Our Story of epilepsy

You know that your baby isn’t hitting all of his developmental milestones. And when he crawls, he sometimes stops and tilts his head for a few seconds before crawling away.

Late one night/early in the morning, you’re up feeding the baby, now 9 months old, when he suddenly stiffens his arms and legs and holds still for about 10 seconds. Not that you remember the specifics because your mind is yelling, “What just happened?!” It was so brief, you want to dismiss it. But your gut tells you something’s not right.

You mention this at your next well-baby visit to the pediatrician. Who suggests you see a neurologist. Which you think is ridiculous.

You go to the “local” hospital, one at the university and not the local hospital in your town of 3,000. The university hospital has a neurologist who sees you a couple of times and then keeps you overnight on Labor Day after another episode of “stiffening.” Seeing your baby in a bed that looks more like a prison than a crib is somewhat horrifying. You don’t know it, but this is the first of many hospital visits that make you wonder if this is real life and that weighs you down with guilt, stress and worry.

After the overnight stay at the university hospital, your neurologist sends you to the city where there’s a bigger hospital and a more renowned neurologist. You used to work in that city, at a large health system, in fact, so you feel comfortable navigating the system and reassured that experts will finally figure out what’s going on with your son.

First visit: you’re told your son probably has epilepsy, and the doctor gives you a brochure and sends you home. You’ve been in hospital marketing and have created these brochures, which now feel like an insult. You sob the entire two-hour trip home.

And then you go back. Repeatedly. For three years. Overnight EEGs. Medicine you try for a couple of months only to switch to something else and start over because that medicine didn’t work. You have more tests. You have to hold him down, physically laying your body over his, so he can be sedated. Your heart breaks.

Despite what you’ve been through, or maybe in spite of it, you opt for epilepsy surgery. Oh, and you have a 3-month old. Who refuses a bottle.

The first surgery is postponed because he has a cold. So you go home, Lysol the house again and try to keep two small children well for another couple of weeks. Then, it’s surgery time. For two weeks, he goes in and out of the OR while the neurologist, who looks like Doogie Howser for those of a certain age, moves wires around on the surface of his brain, which aren’t removed until the very last surgery.

Yes, your 4-year-old has wires sticking out of his head. He also loves for you to sing before he goes into surgery (which you try to do without your voice catching), he loves hitting the automatic door opener into the OR (which makes the medial team laugh), and he enjoys hugging the nurses when he wakes up in the ICU (which they love).

You can’t believe you have such an amazing son. And such a wonderful doctor. The other doctors, who you’ve seen in the elevator, look at their feet when you enter. They know what you’re going through, and they know what you can’t and won’t see: there is no cure.

Once your eyes are opened to the unthinkable, your neurosurgeon offers you one last bit of hope. You don’t know what to do. Crying, rocking your baby (Did I mention she wouldn’t take a bottle and you are physically and mentally drained?), you beg him to tell you what he would do – even though you know doctors don’t like answering that question. You do it anyway. And he tells you.

You take his advice and send your son in for one last surgery. You nurse your baby under a blanket in the waiting room because hospital social workers don’t find you – or a private room to nurse – until two days before you leave. You then wait for your son’s surgeon, in the doorway of the waiting room, like always. He sees you waiting and hugs you, like always. Your son’s OK; time will tell.

You feel something like love for this person who has your child’s life in his hands. You sense he cares; that he sees you. And that doesn’t go unnoticed, because as the parent, no matter how much health care knowledge you have or think you have, you are invisible except to sign forms. But your doctor is smart: he knows you’re making the decisions, he knows that you know your child best, he knows your fears and your hopes, and he’s taken the time to earn your trust. He knows that a child is connected to his or her family and that by taking care of them all, he’s caring for the child.

You leave the hospital – without a cure – on what still feels like the happiest day of your life. A month goes by with no seizures. You think your prayer may have been answered. And it was … just not in the way you wanted. The good news: he’s no longer having up to 17 seizures a day, which your husband has literally charted in Excel in hopes of spotting a pattern or uncovering a clue. In fact, the seizures are so few you can drop one of his three medications. And then another.

And then you keep going, reading all you can about epilepsy and managing therapy and psychology appointments so that he can get the right services in school. You spend a lot of time at the pharmacy and with teachers. You manage it. YOU. Doctors don’t talk with therapists or teachers and vice versa. Each person is responsible for a different body part. A different function. What lives in one world is not connected to the next except without you: your time, your diligence, your research and your love.

You put one foot in front of the other. You take each day as it comes. You take nothing for granted. You stumble. And you still cry. And you makes mistakes, and you learn from them. And you promised to do better, to be better. For him … and also for yourself.

You learn that this may be your story, and although it broke you it doesn’t mean you can’t make yourself whole again, embrace the cracks and imperfection, let go of expectations and write the next chapter.

What I learned

  • Ask questions and be an advocate for yourself and/or your loved one. It doesn’t mean you’re being disrespectful. It means you’re a partner in finding solutions – and health.
  • Take notes. After appointments, your mind will be swimming and you’ll think you heard and remembered everything. You won’t. Take notes and look at them later with a loved one or health professional to make sure you understand what was said. If possible, bring a loved one with you to compare notes.
  • Seek out alternatives and trust your gut. You know yourself, your body and your loved ones better than anyone. Explore services and resources that can help them – and you. Don’t like what the doctor recommends? See what alternatives exist.
  • Remember, you’re lucky if you have access to health care and health insurance and the ability to make decisions about your own health and that of your loved ones. Many don’t have that option.
  • Remind yourself that no one is perfect. Mistakes will be made. By health care providers and by you. It’s OK.
  • Take care of yourself. You’ll think you’re strong and don’t need help. Get it anyway.
  • You may not want to talk about it because it only makes it more real. Do it anyway. There’s no shame in talking it out with a counselor or others with a shared experience.
  • You won’t always get the happy ending you want, but it will be OK. You just may have to redefine “OK.” Love endures.
  • A diagnosis WILL change you. And your family. Make it for the better.

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