A diagnosis is not a label. Building resilience!

By Stephen C. Schultz

My youngest daughter (11yrs old) suffers with a seizure disorder. After much testing, we still don’t have a definitive diagnosis. The neurologist says she may grow out of them as she moves through adolescence. But, she is getting close to adolescence now and there are still signs of the seizures, even with the medication. She obviously doesn't like having seizures and sometimes struggles with anxiety because of them. The seizures are unpredictable and don’t happen very often. As her father, it’s difficult for me to imagine what she must go through knowing that a seizure could happen at any time. Fortunately, there is the medication, but it isn't without some side effects.

We have her involved in softball and volleyball. She took piano lessons and has now switched to guitar.  As parents, we expect her to do well in school and we do our best to live life as a family as if there is nothing wrong. However, as her parents, we are constantly aware of the concern.

I went to tuck her in bed the other night and she was quietly crying.

I asked her what the matter was and she responded; “Dad, I just want to be normal! I don’t want to have seizures!”

I said, “Sweetie, you are normal. Who you are is not defined by whether you have seizures or not.”

We then had a discussion about a classmate of hers who has diabetes as well as the fact that I have asthma. I mentioned; “We all take medication to manage these physical ailments, but the ailments do not define who we are.”

So, how do we as parents assist our children and teens to recognize that having a diagnosis does not equal being stamped with a “Defect Label”? How do we help our kids to understand they are not produced on a human assembly line and headed for the “Island of misfit toys”?

Please allow me to share a personal example. As a small child, I was diagnosed with asthma. I recall nights in bed, propped up against the wall, trying to breathe, but afraid to go to sleep. There were no nebulizers or inhalers in the mid 1960’s. There were small pills that the doctor prescribed. My mother was told to cut the pill in fourths and give me a ¼ pill for my symptoms.

As I got older, I seemed to grow out of my symptoms somewhat. I still had asthma, but it was exercise induced. Sometimes simply walking in the cold would bring on an attack. I recall a time in JR High School going to my Dad and asking him if I could get a note to miss gym class. We were scheduled to do Track & Field and I knew there would be a lot of running. (I lived in Eugene, Oregon…Track City USA!) I got the idea from some other kids who had asthma and they had notes to miss class.

My dad simply said; “Steve, your mother and I have done all we can to help you with your asthma. We have taken you to the doctor and paid for medication so you don’t have to miss out on any activities. I’m not going to write a note so you can miss PE. Make sure you take your medication and then do the best you can.”

I remember feeling disappointed at the time. I thought for sure I had a “Get out of PE” pass! However, throughout my childhood and teen years, I played baseball, football and basketball in the city recreation leagues and developed resilience around the fact I had asthma. I was able to play baseball in High school and intramural sports in college. In fact, to this day I don’t recall ever thinking I could not do something because of my asthma. I have simply learned to live and enjoy life regardless of the fact that I have it.

There have been times throughout my life when I have over heard parents discuss their children saying; 

“Oh, he can’t do that…he’s an Asthmatic.” 

How many times have we all heard; “She’s Hyper-active” or “He’s Aspergery”! 

Even with other medical concerns we say, “She’s Diabetic” or “He’s Anaphylactic when he eats peanuts”. 

This may seem like semantics, and it is. But, for children who are diagnosed with physical, developmental and emotional concerns, it’s important to help them develop a sense of identity separate and apart from the diagnosis.

This doesn't mean there won’t be frustration or pain. This life brings with it many struggles. Just as the chick must struggle to exit the egg, we too have struggles in life. However, with the successful navigation of each struggle in life we develop strength and competency in our ability to see ourselves as we really are.  

Update: My daughter is now in her early twenties. She has had some medical testing and there are some surgical options to assist her. However, they are pretty aggressive. She is at the maximum dose of medication and still has what are termed, "Breakthrough Seizures". The surgical options include putting leads through her skull and into her brain that are attached to a pacemaker type implant. She has decided to live her best life managing her seizures with the medication as well as managing her activities of daily living at this time. While she still can't drive, she has moved across the street to an apartment. She has a roommate who in enrolled at a local university and my daughter works three days a week at a recreation center. She also has a white Lab as an emotional support dog. 

As mentioned above, life brings all of us struggles of one kind or another. How we manage them and navigate the rough waters is ultimately up to us, no matter the cause.