Lucky

Today I took Emily to the Science Museum. I like taking her there because it's pretty wide open, so she can use her walker with relative ease. She also loves the stuffed Buffalo and Bear, and especially the Red and Grey Fox.

I have been trying hard as of late to let comments "roll off me". Emily's only getting older, and I don't want her being hurt or offended or taking comments to heart. It's a difficult balance because I want her to receive the respect and dignity she deserves. I have taken to calling people out when staring longer than 10 seconds by interceding their gaping mouth and glare at Emily (or interceding their pity side head turn and frowny sad-face) by stepping between them and Emily, looking them dead in the eyes and saying "I KNOW! Isn't she adorable/beautiful" or "She's having a GREAT hair day today, isn't she?". This came at the recommendation of a mom from aquatherapy and I like it because, when Emily reaches the point where she realizes people stare at her I'm simply going to tell her it's because she has unbelievable natural beauty.

I mean, it IS true. She is gorgeous.

But waning off the stupid comments, now that's going to be a bit harder.

I've spoken about this before. In the circle of special needs mommies and daddies there is much written about this, how-tos for people and what-not-to-say. I find it remarkable that adults need a how-to-NOT-make-an-offensive-comment-about-a-child manual, but apparently I give people too much credit. I understand that many people see us, and pity us. They feel bad, they make an assumption about what our life might be, and then they feel bad about that, so to make themselves feel better, they start rationalizing things. It's ridiculous. We don't want your pity, we have quite a fabulous life.

Often people think expectation is that I should put myself in the other person's shoes. That others don't know about SB, or about walkers, and so it's okay for them to say out loud in front of my child, offensive or stupid things about my child or my child's walking aids.

So back to the Science Museum. We had just finished watching a 3-D movie on Africa and polished off a $4.50 bag of Cheese-its, and were heading back up the hallway to the main part of the museum to find the elevator and get to floor 2. As we came around a corner a museum employee saw us. The second she laid eyes on us, she tilted her head to the side and said "aaawwwww." And no, it was not the "awe" that means "you are freaking adorable". It was the "awwwww" that means "I pity you." I braced myself, bent over to move the walker a wee bit faster and to avert eye contact, and said to myself please, say no more.

But alas, she kept it up as we got closer. "I need one of those!" (I hear that every single time we go out. No joke, 100% of the time) and then just as she was next to us, walking into her office, she stopped and said "You know..."

Ugh. Nothing good ever comes of a sentence that starts with "You know...".

"You know...you are lucky. She is lucky. That she's is in... that."

Now, I KNOW I am lucky. I wouldn't change anything about Emily - But I'm not lucky because she's in a walker. That might be the most ludicrous statement I've every heard. Who ever thinks let alone says that someone is lucky to not have the ability to walk???

And then she offered an explanation, presumable because at this point my jaw was lying on the floor. Or maybe because, she hadn't quite made each of us feel as uncomfortable as we could feel.

"You probably never have to carry her! Other kids probably tire from walking since they do it on their own. Then the parents have to carry them. But THAT thing does everything! She's lucky it does the work!"

Yeah. Are you essentially calling my kid lazy? I mean, it's not like my kid's knees buckle under her little body weight. And it's not like she's using every ounce of her muscles in her core, arms, hands, thighs, ankles, and afo's to stay upright. You're right - she's LUCKY that instead of standing on her own - or even walking- that she has to use a walker.

The problem with all this is, the bottom line is, she, like everyone else who has made a stupid comment, looked past my child and only saw her as disabled. She looked PAST my child and only saw a disability. And then she wanted to rationalize her own uncomfortable feelings about it.

That's the part in all this that kills me.

Week 3: 16 weeks to go

16 weeks. 110 days to go till Team: "Take That!" takes on the NYC Marathon, and brings in our goal of $50,000 to the National Spina Bifida Association.

Don't you LOVE the wheel?! Thanks to Hayden's super Mommy, Adrienne Trigg, for creating this image for the team.

This is week 3 of training. The past two weeks have gone well, with the heat and humidity as the biggest hurdles. I mean, it's Buffalo - aren't we supposed to have mind summers? This week the forecast has 4 days at 90+ degrees. Lats night at 11:30 PM there was still an air quality alert going on.

Needless to say, my mile times the past two weeks have been less than what I thought they'd be. I'm running slower then I did in April and May, and I was doing very little work back then.

This week was supposed to be my first super-long run, 18 miles. I knocked it down to 14 because I just don't think it's realistic to do 18 at this point, in this heat.

But I am getting pretty tan.

We need a lot of help with our fund raising effort. Thank you to those who have donated to us. We have to reach $5000 with less than 100 days to do so...please go the the SBA website here and make a tax-deductible donation to the SBA, choosing Elizabeth Keicher as your team captain. 100% of you donation goes right to the SBA. And I'll have the silicone bands to sell again this year in two weeks - hot pink, and royal blue, $3 each or 2 for $5. The bands will say:

Team Take That! NYC 11.6.11

This should be a fairly low key week for us, as the Lancaster Art/Craft show was yesterday, putting the past two weeks of craziness behind us. Now if only the website for sassydamsel.com would go live. We are having a meeting with our web designer on Wednesday (finger's crossed) and from there we should be looking at only a few more weeks (maybe even 1-2 weeks...though it's probably a huge jinx to say that...). And Chris and I have a date night this week, reclaiming our youth and seeing the (reunited only for one night) band the Tea Party this weekend.

Until next time!

Week 1: 18 weeks to go

Well today is day 1 of training for the marathon. As it turned out we were given TEN spots by NYRR for the NYC Marathon November 6th. Our team has 5 parents of kids with spina bifida (1 Dad, 4 Moms) and 5 friends/family of the team members. The kids were represent range in age from 1 year old to 9 years old, and there is 1 girl (Emily!) and 4 boys. We have runners from New York, West Virginia, New Jersey, Texas, and Arizona.

Each one of us must raise at least $2500 for the SBA, but the hope is that we each raise $5000 and come in with $50,000.

And so training began today. I thought each week I'd post the training plan. This week's total mileage is 30, with 4 spin classes and 4 days of weights/strength training. The long run is only 12 miles...but the 18 mile long run is just 3 weeks away!

No news yet on a date for when sassydamsel.com goes live. It's very frustrating to be at mercy of a website designer as I thought we would have launched by now, at the latest. In any event, we will be at the Lancaster Art Show July 17th, so if you are local come on out and see what we have! Many of the accessories I'm making will be exclusive to the event and will not be available through the website.

Happy 4th of July!