December, 1991
Dear MaryJanes,
On a hot summer day, when you were just 2 years old, we were standing outside of my folks house, when out of the blue you said, "it had pizza on it". This made no sense as we weren't talking about anything at that moment. Then your eyes rolled back into your head and you looked very flush. I assumed this was all related to the heat of the sun and humility. Two years later when you were four, I was putting your hair into braids, your eyes once again rolled back and then you slide down my leg onto the floor. At that point you passed out for a brief second. You had been standing in direct sunlight and it was a hot day so I dismissed this as heat and sun related. But on this occasion I noted was that your left arm twitched a couple of times. This scared me, but because my side of the family has sun sensitivity issues, I was fairly sure that all related. At the age of six, same scenario, It was a hot summer day, and you passed out and once again your left arm twitched a couple of times. I took you to see your doctor. He could not see anything out of the ordinary and agreed that the heat probably played a roll in these episodes.
It wasn't until a night that I let you sleep with me, that I found out the reason for those events.
You don't normally sleep in bed with me, but it was a cold night and I made the suggestion that it would be cozy to have you sleep in my bed. We got your Pj's an and we headed for bed. Very late in the night, about 3 am, I was woken by your sudden movements. I was sure you must be having a bad dream. I try to wake you, and tell you it was OK. But you kept shaking. Something was wrong. I lift you up into my arms and you are jerking. I carry you into the dinning room and grab the phone. The phone has issues and isn't always reliable as it has a short in the cord. I grab the phone book to search for the emergency room number. You continue to shake your whole left side. I dial the number and the phone cord shorts out, I try again, and again. I am trying to hold you and tell you it will be ok and I can't get the stupid phone to work. I scream for MarySue but she is a sound sleeper and doesn't hear me. I scream again. Finally the I hear ringing on the line, and a voice. I tell them I need an ambulance quickly. They assure me one will be on the way and I hang up. Your shaking slows and you talk to me. I tell you it will be ok and that we are getting help. I adjust and move you and notice your left arm and leg aren't moving with the rest of you. You are groggy, but awake. I ask you to move your left arm, nothing. I ask you to move your left leg, once again nothing. "Can you move your left hand fingers MaryJanes?" I ask. Why is your left side paralyzed? MarySue makes it upstairs and I tell her what has happened. I tell her a ambulance is on it's way...where is it? I call my sister, but Roy {my brother in law} answers. He tells me that she is out of town. I tell him I am sorry for waking him and explain what has happened. I wish my sister was home, I really need her. It takes forever for the ambulance to arrive. I ask MS to call the farm where I was to go and do morning chores, "tell them I won't be in" I instruct her. I then ask her to call your father and tell him that I am taking you into the emergency room. Nearly a half hour later the ambulance arrives. I now know why it took so long, one of the crew is a customer at the veterinary clinic where I work. She has 3 dogs, none of which move too fast a mirror to their owner! I am angry, as I suspect she feed and let them outside before arriving. I bite my tongue, but I am so angry and upset for their delay. I ask the woman why you are not able to move your left side. She said I will have to wait and ask the doctor. My mind wanders to the thought of you in a wheel chair.
This fear does not compare to anything that I have ever experienced. I have had my share of fear in my life, yet I could combine all of my lives scary happenings into one ball and this would far exceed any fear that I have ever lived through.
Once at the hospital your left side regains movement. Roy walks into the room and I feel better with family there. It was sweet of him to meet us there. I feel myself relax with him there. The doctor tells me you have had a seizure. The lose of the left side was due to the stress that your body had gone through. Almost like your body was in shock. They want you to remain there for awhile to observe you. Your father walks in the door, and I tell him what has happened. I can see that he was worried about you. And I am angry with him. We should have been living together as a family and leaned on each other for support through this whole night. He should have been there to dial the phone while I comforted you. I don't waste too much time thinking about this as you are my concern and I just want to know what to expect from all of this. The doctor tells me to make an appointment with a neurologist.
I would give anything to change what might be going on inside of your brain to cause this. My mind scans my pregnancy for any clues, I don't drink, I don't smoke, I don't do drug, but I was sick the whole 10 months. Stress, I was in allot of stress, did that do this? Was it because your father drank and did some drugs? I need to know if I am to blame. I need some where to go with all of my questions. I call that day and get an appointment set up. They will do an EEG on you.
After this is done we wait, I bite my nails and have a million thoughts going through my mind.
The doctor calls us in. He asks me if you are a bright child. I tell him yes, that you tested in the gifted and talented at your kindergarten screening...."why" I ask. He said, "your daughter has benign childhood epilepsy." He shows me the print out of your brain waves and tells me that he sees certain patterns and spikes which help to identify the syndrome. "She will outgrow it." Those are the words that I covet!
Image By: Irenesuchocki
He tells me that the wiring in your brain some times is miss directed and for some reason, children that have this are usually very intelligent. So there is a bright side to this bad news and the best news is that you will out grow this. I am so thankful for that. The doctor wants to start you on a very low dose of epilepsy medicine. He also wants to do a few follow up EEG tests in the future. He tells me that this should not interfere with your life, and that you may never have another seizure again. That's what I am hoping for because there is nothing worse than a mother seeing her child in pain or distress and not being able to fix it. I know that we are one of the lucky ones and that many people don't get to hear the words, {temporary}when used with epilepsy. I feel truly grateful. I love you more than my own life and want nothing but the best for you.
Now Rest Your Worries.
Love, Galoshes
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