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!

Christmas List

I belong to a group on BabyCenter, a support-group of sorts for parents of kids with Spina Bifida. It's mostly moms, with a few dads here and there. I found the group shortly after we received the SB diagnosis during the pregnancy. I usually pop on every two days or so and see the posts, learn new things, but mostly take comfort in knowing there is a whole world of other moms out there who are standing in the same exact shoes I am in at any given moment.

I only wish these moms lived in my town. I wish that instead of jumping online to give or receive a shoulder to lean on, I was driving with Emily to them...and we would drink coffee (or wine, depending on the time of day and the particular emotions that day!) and talk about how to get the medicaid waiver or how to appeal a denial or where to find the best urologist or new equipment or new therapy and comfort each other when a therapist says your child is 6, 8 months behind on speech, gross motor, fine motor. And then we would chat about and celebrate what all our kids are: beautiful, growing little people who overcome and persevere. And we would be so happy that the person right there could say, "I know just what you are going through!"

So I'll put that on my list...can't hurt to ask for it. I think, there are things we want that we don't ask for, or don't tell everyone we want. Like, my list had an ice cream maker, blu-ray DVD player, Origins Ginger Body Wash and Cream...but it had other things that I kept close to the vest, sharing with Chris, like the books My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities, and Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children. I always pictured myself as the parent who reads books on parenting, but books with titles like What to Expect: The Baby Years, or Potty Training The Easy Way. Ha!, I think now, out loud most of the time, of these books. All these books, the titles of which are now just laughable, these manuals on raising kids make complex issues out of everything. Meanwhile I'm trying to do the exact opposite: make easy the most complex of issues.

So after Christmas I'll be reading these new books (I have it in with Santa...he told me the books are on their way) and offering some reviews on them which I hope are helpful to everyone: parents of special needs kids; support people of parents with special needs kids; and people who want to understand the other side of the parenting coin, the side that mainstream media communication falls short of addressing and paying homage to.

For now, I'm going to *explain* to Emily, who should have been napping an hour ago, that PT will be here at 2:00, following immediately by Speech/Language Therapy at 3:00. Mostly she's just going to grin at me and say "Hi! Hi! Hi! Hi!" and we'll laugh about it all later during therapy meltdown...

Back on Board

I bet you though I was never coming back! My blog recovery time was longer than my marathon recovery.

I rested the week after the marathon...and then took another week, only doing about 5 miles the second week. Then I was right back to running/weights/spin until Thanksgiving...then took another hiatus. In fact, the only running I've done has been small races, like the Turkey Trot and Reindeer Run. And I just read an article where races that have the word "trot" or "turkey/reindeer" aren't actually given much cred in the world of running...

Instead of the 40+ mileage each week, I've been decorating with this little boogie, and baking, and eating cookies and singing Christmas songs, and making excuses to skip spin and stay in my *mom outfit* all day.



But YIKES, it doesn't take long to fall out of shape. Emily is probably as fed up with wearing PJ's all day as I am.

So I'm back, back with a vengeance, so to speak. You see, we are already working on NYC 2011. The SBA was so thrilled with the $31,281 the team raised, they are ready to take on another year, this time asking for TWENTY spots instead of just five.

We are flattered, as this is a big commitment for SBA to make in us...and us in them with a minimum of $50,000 guaranteed to be donated with 20 runners, and a goal total of $100,000.

$100,000. Yep, you read that correct. Go big or Go Home.

So while I twiddle my thumbs and wait word of whether SBA was accepted as a charity partner again, and if the team was increased to 20, I need to be focused on maintaining mileage, strength, and flexibility. It likely we don't find out about NYC 2011 until late spring (last year we found out in JUNE!) so until then, I'm forging on assuming we will be a 20-person team for 2011.

Today I registered for some races that don't include the word "trot" or have animals in the title. Like the Manhattan Half Marathon January 22. And the Cleveland (full) Marathon May 15. And the Buffalo half Marathon May 30. With solidified commitments, and a goal of sub-5 for marathons and sub 2:28 for half's, that should be just the kick I need to halt this vacation from mileage, sweat, speed, flexibility, and work, and be in top shape to start an 18-week training plan for NYC 2011 should the time come.

Of course, I do expect to have a few smaller *fun* runs in there, like a Shamrock run or Freezer Run or Polar Challenge. After all, you have to mix it up.

In the mean time I hope hope hope for NYC 2011, with a huge team contribution to SBA, and the opportunity for some new team members to run on behalf of their sons, daughters, nieces, nephews,and friends, and experience the awe and exhilaration of showing all our kids what can be accomplished in life.

Marathon Review!

Thanks for your patients while I recovered last week!

Now for the good stuff: the 2010 ING NYC Marathon review!

Somehow I managed to keep the marathon of my mind in the days leading up to it, although by then my nerves were already shot. Saturday night me, my sister Katie, my mom, Chris, and Emily all went out for a nice pasta dinner in Hoboken, and then it was off to the Hilton Millennium in NYC for Katie and I. We were tucked in by 8:00PM, but I found Avatar on the tv...an hour into it I forced myself to shut it off - it wasn't the night to get sucked into a three hour movie that was going to get my mind going. I think I feel asleep around 10:30.

By 5:00AM I was up (daylight savings...extra hour!), and Katie was already gone for her transportation assignment. i watched some Law and Order while I got ready and about 6:15 AM met team mate Scott in the lobby. After a short cab ride to the Staten island Ferry Station, we started counting down to 7:15. The terminal was PACKED! It was awesome to see a variety of runners - just a great range of ages, ethnicity, sizes. It really drove home that marathons might be some of the most diversified, tolerant options in life. People who can run it in less than 3 hours are mixed in with people who run it in 7; people who are racing in a wheelchair are sharing the course with hand-cyclists. There is no discriminating on the course, and everyone is supportive of each athlete.

There was a little blip when the 7:15 ferry never showed...after some claustrophobic time, we managed to squeeze onto a ferry at about 7:50, and then once on SI, took a bus to the green corral. Katie and I had planned on meeting up because she was also in green, but alas we didn't get to the staging area until after her start wave had lined up. We were actually able to see runners in the first wave start because the corral was right next to the bridge. And yes, it's no joke that many guys just stop yards onto the bridge to take a leek. It was pretty funny (although, as a runner who was starting on the lower level, a bit unnerving).

After getting some coffee and enjoying a bagel, banana, three trips to the bathroom (points for me for snatching a roll of toilet paper from the hotel bathroom on my way out), and getting my ipod, sunglasses, tissues, sleeves, gloves, and hat set it was off to the starting corral. The gun went off and POOF! Nothing happened. Which I expected - it took about ten minutes to shuffle to the start line.

So the course begins on the lower level of the Verrazano-Narrows bridge. It's a double-decker suspension bridge that is the longest suspension bridge in the US. It connects Staten Island to Brooklyn, and is almost a mile long. It has been the starting point of this marathon since 1976. And here's a noteworthy tidbit: due to the thermal expansion and contraction of the steel cables, the bridge roadway is 12 feet lower in the summer than in the winter.

It was pretty chilly and windy on the lower level, particularly with the lack of sun. It has a pretty steep incline as well, but the incline, wind, and cold didn't matter: it was such an unbelievable feeling - so many months of preparing and training, and the moment was finally there. Right before my wave started a plane flew over, pulling a banner that said "Breath deeply and enjoy the moment". It was just the first of many encouraging signs, words, and sights along the 26.2 mile track.

I had a pretty good starting pace. With 12 minutes/mile as my goal, I was 6 minutes ahead of the overall 5:15 goal by the 10 mile mark. I felt great, my knees were holding up, and I was envisioning knocking another 9 minutes off to come in at 5 hours. I had been alternating between water and Gatorade at each water station to keep hydrated, but that caught up with me by mile 12. I decided to hit the port-o-potty at mile 12 and it may have been the worst decision for many reasons. First, I had to wait 7 minutes. that killed my advantage, and before I even went it I was now looking at being over 5:15 overall. Second, I didn't really have to go...big waste of 7 minutes for 20 seconds. Third, and this was my biggest worry with stopping at all - when I started back, my right knee didn't want to play along. That 12th mile ended up being a 19 minute mile and I was limping for he next three miles, which crushed any hopes of 5:15.

Thankfully, I spent some time mentally preparing for something like this. 5:15 was my goal, but I decided ahead of time should something happen to be ready to adjust he goal and set a second realistic goal, 5:30. While I reconciled myself this, in my head I was complaining a lot about the knee, even praying that the pain would subside. remarkable, a moment later a horrific sharp pain ripped through the side of the same knee, and I suddenly found myself realizing he earlier pain wasn't so bad and I could tolerate it - so I asked for the sever pain to be taken away, and promised to tolerate and work through the milder pain, which is exactly what happened. I'd like to think it was my reminder - that reminder I've given myself during many training runs, that no matter what's happening with my body, to remember how lucky I am, and remain grateful for the ability to run. Of course, it also helped knowing that I'd be finally seeing my family at mile 18.

Emily waiting patiently for me to get to mile 18, enjoying the sign she was holding up.

Ringing her bell for all the runners!

It's actually a very long time to go before seeing people you know...over three hours of running, bu what's so great about this marathon is the streets are packed the whole way - bands, people with signs ("run like you stole something" "you're feet hurt because you're kicking ass"), kids giving high-5's, people handing out tissues, candy, oranges, bananas, Vaseline. people ringing bells, screaming, encouraging you by name or by things your shirt says. It was so amazing to have people lift you up and help push you the WHOLE way.

At mile 18 I was coming up first avenue, and knew I'd see Emily, Chris, and my mom around 90th. I started looking for them after 88th, and was able to spot them right away.

No greater motivation than a big hug from your best gal...

On the move...

Besides hydrating at each mile marker, I ate a gel (Gu, chocolate outrage and mint chocolate) at mile 6, 12, 18, and 21, and ate part of a G2 bar after mile 18. Energy and hydration, thankfully, were not issues for me.

I saw my fan club again about half way into mile 23, before entering central park...just a quick pass by, and then I was on my way to the home stretch. Here I am leaving people in my dust (okay...not really but I wasn't last and I never saw the sweeper bus...)

Before the marathon Chris told me he entered my bib number into a friends-and-family program where if your bib number is visible and scanned during the course, they'll pop up a personal message for the runner. Right around mile 24 there was a huge screen and sure enough - there was a great personal message for me. I was screaming "that's me, that's for me" like a fool!!

The best sign came at the start of mile 24: "Pain is temporary, but pride is permanent". What a great thing to read at that point, having run for over 5 hours, knowing that this was the final push. My watch indicated I'd need to run the last 1.2 miles in about 8 minutes to come in by (just under) 5:30, and that saying helped me dig deep at the start of mile 25 and essentially sprint. I came in just under 5:30 according to my watch, and thankfully it was pretty cinched to the timing chip, with my official time at 5:30:48.

It's pretty awesome that Tatyana McFadden, an elite wheelchair athlete who has Spina Bifida, took first in her division in the marathon. Limitless.

After a celebration Sunday evening, and lots of awake time Sunday night reliving everything (did I just do that? Unbelievable!), and more celebrating Monday, we headed back home. The pain and ache in my legs subsided on Thursday, although i was pretty exhausted all week. It was also really weird to essentially not run or work out all week. I did go to spin Thursday after the marathon, but it was a low-effort workout. Then Saturday I hit the pavement for the first time, for an easy 3, which ended up being pretty awkward and weird - my right knee, which gave me troubles the last month of training and during the Marathon, was fine. My left knee, which only gave me small problems (eased by running with a compression band the first two months of training) was killing me! We'll see how things go this week. Only 12 miles total, 3 Tuesday, 4 Wednesday, and 5 Saturday. Then next week, a regular "base week" of 26 miles, which includes the Turkey Trot Thanksgiving morning. I'm hoping I can reconcile the knee issues, because I'd like to run the Cleveland marathon in May, and complete it in 4:59:59 or less.

This is the plaque that the Director of development from SBA presented to each of us after the marathon. I also received a lovely Thank You letter, with a personal note by SBA's president written on it.

The front of the Medal, featuring the bridge, the year, and of course the marathon information.

That's one relieved spouse pictured here, at dinner Monday. Word on the street is, he was more nervous Saturday and Sunday than I was!!

Great job, team...and thank you to everyone for your help and support. And of course, the biggest thanks of all to someone so special, Emily. Without you, none of this would have been possible.

You are already changing the world.

The time has come!!!!

17 months ago, via c-section, I gave birth to Emily. By that time, we had known for 20 weeks that she had meylomengocele spina bifida. That was about all we knew. We didn't know what her medical needs would be, what her physical needs would be, what her developmental needs would be.

But we didn't know a lot of other things, either. We didn't know she would be so adorable. We didn't know she'd love to hug everything. We didn't know she'd be so happy. We didn't know she'd be so determined. We didn't know she'd work so hard.

We didn't know we could love her as much as we do.

Four months ago, shortly after Emily turned one, Chris and I decided, in an effort to show Emily that we were also working hard for her, that I would run the ING NYC Marathon on behalf of the National Spina Bifida Association. Chris task was to raise $5000 or more for the national SBA. My task was to train, and run the 26.2 mile race in 6 hours or less. And so we jumped in, and with 4 other runners (one of whom is my sister, Emily's Auntie Katie), started working hard for Joshua and Emily's team for SBA: Conquering NYC to help conquer Spina Bifida.

Chris has held up his end, and held it up well. Our friends and family and virtual friends and strangers and business people and therapists and coworkers have given generously, and we raised $8,500.00. What an unbelievable accomplishment! I'm not sure I can ever say thanks enough times.

Our collective team has raised just under $30,000.00, with more donations still coming in. That's $29,000 that went directly to the Spina Bifida Association, to help educate the world about what Spina Bifida is, and help enhance the lives--live like Emily's--of those with Spina Bifida.

Now after 18 weeks of training, it's time to do my part. I've done all the training. I've clocked 464 miles. I've trained for 15 weeks. I've overcome a torn meniscus. I've crossed trained with circuit training and spin and yoga. I've iced. I've rested. I've wondered if I'm insane. I've felt the exhilaration of hard work. And it all comes down to Sunday.

At 6:20 AM Sunday November 7th, hours after my sister has left for her 5:15AM transportation assignment, I'll hop in a cab with one of the team mates, Scott (who is running in honor of his 8-year old son, Joshua) and we'll head to the Staten Island Ferry terminal a few block away for our 7:15 transportation to Staten Island. Once there I'll probably stretch...complain about the cold, find out if I have enough layers on...eat...hydrate...make upteen trips to the port-o-potty. I'll watch the 9:40 wave go, and the 10:20 wave go, and then at 10:40, I'll start making my way over the start line for the race of a lifetime, as a 33 year old stay-at-home mom to Emily. And, 5 hours and 15 minutes (plus or minus 15 minutes) later I'll cross the finish line in Central Park and be able to add something on to who I am: a marathoner.

We all have the opportunity in life to change something - ourselves, others, a concept, a belief. Sometimes change happens to us, and we resist it. We challenge it. We argue with it. We think it isn't the "right" change. Then, we realize it was just the change we needed, that it set us on a new path, one we never imagined but one we are so grateful to be on. And that leads to more change, because now we are open to so many more possibilities; we know we are stronger than we ever thought.

Isn't it amazing how something like a diagnosis of Spina Bifida can have such a positive effect on so much?

Thank you to everyone for your words of encouragement, your contributions, your thoughts, and prayers. Thanks for all the support! I've truly been touched by the outpouring of support. A special Thanks to Katie for facilitating this Marathon path and saying "hey, why don't you run it, too?" Thanks to Chris for putting up with me and the demanding training schedule. Thanks to my mom for supporting me and helping with Emily. Thanks to my 4 team mates, for fundraising and working for this important cause.

I'll see you all next week, on the other side of the finish line.