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!

It's the most wonderful time of the year...

Doesn't it seem like I just finished talking about the NYC Marathon?!?

For those who haven't heard, the Spina Bifida Association was chosen again this year, to be one of the partner charities for the NYC Marathon. The Big Day is November 6, 2011.

The National Spina Bifida Association had applied for 20 runners...and we would have filled those 20 spots in an instant. So many people inquired about being on our team, from many mommies of kids with Spina Bifida, to family members, to friends, and even Emily's physical therapist was hoping for a spot.

But we were only given 5, and while it's not 20, I am certainly grateful that we have the 5 spots back. Last year we raised $31,000 that went directly to the Spina Bifida Association, and of course we are looking to top that this year. This year we also welcome two new team members: Sherrie, who is a lifelong family friend of teammate Scott; and Adrienne, who many of you know from Texas Triggs.

As I was running today, on this beautiful spring day, I thought about what this time of the year means to me. Marathon training for me begins July 4, allowing me 18 weeks. I have about 2 months of pre-training left, where I can ensure I'm hitting the base of 26-38 miles per week and working in 2-3 strength training and spin classes a week. Last year my training peaked at 40 miles a week, I had three 20-mile long runs, and I didn't start spinning until 10 weeks into the 18 week plan. I ran 1 half marathon during training.

This year ("sub5 NYC" as I like to call it), my weekly miles will peak at 55. I won't be running less than 44 miles in any week (except for taper weeks), and I have two 20-mile long runs and four 22-mile long runs. I ran a half marathon 3 weeks ago, and I have another one in two weeks. I will complete an additional 4 before November 6th. I'll be strength training and spinning 4-5 times a week.

Training is very time consuming, and to say I'll need to maximize time management this year is an understatement. I am in the process of starting a business: The Sassy Damsel, LLC. It is handmade accessories for girls, such as hair bows, clips, ribbon sculptures, headbands, hairbow holders, tutus, pacifier holders, etc. Hopefully the website will be live in about 4 weeks. It's all very exciting! Between Emily's crazy schedule, the impending training season, and the new business, it's all very busy...good thing I don't sleep much, and I have a hubby who helps me out (and never complains about the neglected housework).

But I love this. And I think it goes hand in hand with spring, and the idea of rebirth. Two years ago when we received Emily's diagnosis January 13th, I was at the lowest point of my life. I was there for a long time. Months. I never imagined I would be out of it, and I never thought there would be a rebirth. It was a long January. February. March. By April, we had weathered the worst, and at some point, subconsciously, I made the decision to accept the diagnosis and Fight. Survive. Persevere. Win. I was reborn, and my path in life was reborn.

Last year when I decided in June, to be one of the 5 runners for the SBA, I was no where near ready to do so. But much like the previous year, in order to accomplish this goal (a goal which, were it not for Emily or her diagnosis, I would never have had), I had to fight. Survive. Persevere. Win.

So this year I welcome that challenge once again. Now, spring brings with it, for me, a reminder that life isn't simple and isn't easy. It requires you to push yourself and ask more than you otherwise though you were capable of. And when you accomplish what you set forth, you come out stronger, better, and inspired to push yourself even further the next time.

A stranger on Amazon gets the best of me...

Did you every notice that the world seems full of people who aren't aware of anything past their own life? People who are so self-centered or insensitive that they don't can't conceive of a wold not exactly like their own?

I have come to expect this type of stuff outside the home, like the Mom who, after staring at Emily's legs for 5 minutes (while I stare back at her, waiting for her to realize what she's doing), turns to me and say "....um...can I ask you something?"

And I wince. Here it comes. A statement. A question. An opinion I didn't ask for. A story I don't care to hear. Like, "Sometimes the ups and downs of having kids is so hard. When my son fell and broke his arm, I was a wreck. Just a wreck. It was so hard, having to go to the ER. But he was okay. Your daughter will be too. I know what you're going through..." Will it be filled with insensitivity, such as "What's wrong with her"? Will it be filled with unsolicited advise, like "isn't she too big to be carrying around the store?" Will it be filled with comparisons"So-and-so was walking at 11 months. 11 Months! How old is your daughter?"

But lately the insensitive stuff is happening...online. I mean, how naive of me to think the walls of my house could keep this stuff out.

Case and point, another SB Mommy found knee pads on Amazon and shared the link with everyone on our *Online Mommy Support Group* It was an awesome find. I've been saying for the past few months that Emily needs knee pads. Her little knees are rug-burned and sore, and it's only going to get ten times worse once she has shorts on. Or once she's outside on concrete. And keeping her in pants won't work (one of the meds she's on causes overheating).

So I went on over to Amazon, and before investing 20 bucks in them read the reviews. First the good ones. Then I went to the 1-start reviews. There I found this:

"This company must be in kahoots with Walking Wings to corner the market on one-time use, money wasting produced geared to overprotective parents with nothing better to do than worry about jr. This time, it's the impact of floors and carpets on knees. If a child is crawling enough to damage their knees, then they should start walking. By the time my son's knees were red from carpet burns, he figured out walking was faster and less painful. Ta-da, a three week preemie walking before 12 months. Use the money for something important, like a college fund."

This *Product Review* by Charles H Randall...oh wait, it's not a *Product Review* at all. It certainly doesn't review the durability or use of the product. Instead, it's a parenting review. This guy went out of his way to cast judgement on anyone who buys this product. He assumed certain factors, and then doles out parenting directive. Apparently, if Charles' kid can do it, then shame on everyone else who can't. And shame on their parents, too, because we don't know how to parent. The implication he has here is, if we were *good* parents, or we had *smart* kids, we wouldn't think twice about buying these and our kids would just learn to walk of their own. That must be a pretty nice bubble this guys lives in. It doesn't even dawn on him that some kids can't walk. It's not even on his radar.

You know what, Charles? You are right on some points. I am a bit overprotective. Like when my kid won't stop vomiting and we rush to the ER to rule out a shunt malfunction. And no, I don't have anything better to than to worry about my baby, like after she's choked during lunch again and I worry, Is this it? Has her asymptomatic Arnold Chiari malformation become symptomatic? Or spending endless hours at night worrying about her kidney reflux.

I guess in this guys eyes, all these things disqualify me for his parent-of-the-year award. But you know what? He can keep his award. There are worse things in the world than being an overprotective parent...like thinking you're the world's best parent...or sitting on your high horse casting judgment on everyone else...or not realizing that people with disabilities or delays are part of the world.

Medicaid "Redesign" Plan

This morning while we were patiently waiting to see the performers of "Priscilla Queen of the Dessert" on The Today Show, there was a commercial urging Western New Yorkers to call their legislators and "Say YES! To the new medicaid redesign plan." What caught my ears was this statement, saying that cuts will be: "greatly improving patient care...".

Really, I though to myself, and thus began the conversation in my head. The Medicaid redesign team made 70 recommendations to Gov. Cuomo. If you are interested, here they are. Unfortunately, many of the recommendations, such as cuts to physical therapy, occupational therapy, speech therapy, and medications, seem to be a veiled attempt to push services OUT OF THE INDIVIDUAL HOME, forcing individuals into hospitals and nursing homes.

I mean, I get it. Funding has to be cut somewhere. But if I could be so bold...I'd like to point out just two aspect of the Medicaid Redesign Team's proposals that burn me up: "Increase coverage of tobacco cessation counseling", and way down on the list, number 4647, "Expand Managed Addiction Treatment Program", which refers to the NYC managed addiction treatment program. The expansion proposal is to increase the program's size three-fold.

Managed Addiction treatment Program (MATS) was a three-year partnership that was funded for $23,000,000. Yes, that's 6-zero's after the 23. Voluntary participants, in New York City, qualify for this program if they are a high-cost medicaid-eligible recipients...meaning, an individual used more than $30,000 or more in the prior 12 months on Alcohol and Other Drug Treatments. It provides case management, services, and also "wrap around" services...like child care, HEAP, food stamps, specialized employment services and so on.

I'm just doing some quick math, but a three-time increase is $69,000,000.

Lets just stop here for a minute. Some of you may not agree with me, but honestly it gets to me. It bothers me so badly I stay awake at night contemplating it.

You see, I nearly fell off my chair when I read this one. Just to be clear...supplementary services to my child with a birth defect, are going to be reduced; but services to people who participate in illegal activities, people who illegally purchase and illegal use drugs, are going to be increase three fold? I'm not saying this program should be cut. BUT, I am saying that if you are going to CUT funding to programs to support people with disabilities, I damn well expect to see cuts across the board, like to drug treatment programs. I don't expect to see people with disabilities pushed to the wayside (again), while other programs receive threefold expansion.

For anyone who might think cutting services a disabled person can receive in the home, and swaying services to nursing homes/hospitals/assisted living is not such a bad idea, read this article here, from last week's New York Times. Disgusting, and unfortunately a country-wide epidemic. I'm not sure how patient care is going to be "greatly improved" by pushing even more individuals into a broken, often unregulated world where mistreatment and abuse run rampant.

As a parent of a child considered *disabled*, I am acutely aware of how important independence is. We receive a Home and Community Based Waiver through Medicaid. It was created essentially to help people keep disabled individuals in their home, versus putting them into a nursing home or assisted living. It covers some medical costs that our insurance doesn't/doesn't fully cover (ie, catheters). It covers essential things that without having, we would not fully be able to support Emily in our home. Chris and I do not qualify for medicaid, or benefit from this waiver in terms of our health care. It is only Emily who does, and it covers what our primary insurance doesn't cover for her medical needs. We do not receive any "wrap around" services.

It's also worthy to note that Gov. Cuomo has proposed a 10% cut to Early Intervention, which is how we receive therapy services for Emily, from birth-age 3. I find this very perplexing. Aren't these costs just going to be incurred later in the school system (an already crippling system, thanks to Gov. Cuomo's 1.5 billion dollar cut to school aid. He estimates an average of 2.7% per school district in cuts, which he stated could be offset in one way by "rooting out inefficiencies") If a child doesn't received the necessary services by the age of 3, that's just even more services he/she will need once they transition, services the local school district then has to incur! The Assembly has restored the funding here, but the Senate has accepted the 10% cut.

Sometimes, I really feel that politics and government and much of the medical community choke people with special needs. They still remain one of the most oppressed groups of people in the world, particularly here in the US. I was never aware of this, perhaps I never cared to be, prior to having Emily. But now it's my job to be aware of it, and each time I turn over a rock I'm even more disturbed by what I find. I often listen to Clapton's "Change the World" and think about Emily, think about all the people with Spina Bifida. I think about purpose, and the positive change that can come. But sometimes when I see the muck of the things outlined above, it really darkens my rose colored glasses.

That's all for now. I have a few things to do in order to get us ready for Emily's Kidney Ultrasound and Voiding Cystourethrogram this afternoon, like clean off my glasses and make sure they are rose colored again.

Spread the Word to End the Word

I want to mention that today is Spread the Word to End the Word day.

I regularly follow this blog, which is always insightful and thought-provoking to begin with, but today's post speaks for itself. If you could please take a moment and read this post on the use of the word *reta*d* and the efforts to stop its use, I would appreciate it.

Using the r-word is demeaning and derogatory to people with disabilities, with different-abilities. It is offensive to those who love them. It is offensive because in many cases, the person in whom that r-word is referring to, is someone who cannot defend themselves. It is offensive on so many levels, yet you wouldn't believe how often the word is used and by whom the word is used.

When used as a synonym for stupid, idiotic, dumb, dopey, foolish, thick, dull, dim, obtuse...slow...and weak, the r-word serves to call people with any type of different-abilities all these things.

Some people think it's cool to use the word. Some people get very defensive when you point out how that word hurts. Some people pull out the "freedom of speech card". I get it. We all have the right to say any word.

But that doesn't mean we should. Get it?

Some people say it's just a word and it doesn't mean anything. But the people whom the r-word "refers" to are a wide range of people who have had, and continue to, fight for everything. Fight for rights, fight to live, fight for basic necessities, fight for things we take for granted every day, fight for an equal education, fight for access to the world, fight for fair treatment, fight to stop abuse, fight for a voice, fight for equality, fight pity, fight to live with the same respect as we all do. So it means a hell of a lot when someone continues to oppress and demean by using the r-word.

Sometimes it's hard to do the right thing. Sometimes it's not hard at all. Sometimes people will make it a hard thing, because they don't want to change. Because hurting someone, demeaning someone, belittling someone, insulting someone, hurting someone--is apparently the cool thing to do. Maybe you don't use the word yourself...but I bet you've heard someone use it. I hope you chose to eliminate it from your vocab. I hope you choose to speak up the next time you hear/read it.

All you have to do is, choose not to use the r-word. And if you choose to do more, you can tell people, politely, when you hear it, or read it, that it offends you. That it oppresses and victimizes different-abled people, and in no way is that cool.

When I hear it (like, when I heard a cashier at a local store use it two weeks ago), or when I see someone use in a FB post, I say to that person: "Using the r-word continues to oppress and serves to dehumanize people with mental and physical disabilities, such as my daughter. It is demeaning, and I find it offensive."

I'm sure we can all find other ways to express our thoughts without insulting an entire population in the process. Really, what could be easier?