I’d love to share with you about why my family wears purple all November long. I’d love to tell you why epilepsy awareness matters. But I can’t. I need to tell you about a friend I have.
I have this one friend who, for years, was more of an acquaintance. I borderline idolized her from a distance; she had the perfect family, a perfect house, perfect marriage, perfect outings, perfect blog, perfect everything. Over the last several years I have calmed my fangirl status in her presence as we have moved from previous coworkers and online stalking to an actual friendship. I know her well enough now to know that her life isn’t perfect. Heck, it’s far from it (isn’t everyone’s?). She has her own struggles, she still gets irritated with her husband, she constantly questions her parenting, she worries about her kids, and sometimes she feels like she’s failing at balancing the mom/friend/daughter/sister/wife juggling act. No matter how well I know her or her family, there is still a bit of perfection in her though. I’m not sure how she does it, but no matter what she is ALWAYS the perfect mom for her kids. Sure, she feels like she screws up sometimes, but I’m not sure I know anyone who parents her kids so perfectly to the needs of each kid. I’ll go ahead and make a blanket statement that her kids are the sweetest, kindest, most intuitive kids I’ve encountered.
Knowing what I know about this friend, I don’t think she’d chastise me if I said that her middle child is the one who makes her question her parenting the most often. Despite all her doubts about how she’s raising her middle child, that kid is one of the most tenacious, thoughtful, spunky kids I have ever met. She is wise way beyond her years and cares about other people like no other. Everything she does, she does fiercely and with complete volition. My friend spends a great deal of time worrying about her daughter and constantly questioning her parenting methods with her. You know what I see repeatedly though? I see a mom who goes out of her way to make her daughter feel special, plans in one-on-one time, fosters her creativity, who gives her kid chances and takes time to explain things, who is raising a daughter who watches out for her family without being asked, and a mom who is raising a daughter who you’ll never have to worry about being independent in the world. My friend lets her daughter express herself, both emotionally and expressively, and she smiles at her with such adoration. My friend is the perfect mom for her. Hands down.
Then there’s the youngest in the family; the sweetest little girl you ever did meet. She can have a mind of her own, but my friend has this flawless ability to (on the surface) go with the flow and be everything she needs to be for the baby of the family. She doesn’t say “no” to a suggested activity just because it will cause her more cleanup or work, she just pushes forward to provide the most magical childhood to her daughter. She doesn’t buck her off when her daughter wants to spend the afternoon riding on her back while building a puzzle. They are such a symbiotic pair. I see so many of my friend’s traits in her youngest and it’s truly been wonderful to watch that develop from infancy to the preschool years. Everything my friend does for her youngest daughter screams “best childhood ever”.
Lastly, there’s the oldest of the family. Her oldest is the easiest person in the world to love. He is goofy, funny, and knows no other way to be other than genuine. He will never turn away someone to play baseball with or talk trains with, and his smile really needs to be on posters around the world. My friend is always right there to anticipate what he may be feeling or thinking and to make any adjustments.
A Facebook post that I made almost exactly a year ago best sums up my friend’s admirable and flawless parenting to not just her oldest, but all of her kids.
“It’s officially December! If I were to be completely honest with the social media world, I’d have to say that this past week I was actually really looking forward to December for the simple fact that I wanted complete freedom in dressing the kids and I without working it around the color purple anymore.
On this first day of December, I opened Leilani’s closet and assessed the possibilities. I was so excited to put her in a cute pinnie that I knew she would look adorable in. Not even an hour later, I was stopped in my tracks and reminded of how lucky I am to have freedom in my life like that and how selfish I was being of just dropping #epilepsyawareness because November had ended.
You see, we have been doing this whole #wearpurpleforollie thing. But Ollie has two siblings as well. Today, we had plans to have a play date with his youngest sister. As I checked in with (my friend) to discuss details of timing/ place she informed me that Oliver was home from school today because he had three seizures this morning. THREE! (My friend) and I opted to continue on with the playdate in the safety and comfort of their house.
I talked to my kids before we left the house about how Oliver had some seizures today and he might be tired or how we might end the play date early if he wasn’t up for visitors, etc. Carson asked me, “mommy, is epilepsy a color?” I explained it wasn’t a color but wearing the color purple represented epilepsy awareness and that we love someone with epilepsy. Without missing a beat, Carson asked me, “Can I wear purple today? Because I love Oliver and maybe it’ll help him feel better.” I cannot tell you how insanely moved I was when Carson asked and said this. My four year old boy gets it! He wants to comfort his friend and show the world that he loves Oliver! He doesn’t care that he has epilepsy! He immediately marched upstairs and grabbed one of his purple sweatshirts from his closet.
Because of the cluster seizures Oliver experienced this morning, he had to take a sedative medication that helps to treat them. As with any medications, diazepam causes side effects. I saw firsthand how Ollie was slower moving than usual, had slower speech, increased difficulty in regulating emotions or adapting to change, unsteadiness, even droopy eyes and slight drool. He was the same funny Oliver that we always see (and love!) but he was noticeably different at the same time.
There were several times this morning that he said he felt a seizure coming on. His amazing mom had this seamless ability to comfort him and keep him safe while continuing to care for her daughter, play with my kids, and carry on conversations. All of this while giving Ollie the care he needs and deserves.
I have talked at length with my kids this past month about epilepsy and seizures, but the fact of the matter is that it doesn’t impact our daily lives. That’s not the reality for the 65 million people worldwide who have epilepsy. Today, I saw negative side effects from a powerful medication, I saw a boy miss a day at school that he was looking forward to, I saw a mom have to question if she should continue her plans for the day as scheduled, I saw a mom have a giant grin on her face when her son was feeling well enough to eat his first food of the day, and I saw a boy who didn’t want to raun and jump and play but who just wanted to rest and watch his favorite tv show.
While most of that may sound negative, I also saw something truly amazing. I saw this look between Oliver and Carson as they embraced each other in a goodbye hug. It is the only picture I took this morning and it makes me tear up that I caught this moment. I am determined to make sure my kids treat people of all abilities, levels of health, gender, race, sexual orientation, etc with kindness and open arms.
Lastly, one thing that I think is important to share is how Oliver’s mother genuinely thanked me for coming over despite their morning and for not ushering my kids away as Ollie felt a seizure coming on. I was floored by this. Why on earth should I be thanked for not doing anything at all? It’s because she has experienced (way too many times) adults and kids alike turning the cold shoulder to her sweet boy and her family for fear of them being “different”. This is why #epilepsyawareness matters! What is there to be afraid of? I’m fairly certain Oliver doesn’t have the ability to hurt a soul, even if he tried. I’ve said it before and I’ll say it again, he is so incredibly loving and kind. For those backing away or watching from afar, YOU are the ones missing out.
As I went to locate that post, I noticed that someone had reacted to it with a tear face emoticon. I find it incredibly admirable that my friend doesn’t pity her situation at all. She once told me something along the lines of how people will comment on how they can’t fathom how she and her husband do it and she said, “It’s just how it is. I wouldn’t change (our son) or family”. She told me this AFTER she was done telling me results from recent testing on the verge of tears. If that doesn’t sum up her outlook, I’m not sure what does. She takes whatever she and her family are faced with and proceeds with grace and gratitude.
Just like last year, my family and I vowed to wear purple in some form everyday this November. We don’t just wear purple for epilepsy, we wear purple for a perfectly imperfect family who cares about other people without a second thought to getting anything in return. We wear purple because it’s not an inconvenience, it’s an honor. We wear purple because so many people don’t have a choice. Most importantly, we wear purple for Ollie.