Christmas

Nathan had the flu the week before Christmas and still was not 100 percent himself in time for the holiday. Maybe that partly explains his lack of enthusiasm this year. Perhaps in a couple of years I'll have at least one child who experiences a high level of excitement about Christmas-- and then I'll probably look back longingly at these Christmases with a child who doesn't really want much and would have been happy if his stocking filled with five dollars worth of puffy balls and a slinky from the dollar bins at Target were all he received.


Nathan is generally happy with what he has. He did get some new toys, though, and is very enthusiastic about a new Leapfrog toy he got from grandparents. In fact, more grandparents have gotten him more Leapfrog toys, which I'm sure he will also love, but he hasn't gotten around to opening them yet, being happy with the one he's got. He'll get there, and heck, maybe some of his Christmas toys will still be new and exciting in mid-January when his sister arrives and his parents are exhausted and busy and happy to have him entertained. Christmas will just last a little longer around here.

My shining star

Sometimes people just don't get it. Sometimes people look from the outside at parenting a child with special needs and think he must be a burden, it must be so hard. They see what my child isn't doing yet. They see the disability. Someone recently said to me that it must be like caring for an elderly person. Now, I've never cared for an elderly person but I've got to think it's very different from my experience parenting Nathan! When someone is losing skills, abilities and independence such that he now requires care when previously he did everything for himself (and perhaps took care of others), there is bound to be a lot of understandable anger and frustration. Perhaps there are some joys and closeness to be found in this kind of caregiving situation, but I've got to imagine that for the most part it is really hard on both the caregiver and the one who needs the care.

Raising a Nathan is different, though. He gains skills and abilities, although on his own timeline. Sometimes I am reminded of the things he's not doing yet (emphasis on the yet), but more often I focus on the skills and abilities that are emerging. When we purposely decided to become parents, we pretty much signed ourselves up for some years of caregiving, so having a little person depend upon me for his needs was not entirely unexpected. Sure, he will need more help and for a longer time frame, but I really don't think of this as caregiving for a person with a disability; I think of it as parenting my child. And while there are challenges, overall it's fun. Nathan is cute. He's silly. He makes me laugh every day. He's sweet. He's snuggly. I feel so blessed to be his mom, so lucky to have him in my life, and I don't know how to explain that feeling to somebody who looks at him and sees disability and need. That person doesn't see what I see, doesn't feel what I feel. Sometimes I wonder whether I'll really be able to love my next child as much, as strongly, as powerfully. Of course, I'm sure I will; it's hard to imagine now in this time before she's born because I don't know her yet, but I'm sure that once she arrives I will fall in love all over again. It's part of being a mom. Not a special needs mom, not a supermom, just part of what it means to be a parent, and a huge part of why anybody does this more than once (really, it's not that we enjoy smelling like spitup or changing diapers).

I'm going to close with a Dan Zanes song that hapens to be a favorite of Nathan's, and one that describes the way I feel about him. I don't know who the song was written for; I'm guessing Dan's daughter Anna, who does not to the best of my knowledge have any sort of disability. Sometimes loving your kid is just about loving your kid.

Shining Star
lyrics by Dan Zanes

you can take a nickel turn it to a dime
you can turn my face into a smile anytime

you're a shining star day and night
you're a shining star in my heart all right

you sing just like a robin you walk the way you dance
you glitter like the beaches on the south of france

you're shining star day and night
you're a shining star with a golden light

yodel-odle-lay-hee
yodel-lay-hee-hoo

you can have me laughing the way that no one can
you can bury me up to my neck in sand

you're shining star when you smile
you're a shining star you can shine for miles

yodel-odle-lay-hee
yodel-lay-hee-hoo

just in case you wonder just in case you care
anytime you need a friend i'll be there

shining star day and night
you're a shining star in my heart all right

yodel-odle-lay-hee
yodel-lay-hee-hoo
yodel-odle-lay-hee
yodel-lay-hee-hoo

Pancake Breakfast

On Saturday, some friends and I from the Yolo Community Network (and really Becky and her family in particular!) together with the Down Syndrome Information Alliance put on a pancake breakfast for families in our Down Syndrome community. We've done smaller get-togethers, potlucks, playdates, a holiday party last year for about 35 people, but nothing on this scale. We had about 180 people RSVP plus 15-20 volunteers to help. I have to admit, some of us were a little anxious about how things would go. Despite some glitches along the way, it was a great success and a lot of fun.

Landon

Marcus

Noah

This was not a fund-raiser as most pancake breakfasts are. The idea was to have a get-together for the whole family with food, crafts, games and Santa, see old friends and meet new ones. I overheard one mom say, as her child was behaving in a way that was not consistent with what she'd wanted, "At least here everybody understands". Yes! That is a huge part of the point of getting together like this-- if your child has texture issues and won't put a pancake in her mouth, you will be around people who "get it". If your child has some sensory issues, clings (as mine did for a while), makes unusual noises, fears Santa, whatever, you will be in a whole room full of people who understand that and don't bat an eyelash. That's one of the nice things about getting together like this.

Sadly, we didn't have a working microphone, so I didn't get the opportunity to thank everybody publicly at the event. I really want to thank the Crews family for planning and cooking, Danielle Bobadilla for helping out with eggs, Jennifer Enriquez for the crafts, Magpie Catering for the sausages, the Collings West Sacramento Teen Center for donating the space, and the wonderful volunteers from the pre-med/pre-vet fraternity and from Kaiser, as well as Heather Green, Lisa Lindsey and DSIA for sponsoring and advertising the event as well as recruiting the volunteers! A huge thanks to pastor Douglas Zeck of the New Testament Church in Woodland (AKA Marcus' grandpa) for playing Santa (he'd be the Caucasian Santa pictured above), and to Ricky Mayfield for filling in when a family missed the announcement that Santa was wrapping up (he'd be the African American Santa pictured above).

So, now that we've gotten through the first annual pancake breakfast, I'm ready to start thinking about the second one!