Normal. Ordinary. Typical.
Words that most people rebel against. They want to be different. Unique. Seen as an individual.
And yet. When your whole life becomes a series of medical professionals uttering the words “unusual”, “atypical”, “extraordinary”. You learn rather quickly than ordinary is a gift. One we get glimpses of even if they come with disclaimers. Sometimes (ok. Rarely) they simply happen but more often we orchestrate them. (Which in and of itself is not normal) But moments that I refer to as ordinary amidst the chaos that generally makes up our life.
These are the moments that you don’t know matter until you live without them, moments that others take for granted:
Moments like-watching your child lick the beaters from the cake you’re baking. It seems like an ordinary moment but because of Haley’s diet restrictions, is extraordinary in our home.
Moments like: a day at the mountain skiing. No. She can’t go on the chairlift. No she can’t even ride the magic carpet without a grown up next to her. But she sailed down that beginner hill with her arms behind her like she was racing and my heart leapt at her unbridled joy.
Moments like: choosing a tv show and having it be an age appropriate choice rather than a preschool show for my 8 year old.
Moments like: all of us sitting at a family dinner eating the same. Exact. Thing. And the joy that shines in her eyes when she didn’t feel excluded or different.
Moments like: her getting caught playing on her iPod at 10pm and getting grounded from it for the first time ever. I welcome these typical problems!!!
Moments like: that ONE time she wore jeans even though her sensory issues are so severe that she will only wear dresses and leggings. (And even then usually the leggings have to be stretched and the dress cannot have a sash or elastic at the waist). But for that one day she conquered them.
Moments like: sitting at a restaurant and watching her order the first meal that I didn’t prepare for her in…well, years. (And then digging in my purse for the specific stevia and hummus that are diet approved)
Moments like: watching her eat her first banana in 5 years. It’s the one food that her diet therapy doesn’t allow for that she asks for nearly every day. After 4 years we finally we gave in
Moments like: taking a field trip and going on the school bus.
Moments like: going to a sleepover at the Museum of Science with her brownie troupe. (And though she did have 1 seizure that night it was mild and didn’t deter from the fun. We did pay for it over the next several days however. Shrug. That experience was worth it)
Moments like: (this one is for you Delia! We are so proud of you) Opening her own carton of milk and inserting the straw unassisted at school. One less thing that isolates or separates her from her peers.
Moments like: waking up on St Patrick’s Day morning and asking to go downstairs to see if the leprechaun came and letting her navigate the stairs on her own.On her own!
Moments like: watching her saunter off into her gymnastics class. Alone!
Moments like: riding a ride at an amusement park. (Only ones where she is fully secured and an adult can ride next to her. Busch Gardens was the best park we’ve ever been to for this)
Moments like: Her playing in her bedroom with her dolls by herself for the first time ever at age 6. By herself people!
Moments like: letting her go into the bathroom unsupervised for the first time ever at age 7.
Moments like: bringing home a math test with a 100 that she completed in class with all of the other kids.
Moments like: watching her sound out a text message to a friend instead of just sending emojis.
Moments like: taking a brain break day off from school and spending the day on the couch snuggling with Mom. What? Ok. Maybe that one isn’t ordinary. But it is our life. The chaos and the beauty and the little moments that add up to this life we live. Together. Filled with moments both ordinary and extraordinary but every one of them full of love.
2 thoughts on “Ordinary Amidst the Chaos”
Hi Jill. I have a 25 yr old daughter with Dravet’s syndrome who has done well most recently on the Modified Atkins Diet followed at Johns Hopkins. We live in Newburyport and are waiting for the Dartmouth NH study to get going to get her on GW’s CBD’s. [She lives in NH in an interesting setting.] However, it could be 6-12 months at least. Would like to talk with you as we live near you!
I would love to touch base! We have been on various diet ratios for 5 years now and are coming up on 11 months on Epidiolex.
You can find me on FB as Jill Hitchman-Osborn or email me at JHitchman@hotmail.com
Always love to meet warrior Moms. Plus it’s an excuse to hit Panera in Nbpt!