I recognize that look in your eyes. It’s a mix of terror, despair, confusion and maybe a little bit of hope that this is all just a bad dream. Maybe you are still in the hospital waiting helplessly while the doctors try to stop the seizures. Maybe you are feeling broken having just received your child’s diagnosis. Maybe you are ready to curl into a ball and hide because it all feels so overwhelming. I’ve been there. I’m still there sometimes.
When my daughter started seizing, the world turned upside down. When we finally received her diagnosis of PCDH-19 Epilepsy, I broke. I felt alone and scared and confused. I didn’t know what to do or who to turn to. At this point, we seem to have settled into our new normal so I’m sharing a few of the things I wish someone had been there to tell me.
1. You are not alone.
I know you feel alone. I know that it seems like no one understands. Many of us who have been on this road for a while understand the terror and we are ready to walk beside you. You can find us through your hospital’s social workers, online groups or Parent to Parent. We want to be there for you. I found a group of parents on Facebook who have children with my daughter’s disorder and they have been the ones to pull me through some of the darkest moments.
2. Build your team.
The old adage about needing a village to raise a child will become especially true. There will be doctors, nurses, therapists, and social workers. (You’ll notice that I wrote every one of those in the plural. That was on purpose.) The relationship with your child’s teachers or babysitters will grow to a whole new level. Take the time to talk with your team until you have your questions answered. Research the professionals you are going to work with because having a great therapists / doctor / whatever you need can make a world of difference if your child’s progress.
3. Ignore the idiots.
People will tell you that they know what it’s like because their dog had a seizure. People will tell you that garlic or lemons or copper bracelets cured epilepsy for their father’s cousin’s friend’s co-worker. In my experience it is better to roll your eyes than punch them in the nose.
You can also expect people to think that your crisis is over if they see you at WalMart and your child is not currently having a seizure. Realize that most people just don’t know the facts about epilepsy. You can educate them if you choose but don’t feel guilty if you need to simply walk away. It can also help to ask a friend to keep people informed so that the burden doesn’t fall entirely on your shoulders.
4. Be who you are.
It’s easy to look at those “super moms” who seem to have it all together. They balance all of their child’s special needs with their hair in place and advocate tirelessly without messing up their makeup. I am not one of those moms. My hair is never in place, my mascara is usually smudged and I am not always the most diplomatic person. I used to alternate between feeling guilty for not being them and being angry at them for making me feel guilty. Now, I’ve realized that most of them aren’t quite as perfect as I thought.
I also learned that many people cope with their child’s epilepsy by advocating. If that’s you, perfect. Write letters. Demand action. Go on fund raising walks. All of those are great things to pour your energy / anxiety into. If raising awareness or funding research helps you cope, then go for it. If you are the mom that focuses solely on your own child and getting her or him the best care possible, that’s ok too. If you don’t want to share your story, you don’t have to. Work on finding a way to battle epilepsy that fits for you and your family. The last thing you need to do right now is try to fit into someone else’s model of what a “good” epilepsy mom looks like. You have enough on your plate already.
5. Understand that your friends may change.
Sometimes the people who you thought would be there through thick and thin disappear because seizures are scary. Sometimes people step up in ways you never imagined. Your life has changed now and because of that so will many of your friendships. Mourn the ones you lose but don’t spend too much time being bitter. You have bigger battles to fight than that.
6. Keep going.
Treating epilepsy is complicated. Your child may need to be seen by multiple specialist and they may not be able to get the seizures under control immediately. Don’t give up hope when the first medications don’t work or the second or third. About 70% of people with epilepsy are able to control the seizures with medications but it often takes time to find the right drug or combination of treatments. It can also take time for the doctors to diagnose the exact cause of your child’s epilepsy which can greatly impact the prognosis and course of treatment. Many people never get an explanation but with time are able to find treatments that help.
7. Trust Your Gut
Researchers have made incredible advances in the treatment and diagnosis of epilepsy but this is not an exact science. You may be asked to weigh terrifying side effects of harsh medications against the unknown costs of waiting or non-medication interventions like surgery or ketogenic diets. Do your research and ask questions until they are answered. When you are not in crisis, take the time to figure out what treatment(s) makes the most sense for your child and family and feel right for you.
Also understand that epilepsy is more than seizures. It can impact motor, speech, cognition and behavior. If you think that your child is acting different, don’t be afraid to tell the doctors. If you think something might be related, speak up. Through it all, trust your intuition. When something feels off, pay attention. You know your child better than anyone else. That is a knowledge set that the best specialist on the planet doesn’t have. Never doubt its value.
Or scream or laugh or punch a wall. Epilepsy sucks. This monster just invaded your family and is attacking your child. Fall apart for a little while. The world won’t end if you do. If it hasn’t happened yet, know that the day is coming when you break down sobbing at a completely inappropriate time or your reaction to a small annoyance is entirely out of proportion. Finding a way to let some steam off along the way might prevent you from dissolving into a puddle of tears when the gas station clerk asks how you are doing.
Whatever you need to do to be ok, do it. It may feel selfish to leave your child right now just so that you can get a manicure. It’s not. Your child needs you to take a break so that you can come back refreshed enough to be the advocate they need right now. Parenting a child with special needs is absolutely exhausting.
10. Know that you will change.
You will never again be the parent, or the person, that you were before your child started seizing. Every jerky movement will trigger something terrifying in your brain that other parents simply cannot understand. Small joys like bubble baths will suddenly look like watery graves. There will be good changes too though. You will find that you can fight harder than you ever thought you could. You will figure out what in life really matters.
I know you didn’t want this. I know that you’re scared. Believe me when I tell you that the sun will come back out at some point. So, give yourself some grace, reach out to the mamas who have gone before you, hug your baby and just keep swimming.
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