Why I am a Runner

Before I sit down and do a race recap for NYC, I wanted to recap how I got here in the first place.

The NYC Marathon has had a special place in our hearts for some time now.  My sister, Kathleen, has been running it forever.  We have been going to NYC the first weekend of November to cheer her on since forever.  I was about 6 weeks pregnant with Emily during the 2008 NYC Marathon, and we were celebrating Katie's accomplishment that Sunday evening when Chris and I told my mom and sister we were expecting.  We said I was doing a marathon, only this marathon was a bit longer than 26.2 miles and there were no medals at the end.  Instead, we would have a baby.  

Guess What?!?! Post Kathleen's running of NYCM 2008, making the baby announcement!

The following year, 2009, when Emily was 5 moths old, I was wearing her around the city, and we were in the crowds of millions cheering on Auntie KK. 

Auntie KK and Emily NYCM 2009

The next year, 2010, when Emily was 17 months old, she was out there again spectating.  Only this year she she was cheering on her Auntie KK...and cheering on her Mommy.  Both Kathleen and I were running for Team Spina Bifida, but more importantly we were running for Emily.

NYCM 2010

 Last weekend's NYC Marathon was my 5th marathon in exactly three years.  I have done 13 half marathons. Since July 2010 (when I started training for the 2010 NYC Marathon), I have run 2376 miles, have gone out on 407 runs, have run for 413 hours, 35 minutes, and 23 seconds.  And while my type-A personality relishes in analyzing the spreadsheets and the numbers, their is only one single reason I am a runner today: Emily.

The grueling task of pushing my mind and body during a marathon, even at its most awful and hardest (ie, this past Sunday...), is easy.  It has nothing on what the emotional and mental agony was, post-week18 of pregnancy till delivery.  Training and running marathons reminds me that I have endured so much more, and am capable of more than I give myself credit for.  It takes me back to the darkest moments of January and February 2009 when life stopped for me after the SB diagnosis, and it reminds me that I found out how strong I was by moving forward.  Pushing onward.  By choosing not to quit.  By believing in Emily's future.  We chose not to give up on Emily, but I also chose not to give up in myself.  Every marathon reminds me of that, and gives me practice to endure again.

I started running for Emily so that she would see I don't give up on myself.  I wanted her to see that her family has dedication, perseverance, and discipline in what we do.  Because we ask her every single day to persevere through therapy, and simple tasks like walking in the grocery store.  She is on a disciplined therapy schedule, a schedule for meds and daily medical responsibilities, all to ensure other aspects of her life are easier.  At 4 years old we ask of her more dedication, perseverance, and discipline than what a 4-year old should be asked of.  How can I not mirror what I am asking of her, in my own actions?

But while I am running for Emily, I am also running for myself.  I love running.  It makes me a better person. It makes me happy.  It gives me a chance to decompress, find clarity, and make sure I am at my best. On days when I can't run, I am just....off.  Running has become an integral part of my daily life, an essential part of who I am.  In this rat-race based world, running gives me pause about what is truly important: doing something you love, and bettering yourself for yourself and family, not because of anything or anyone else else.  Running is a very personal thing, very introspective...it's not about competing with anyone other than yourself.  It's not about being better than anyone but yourself.  It's not about proving anything to anyone but yourself.  I run to do better than my last run, to break a previous race accomplishment, to run a harder course.  It lets me gauge how I am doing against the only person I should be comparing myself to, and that is me. 

As much as I have been running for Emily, along the way I realized it was also for me.  And I owe Emily big time, because she was the one who put me on this journey.

I haven't blogged in a while.  Writing used to be my vice and running was a hobby, but now running is a vice and writing is that thing I used to do in my spare time.

Surely by now you have read the Disney GAC changes.  I'm not even weighing in on the changes until I see what the feedback has been from SN families once it rolls out Oct 9.

But because of the changes, a whirlwind of blogs and magazines and news outlets have run the story, and a FURY of responses have come in.  Think things are going well for the advancement and lives of people with SN or disabilities?  Think again.  There is still a deep rooted sense of discrimination for special needs (SN) and people who are disabled.  It's like so many people were thinking all along SN families are "entitled", and this Disney announcement was the perfect venue for them to voice their opinion. Is this really what people think? So many things are heartbreaking on a daily basis for SN families, but to know behind those silent faces staring at us are people who think we have a sense of entitlement? Ouch.

Here are some comments reminding SN families that even though they may want their child to have a MOMENT of normalcy and inclusion at the "Happiest Place on Earth", the reality is, they continue to be marginalized and viewed as Other (the following quotes are taken from the Parents FB page in response to the Disney changes.  For more appalling feedback, check This out or This): 

"I do feel there is a point to the 'if your child can't wait in line/be in a crowd, stand for long periods of time' argument , then maybe Disney isn't the right place for your family."

"I understand that children with special needs have just that- Special needs. But on the other hand, don't put them in a circumstance that would be any type if hardship on them."

Most negative comments came from people who don't have SN kids....because, you know, people who aren't in your situation totally understand your situation.  And let's not forget how adversely affected "typical" kids are when an organization makes their facility accessible to kids with SN or disabilities.  I mean, it takes some nerve as a parent of a SN kid to make a typical kid feel left out when they see a child in a wheelchair doing something that typical kid isn't doing...

"I'm not saying that disabled children are easy to handle taking care of but dang... If they just went in a different way and didn't cut in line then that's cool but how would I explain to my child that another child cut in line just because he/she's in a wheel chair....?"  
 
 And quite possibly the most disturbing one:
"My children are not diagnosed with any disability. BUT if I had my 4 and 3 year old with me do you really think it would be easy to stand in line that long with out them giving me a fit or tantrum? Ha! I wish...I know living with a disability might not be easy but nothing in life is. God gives you only what you can handle, that shouldn't mean just because your child is different than mine, as mine are different than yours, you should have a right of way if we were in line first. If the rolls were reversed and my child cut in front of a disabled child how would you feel? Exactly...no one child is more important than the other only difference is they may look different and do things differently but that is all children....even adults."

SN families are subjected to a ridiculous amount of scrutiny and judgement every single day. SN Parents spend their whole lives, day after day, justifying every single thing they need, want, or do for their child.  They have to justify, explain, and defend things to the school district, to the insurance company, to doctors, to therapists, to family.  And they have to justify, explain, and defend things to complete and total strangers. SN individuals and families are never "off limits" for public discussion (conducted by people who are not SN/disabled, and by parents who have "typical" children).  People stare, ask embarrassing questions, say hurtful things, and feel they have a right to weigh in on you or your SN child.  Last week at Wegmans, after 2.5+ hours in the store I told Emily she needed to put on her listening ears because we needed to get going.  As we started to walk away, a woman approached me, and in a very condescending tone told me I "needed to be more patient with my handicapped daughter".  Little did she know (since she was a stranger and it was none of her business) that we needed to get going so I could get home and cath her (since we cath while she lays down, and Emily is too long to use the changing table), so she didn't have an accident and so urine didn't reflux to her kidneys. 


I know a lot of moms (and dads!) who care for kids with various needs - I am a caregiver to a child who is disabled and has a medically complicated life. I also know that most caretakers are working tirelessly to make the world better and more accepting for their child.  We do physically challenging work, like carry 50+lb kids and their equipment.  We plan extra time in the morning to put on afo's.  We stay up much later at night to get that last cath in while their child is sleeping.  We research and visit places before hand to see if our child can access it.We plan errands around cathing and enema/ cecostomy/Mace requirements.  We watch our kids endure an immense amount of therapy and often miss "typical" kid activities.  We handle an enormous amount of bodily fluids and functions and tend to medications and medical procedures like nurses, and do it 24 hours a day 7 days a week 365 days a year.  

Yet you rarely see us sweat, or hear us ask for help.  We never show just how hard life can be.  We know you get farther with a smile and a brave face than with sadness and exhaustion showing.  So we put on a happy face for our children and the world all the time.  We put up with all the unsolicited opinions, the stares, the hurtful comments to our faces, the stupidity written by people who don't even have special needs kids, and we tolerate it.  If a SN individual or parent complains about the barrage of unsolicited opinions, questions, and advice bestowed to them every day, they are made to feel guilty.  We are told people are "well-meaning"  or that it is a "teachable" moment.  And maybe it's because we TOLERATE so much that we have done a disservice with what reality is like so often for individuals and family members. 

Perhaps this lack of insight into our lives has contributed to some of the sheer moronic beliefs held by some people out there, like people who think the Disney GAC is unfair to their own typical kids; people who believe Disney isn't the place for a child who is disabled; people who think SN families walk around with a sense of entitlement, expecting (and receiving!) oodles of free things and special short cuts.  It appears that while individuals and families are fighting for themselves or their children to have a place in the world, others perceive this as a greedy sense of entitlement.

So here it is: Yeah, all parents are burnt out.  Tired.  Stressed.  But parents with kids with disability or medical needs are probably feeling it ten fold. 

I love my kid.  I love her to death.  I would give her anything I could, do anything for her, just as any parent would.  But I would also give her my legs so she could walk.  I would give her my spine so she never has to have dethering spinal surgery.  I would give her my head and brain if it meant she would not have hydrocephalus, need a shunt, need brain surgery, or have to face shunt failures. I would give her my spinal nerves so she could have typical gross and fine motor skills.  So she could go to the bathroom. I would give her my cerebellum if that meant she would have better balance, no choking issues, and never have to face decompression surgery.  I would fight to the death for her spot in a world that tells her she doesn't belong. 

Often life is very isolating for individuals and parents of SN/disabled kids.  Among typical moms and kids I am always on the sidelines.  We don't just show up at the park and start playing with kids.  It is a whole process, seeking someone out who seems understanding, introducing Emily, explaining her equipment, and then staying by her side to help her access the non-accessible playground equipment.  Often I am unsuccessful.  Sometimes I want to scream "You can't catch what my daughter has!!!"  When I do manage to work my way in with other moms, I can't relate to their struggles, the things they worry about.  I often feel jealous....one person's troubles is another person's dream, right?  Listening to a mom complain that dance class is so long, or that toilet training is hard....I can't relate but I wish I could.  I grieve all over again.  There are no face-to-face support groups locally for SB.  Once a week I see other SN moms, at Emily's 30 minute aquatherapy appointment.  We chat and relate, and I am reminded of how hard life is: this week, a mom turned to me and said, of her daughter in the pool with Emily, "She wants to be a ballerina."  My heart broke, for her and her daughter, because I know what she was going to say next.  "She doesn't understand she won't ever walk.  And I don't know how to explain it."

I am certainly grateful for the therapy and work we have fought for (never been handed, but fought) Emily to receive.  But for every therapist who comes into our lives to work with our child on speaking, eating, throwing a ball, walking, balancing, I am reminded that I--as her mother--am not fully able to provide those things and give her that development.  So as irrational as it is, yeah, I feel like a failure as a parent on that front. 

If you aren't living it, please don't criticize.  Trust me, we are criticizing ourselves already.  Don't judge an individual or SN parent...there is a whole world there that you aren't seeing.  Don't question what we are doing.  Don't offer your unprofessional "professional" advise.  We have already researched it and either booked an appointment or ruled it out! Don't weigh in on how policy is "unfair" when it give accessibility to a child who is disabled.  Don't suggest we not go to Disney...or a particular school....or a park....or an event and don't try to convince us otherwise.  When you tell anyone their child doesn't belong, nothing you can say will convince them otherwise, and nothing should convince them otherwise.

Instead, try and understand what weighs on us.  Don't belittle our feelings or emotions or struggles.  Don't ask us to put on a happy face.  Don't tell us we are overreacting.  Instead, offer respite, offer an ear, or a break from the perpetual smile-while-fighting-for-my-kid.  Shortly after I was scolded for not being patient that same day in Wegmans, I saw another woman eying me up.  I avoided her eyes like the plague, just not sure if I could take any more.  But she followed me, and eventually physically touched my arm to get my attention.  She looked at me compassionately and said "I see you here often with your beautiful daughter.  I know she gets a lot of attention, that many people stop to ask you things.  I just wanted to say, Great Job, Mom.  She is so engaging and friendly, and you deserve credit."  And then she smiled and walked away.  I was in tears by the time she was done, flattered and so very thankful for the acknowledgment. One moment, one kind phrase, made me one rejuvenated mom.

Running at Disney: Taper

 

 

 

Post Rochester Half

I had a hugely exhilarating run this afternoon, which I needed desperately.  Between the cold and the wind and the snow, I haven't had a run I felt confident during since the Hamilton Marathon November 4th.  I had my fastest pace ever, 8:30.  It was just what I needed to push me through taper.

When I signed up to do the Goofy Challenge (you run the half marathon Saturday, then you run the full marathon Sunday) at Disneyworld's 20th Anniversary Marathon weekend, I thought I had the perfect plan.  I'd be at peak conditioning - I thought I'd only need a week recovery after Hamilton, and then I would jump right into a 7 week training plan with 38 miles, working up to 50, and then have 1.5 weeks of taper.  I would use the NYC-turned -Hamilton training as the Disney training...it would just be a 27 week training instead of an 18 week plan.

What ended up happening: essentially I took almost a month off.  While I was running, I was shaving off mileage here and there, and eating like I it was still marathon celebration, not marathon training.  My right hip, and my right Achilles were killing me.  November was a bust.  BUT, the weather was beautiful.

So I really buckled down in December, and true to form, Buffalo winter kicked in.  I really have no assessment as to how I'm doing.  Is the wind making the run harder?  My overall pace has improved, but I haven't kept up with the distances as much.  And I have had some awful runs (although all could be attributed to running in unplowed snow, or very high winds), and at this point Achilles tendinitis is raging (thankfully the pain subsides within the first mile, and then I only have to contend with it when I'm not running).  I have been doing back to back long runs (9 miles Sat/18Sunday, for example) to familiarize myself with what it feel like to run after a semi-long run but on some I cut things short: 7 miles one day, and then the next day's 14 was only 7.  And it doesn't feel good...during the second run my legs are heavy and I am tired.   I felt amazing during Hamilton - clearly training and leaning-up had paid off. 

Lessons learned: 1) at 36, the wear and tear of training for, and running a marathon, requires adequate recovery time before resuming a 35+mile/weekly plan 2) I need at least 16 weeks to train, 16 weeks that don't encompass another marathon 3) I need to reexamine time goals (oh, did I mention in my original plan that I thought I would PR at the Disney Marathon?!  Braahaaaah hhaaaa YEAH.)

So no immediate marathons planned after Disney.  Based on the canceled NYC Marathon, I have guaranteed entry to either 2013, 2014, or 2015 (with no fundraising needed).  However, I have to decide by January 10 and choose my year.  Right now it's between 2014 and 2015...this year is all about the Half's!  I'm looking to do 12 half marathon's this year, the idea being one per month but I'll have a couple months of none and a couple months of 2.  On deck: More mag's Women's Half in NYC (did this one a few years ago, it's Central park loops), Cleveland Half (also did this one a few years ago, great party atmosphere), maybe Cinci Half, definitely Buffalo Half, Rochester Half(I do this one every year)...so with these and the Half at Disney I'm half way to 12! Just looking for June/July/Aug/Nov and Oct races now.

As for full marathons...looks like Disney may be my only one of 2013 (*disclosure: I'll probably get the marathon bug and add a fall marathon...maybe Marine Corps?  Or Hamilton again?  Or do the full at Rochester?)

Because, running is the most wonderful time.  It's my vice.  It is a reminder to not take my physical abilities- like running - for granted.  It reminds me what it must be like for Emily to have to work every single day for something.  It reminds me I am stronger than I think.  It shows me how far I have some from the bleak darkness 4 years ago of hearing "your baby had Myelomeningocele Spina Bifida..." when I thought my world ended.  It keeps me healthy for Emily.  And it is my only ME time: I don't have to answer to anyone but me, I don't have to take care of anyone but me for those miles.  It is my daily rejuvenation, and I need that to make sure I am at my best for Emily.

Mother's Day

Emily and I, last weekend in NY

 Before I had Emily, my vision of motherhood and parenthood went something like this: Chris and I would be working parents, with 2-3 children, each about two years apart in age.  We would share our days over dinner, and spend our evening doing homework and sharing bedtime stories. I would give birth naturally, and nurse/pump at work. We would save money to pay for college for each kid, and take yearly vacations to some place new and exotic.  We would have family portraits taken that reflected our abundant joy. 

It was a commercial.  A cliche. 

Chris and I waited to have kids.  We were married for several years before deciding we were ready.  We had a financial plan for me to be home for about 6 months.  I always felt strongly that while motherhood was great, I also needed something else to define me (work).  When we finally felt we were ready, I expected to be pregnant in the blink of an eye.  After all, isn't that how it appears to happen?

Well it didn't happen.  And it took much longer than expected.  Much longer then planned.  And once we were pregnant, it was about 4 months of bliss in my fairy-tale cliche until Emily was diagnosed with spina bifida.

And that's when all my plans changed.  I spent the much of the remainder of the pregnancy in a constant state of worry, stress, and sadness.  We delivered her via scheduled c-section in another state, at a hospital 600 miles away.  She had 3 major surgeries in two different hospitals by the time she was 20 days old.  I thought her shunt was failing every single day.  A nurse was coming in the home to help us cath.  Emily wasn't latching on and I was failing at breastfeeding.  I was a new mom (scary enough), to a child who had a host of medical and developmental challenges.  We had no idea what her future looked like.  Everything that was familiar, like my relationship with Chris, was different and unfamiliar.  I felt like an outsider among other moms.  We lost friends and people who didn't know what to say or how to help.  I never returned to work.  I didn't finish my last semester of graduate work to earn my Master's in English. 

Instead, and over time, I became someone new.  Someone I hadn't planned on becoming.  Someone better. 

Emily, on her birthday, 12 hours after delivery.  My first time seeing her since the delivery, and my first time touching her.

I became Emily's mom. 

I owe Emily for making me a Mommy, and giving me new perspective on Motherhood, and on life.  

Motherhood is knowing what is best for your child and going to the ends of the earth to achieve it.  It is learning you are stronger than you ever thought.  Motherhood is taking on roles you never knew possible: a stay at home mom, a nurse, a doctor, a physical therapist, an occupational therapist, a speech therapist, a researcher, a fighter, a marathoner.  It is watching the strength of your own child with pure awe and amazement. Motherhood is learning from your child, and becoming someone new because of your child.  Motherhood is falling in love with a miracle. It is terribly heart wrenching, yet overwhelmingly beautiful at the same time.

Motherhood is learning that perfection is subjective, and what you once thought makes someone beautiful, does not.  Motherhood is learning things that seem important, like walking, are not what make someone important.  It is learning that endurance, hard work, compassion, kindness, support, and encouragement are things of true beauty and consequence.  Motherhood is seeing through your daughter’s eyes, what is important in life and what is not.

Motherhood is an honor.  It is a blessing.  It fills you with is pride.  It is looking in your child’s eyes and seeing her soul.  Motherhood is knowing there is nothing more profound than the love you have for your child. 

Thank you, Emily, for showing me the world through your eyes.  It is a much more loving, fascinating, beautiful place then I every could have imagined.

Emily and with her Godmother, my sister, 1 week old at CHOP

Chris, Emily at 17 days - the one day she was home her first month - and Chris' Mom

1.5 months old.  Emily with my mom, and my Grammy, whom I miss dearly.

Happy Mother's Day to all the moms out there of all walks of life, and to those missing their mom, or missing their children; and those who wish to be mom.  And of course happy Mother's Day to all the aunts, Godmothers, Grandmothers, and mother-figures in our lives.

The thing is...

I have a pretty vivid imagination. I day dream a lot. I have a lot of anxiety over almost everything. In my head I'm always playing out how things may go and reviewing each case scenario. I'm home with a 31 month old and don't get much of any adult face-to-face interaction on a daily basis unless you count therapists.

All these personality traits lead me to be...over sensitive? Paranoid? Stressed out about everything (including things that haven't happened/haven't played out yet)? Yes. Add in being a special needs parent and boy, is it a crazy world in here.

Lately I have been so aggravated with some companies and organizations who refuse to return phone calls or answer emails or tie up loose ends. As the consumer or donor, I shouldn't have to beg a company to give them my business, however it seems that's what it has come down to.

And I find myself asking...is this just how business is now conducted? Or is this how business is conducted when you use words like "special needs" or "disabled"?

I have recently been trying to get Emily into more groups and programs that aren't special needs based. We go to a music class about every other week and she loves it. The past two weeks I have contacted 3 places.

The first one was the Michael Phelps Swim School. We want to get Emily more involved with swim. Before signing her up I had to call with some questions. As a parent of a non-special-needs kid I would likely call with some questions, but as a parent on a SN child it is a MUST. I needed to know the pool temp (too cold her leg muscles will tighten and she won't to any leg movement=lessons are a waste; I know this my experience as this is the third swim program we have tried). I need to know if an instructor is in the pool with us. I need to know if they are teaching things related to swim (going under, floating etc) or if this is just a glorified playgroup early Sunday mornings in the water (something I am not interested in).

And, I need to make them aware of Em's latex allergy, and her medical background. Because frankly, it seems irresponsible not to disclose medical information to a group she's joining when the group has physical activities.

So the gentleman who answered the during-business-hours call was very polite, encouraging, knowledgeable, and helpful. As a result, I registered and coughed up the money. Sunday was the first lesson. Emily seems to enjoy it and it's what we are looking for (although I will say, the instructor wanted nothing to do with my attempts to speak with her before the lesson to explain that Em cannot kick on command etc which led to some uncomfortable moments in the pool when she was working with Emily 1-on-1 telling her to "kick - kick harder!" But I digress...)

After I called and spoke to the very helpful gentleman at MPSS I called a very popular gymnastics facility here in Williamsville, and a very popular Yoga studio that has a studio downtown and in Williamsville (is it PC to disclose the company names? Maybe not? I guess I won't.)

I called the gymnastics facility, learning this facility may have a group for toddlers led by a PT. I was super excited because Emily has recently started pulling to stand and also climbing on and over things. She also seems to be a bit of a daredevil and what better place to fall (safely) then in a gym?

So I called up Stumpfs...whoops, I mean undisclosed-gymnastics-place during regular business hours and also at a time where, based on the website, they have classes going on so that I could talk to a human.

No answer.

I tried back 5 more times throughout the day. No answer. I found this puzzling then figured maybe they screen all there calls so I'd leave a message.

I'm not a huge fan of leaving messages because I have a lot of info to leave. I had lots of questions for the gym given Emily's latex allergy and her shunt/mobility. So maybe they found all this annoying? Maybe. But our free time is valuable. Emily has 6 therapy sessions a week (plus music....and now swim lessons). So If I am going to book her up even more, it can't be a waste of time or money, because we don't have the time or money for that.

Or did they not like hearing "cannot walk unassisted" and "has a few developmental delays"?

So yeah, they never called me back and I guess I'll never know, so I can instead just draw my own conclusions based on being totally blown off. Gracias!

I also called the Yoga studio. Emily LOVES doing yoga with me...she adapts her own moves and it is so cute. I thought...what better than to get her in a group with peers, and add some kid stuff like roaring like lions? And, how holistic would kiddo-yoga be for her health and strength!? So I called with a few questions. The ?receptionist was difficult to hear and she was not able to give me any information on the Yoga Sprouts group. She noted I'd need to speak to the instructor. Great! Only, the instructor wasn't there. I left my name (after spelling it for her three times) and phone number.

I didn't hear anything for a few days, and seeing as how I had by then already scrapped the gymnastics idea and gotten all hyped up over yoga, I sent the instructor an email with my questions and interest.

The next day I received a call back from the same woman I originally spoke with on the phone. She told me she had my name and number written down but couldn't remember why I called. Um, okay. So I repeated everything and mentioned I had sent an email but haven't heard anything. She said she'd pass my info along (again) and gave me an excuse as to why the instructor hadn't responded to my email, and then assured me I would her something.

Fast forward 8 days and here I am...no response, yet again. In my head I'm fired up. Is this because they don't INCLUDE everyone? Can't they be professional and at least SPEAK with me before slamming the door? I should also note yesterday I forwarded the original email I sent to the instructor, to the yoga studio's general info email address, asking yet again to speak with someone about enrollment, and I still haven't heard anything.

**Update:

I just received a phone call this afternoon. The instructor was quick to tell me that "of course they welcome kids of all needs and disabilities" and then also quickly said the class is "almost full" and only has one spot, and is drop off, and they basically don't have parents in the room. She also wasn't sure that that environment, with 7-8 kids would best suit Emily.

Obviously I'm pretty disappointed...and I tried to process everything real time and take notes. She did say she offers private instruction in home/at studio which isn't necessarily a bad idea...except the class would have been $60 for 6 classes and I want Emily in a group setting. Private instruction is $45 for one 40-minute session. There was some discussion of if she ever has an assistant in the class, then someone could be there to help Emily. She also mentioned that if I get 4-5 other kids rounded up she can start a second class/have a smaller kid to teacher ratio. I'm thinking when Emily is a bit older to figure out how to make her own on-the-fly body adaptations for moves and poses I can look back into Yoga. I did look of some stuff on adaptive Yoga and it is out there...in Florida, California, and Massachusetts. Looks like it's an amazing thing. There is a man by the name of Matthew Sanford who has been paralyzed since age 13 and he has developed a whole adaptive yoga program. Further research to be done. I'm no Yogi but it looks like I'll be teaching Em some poses via web-based adaptive research for the time being.

Three years later...

Our Society is obsessed with perfection. It is a quest for the perfect body. The perfect job. The perfect house. The perfect life.

The perfect baby.

Today is the 3 year anniversary of Emily's Spina Bifida diagnosis. Three years ago, at 18 weeks gestation, we were told our perfect baby was not perfect. This anniversary is always difficult for Chris and I because it was the darkest day of our life, followed by the darkest period.

But from that darkness has come the most perfect, beautiful result.

In today's society words, beliefs, and view points continue to facilitate a need for perfection, while at the same time reinforcing the idea that imperfection cannot be tolerated. Look at the termination rates for Down Syndrome; they are estimated at 90%. 9 out of 10. The termination rates for Spina Bifida, while difficult to track down and pinpoint, are at 48% (I have used a study done in 2009, the year Emily was diagnosed and born). A 50-50 chance to make your mark in the world.

The bottom line: there is a dark cloud hovering over our society that suggests people with disabilities or who are cognitively delayed or who are medically fragile do not belong. Since our diagnosis, I have known this is the belief of some medical professionals. There is this perception that a disabled child, or a mentally challenged child, will only have a miserable life. That they would be a burden. Doctors use terms like "poor quality of life" or "a life different that yours". They tell vulnerable, crushed parents that their child is less than perfect.

And then they tell you what the solution is to the imperfection.

Campaigns like Spread the Word to End the Word work hard to bring about awareness of disability slurs and how they contribute to shaping the misconceptions and oppression and violence towards individuals who may be disabled or cognitively delayed. Often press coverage of a person with a disability or permanent medical condition will say "...Emily, who suffers from Spina Bifida, is two years...", just reinforcing the idea that someone with a disability cannot possibly lead a happy life, but just suffers through it.

Through social cues and norms in media, print, and web, misconceptions about special needs are rampant and shaping how people view individuals with these needs. The majority of the time Emily is out with her walker we encounter staring, questions, and an assumption that she is to be pitied (through pitiful "awwww", "tsking" and a load of "God love her/God pray for her/God Bless her"). Using a wheelchair, a walker, or forearm crutches, doesn't equal misery. But that is all too often the perception.

I was reading this NY Times Article written by blogger Amy Julia Becker, and I made the mistake of reading the comments. Below are direct quotes from the 200-comments section of the article, with most comments shocking me:

"What a naive bit of nonsense! No parent should welcome a mentally or physically defective baby that will grow up to a burden on society. No society should either."

“The ones who suffer? The SMART kids. Only a deeply self-destructive society dumps all of its resources into a population that, frankly, isn’t going to show a return on the investment.”

These comments clearly speak for themselves. But what's frightening to me is, these people are lurking all around. Sometimes their bigotry is direct, and sometimes it's veiled. Sometimes this is what is in their heart, even though they don't say it to your face.

I realize now, three years later, that the scariest thing about bringing Emily into the world is not her diagnosis. It is not the doctor's appointments, the therapies, the delays, the worries about her.

The scariest thing is knowing what's out there in the world. It's thoughts and beliefs as exemplified from comments quoted above.

The thing is, those dangers would still exist, Spina Bifida diagnosis or not. It is Chris' and my job to teach Emily about the world, and with that comes both good and bad. But Chris and I are proud to be parents of an individual who has the qualities we hope to be instilling in Emily. I look forward to knowing the adolescent and adult Emily is going to grow into. I am so thankful for a family that supports and shares our views, and for a Spina Bifida community and organizations that understands and are working hard to help correct misconceptions.

We will sleep at night knowing that that the foundation we are giving Emily lets her know she is an equal. She is kind. She is thoughtful. She is smart. She is considerate. She is valuable. She is an individual.

She is loved.

And that she has always been, and will always be, welcome in this world.

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.