New look and an Update

We've got a new look around this blog...a picture featuring the team shirts and Miss Em, and a new blog background.

I know the look is a bit *busy* but that suits us just fine. After all, we are running all over the place as of late!

Training update: On short runs (averaging from 3 miles to 6), I'm ranging from 10-10:30 minute miles. On the weekly long runs, I'm ranging from 12:15-12:40 minute miles. And so far, no rhyme or reason. I was 12:15 for 15 miles Aug 21, then...over 13 minutes (yikes!) August 28 for only 12 miles, and then 12:40 September 4th for 18 miles. I was very pleased with this, because the wind was brutal on Saturday and took a toll on my time, and I was worried with the distance I couldn't make up ground, but somehow I did.

I know for some, anything in the twelve range might be considered, well, crap. However, considering this week finished just 10 weeks of training injury free, I'm very happy. And, I feel like 12 minute miles is within my range for the marathon, now officially TWO MONTHS away.

This weekend is the Rochester Half Marathon, which I'm doing for some race experience. I'll also be running in a pace group for 12 minutes. I've been going back and forth on the pace group. because on one hand, there won't be a pace group for NYC. And, I want to be able to self lead and manage my times. However, since I've yet to come in at the 12 minute mark for longer runs, I decided this is the perfect opportunity to push myself (with some help) and see if I can do it.

Now, to the exciting art: the fund raising. Adam Schefter, an NFL Insider for ESPN (for those who don't speak ESPN, he does the reporting for the NFL for ESPN). Chris, my husband, saw that Adam Schefter tweeted about having his picture taken with a young man, who has SB, at the Steelers Training Camp in July. Chris contacted him, giving a bit of our story, and asked if he would post a message on his twitter account about our marathon goal.

I didn't know any of this, until August 26th when Chris came home from work beyond excited saying he'd just received a call from Adam Schefter. And on August 27th, the tweet went out. It read: Please help an amazing young girl, Emily Keicher, raise $ for Spina Bifida Assoc. as her mom runs NYC Marathon. Info at http://is.gd/eGFLO

And, it was retweeted 42 times.

To say I was floored is an understatement. I mean, he read the letter, decided to help, and personally called my husband to let him know.

Oh, on top of all this, he also made a donation.

In the past three months since I signed on the dotted line to raise money and run NY for SBA (for Emily), I've been so touched at the amount of people who have helped. People who we've only met *virtually* who have helped. People who we've never met at all. People who have heard about our journey from others on the same journey, who have helped. Old friends. New friends. Family. Friends of Friends. Friends of strangers. Businesses. Old school mates who we haven't seen in years. People who have have tweeted our goal. People who have shared our story on their websites, blogs, facebook pages. People who are on the same Spina Bifida journey. Mons and Dads to sweet miracle babies.

I am moved by each and every donation, every thoughtful word of encouragement. With each I am honored that our journey, Emily's life, has effected someone, and that you've decided to make a donation to the Spina Bifida Aassociation in Emily's honor.

We are now 50% to our goal, with 52 donation days left to go. 52 days to raise another $2500 for the SBA. Our team as a whole has contributed almost $11,000.00 to SBA thus far.

Running NYC in 60 days impacts me personally, as a statement to be made to Emily, for Emily. I want to demonstrate that you can do anything you set your mind to. This impacts Emily, as it sets a tone for the type of "I CAN" attitude and perception she will have, and shows her just how much love and support is out there for her. It impacts Chris, as it's his personal goal to see we meet and exceed the $5000 we must raise. And, it impacts the lives of the 166,000 people living with Spina Bifida in the US today, with the team fund raising totaling $25,000 to be donated to the Spina Bifida Association.

Donations sheets are linked above and can be sent to us at 56 Newberry Lane, Lancaster, NY 14086. Checks should be made out directly to "Spina Bifida Asscocation". Directions for making an online donation for our team (In Honor of Emily Keicher) to SBA are linked above.

Thank you for your help thus far. Thank you for opening your hearts. Thank you for continuing to spread the word. Thank you for donating. Thank you for cheering us on.

Why we do what we do...

We need your help!!!

As many of you know, on June 1, 2009 we welcomed our beautiful daughter Emily to the world. Eighteen weeks into my term, the doctors diagnosed Emily as having Spina Bifida. Spina Bifida is caused, when around 28 days into pregnancy, a portion of the neural tube fails to develop or close properly.

Doctors are not certain what causes Spina Bifida. As with many other conditions, it appears to result from a combination of genetic and environmental risk factors, such as family history of neural tube defects and folic acid deficiency. In Emily’s case, the cause is unknown. There is no family history, and I was taking folic acid for 10 months leading up to the pregnancy, and during the entire pregnancy.

There are varying degrees of Spina Bifida and Emily was born with the most severe, myelomeningocele. With myelomeningocele, the spinal cord remains open along several vertebrae. Because of this opening, or lesion, both the membranes and the spinal cord protrude at birth. In some cases the lesion will have a sac covering it. Usually, tissues and nerves are exposed, making the baby prone to life threatening infections as well as a host of neurological impairment. From where the lesion begins and below, the spinal cord, nerves, and therefore controlled function are adversely effected. While Emily underwent surgery when she was 2 days old to close the lesion, this closure does not restore the nerves or reverse the condition. The closure simply protected her from infection, which would have been life-threatening.

Spina bifida comes along with a host of medical complications. While Emily has spina bifida, she also has many other medical conditions and complications as a result of the underlying spina bifida. In utero she was diagnosed with hydrocephalus. Hydrocephalus is a build up of cerebral spinal fluid on the brain, and in Emily’s case this fluid cannot drain properly because she also has Arnold-Chiari malformation (a condition in which there is a downward displacement of the cerebellum into the foramen magnum, the opening at the base of the skull). The cerebellum is blocking the natural flow of CSF between the spinal column and the brain. Emily underwent brain surgery at 17 days old for placement of a ventricular peritoneal shunt. The ventricular end of the shunt was passed through the brain and into the lateral ventricle, where excess cerebral spinal fluid is collected and redirected through tubing, into her abdominal cavity for absorption. On day 19 she underwent a shunt revision, to correct the placement of the shunt valve and tubing.

In addition to the neurological diagnosis, spina bifida also causes other medical impairments, such as varying degrees of loss of movement (paralysis) from the trunk through the legs, feet, ankles, toes. The higher the level of the defect the more severe the associated nerve dysfunction and resultant paralysis will be. Many people with spina bifida use the aid of orthodic technology, such as ankle-foot orthotics (afo’s), knee-ankle-foot orthotis (kafo’s), hip-knee-ankle- foot orthotics (hkafo’s), standers, walkers, crutches, and wheelchairs. Emily also has neurogenic bladder and bowel. She has a high pressure bladder for which she is medicated, and we clean intermittent cathertrize her every 3 hours. She has kidney reflux in her left kidney. She will face a lifetime of medical complications, surgeries, and medical management for a multitude of medical conditions resulting from spina bifida.

Emily celebrated her first birthday on June 1, 2010. Since her birth she has undergone three major surgeries. She endures six therapy sessions a week, including multiple physical therapy sessions, aqua therapy, speech/language therapy, and occupational therapy. Her daily life includes a hard regimen of work and therapy to help battle low muscle tone, developmental delays, and help her reach developmental milestones. She has had over 100 doctor appointments the past 14 months and regularly sees a neurologist, urologist, and orthopedist.

Yet despite all of the medical and developmental complications, Emily has taught us so much. Her resilience and determination are only outmatched by her gloriously happy demeanor. It is clear she has a passion and love for life and everything around her. Her curiosity and independence is already starting to shine through. She has shown us what hard work and determination can do: she started army crawling about a month ago, and can pull to stand and bear weight for several minutes. She has taught us what really matters in life. She has taught us what it really means to love.

And, she has taught us that nothing, nothing is impossible. To that end, after much hard work the National Spina Bifida Association was accepted a few months ago as an official charity of the 2010 ING NYC Marathon. This means that 5 runners will be running the marathon on November 7^th, on the condition they each raise a minimum of $5000 (for a team contribution of $25,000). To help reinforce the idea that everything is possible, I am pounding out 26.2 miles in Emily’s honor in the NYC Marathon November 7^th.

But I can’t reach my goal of $5000 without your help!

All money raised will go directly to the Spina Bifida Association, the only national voluntary health organization solely dedicated to serving adults and children who live with the challenges of spina bifida. I also think it’s worth noting that, according to the 2008 annual financial report, only 0.9% of the revenue went to “management and general”. 81% of revenue went into program services, such as education, information and referral, government relations, chapter development, research, and fundraising. This is an organization dedicated to educating the public, and helping the 166,000 individuals (and families) living with spina bifida in the United States.

We would be honored if you would help make this goal a reality.

You can made a donation directly online to the Spina Bifida Association In honor of Emily Keicher by clicking the Link above, "HOW TO MAKE AN ONLINE DONATION.

Orr you can make a check out directly to the Spina Bifida Association and mail the check to 56 Newberry Lane, Lancaster, NY 14086 (email me at elizabeth_webb1976@yahoo.com for more information). We mail checks into SBA every 2 weeks.

To all of those who have already donated, Thank you, Thank, you, THANK YOU!!!! We appreciate your generosity, and your support of the Spina Bifida Association, and Emily, means the world to us!

How it's all going...

On Sunday it's 13 weeks till the 'thon. 5 weeks until the Rochester half. With my knee feeling much better and the bulk of the swelling having migrated to my ankle, training is getting easier. I still have 2 sessions of PT a week and hopefully those will be winding down by the end of August.

This week's (Sunday - Saturday) total mileage is 28 miles, with 13 of those miles being done tomorrow for my "long run". I am not yet ready to run this whole distance, but continue to work on endurance with the shorter runs during the week. I am also looking into spinning class to help with endurance. I'm thankful that the temps are looking to be in the 70's tomorrow. The sun and humidity have been kicking my butt. I'm staring down Sept 4th, when I'll be tackling 18 miles that week for the long run...

On the fundraising front, $1313.20 has been officially donated and sent to SBA towards my individual $5000 goal. We have another $314 donated that has come in the past two days. That puts us at 32% to goal. We want to say a heartfelt THANK YOU to those who have donated. We appreciate your support of this cause, your support of Emily, and your support for the marathon.

We have 84 days of fundraising left, and every little (or big!) bit counts. To be able to raise $5000 for Spina Bifida Association, and impact the lives of so many (but especially this little ham below) means so very much to us. This is an opportunity of a lifetime!



The total team (5 runners) has $5334.80 in, but there is several...thousand more en-route to SBA, with one team member already meeting and EXCEEDING their individual $5000 goal (AWESOME!!!) - they have set the bar high, and we're hoping to catch up to them!!!

I am looking forward to running this week in Long Island, taking in a change in scenery and seeing Jersey cows and smelling the ocean while I run during the week. And then, I'll be sampling the New Jersey streets for my 10-mile run closing out vacation.

92 days till Joshua and Emily's team for SBA Conquer NYC to Help Conquer Spina Bifida!

On the Run

I wish I could run and blog simultaneously. I'm sure many of you can, and while I can multi-task, I can't do tasks that require that much coordination.

And running, for me, requires coordination.

Way back before I became a Mommy I used to run. I never thought about running while I ran. I though about things at work, used running to get out my work stress and anxiety (if I only knew then what I know now. None of that mattered. None), think about what we might do over the weekend, what my next pair of shoes might be...

But now, it's a whole other world of thoughts.

I start out by thinking of the mechanics of running. Am I standing straight? How's my posture? Are me feel hitting okay? Am I keeping them straight? Can I finish this last mile in 8 minutes so my splits end up being ten minutes (and that answer to that one is no, they will end up being 11.5 minute miles)?

Then I start thinking about what hurts and I start complaining. How old I feel. How come my left knee hurts when my right is injured? Am I overcompensating? What's the muscle inside my calf that feels tight? Why is it so hot out? Why can't I find the time to get this run in early, before it gets humid?

And then I remember why I'm doing this. I think about how grateful I am that I can feel the pain in my legs. That I am able to walk. That I can run - how can I complain about running? how can I take it for granted? I think about how it must sound to someone in a wheelchair, with a walker, crutches. I think about Emily, in AFO's, and what it would sound like to her. I think about everything she has been through. I think about how hard she has to work, will always have to work. And my complaints wither away, pitiful and ashamed that they even reared their ugly head.

And then, head cleared, I take in the music. Today, "All These Things That I've Done" resonated in my ears. I moved along and just emptied my mind, and listened. I love hearing Time and truth and hearts in the background. I listened. And I heard something new. I used to think they were saying If you can't hold on, but I was wrong. Today I realized they are saying If you can hold on. How funny.

Over and in, last call for sin
While everyone's lost, the battle is won
With all these things that I've done
All these things that I've done

Time, truth, and hearts

If you can hold on
If you can hold on

COUNTDOWN TO THE MARATHON

The 18 week training program has begun, injury, heat, and all! We have officially decided on a team name:

JOSHUA AND EMILY'S TEAM FOR SBA: Conquering NYC to Help Conquer Spina Bifida

Emily is our 13-month old daughter who was born with the neural tube defect Spina Bifida, and Joshua is the 8-year old son of Carey and Scott, friends we have made right here in Buffalo. Scott is taking on the 26.2 mile monster in honor of Joshua, who has Spina Bifida. Our team also includes myself, Katie my sister, and two ladies from the tri-state area Shannon and Allison.

We are each raising $5000, with a united team goal of $25,000 donated to the Spina Bifida Association. We are running on November 7, 2010 in the ING NYC Marathon as "Charity Runners", meaning we are able to run in it because we are raising this money for SBA.

So how are we doing, hows our Keicher goal of $5000 looking? Well, the first week or two we saw several online donations and received several checks in the mail. But things tapered off, and WE HAVE $4440.60 TO GO!!!

This is a wonderful cause. It is because of the SBA that things like the National Conference (from which we just returned) are held. It is because of them that education on Spina Bifida occurs. It is because of them that local chapters exist, where individuals and families can turn to people on the same journey and receive advise, support, hugs, help. Spina Bifida is a complex, complicated, permanent reality for 166,000 people living with it in the United States right now.

Please help us Conquer Spina Bifida by making a donation to the Spina Bifida Association in Honor of Emily Keicher.

Please visit this page and select "Send a Tribute Gift", and follow the steps to donate!! Please note, you MUST select "In Honor" and put in "EMILY KEICHER" for the donation to be counted towards our team. And by sending an acknowledgment to "Elizabeth Keicher" at elizabeth_webb1976@yahoo.com, I will receive an email blast that you donated.

Or, send a check to Chris and I, made out directly to the "Spina Bifida Association". We will handle the rest for you.

Thank you for considering the Spina Bifida Association, and thank you for helping to support Emily and her future.

NYC Marathon

When Chris and I finally found out we were expecting, we told my mom and sister the evening of the NYC marathon, which Katie had just completed, 2008. The set up was: I announced I was signed up to do a marathon.

Katie right away suggested I do a half marathon. Chris told them this marathon was different. That no body would be timing me, and I'd be doing the endurance alone. Oh, and at the end of the marathon, instead of a medal, we'd have a baby.

It took a few minutes, but finally the light bulb went on: I wasn't doing a conventional marathon...but childbirth was the marathon!! How funny that things are coming full circle now.

As you all know by now, the Spina Bifida Association is officially a Community Charity for the 2010 ING NYC Marathon. That means 5 runners get guaranteed entry to run...no qualifying runs/times, no lottery. Just raise the minimum amount of money and run for your cause.

This was my sister's brainchild. And, she might as well be a marathon runner (soon to be tri-athlete) by trade so she registered right away and is all set to be the Captain of the SBA team.

And so we go about the search for 4 remaining runners...Katie's marathon companion and long-time friend Shannon has been *invited*. I started my search for 2 more runners, briefly thinking the other day...hmmmm...I wonder if I could run it. I researched briefly how much time one needs to train and then pushed the thought to the back of my head.

There are many reasons not to do it. I've never run in a legitimate race, let alone a marathon. 26.2 continuous miles of running. Oh yeah, and while Emily is already 1, it's like I just gave birth to her two months ago, with my weight and physical fitness state. Would they be asking me to move off the streets to the side walk at some point because 7 hours had passed and I was still trudging through?

There are always reason's not to do something.

But then Katie said something about me running it. And it was like an "I second that motion" on the thought from the other day. So I gave it some more thought. Because, while there is always a reason not to do something, there are always more important reasons to do something.

You can either watch life run past you, or you can run along with life. There is always an excuse not to do something, not to go somewhere, not to participate in something, not to embrace life while you have the chance. This is not the message or value we want to instill in Emily. We want her to do anything and everything her heart contents. We want her *running* along with life, in whatever form she may be *running*. We do not want her watching from the sidelines as life runs past her.

But the bottom line is: for everything Emily has been through so far in her little life, and for everything she will have to go through in the future, 26.2 miles seems like a very small feat, and there is no excuse to not do it.

So it's official: I am entry #586757 in the world's largest marathon, the NYC Marathon 2010, running for the Spina Bifida Association, on behalf of my daughter. I'm going to raise at least $5000 (our team goal is $25,000), and run (well, and walk some...) 26.2 miles.

This blog is now essentially turning into my training tracker, journal, crutch, countdown, contribution tracker and so on. I'll be journaling every Sunday, for everyone to see how much I ran and worked out during the week, how we are raising money, what you can do to help, what I'm learning as I learn another new language, that of marathon training/runner.

If you are as inspired to jump on board, especially any of you Mommy's on this journey, please let me know. Only 2 spots are remaining on the team!!!

Policy

This past weekend was the last installment of the Early Intervention Partner's Training Program I'd been attending. I feel privileged to have attended, and while Emily is at such an early age.

So now the question is, how best to put what I've learned to use? I have a few ideas clinking around my head, one of which is to use part of this blog to share EI Policies, experiences. Educate. Not only those who stop by to read the posts, but to further educate myself on what my role is in life, as the mommy to a special needs daughter. So the bargain I've made with myself is, for every post I make about EI, be it a concept, definition, step, experience, I have do something more with the post. In other words, the blog post enough isn't enough. I have to convert it into an action.

My plan for this week to was write about policy, a term we discussed on Saturday's meeting. We spent time discussing public policy, but the idea of *policy* can be extended to a lot of things. Dictionary.com defines policy as "a definite course of action adopted for the sake of expediency, facility, etc"

Policy should benefit someone or something, such as the group, people, or philosophy the policy's organization represents. Sometimes that's not the case. For example, it was against our health insurance policy to cover out-of-network care...but after a long battle and a good fight, they adjusted their policy for our situation.

Sometimes a policy makes no sense. My sister Kathleen is a marathon runner. She contacted the National Spina Bifida Association to have them be a "Charitable Organization" through the New York Road Runners, which would allow for some runners to raise a minimum money for the SBA in order to run in the 2010 ING NYC Marathon. We have been anxiously awaiting the NYRR's response, which was almost a month overdue.

Yesterday, the SBA heard from NYRR: They were accepted!!!

UPDATE on Wed 5/19: SBA HAS DECIDED TO ACCEPT, AND WILL BE A CHARITY ORGANIZATION FOR THE 2010 ING NYC MARATHON!!!

!!What a wonderful success story of fighting for what you want! Details to come as we have just received word from Cindy Brownstein herself (umm, President and CEO of the National Spina Bifida Association!), and they are willing to make this happen.

This just goes to show that persistence and sharing your passion pay off. I cannot express how excited I am!!!

PS-This isn't to say I scrapping the foundation idea! I would love to see Spina Bifida awareness at the level of other major causes. We are limitless, and while it may be lofty, it's lofty to crawl when your legs don't move, stand when you can't bear weight, walk when your prognosis says otherwise, and SB kiddos are doing these things every day.