I have so many questions that you cannot answer. I sit here with you and watch you sleep, quiet and peaceful after yet another seizure. What does a seizure feel like? Do you have a headache? Is your stomach upset? Is that why you won’t eat? Are you sad, tired, confused? Sometimes your eyes seem to say “What was that?” or I fear they say, “Why did you do that to me?” As if it was I who snuck up on you and tried to cause you harm. You seem so devastatingly tired. Terribly pale, you open your eyes only to let your heavy lids drift close as if it just takes too much energy to keep them open.
What is going on? Why have your seizures more that doubled in the last month? You’ve had one on each of the last two mornings. I’ve called the doctor. He wants me to increase your medication. Is that the right thing to do? Do you need more of the medication that you have been on for so many years? Or, is something else causing this increase in seizure activity? Is the change in schedules and caregivers lately causing these seizures? Is the change of the seasons affecting some biological clock that is having trouble resetting itself? You seem to welcome new experiences and people into your life. Yet it often seems that changes cause seizures. Remember when we all went to the shore a few years ago? You had four seizures that week. Now, we’re afraid to take you on vacation. New sights, new smells, new surroundings – they’re something we want to give you, but will we do you injury?
The noise that you fill our home with often makes it hard to think. But the quiet that lingers now makes it all too easy to think, to worry, to wonder. How much do you understand? What can I do to make you feel better? I did some shopping today. I found a Mother’s Day present for Grandma. I wanted to bring you something, anything, to cheer you, make you smile. But material things hold no favor with you, and a treat would not impress you right now. So I end up buying something that I want you to have – a bright pink shirt. It looks happy, even if you are not.
You know that I love you, right? I used to hold you, cuddle you in my lap when you were small. I would hold you and rock for hours. I wish I could pick you up, let you rest your tired head on my shoulder, let you feel my arms hold you safe. But I have to content myself with stroking your cheek and planting a soft kiss there. Your eyes flicker open but they do not smile. Neither do mine. I wish I could spare you these unpredictable storms that leave you washed out and struggling to recover. But I cannot. All I can really do is try to make you comfortable, let you rest, and hope that I know the correct answer to at least one unanswered question – you know that I love you, right?