A metro Detroit mom shares her experience raising a child with epilepsy and what she’s learned along the way.
On a warm summer evening, Max was riding his scooter. Out of nowhere he stopped. I assumed he was messing around again, trying to test me to see what I’d do. Once I got closer, I saw he was having a seizure.
Meet my friend, Elizabeth Raetz. She is the mother to two incredible kiddos, Max and Maddie. Max is 9 years old and he was diagnosed with epilepsy, and later Lennox-Gastaut syndrome — intractable, mixed seizure disorder. To know Max, is to love him. If you ask anyone about Max, they immediately smile and begin listing attributes like: joyful, kind, hilarious, social, thoughtful, brave, positive, and a lover of life. Though Max is 9 years old, his spirit is that of a wiser soul.
Recently, I had the pleasure of sitting down with Elizabeth to talk about her journey and what it means to raise a child who has epilepsy. We talked about what daily life looks like, Max’s specific diagnosis and prognosis, and most importantly, the insights she’s gained. Though Elizabeth’s story may seem unique, there were moments during our conversation when I completely related and considered the challenges to be universal among many parents.
When was Max diagnosed with epilepsy and how did that unfold?
Max was diagnosed with epilepsy in March of 2016. He was almost 5 years old at the time. My mom, who is very close to Max, was his preschool teacher. For about a week, she noticed Max did not seem like himself. He seemed lethargic and tired. He wasn’t attending to things like he usually would. That following weekend, he fell down the stairs and landed flat on his back. Immediately, my mom instinct kicked in. Something didn’t feel right. The following week his symptoms continued, and my mom noticed he was the same at school. We were getting ready to go to Frankenmuth the next weekend and suddenly, Max lost consciousness and fell straight back. We rushed him to Mott Children’s hospital at the University of Michigan Ann Arbor, and were admitted immediately. After being monitored for three days through an EEG and an EKG, they diagnosed Max with epilepsy.
Max has mixed epilepsy (tonic clonic, atonic, myoclonic, partial and absence seizures). Typically, when people think of epilepsy, we think of tonic clonic or grand mal seizures. In Max’s case, he experiences several types of seizures that range from convulsions to staring spells. While at the hospital, the most prevalent type of seizure he was experiencing were atonic or drop seizures. Max would just drop to the ground out of the blue and come back within seconds.
After three years, Max was diagnosed with Lennox-Gastaut syndrome. Max experiences five different types of seizures that he will likely not outgrow. Once we received this diagnosis, we ultimately decided we wanted to know why, and that’s the journey we’re still on. Genetic testing did not give us any answers. Even though our search continues, it was important to me that I accept the diagnosis given.
How did you process the information?
No one prepares you, as a parent, to handle this situation. My process was to just dive in headfirst. For me, I wanted to educate myself. I took copious notes and asked endless questions. The driving question was always: What is the best thing for Max? I’m vocal about his epilepsy. You have to embrace it. We knew, the only way Max can embrace his diagnosis, is if we do. Being united with Chuck (Max’s dad) has helped tremendously. You have to figure out how to be a team because it takes a great toll on you.
What are some of the biggest challenges you experience?
Situations like ours can mentally and physically drain a caretaker. To ensure Max is receiving our best selves, we have to makes sure we are not completely depleted.
The easiest situation (and safest) is to have Max co-sleep with us. This way we can ensure if he has a seizure during the night we are able to monitor him. It is hard to remember what a good night of sleep is — but I think my sleep would be lacking even more if he was out of my view.
This has been a four-year battle. If there is something out there that will help Max, I want to try it. But these decisions come with side effects for Max, and that can be really hard. We started Max on his first round of meds which he responded well to, but they have side effects which can affect behavior, overheating, loss of appetite, weight loss and lethargy.
He has ups and downs. Sometimes he’s regulated and things go well and other times the big seizure is just around the corner. Medications have to constantly be adjusted due to Max growing, changes in his seizure activity, or how the different medications interact with each other. Sometimes Max’s medication may reduce his seizure activity but he’s constantly sleeping. He’s just not Max.
It’s difficult to find this balance of what’s working and what’s not. I am constantly asking myself: Was it the right choice? Should I try a different medication? What balance of medications are best? We’ve tried several different medications and diets — some that have left Max terribly thin with kidney stones — all in an effort to help him. Working through these moments, I second guess myself and it can be exhausting. But, I’ve learned you have to go with your gut. That I know for sure! I know my child. I can look at him and instantly know what’s best for him.
I’m scared, but protecting Max won’t serve him. I don’t create a bubble around him. It’s a challenge to find a balance between letting Max be independent and protecting him. Being independent is important, and I want him and myself to embrace it. I give him as much independence as I can, but I explain the consequences. He’s at an age now where he understands. For example, we’ve been talking to him about moving onto the grass if he feels a seizure coming on when he’s playing outside. It’s hard, but I have to take my feelings out of the mix and consider what’s important to Max.
What have both Maddie and Max taught you about yourself?
That I’m impatient. Parenting shows you your positive and negative qualities and forces you to address them.
I had to stop comparing the two of them. Once I stopped, they developed such a special bond. They really are the best of friends. Maddie is always teaching her friends about epilepsy and has even written a paper about it for school.
I try not to be reactive. I’m always contemplating what is the best avenue for each one of them. I tell myself: take a breath, slow down, stay positive and be realistic. I always ask: What does Maddie need? What does Max need?
Sometimes I let things go. I learn to assess as I go and not beat myself up.
What advice would you give to other parents who are in similar situations?
You always need to think about how to advocate for your child. Find a medical team that creates the space for you to ask questions. The best part about my team is they will ask me, what do you want to do? What medications should we adjust? There is a constant dialogue, and I always feel heard.
It’s important for parents to advocate for their children in a school setting as well. We adjusted his IEP at school so that it meets his needs. The social piece is really important, and it’s where Max shines. Due to the seizures I pushed for Max to have a paraprofessional. We’ve accepted that he’s not going to achieve the same grade in math or science as his same-aged peers. There is no stigma for us. His teachers will put academic work together for him that meets his needs. Socialization with peers is one of the most important things to Max. The school has been fantastic, and we’re all on the same page. They created a learning plan that will help Max achieve success.
It’s important for us to educate others that are in Max’s life. He does have seizures in school, so talking to his class is so important. At the start of each school year I read a book about epilepsy to his class, The Great Katie Kate Explains Epilepsy by M. Maitland DeLand, M.D.
I have learned to focus on the areas he excels at. Max has really embraced reading, so we put a lot of energy into reading and writing. We create success for him and then we are able to channel that success into the other areas of school. There is so much more to Max than a letter grade.
Thus far in your journey, what’s been your greatest take away?
There’s so much. I’m so proud to be Max’s mom! I love watching his personality grow and develop — he thoroughly enjoys life. He knows he has differences, and he’s completely unphased. His agenda is never hindered by epilepsy. His attitude is healthier than most adults. He fully commits to every moment. This little body has gone through so much — he truly doesn’t know what it means to feel good — but he’s always joyful and positive. You hope people always love your children, and I know he’s truly loved. He has a positive impact on other children and adults. I’m amazed at the light that he brings to everyone around him. He’s fearless and willing to try anything. I will always work at being as brave as he is.
Elizabeth’s story is filled with lessons and truths that all parents face in their own unique way. She truly is a remarkable mom and human. I can relate to some of the challenges she described. Who doesn’t second guess parenting decisions? Or the importance she places on Max’s grades — all our kids are so much more than a letter grade. But my favorite is when she said, I assess as I go. I have kept that one in my back pocket since our conversation. It’s a great reminder that sometimes we have to let go.
Through Elizabeth’s story my hope is that you see yourself in some of her vulnerable moments, and remember that none of us are alone. For me, the beauty in this story is Max! He is more than a 9-year-old who enjoys socializing and riding his scooter. He is wiser than his years, a teacher to us all and a reminder to always find the joy in every moment. Regardless of what life hands you, it’s always there, waiting to be discovered.