When one purple scarf makes a difference to a girl with epilepsy
Elizabeth went to the neurologist office this week so we could sort out the new symptoms of her medication (Lamictal) and find some strategies to manage the changes in her life.
While we were there, the Nurse Practicioner came in with several hand-made scarves in varying shades of purple, the color chosen for epilepsy awareness. “Pick one,” she said.
Elizabeth was shy about it, but eventually selected a simple solid purple scarf with an intricate weave. On it was a round sticker that read “The Purple Stitch Project.”
The meeting went on, about her sudden weight loss (10% of her body weight in three months), her sudden downturn in school (we sign failing papers almost daily), and her overall feeling of tiredness and well, just blues.
We’re not giving up on the medicine, as it’s the last one they’ll give us. We’ve been through others, and while sometimes they work for a while, the seizures return, often more frightening than the last. Elizabeth, now 10, has been medicated for three years. We’ve been through seizures in the swimming pool, at the top of playscapes, in restaurants, at parks, many at school, including one during a whole-school assembly.
Life isn’t easy.
But she held on to this scarf as we left, puzzling over the stitches. She had joined a knitting club last year and wondered how hard this particular pattern was to follow. I asked her if she wanted to make scarves for the Purple Stitch Project herself, and then she had the brainstorm that maybe the whole club would.
I wrote the mom who runs the club, who thought this was a fantastic idea–the girls making scarves as community service. They’re going to stock up on purple yarn when they start the club up again in the spring. The one scarf given to Elizabeth will keep on giving–both in providing gifts to other children with epilepsy, but also making sure the thing that makes her different from her friends is something they can talk about, to bring them together rather than set her apart.
I don’t know everything that goes on inside Elizabeth’s mind, the changes in weight and self-image, going from from manic energy to lethargy, from seeing the silver lining everywhere to feeling surrounded by doom, to doing well in school to having trouble concentrating on anything.
We do the best we can.
If you knit, we encourage you to join in. Make something purple and send it in to the Purple Stitch Project. The child who gets it just might be someone you know, someone like Elizabeth, who will take your one scarf and turn it into something much, much more.
