Well I made it through the week and what a stressful week it was. Amber had another seizure on Tuesday morning. It was a normal day, the kids were getting ready for school and I had just gotten out of the shower. All of a sudden, I heard a loud thud and a moan, followed by Patrick screaming for me that Amber was having a seizure. I threw on my robe and ran to the hall bathroom to find my daughter on the floor in the middle of a seizure. Terrified, I yelled for my son to call his dad and begged him to come back home saying, "I need you, and I'm scared... I can't do this by myself again" Robert, being the calm one, told me to just make sure she was breathing OK and stay with her until the seizure stopped and make sure she was breathing. When she stopped convulsing, I made sure she was breathing, wiped her mouth and stayed with her until she came out of it. Once she was awake and alert, I explained that she had another seizure and we took her to bed. I asked her a series of questions and knew she was not fully aware of things because she couldn't remember what happened the night before. I left her to sleep and was at peace knowing she was in bed asleep. Later when she got up to go to the bathroom, I told her not to lock the door and it seemed like eternity while she was on the other side of that door. I kept hoping I didn't hear that sound of her falling again. I can't explain how terrifying the days and weeks following a seizure are for me. Every sound, bang, thud, yell sends me into a panic.
Wednesday morning I took her for lab work and didn't get the results until Thursday morning. Not the news I wanted to hear. Her med levels were normal. This is only her third seizure in the last 3 years but the last two were because she wasn't taking her medicine the way she was supposed to. At least with that we knew that as long as she took her meds the correct way, we could prevent seizures. To know that her levels are normal and she still had a seizure is scary for me because it means she can have another one at any time. Her last seizure was in November and the one before that was three years ago.
Friday morning I took her to the doctor and he explained that A. her levels may have been low but because her test was takent he day after the seizure and 3 doses of medicine were already in her system, her levels could have gone up and showed normal on the test or B. her body has grown immune to the medicine. Dr. decided to add another medicine to her current prescription. This new medicine is supposed to be good and he thinks she'll benefit from it. The side effects: tiredness and dizziness. Great! Lets add some sleepiness to her already sleepy state.
Since Tuesday, I have held in the urge to bust out crying from my frustration, saddness and fear. I feel I have to be strong so I don't upset not only Amber but Patrick as well. For a 9 year old, he worries so much about things, especially his sisters. When I am alone, I can't help but cry and pray that we don't experience another seizure. I can't seem to get the image of my beautiful daughter lying on the floor helpless. After her first seizure, I had that image in my head for a long time and had erased it from my mind when she had her second one in November. I was still getting over that one and starting to relax a little when this one hit.
I don't know what's harder, living with the fear of another seizure or seeing my beautiful happy 21 year old, slip into a depressed state because she is so tired of having a disorder that prevents her from doing things that others her age take for granted. I am a mom who lives for my kids and worry about them all the time but especially now, am terrified to be away from my daughter...terrified every time she takes a shower. Today was her first day back to work and I called her several times to make sure she was OK. She sounds so tired and sad! For now, I feel good knowing she is home, in bed and safe. For now, I have a sense of security because it's the week-end and I am not alone. I will take that and enjoy every moment of it because come Monday, Robert goes back to work and Amber goes back to school and the fear starts all over again.
I am praying that the Will of God will one day free her of her seizures and allow her to live a normal life she wants and deserves.
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