She is MORE than Epilepsy

Not the sparkle in your eyes with drugs meant to sedate you and not the sparkle in your soul from a life thats harder than I ever imagined for you sweet girl.
Not the sparkle in your eyes with drugs meant to sedate you and not the sparkle in your soul from a life thats harder than I ever imagined for you sweet girl.

This week on the playground, as shouts of laughter rang out around her, my daughter was hurt. Not anything as fixable as a broken bone. But hurt in that invisible, unfixable way called feelings. Another child called her “Epilepsy”. It was the first time that word was used against her. I’ll never forget it and I don’t think she will either. It will live in my memory as the day someone tried to define her by her diagnosis, to hurt her with it, but my girl is a fighter. Epilepsy hurts her every day, more than that child hurling that word. What really defines her is the resilience, bravery and beautiful soul that has manifested from that diagnosis. The way that she has risen above it. The way that she is MORE than epilepsy. She is Haley.

Until her seizures began at age 2 Haley met all of her milestones and was a perfectly developing infant and toddler. When her seizures did begin they came fast and furious and we jumped nearly immediately to drugs known to cause cognitive impairment. For a few months though they were well controlled and I was hopeful and naive about the effects of the drugs. I was too busy being thankful for days without seizures and recovering from the shock of their entrance in our lives to ask the right questions. I just rode the current, trusting blindly that the physicians were doing the right thing for my daughter.

Within 6 months everything I thought was true was challenged. Haley began seizing more frequently, they added more drugs and more until I didn’t recognize the half lidded dopey girl who couldn’t stand without assistance. Haley had regressed in nearly every area. Her speech was slow and slurred, her movements were jerky and purposeless, her eyes never opened more than half mast and I walked around with my broken heart beating.

Those eyes. That heavy lidded gaze.
Those eyes. That heavy lidded gaze.

Then came the hospitalization that almost took her life, the coma that she never fully recovered from, and the realization that I couldn’t leave important decisions about my child’s care to people who didn’t know her even if they wore a white coat and had letters after their name.

It took Haley over a year to gain back skills that the coma robbed from her. But how can I regret doing what needed to be done to save her life? Even if it cost her the life she knew. I know now that we had other things we could have and should have tried first but in the terrifying position of people telling you your child could die right now-intubation kits and PICU transfers and your child’s life hanging in the balance it is so damn hard to know what the right thing to do is. But months of intense rehab and an integrated preschool program with additional services helped her to regain those lost skills. We weaned the worst of the drugs and focused on “catching her up to her peers”.

For a time I thought this might be possible. By the second year of pre-k Haley was not visibly behind her peers in academic or social development. She was struggling with some mild language, specifically word retrieval and also some physical delays, but if you didn’t know to look for issues she just seemed like a precocious, social, happy preschooler.

Once we hit kindergarten Haley spent 3 weeks hospitalized for excessive seizures. Enter more drug combos, that never-ending cycle of titrating up, and weaning off. The gap between Haley and her peers became wider. In first grade she tested at late pre k to early K in all assessments, in 2nd grade she continued to test at a K level. Now in 3rd grade she still tests at late K-1st grade level in all areas and she spends more than 1/2 of her school day in small group and 1:1 instruction and is accompanied at all times at school by a 1:1 nurse. Haley is delayed-academically, socially, physically. But she is vibrant and friendly and witty and observant and so incredibly kind.

Haley’s delays are considered “mild” despite her being several years behind her peers. She engages appropriately with her peers and has many friends, is in fact one of the friendliest girls I know. Wherever we go from a restaurant to the grocery store Haley collects friends like most people collect cat hair.

Every Tuesday is Haley’s day to “share” something during morning meeting at school. This week she took a purple ribbon pin and told her class about how November is epilepsy awareness month. She talked to them about epilepsy and seizures and herself. She courageously explained how seizures make some things harder for her and that she wishes she didn’t have them.

Always trying to turn the hard stuff into fun.
Always trying to turn the hard stuff into fun.

That afternoon at recess a boy in her class told Haley to just “shut up”. Haley told him that she was telling a grown up and proceeded to begin walking to the assistant principal when this boy, this child, hurled a word at her with the intent of hurting her feelings and making her feel poorly about herself…He called her “Epilepsy!”. Haley was upset and retired to the nurses office with a seizure and a request for me to come pick her up. So at noon on a Tuesday my heart broke with the knowledge that my little girl had her first experience of her courage being used against her. I held her close and rubbed her back as she cried and I seethed within at the sight of her feeling inferior and ashamed and hurt. I bit back my own tears and through the lump in my throat told her that epilepsy is not an insult even though he meant it as one. I told her that it was no different than him shouting brown eyes at her. Her eyes are something she has that are unique to her, but they are not all that she is. They do not make or break her. They simply are. And I think they are pretty darn beautiful.

That day, that moment will be burned in my memory as the day another child called my child epilepsy. Even though she did her best to teach and spread awareness about it, that will be the day that she learned that not everyone will be accepting of differences, that people will use your uniqueness against you even when you were vulnerable but brave enough to share about it. And while I am sorry, so incredibly sorry, that she had to learn that I also know that it is an inevitable lesson that will benefit her someday. It was also one of those rare moments of clarity…I saw an irony of special needs parenting in how grateful I am every day for the cognitive abilities that she does have, and the awareness that because of that she understood that the child was insulting her and was hurt. She has continued in the past 24 hours to bring the incident up repeatedly and express sadness about it.

So while I wish that I could go back and erase the hurt from my baby girls face, because she has experienced far too much pain in her short life, I will instead try to embrace this teaching moment. To teach her pride and love. To teach her that “Epilepsy” is not an insult. It is not bad. And I will never again utter the words “I hate epilepsy” because I never want her to perceive that I hate any part of her. And the next time someone shouts Epilepsy at her in a way that is meant to hurt her I hope she shouts back their eye color.

*Footnote: When I initially posted about this on my FB page, simply venting at seeing my child in pain, there were several responses that I deemed inappropriate. The child that hurt my child is still just a child, and I will not publish any comments that threaten or condemn him. I strongly assert that we do not respond to hurtful and intolerant behavior with hurtful intolerance. We continue to teach, to model and to mold the behavior that we desire from them. I hope that he learns as much from this incident as my child did. But my child is my first priority, and while I cannot protect her from these situations, I can do my damnedest to be her soft place to land.

Maybe it’s because I’m a writer that I know the power of words. I hope this is a reminder to everyone that words are powerful. They can be weapons or great sources of comfort. Choose yours wisely and talk to your children, not just about tolerating those who are difference, but about true acceptance. Offer words of love and understanding. Be the mirror and reflect what you want to see.

3 thoughts on “She is MORE than Epilepsy”

  1. Your story of Haley is a mirror of ours with Addison. She is 9 and in second grade. While the last few years we have fought hard for her to catch up to her peers, you reminded me to be thankful for what she does have. She just told me today about a girl who was mean to her at school. Instead of being angry I am thankful that through the years of struggles she is so happy and sweet! We are the lucky ones! Thanks for the reminder I needed!


  2. I’m so happy to have seen your FB post. I have taught and continue to try to teach them to pray for mean kids and adults. When we run across hurtful people, we stop and say a prayer that they may find peace within themselves and stop trying to hurt other people. I don’t want my girls to become punching bags with words for other kids either, so I tell also tell them if someone says means things to just shout “I love you.” Then we laugh because the mean kid will say “what” and think “gosh, I’m being mean and she says that she loves me.” Those simple words may be a life changer for them. Last year, Holly’s class was talked to on three different occasions about her intellectual and medical issues. Yet a new student came into the classroom and a little boy that sits next to Holly told the new student that “if you talk to Holly like a pet, then she might be able to understand you.” He got in trouble and they had another “talk” with her class, but I felt bad for him in a way. I really don’t think it meant the comment to be harmful, it was just his way to trying to explain how to communicate with Holly.


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