I've never been a mom to a child other than Lilly, so I can't compare, really. But I think Jon and I are slightly different parents because of who Lilly is. But not in the way you'd think.
Lilly having Down syndrome doesn't limit her, or us. Sure, we occasionally talk about IEP's, evaluations, and goals. We encourage her to do her best; but we'd do that regardless.
But the difference we've found in raising a daughter with quote "special needs" (the quotes are because, honestly, her needs don't feel so totally special to me) - is that she's encouraged us to have a "sieze the day" attitude. To not take anything for granted, and to welcome every opportunity and possibility. To not put off until tomorrow what we could do today.
"If not now, when?"
Life is fragile. Life is precious. Life is meaningful, and I guess we always knew that, but I just want to show Lilly everything, teach her everything, experience everything with her. Give her every opportunity to go swimming and dance and travel and explore. She's growing up so quickly, and what's the point of not appreciating every moment?
If we sat back and said we'd do things later, we'd miss out - she'd miss out. If we said "Broadway is really for a kid a little older; maybe when she's 8 or 9" then she'd never go nuts singing along to her favorite Abba songs in Mamma Mia, or talk nonstop about the time we all saw Mary Poppins, or the impression that Lion King made in her heart - she still talks about it daily. If we waited until Lilly was 10 to go to Disney World, we wouldn't see the magic in her eyes as she so gives Cinderella or Princess Tiana the biggest hug ever. Sure, it's justifying all our experiences, but how cool is it to remember the way Lilly was overboard excited on a helicopter ride around the Bay of Islands in New Zealand?
These memories are so precious.
So Jon and I booked our Disney Cruise this July with the expression: "If not now, when?" Sure, we can put it off a few years until Lilly understands what the Roman Colosseum is, or is really ready to endure intense European travel. Or, we can go now when the timing makes sense, knowing Lilly loves each experience that life gives her, knowing it will warm our hearts to see her immersed in the Mediterranean cultures that we visit along the way, packaged within a fun kid-friendly Disney cruise.
And it's a good thing we jumped on board - because today Disney announced that next year they won't be heading to Europe (instead it's going from NY to the Bahamas, and since we're living in NYC, and have been to the Bahamas, and seriously, they can't even compare with Barcelona and Corsica and Malta and Villefranche...).
So the opportunity to put off this adventure by a year doesn't even exist - and perhaps Disney will go back to Europe eventually, but I am so glad Lilly's passion for life has convinced us to have the adventure of a lifetime - even though Lilly will only be 5 at the time.
Carpe diem!
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