NYC Marathon 2011 - In the Books!

Hopefully you stopped by the Babykeicher Blog to read the marathon recap! But there are a few more details I'd like to share. Important ones...like what we were wearing!

This is Emily's Team Shirt - thank you to team member Mandy and her family for embroidering the shirt. I might get a little frame for it, like how signed professional jersey's are framed? Too cute to leave it in her drawers.



You'll see my team shirt below, but here's a little detail - a dragonfly on my shoulder. I had the same one on last year's shirt.



This was an ad outside the Expo on Friday. It was great to see all the billboards and buses and signs around the city. It really helped grow the excitement for the impending race.





The marathon attracts a high volume of runners from around the world. In 2010, Italy had the highest volume of runners with 3780. France had 3244 runners, Germany had 2369, Great Britain had 2367, Netherlands had 1571, Canada had 1500...and the list goes on from there





On our way out of the expo I noticed the forecast - a beautiful day on tap for Sunday!



The first New York City Marathon, though, was a humble affair. In 1970, 127 runners paid the $1 entry fee to NYRR to participate in a 26.2-mile race that looped several times within Central Park. Fifty-five runners crossed the finish line. Six years later the course was redrawn through all five New York boroughs, and it had 2,090 runners lined up at the start for the chance to run from Staten Island through Brooklyn, Queens, and the Bronx to Manhattan.

In 2000, NYRR added an official wheelchair division to the marathon. Now the ING New York City Marathon has grown to become one of the most competitive wheelchair marathons anywhere in the world, with more than 200 wheelchair and handcycle athletes. In addition, a wide variety of ambulatory athletes with disabilities participate.














I came in 32,635 place; placed 9913 in my gender, and 1862 in my age (and, next year I move to the next age bracket, which hopefully helps my placing)

My overall pace was 11:05 (goal was 10:41. I had run all my long runs at the 10:41 pace, including all my "longer long runs": 2 22-mile runs, 2 20-mile runs, and 3 18-mile runs ). Here's the breakdown of my pace along the course:

5K 10:43.90 - I expected to be a few seconds off ace the first two miles by conserve energy, not going out too fast, and focusing on navigating the thousands of runners around me.

10K 10:47.76 - too far off. I made a conscious effort to make up some time, but conservatively.

15K 10:44.48

20K 10:45.10

13.1 miles/half point 10:46.41 (2:21:08 actual against a 2:19 goal) At the half way point I made the decision not to make up the three minutes I was off. I knew the Pulaski Bridge was coming up (which was fine/no biggie), BUT, the Queensboro was right around the corner at about 14.4 miles.

25K 10:49.72

Oh Queensboro. The elevation is not nearly as severe at the Verrazano. The Verrazano reaches and elevation level of 250 feet just before the 1 mile mark. But it doesn't seem bad at all... when you have well-rested legs carrying you AND the adrenalin of starting the race. By mile 14...well, your legs/body is getting tired, and mentally you are in a different zone. Max elevation on the Queensboro is 140 feet. And the downhill portions is killer - a steep decline, and sharp turns. By the time I cruised onto First Avenue, but of my calves were killing me. They felt like they had exploded and blown through my skin. I spent the remainder of the race running through the cramps and pain.

30K 10:53.98

35K 11:00.19 Despite the fact that I was really running hard, the Garmin was not my friend and I saw my pace time get higher and higher. BUT, I knew I was pushing hard, giving it my all.

40K 11:03.53

26.2 miles 11:05 (4:49:59 finish time)

I finished right in the middle of our team. Team member Mandy had the fastest time of 4:01 (9:13 pace!) and my sister Katie was came in at 4:13. Congrats to both of them on some amazing times!

From there, I finished behind two teammates who had finishing times of 4:42 and 4:45. The Monday after the Marathon the NY Times published the names of all runners who finish under 4:30, but often they will publish later times if they can still meet the press deadline...and this year they published more times and I made the cut! It was awesome to see "E. Keicher 4:49:59" in print!





The event attracts more than 2 million spectators and is broadcast internationally. It produces about $340 million in economic activity for the city according to a study produced by the New York Road Runners, which hosts the event.




Marathon Monday, 6:30 AM. Reflecting on the race. Trying to grapple with knowing all that hard work was for yesterday...and it's done. Mixed emotions: elation that it's over, and that I hit sub 4:50. Sad that it's over, that the moment has passed. Thinking about next year's marathon.








The financial impact from the NYC Marathon is estimated to be 300 million. In 2010 $30.8 million was raised for 86 Charities.

Heading back to Hoboken after Marathon Monday. Thinking about the 6 hour car drive home...



Line 'em up: a bevy of Asics Gel Kayano's. Last year's marathon sneaks, this year's training pair, and the second training pair (and the ones I wore for the run), and my new kicks on the right.






The picture on my header are the pair on the right, purchased at the Expo. These limited edition shoes have the sweet "NYC 2011" markers on the back, the marathon emblem on over the laces...



And a map of the course...always just under your feet, even once the marathon has passed.



So we drove back home Monday and Emily and I took the week off: from physical therapy, from aquatherapy, from speech, from occupational therapy, from doctors appointments, from cleaning, from running, from spinning (well, I did run Thursday and Saturday and went to 1 spin) and just hung out. We baked a lot, and had a nice celebration dinner with my Mom on Tuesday.

It was glorious.

And Saturday night Chris and I went out, for an indulgent evening. I was decked out, new dress and all...and wouldn't you know it, half way through our dinner at Tempo they seated a table across from us and the woman had on the same exact dress (hers was minus the belt...). What are the chances!






We had 9 team member this year on Team Take That!, and each one crossed the finish line. Collectively we raised $51207.65 for the Spina Bifida Association. The team had 5 parents who have children with Spina Bifida. What an amazing testament to Emily, Joshua, Max, Hayden, and Brenden, about how much they have inspired and motivated us and friends/family. Considering the average age of the kids we represented was three and a half, that is quite an accomplishment for these kiddos.

It makes me happy to think about just how much they will have accomplished by the time their average age is 20...or 55...or 80.

I want to say Thank you to everyone who donated to our fund raising. We raised $6450.20 in honor of Emily. So many of you gave, and gave generously, to show Emily that her cause is am important one. I want to say Thanks to Chris, and my Mom, who put up with my ridiculous training schedule and demands, for helping with Emily so I could run and go to the gym; and for putting up with the marathonmarathonmarathon talk the past 5 months. I want to say thanks to Team Take That! for working so hard to raise this money, and give up their time and energy to train for the marathon, raise money for, and educate other's about Spina Bifida.

In just 2 years, $85,000 has been raised for the SBA through the marathon efforts. Thank you to my sister Katie, who was the brain child behind all this and enabled this to happen. As a result of the success of the NYC Marathons, the SBA is now an official charity partner for the September 2 2012 Kauai Marathon. They have an unlimited number of spots (which is awesome; for NY we have a limited number and essentially have 5 spots permanently taken) - if you, or someone you know, would like to run the full (or half) Kauai Marathon this September on behalf of the Spina Bifida Association, please email me (elizabeth_webb1976@yahoo.com) and I will answer any questions and put you in contact with the SBA.

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?

MOMS Trial

So a few weeks ago the results of the MOMS trials came out. For those of you who don't know, it was an NIH-sponsored clinical trial where three hospitals were randomizing qualified mothers to either pre or post natal lesion closure. The objective was to determine if closing the lesion in-utero provides a benefit versus post natal; and, if it provides benefits, what are the potential risks and do the benefits outweigh the risks?

In the interest of full disclosure, you should know Chris and I went through the rigorous and emotional process of this trial consideration at Children's Hospital of Philadelphia. We met all criteria, and then had to decide if we would randomize or not: if we would take the next step, and be randomly chosen to either undergo in-utero lesion closure 3 days later, or have the traditional post delivery closure. We opted not to participate, and respected the study too much to proceed and possibly eliminate that slot for another couple who were more willing to participate.

Initially I was very excited to see the press on Spina Bifida when the results were published a few weeks ago. Then I started reading the press and I was agitated at some of the verbiage. Words like *fix* and phrases like *fetal surgery is better* and *novel surgery reduces birth defects* were abound. While the study showed promising results, in my eyes it mostly showed the need for more research. By no means was anyone *cured* of spina bifida, or of the medical complications and developmental delays that accompany it.

I spent a few days thinking about it all, then decided I couldn't squeeze in worrying about this. I also considered that the Spina Bifida community is small. And I do believe you have to tread carefully, because in no way would I want to offend anyone. But the whole thing has been lurking in the back of my mind. More and more I am hearing people say things that equate fetal surgery with best possible outcome, and I just don't feel like we have enough information to guarantee that.

In a very brief nutshell, the study results note that in-utero closure reduces the rate of disability but increases the risk of prematurity. It reduces the need for a shunt, and improves mobility. It increased premature birth (children with prenatal closure were born at an average of 34.1 weeks, children who had closures after birth had an average gestational age of 37.3 weeks, by scheduled c-section). 20.8% of the preterm babies experienced respiratory distress syndrome. The study also found prenatal closure increases the mothers risk for thinning or tearing of the incision. You can read the entire finding here.

The first primary outcome being looked at was, whether by 12 months, the child "had died, or had placement of a shunt or required a shunt" To me, these are two very big differences....um, death, or a shunt. But okay. The second primary outcome was a composite from a test of mental development and assessment of motor function. For the first primary outcome, death or shunt, the occurrences were 67.9% in the prenatal group; 97.9 in post natal. As for the second outcome, the prenatal children scored "significantly higher" than post natal. I don't know what this means...significant is pretty vague. What's significant to me isn't significant to someone else, and I'm also not familiar with the testing used. But I do know, at 30 months old, a child's mental capacity isn't done developing, and either is motor function. As for motor function, forty-two percent of the toddlers in the fetal surgery group could walk without crutches or other support versus 21 percent in the other group. While the study doesn't seperate death from shunt in the percentages, I think it's worth noting that two children died from the prenatal group, and two children died from the post natal group.

In-utero closure is now available as an option to expectant mothers.

But I still have many unanswered questions, and for me it seems the answers are necessary (ie, more research is needed) to really equate prenatal closure with the *best possible outcome* First, the long term study on these outcomes is not complete. What are the outcomes in 15, 30, 60 years? The very first child who had in-utero surgery is 13 years old now, had surgery at 29 weeks gestation in 1997, and he uses a wheelchair, has neurogenic bladder, and has a shunt. I think it's important to see what the majority of in-utero closures long-terms results look like.

Second, many women were excluded from the study by way of other medical concerns (obesity, twins, other medical concerns, and many other medical factors, such as length of cervix...). So we have no idea what prenatal closure would mean for these women in terms of health risks/death posed to them by having this surgery.

Third...it still seems that a comparison of prenatal to postnatal closure isn't really comparing apples to apples. No one knows what the diagnosis will be for a child with meylomenengocele spina bifida in-utero. I other words, they cannot tell you while you are pregnant if your child will need a shunt. If they will walk, if they will need assistance, what their motor function will be, what their mental capacity will be. So to look at a child who had prenatal closure and say that child has a *better outcome* then a child who didn't begs the question (for me, at least), how do you really know? No one knew what that child's outcome would have been, pre or post natal closure.

Forth: what's the impact on the bladder and bowels? Because for me, that's the kicker. Findings will be forthcoming, according to study literature.

My worry is...that the general public, and parents who receive this diagnosis, thinking this surgery fixes Spina Bifida. For me, this study shows that more governmental funding and focus needs to be put into Spina Bifida as a whole. What causes it and how do we prevent it (and don't EVEN get me started on folic acid because along with myself, virtually every other mom I know who has a child with SB took folic acid so there must be some other cause...), how to we eradicate or fix the neurogenic bladder and bowels (which is, in my opinion, and a shared opinion by many adults with SB, is the biggest health complication of spina bifida), how do we capitalize on science and the regeneration of nerves to improve things like walking function, motor function, how do we improve shunts and their longevity/how do we find better technology, how can we educate the world that this is a manageable condition and abortion is not the answer, and how do we start changing the world to stop looking at people as *disabled* and start accepting them for who they are?

This study was a huge stepping stone which hopefully opens the door to discourse and funding and research to get all the pieces of the puzzle and to put that puzzle together.

But we can't stop here. We still need more. So much more.

Party Shoes

This week on the Spina Bifida babycenter group there was a discussion about the emotions we are hit with when another child reaches a milestone our child won’t/is very behind on. I had already been festering from a blog of a *typical* child and the *complaints* the perils this mom was going through. Dude, I thought, I’d give anything to be so fortunate as to struggle with (Fill in the blank - potty training, for example).

Maybe festering isn’t the best word. Let’s try it again.

I’d already been pouting (yeah, pouting!) earlier in the week over the blog. I mean, I get it. I know that we are very fortunate and that there are much harder challenges we could be facing. It was just plain old jealousy on my part. Mean, green-headed jealousy. And that only made me feel worse.

But all this was taking me back to, of all things, something said to us at our first Spina Bifida Clinic when Emily was 2 months old.

Clinic, for those of you who haven’t had the pleasure, is a full day visit where you see a general nurse practitioner, physical therapist, neuro resident/nurse, then neurologist, Urologist resident/nurse, then urologist, orthopedic resident/nurse, then ortho, and social worker. A fun day for all to be had, especially when you add in about a 30 minute wait between everyone.

I remember the first visit for only one reason: what the PT said to me. She said, “Now mom,” (as if I didn’t have an actual name…but this is common practice there, apparently no one can look at your last name on the chart or pay attention when you introduce yourself), “No party shoes for her. Ever.”

I don’t remember anything else about the visit, but I remember the moment she said this clear as day. I remember what the room was like, what she was wearing, what her eyes looked like as she glared, scolded me for something that *might* occur. I believed she knew I wanted Emily to have party shoes. And I thought she delighted in taking that away. She was insensitive. She didn’t understand what it felt like to be told your child, essentially, can’t do a basic thing that virtually any mom of a girl would anticipate: playing dress-up. Having a tea party. Going to a party. Clomping around in a pair of your mom’s old shoes.

And frankly, on top of aaaalllllll the other things we’d been told Emily might/ shouldn’t/ can’t/won’t do, I just didn’t want to hear any more, least of all right then. She was 2 months old. I’d just spent 20 weeks of pregnancy worrying and stressing about everything. Our future was a huge question mark. Emily had just had 3 major surgeries (2 brain surgeries), had only been home a month; I was failing at breastfeeding, and I was a hormonal, worried first time mom. I was sleep deprived, paranoid (as in, measuring Emily’s head circumference every morning…) and this lady had the nerve to say “no party shoes”?

Were they now going to infringe on my kids playtime? Her imagination? I’d been saving retired party shoes for 5 years. I’d been working for 12 years and had a basement stocked with dress clothes and amazing shoes. We were definitely going to dress up, and have parties, and dress up with friends and cousins when they came over, and make up routines to Circle In The Sand by Belinda Carlisle. And, I definitely planned on Emily wearing cute non-dress up shoes. Ones that matched her outfit. Little white patent-leather ones on Easter. Red ones on Christmas. Uggs for our Buffalo winters.

This “no” represented yet another stranger in our lives telling us what we can and can’t have. Another medical professional laying down the rules, dictating what Emily is and isn’t capable of doing. And for me, this incident stands out because that day, it was a stark reminder of all the things I was supposed to give up. Dreams, day dreams, hopes, wishes. So many things I had planned on doing with Emily. So many things I was supposed to do, as her mom. So many things she deserved the right to do.

So sometimes, these little reminders pop up when I least expect it, and try and drag me back to that dark place.

Incidentally, we love party shoes around here. My mom and sister search high and low for adorable shoes that fit over her afo’s, or that she wears without afo’s on. Little red shoes with hearts on them. Her first pair of Stuart Weitzman’s. Ugg boots that she can wear over her afo’s, or without afo’s. Ugg maryjanes that fit like a glove over the afos.

And Emily loves wearing my party slippers.

Leave it to Emily to pull me out of the dark and remind me we make our own destiny.

Book Review (and Soapbox)

My Baby Rides the Short Bus: The Uabashedly Human Experience of Raising Kids with Disabilities

Edited by Yantra Bertelli, Jennifer Silverman, and Sarah Talbot
ISBN: 978-1-60486-109-9
Copyright 2009 PM Press

This is a collection of 40 essays, contained in 6 chapters each with their own brief intro. The book also contains a glossary of terms and a resource section, both very helpful.

The formalities aside, I'll get right to the verdict: Highly recommended.

It is reported that 17% of children in the US have special needs. The parents in this collection, for me, hit a nerve. I felt like I knew them, and they knew me, and there was something very comforting in that. While the special need may have been different (although there was 1 essay from a parent with a child with SB) than the needs Emily faces, the struggles seems to be universal and relateable across special needs lines.

17% actually seems like a good part of the population, yet I struggle to SEE these 17% out in the world. Most times I feel like it's 1%. I don't remember knowing any special needs kids growing up, and I don't remember seeing them in high school. Suddenly though, I am the parent of a special needs child and I'm acutely aware how *different* and marginal the special needs community (special needs individuals and their parents/caretakers/siblings). In the foreword, the collective authors noted "We are remarkably absent from the public eye. When we are in the media, it's usually about a miracle cure that made some starlet's child more normal...As parents of differently-abled children, we are often put on pedestals. People wonder in awe about how we cope, or hand us platitudes about how we have landed in a different but wonderful country where we need simply to dream new dreams for our special angel children." (p. vi)

I've always been somewhat of a pessimist. I know there is an ugly side to the world. And once I entered the special needs arena I learned just how ugly it is. Sometimes people don't want to acknowledge this. Some people only want to hear the rosy parts. This is not one of those books. This collection, for example, exposes the realities of what it's like to be denied for things your child needs, how painful it is to hear assumptions about parents and kids with special needs, and how complicated things really are. Below are some exerts:

"I have learned a lot about what I don't know. I don't know where Lucy will end up for preschool and how her classmates will receive her. I have learned that I will probably find defeat in the Individualized Education Program process numerous times before I learn the ropes and how to fight. I have learned not to scream 'Fuck you!' every time I open a condolence card or hear 'I'm so sorry.' I have learned not to say 'Good thing for you that you were lucky enough to have all of your children born healthy and normal every time someone tries to say 'Special kids get special parents.' There is nothing special about me. I challenge people who say this to think about what they would do. Would they really just quit? Of course not, they would get up the next morning and feed their kids breakfast, if they were lucky enough to have a kid who could eat by mouth without a feeding tube, and they would go to therapy appointments, and they would do their best to parent even when they were at the end of their rope." (p. 5)

"...when my son was an infant, other mothers would bounce their healthy babies on their laps and say, thinking it a compliment, 'I could never do what your doing.' What I heard was: I'm not like you. My baby isn't like yours. You're not normal. I knew even then that any chance occurrence could push them into my situation, and that they'd endure, just as I had. Besides, what choice did I have?" (p. 190)

"I'm crying by the second page, but I keep reading the book aloud. It's called Nick Joins In, by Joe Lasker, about a boy in a wheelchair who prepares to go to school for the first time...The teacher in the book lets the class ask the boy questions. Why are you in a chair? Why do you wear braces? Why can't you walk? My voice breaks and I heave as I read but I can't stop. Can't stop reading it aloud. Can't stop crying. Not little tears but full body sobs. Alligator tears. Dinosaur drops.

As I read on, I wonder why the teacher doesn't let the boy ask the other kids questions when they are through interrogating him. It's only fair. As if any of this is fair...

I want you to know sometimes, you're right, it just sucks. I'm not a big fan of playgroups or clusters of moms. I hate hearing birth stories, especially the easy kind. The curious stare of a baby can make my stomach drop. I clench my jaw when I hear: 'He just got up and started walking at nine months.' It's not that I don't like women; I miss the camaraderie of a girls' night out. It's just that I can't play along anymore. I can't share anecdotes. Can't compare. And I don't want to hear how strong I am. How I'm the chosen one.

'Let me tell you what my son can't do,' I want to say when the conversation turns to the accomplishments of our offspring, which it always does. As if the moment we give birth or adopt we forget about our interest in art, literature, politics, relationships, sports, sex, or gossip, and resort to comparing our babies' bowel movements. We babble about head movement, tummy time, and noises that resemble words. We all do it, even those of us who still can't believe we're mothers.

But some of us can't keep up with the conversation-and its not that we live in a different country, we live next door to you, in the house you don't want to look at because you can't imagine living here. You can't imagine being me, a mother of a boy with wheels, a boy who can't fully see. You want to either pity me or place me in a tower. You want to think this was God's plan. Or that my son chose me for my natural parenting abilities. You want to find special traits about me to put distance between us so that your next child could never have special needs. Never. Not you. You couldn't do it - you think." (p. 176-178, from "A View Through the Woods", my favorite essay from the collection for it's honesty and beauty)

"The advice rolls in regularly, the panacea of drug, alternative, and other treatments. We try everything. We visit psychologists, shrinks, neurologists, nurse-practitioners, herbalists, massage therapists, homeopaths, social workers, general practitioners, Asperger specialists, occupational therapists. The Ritalin, as well as some other drugs, make him violent and depressed....

There is no answer. But I can't stop looking. Not when I tuck my kid in at night, and he says, 'I'm just a bad person.'

'No, you're not. You're a good person.'

'That's not true. Somethings is wrong with me.'

But it's not your fault, I want to scream into his bones. You did nothing to deserve this." (p. 249)

"Sometimes Olivia's challenges are nearly invisible...on these days, I sometimes yearn to pretend I am not the parent of a child with special needs. I yearn to just 'pass' as any other parent out at the park with her three young children, to rest in denial for just a moment and enjoy the less intense challenges of plain old parenting. Of course, paradoxically, on these days I am also almost eager to share. I want to shout to the playground audience that this child has only been on the planet for three and a half years but has conquered so much in that short time. I want to hold her up for a round of applause (that would surely trigger a sensory meltdown!) and declare 'victory!' and demand that her medal be proudly bestowed upon her." (p. 257)

As a parent of any child, you know your child best, know their needs, know what is best for them. As the parent of a special needs child, often you lose this privilege. This was a theme I saw in many of the essays and I related a lot to that. Suddenly everyone else knows what is best for your child. People who have just met your child know what's best. People who won't make eye contact with you or your child know what's best. People think you should have a smile on your face all the time. They don't want to hear what is really going on, and how much your heart might really be hurting. Dozens of people come into your house each week and judge your child. They JUDGE your child. Their development...your ability to parent...the selection of toys and books....how you spend every moment with your child. Your life is exposed and open to strangers. People offer advise on, or downplay, your advocacy struggles and what the experiences are/will be like, even though these people have no direct experience and are not parents of children with special needs. All these uglies are part of the real experience of special needs parents. The collection here takes these head-on with no sugar coating, no glossy over-lay. Just an honest selection of real experiences and emotions from parents of special needs kids.

Hopefully you go out and pick up this book. What's nice, too, is that it's essay form. So while you're waiting for the physical/speech/occupational/aqua therapist, or cleaning before they come over, or while your waiting in the doctor's office, or anticipating that IFSP/IEP meeting, or the medicaid review, or doing your follow up therapies, or squeezing in some *fun* time with your kids, you can read an essay. Voila!