When I think of medications, I think of all the successful treatments that stem from them. For example,lowering high blood pressure, preventing or stopping migraines, fighting depression, fighting infections, treatment for cancer and the list goes on forever. It is, indeed, a wonderful thing that we are able to treat so many maladies and improve our lifes. But on the other hand, there is a cost to medications…the side effects.
The treatment of Meghan’s seizures is a double edged sword which effects her every minute of every day. Meghan wakes up most mornings and is so cheerful. I can remember her being in her crib and jumping up and down when she awoke as I entered the room and saying, “it’s a beautiful day, it’s a beautiful day!” She always had such a bright smile on her face and still does most days. I love that memory! Meghan takes 15 pills each day throughout the day. These medications effect her from the time she gets up, and even when she falls asleep. I feel we are playing Russian Roulette each day.
Most seizure drugs cause tiredness, foginess, dizziness, and sleepiness. We start each morning with a huge breakfast to off-set the side effects. Friends are amazed at what she eats in the mornings. We have our “appetizers” which consist of dry cereal, yogurt, banana, and a glass of orange juice. Then, we follow-up with the “main entree” of pancakes or waffles with blueberries and syrup, a side of bacon or sausage and eggs. Then it is time for meds. Meghan takes five pills in the morning and the fun begins…will she get sleepy, fall asleep, or only have tiredness Sometimes, Meghan takes her meds between “appetizer and entree” and it is “Katie, bar the door.” It impacts her to the point that she has a fork full of food and falls asleep.
We never know how side effects will impact her but that isn’t the hard part. It is going forward with the day. Meghan wears a helmet when she gets up from the couch or bed to protect her head if she falls or have seizures. Most mornings, Meghan isn’t allowed to walk independently because she is unsteady or just plain staggering dizzy. It is hard to plan her day if we are going out. We never know whether she will be able to walk. There have been times that I have slung her arm over my shoulder, wrapped my arm around her waist and walked her to the truck to go out. Most appointments are scheduled at 1:00 or later, if possible. This is limiting to her life…she doesn’t have a normal life or even close.
The afternoons are the best time of the day for Meghan. Her dizziness is mostly gone and she is able to walk and enjoy herself although some days she is extremely tired. Today, was a great day in that she wanted to go to our neighbor’s pool. She floated around on a mesh raft, and then looked for butterflies to capture. When we got home, and we started getting out of our swimsuits, Meghan had a seizure. My worst fear is a seizure in a pool so we were lucky. I was tying her pants when she jerked back with a seizure. She fell against the couch and was disoriented and laid there for a while. This is the pattern we seem to follow when we go outside…it increases the risk of a seizure. I have no idea why nor does the neurological team have an explanation. I just had a funny feeling, a premonition that she was going to have a seizure this afternoon….strange isn’t it?
The early evening meds are less of an impact on her system although today, she was tired after taking her them…maybe the seizure this afternoon effected her more. It saddens me to watch her sitting there staring, or feeling too tired to do anything. I feel helpless and frustrated. Bed-time meds are easy, she falls asleep although I walk her to her bed.
I cannot describe how it feels to be constantly hypervigilant, on guard for a possible seizure or fall. How to keep her safe and yet provide some activities outside the home that are meaningful. I am thankful that Meghan loves workbooks with activities to occupy herself, reading and SpongeBob! What would life be without Nick, Wheel of Fortune, and Jeopardy?!!
Why am I sharing this? Why am I feeling melancholy? It seems with the increase of fanatic political ads, disparaging comments about those who receive welfare or medicaid on Facebook, I grieve even more for her loss of a “normal” life. My daughter is real, has a face, heart and gives joy. It breaks my heart that people begrudge those who need help from the system… My friends explain, “we are not saying that about Meghan!” But I don’t know that, and what about other mothers of children with disabilities—-although they are adults—does it hurt any less? Do the comments make an exception for those “who really need it” Does it make us feel any better about the attitude toward “welfare”? Will there be a society who feels she is disposible or worth the costs of medications? My greatest fear is when I am no longer here to fight for her, who will protect her and love her?