"When Life Give You Lemons": Finding the Sweet Spots as a Caregiver

You likely have heard the statement, "When life gives you lemons, make lemonade." As a parent and caregiver to someone living with epilepsy, along with many other medical challenges, we have been experimenting with different lemonade recipes for the past 15 years.

Lemonade is made with 3 basic ingredients: lemons, sugar, and water.

The lemons of a caregiver's emotional journey

Our son is unable to speak and finding ways for him to express himself can often be hard. The ketogenic diet and 2 seizure medications control his myoclonic seizures for now.

Seizures are scary enough to watch in someone who can tell you how they feel before, during, and after a seizure episode. Imagine watching it happen to your child who is unable to communicate these feelings. We dread each episode and often find ourselves waiting for the floor to drop out underneath our feet when we plan anything fun.

Missing out because of his epilepsy and Autism

His developmental delays and Autism prevent him from enjoying normal social events like dinner out with family, going to the movies, or even a vacation to the beach. There are feelings of guilt when we go enjoy these things, because we are always leaving him behind to be taken care of by someone else.

I will always wonder what he thinks about when we are gone and if he is angry or upset that we don't take him. However, the times that we have tried often end with outbursts and behavior that proves we should leave him in his familiar environment at home.

As the milestones pass...

As time has passed since his diagnosis at 3 years of age, we have come to terms with the person that our son is capable of being.

The major milestones are hard to accept. Watching our friends' typical children play sports, learn to drive, graduate from school, and get married has been the biggest lemon of all. Not because we aren't happy for them, we just know that our child may never meet any of these milestones.

Working through those lemons

So, the first step in making our lemonade was to break down the lemons. We pulverized ours! Cut them, squeezed them, and stirred them up. (Insert talk therapy here.) Until all the juice was expressed out of every lemon. Nothing remained in the bag!

We began to learn about the not so great things that our friends were facing with their typical children that our son was shielded from due to his condition. Things like bullying on social media, drugs and alcohol abuse, fraternity hazing, heartbreak from dating, etc.

The smiles and the cuddles and the innocence that only a child knows would remain with our son for as long as he lived. This was the sweetest gift.

Adding sugar

Each milestone that he was able to reach gave us hope and made us so very proud to be his parents.

And we are now able to balance our life between caring for our son and making a life as normal as possible for us and our other 2 young adult children. We found the perfect sugar for our lemonade!

Plus some water for balance

Our son turns 18 this summer. We will embark on a new journey of caring for an adult that is unable to care fully for himself. I don't take this responsibility lightly. The month prior to our son turning 18, I will celebrate a 10-year anniversary of being a cancer survivor.

Ten years ago, I wasn't sure if he would have a mother to care for him. The fear of cancer coming back lingers, but if not watered down with some balance, it causes us to miss out on the most beautiful moments in life.

My caregiver "lemonade" and coping with epilepsy

My lemonade recipe is simple. Squeeze the lemons (seek help and use it), add sugar (love), mix with water (balance it all with hope). And every now and then, add the salt on the rim to make a margarita!