any goals. At least, that is truly what I had always believed. But it was now killing me because for the first time in my life, I couldn't fix something or strive for something. I remember the day that I looked out the window and I decided that I was going to fight. I am determined, stubborn, Type A personality who always strived for perfection. I was going to take on this fight. I was going to try and re-build me. I was going to make my daughter the best that she could be and I would keep going until I got her better.
Continued --Part 2- Brittany's Story-The Long Road
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