Cheryl runs4 Ruby

Let me introduce you to Cheryl. Cheryl joined our BB group last year and during my first time meeting her, I learned that she was a part of a running organization called I Run 4.

Cheryl runs4 Ruby during the Gobbler Grind 1/2 Marathon

Cheryl shares her story here (make sure you have a kleenex nearby):

I Run 4 (www.whoirun4.com) was started several years ago by a man named Timothy Boyle who was inspired by a close friend who was bravely battling bilateral hip dysplasia. After hearing that Tim was planning to head out for a run, his friend said, “You can run for me anytime!”  Tim began dedicating every mile to his friend, Michael, who would never be able to do what Tim was doing.

In the beginning, the group was small.  It was just Tim and some close friends putting miles in for people they knew, but the group has grown and grown and grown.  There are now thousands of runners (or walkers or bikers or swimmers - just any kind of physical activity) in the I Run 4 group with members waiting about 8 months to be matched with a buddy.

I (Cheryl) signed up as a runner on I Run 4 in June of 2014 after reading an article about it in Runner's World magazine.  After 4 long months on the waiting list, I was matched with the sweetest little 3 year old girl named Ruby Elizabeth Webster on 21 OCT 14.  Ruby lives (d) in Craigieburn, Australia (you are matched in the order that you sign up for the program, not location).  Being a mother of 4 boys, I was ecstatic to be matched with an adorable little girl!

Here is a little bit about Ruby (taken from her website, Rubysbutterflykisses.com):

"Ruby Elizabeth is a beautiful 4 year old girl who has a devastating and very rare Neurodegenerative genetic condition called GM1 Gangliosidosis Type 2.  It destroys the brain cells and the spinal cord.

Ruby was born a very perfect chunky 9 pounds 4 on the 11th June 2011 and she just brightened our lives from that day on. Ruby developed as any other child. She was always happy and giggling and always had a smile on her cute little face. Ruby started eating when she was 3 months old and boy did she love her food! She was rolling at 4 months, sitting at 6 months and saying 'Dadadadad' and 'Nananan'.  Ruby started crawling not long after that and then standing up holding the furniture Ruby even took a few steps along the couch.

Ruby’s favourite thing to do was to crawl around to the coffee table and play with the papers on the bottom shelf. Around the age of 1, we (her parents) noticed that the papers that Ruby would play with every day had not moved for a while and that was when we realized that our Ruby had stopped crawling. We had no idea what was going on.

We (her parents) took Ruby to see Doctors and specialists at the Royal Childrens Hospital in Melbourne and they thought she had a condition called Rett syndrome. After that horrible news we were absolutely beside ourselves. As a parent you pick yourself up and say We can do this! We can care for Our Sweet Ruby for ever, Absolutely!!! 

Weeks later the tests come back that Ruby did not have Rett Syndrome. More tests were done and more weeks passed and we got the worst news any parent could ever imagine: Our beautiful daughter has an incurable condition with no treatment and the life expectancy is any time from now to the age of 10. She has GM1 Gangliosidosis Type 2, a devastating disease that robs her of her mental and physical abilities and will take our baby girl from us too soon.

Ruby has lost all her motor skills so she is now completely dependent on us for everything we all take for granted every day. Ruby no longer has the ability to stand, sit, hold her head up, and any movements Ruby does make are not purposeful, Ruby can no longer eat or drink or even control her own saliva so she has to be tube fed. Ruby's ability to smile and laugh is few and far between and this is so devastating.

This condition also causes seizures which she suffers from daily. Ruby's condition has also made her immune system virtually nonexistent and she picks up germs so easily. Because of this she gets pneumonia easily and spends a lot of time in hospital and in ICU because of it. Every time she gets sick she takes longer to recover and requires oxygen."

So what does “being matched” mean?  It means getting out there and doing something I (Cheryl) may not feel like doing today but doing it anyway because I can and because someone is depending on me to do so.  It means support and encouragement.  And most importantly, it means falling in love with a family that you met via the internet and may never get to meet in person.  My buddy and I may have been 9265 miles (14910 km) apart, but we Skyped/chatted so often, it felt like we had known each other for years.  The I Run 4 Facebook group was a place for Ruby and I to communicate with each other.  I wrote messages to her about my runs or workouts (or just to see how she was feeling), always including pictures.  Her mum and dad read her every single post and showed her every single picture.  Even though Ruby couldn’t communicate, they said her eyes would light up and she would smile when hearing/seeing those posts and pictures.  Then, they would reply to the posts as if it was Ruby doing the talking.  

I would read her children's stories (books I read to my own kids when they were little or from a series of books that I had since I was little!) and show her the pictures in the book via Skype.  She would smile and her little eyes would just follow me.  You could tell she enjoyed it every time.  

Her mum, dad and I chatted all the time via Facebook messenger and sometimes, after reading a story to Ruby via Skype, we would find ourselves still chatting about…whatever…an hour later.  It was like we had known each other our entire lives.  I couldn’t have chosen a better buddy/buddy family if I had the opportunity to pick them myself!  However, Ruby’s mum, Jess, always did her best to include Ruby in everything with me.  Ruby slept a lot between being sick and the medicines she had to take because she was sick.  Her mum would use those times she was awake to “help” her with projects.  For example, I sent her a picture of a shoe and every time I would run a 5K, a section of the shoe could be colored in.  Her mum held her little hand and helped her to color that entire shoe in.  

For Christmas, Ruby "made" me a calendar.  Every single page has her foot print or hand print or even her little fingerprint.  Again, Ruby and her mum only worked on the calendar when Ruby was awake so she could be a part of it.  It is just amazing.  

Ruby's condition had declined during the time we had been matched.  She had many hospital stays with pneumonia, and even entered hospice Easter Sunday 2015.  Sometimes she would be asleep days/weeks at a time.  She would be given hours/days to live, but she was such a fighter and got to go home from hospice.

Fast forward to 30 AUG 15.  I attended my usual Sunday morning Weight Watchers meeting.  We had a substitute leader that day.  That week's meeting theme was Being Awesome.  The leader asked what we did in the last week that was awesome.  Given that it was a Weight Watcher meeting, many people responded with food related stories.  I, on the other hand, had an activity related story I wanted to share.  I told the leader that as of that day, I had run every single day for an entire year.  She responded with, "That is awesome!  What is your motivation?"  Having never met this substitute leader before, I told her all about the I Run 4 program and my very special buddy, Ruby (I am very proud of my buddy and will talk about her to anyone who will listen).  She then asked me if I had ever gotten to meet Ruby.  I said that since she lives in Australia and is terminal, I probably wouldn't ever get the chance to meet her in person.

After the WW meeting was over, I was approached by another Weight Watcher member.  She handed me her business card, explaining to me that she was a Community Education Coordinator for a local area hospice and that they had a program that would most likely fund my trip to go meet Ruby.  I couldn't believe it.  I was so excited, but wasn't sure what Ruby's family would say.  I know they wanted to meet me in person just as badly as I wanted to meet them.  However, Ruby's health had been declining drastically, and I was afraid they may tell me that it wasn't a good time.  Instead, the response I got back from Ruby's mum was "OMG, yes!!!  We will pick you up from the airport, you can stay with us, and we have a treadmill!!!"  She was worried that the trip would "stuff" up my running streak.  

Just 4 days later, my flight was booked.  Ruby's mum said they were so excited that they must have told Ruby "Cheryl's coming" 100 times.  They said that her little eyes would look around like she was trying to find me.  People asked what I planned to do while I was in Australia.  My response was always "french braid her hair and read to her in person." Three days after my flight was booked, I was on a plane to Australia.  With the 25 hour flight and the 15 hour time difference, it took me a couple of days to get there.  I arrived on a Tuesday morning, missing Labor Day completely.  

Ruby had gone to sleep the Sunday before I arrived and hadn't woken up.  The first thing they told me when I got to the house was that they were told that she could probably hear so they just talked to her all the time.  And that we did.  We talked.  I read so many stories to her.  I got to hold her once (it was easier for her to breathe if she was flat so she couldn't be picked up very much). 

I braided her hair.  I painted her little nails.  I participated in her music therapy and sang happy monthday to her, as I was there when she celebrated her 51^st.  Ruby was asleep the entire time I was there (except for maybe 60 seconds that she opened one little swollen eye.  She tried so hard.). 

My sweet fighter buddy passed away early the morning of 13 SEPT while I was still there.  It was so hard.  Her family said they thought she was waiting for me.  I have come to believe that myself.  I know how important she was (is) to me and felt in my heart that I was there where I belonged, but was worried if maybe I should step back and let the family have time.  However, I heard over and over again from Ruby's parents, grandparents, great-grandparents, aunts, cousins, friends - "Don't be stupid...You are family." - and that is EXACTLY how I felt.

Twenty four hours later I had to board a plane home.  Ruby's mum cried.  Ruby's dad "jokingly" suggested that I could miss my flight.  I pulled away...numb...feeling that I didn't know how I was going to move forward, leaving this family behind.

We are all dealing with it in our own way.  Ruby’s parents left for a holiday shortly after the funeral and haven’t been able to bring themselves home just yet.  I am glad.  Ruby’s little brother, Tate, has been having a rough time too. 

I will continue to run 4 Ruby.  I have continued my running streak and am still posting to “Angel Ruby” on the I Run 4 site (her mum and I decided on that together).  It was tough getting through my first race knowing that her mum wouldn’t be reading her my post, but I finally convinced myself that Ruby would, for the first time, be able to run with me.

-Cheryl

Being terminal, Ruby's parents knew Ruby would net get many birthdays so they held a big celebration on the 11th of every month in Australia. Ruby celebrated her 51st Birthday in September. On Saturday evening Oct 10 (which will be October 11 in Australia), Cheryl and the Kansas BB's ran a 5K to celebrate Ruby's life on what would have been her 52nd Monthday. The BB's Run4 Ruby.

~ Van

It was PR Week! Second the 10K

While training for the 5k I decided that I may as well sign up for a 10k too! Last time I ran a 10k was 5 years ago and I had really just started running. It was the Jingle all the Way 10k here in DC. I clocked in at 1:29! Now, I have ran some really weird distances but I somehow that is the only 10k I had done. So I decided since my training runs that are 6 miles were usually around 1:12 to 1:15 I could go ahead and run another PR race!

So I signed up for the Capital Hill Classic 10k!

Overall the race was ok.
The good: Most of the route was beautiful, it was neat to look at the row homes and DC landmarks. Friendly people and great volunteers, plenty of post race snacks!
The ok: Mile 3 to mile 4.5 of this race was awful!!! It was in a parking lot (a huge parking lot) and you had to run the outer loop on a a very narrow trail. I was constantly bumping into people and it was very congested. Maybe that is why the drummers were there to encourage us! Ha! They were good! Also, I really didn't care for the cotton t-shirt. I don't wear them, they are cut wide and not comfortable. It will just go on my shelf with the others...too bad too the design is cute.

My friend Alexa from KC flew in for a mini vacation and to run a race with me! So glad she was able to come out and visit! It has been fun!

Selfie before the start at the Capital! 

So Alexa is thankfully is a lot like me and likes to get to places a bit early so there is no stress about being late! Thankful that we did plan to get to the metro when they opened because we needed to be on the first train that morning since they were doing maintance and were only running trains every 20 minutes! We arrived at the race and had 30 minutes before the start to unwind! 

The race started at 8:30am sharp and once again the heat and humidity was awful...but you suck it up and deal with it! My plan for this race was to pace myself and keep my pace at under 11 minute miles! I did really well pacing myself..I am sure people wonder why I look at my watch all the time but I really wanted to finish without being totally wiped out! I did really well and my overall pace was 10:52. Miles 1-3 were great and I was right on track...then the dreaded parking lot miles 3-4.5...on a trail with 100's and 100's of my closest friends! You can see on my Garmin my time drops a but but I stayed on track and focused. Coming out of the parking lot was a nice hill...pace is off there..opps! Then I am back on track. I hit the 6 mile mark (according to Garmin) and I kick it up a notch because I am thinking, "Yes, I am going to beat the time I have in my head of 1:11!" and then .2 miles later I see the 6 mile mark...hum..something is not right! Ugh, the course is long! Oh man! Well, needless to say my Garmin 6.2 time was 1:07.58 and the official race time was 1:09.24 for 6.38 miles. That is still over a 20 minute PR from the last 10K I did! 

 Official time and Garmin time were the same!

A sweaty mess but done! 

It was PR Week! First the 5K!

I have been following a faster 5k training plan for awhile now and while some of my training was derailed by surprise vacations (more on that later) I still seemed to PR in both my races this week!

First up: The National Police Week 5k in DC.

It has been while since I have ran a 5k for time, the last 5k I was planning on running for time my daughter signed up at the last minute and I was so happy that she wanted to run with me I didn't care if we ran, walked,  or crawled!

Let me back up a bit...my fasted 5k was 2 years ago in Kansas at the Garmin race and I clocked in at 31.14. I was actually just out there having a good time and I didn't even pay attention to time until I heard the announcer say we have (insert someone's name) at 29.30...WTH...so I ran my hardest and PR'ed that race.  I thought it was a fluke or the course was short, but I had never ran that fast and was super excited.

Now..2 years later....I finally beat that time! Whew!!! It took awhile! I picked the National Police Week 5k because a friend of mine from the gym has done it for a couple of years and recommended it.

The Good: Packet pickup was a breeze and it a neat location. I was also very please with the race shirt. It is dri-fit and cut for a woman. I have already worn it a couple of times! As for the race it's self I loved it. I enjoy the energy of the police officers coming together to support families of the fallen. The police officers ran in groups and sang cadences while they ran. The course was mostly flat and they had plenty of food and water after.

Perfect morning for Packet Pickup! 

2 Mile run, followed by Packet pick up, 

followed by Arsenal of Democracy Flyover

(WW11 Victory Capitol Flyover)

The only down side to this race was the heat and the humidity! Whew!!!! But there is nothing you can do about that except deal with it!!

My plan to PR this race was to run as fast as I could for as long as I could. Ha...my first mile was 8:54, never, ever have I ran a mile that fast!!! Mile 2 was 9:57 and Mile 3 was 10:13..over all my average pace was 9:37! I was so happy! So my Garmin time was 30:10 and official net time was 30:08. I was kicking myself a little because 9 seconds faster and I would have been under 30.

Unofficial Garmin time!! 

My family came out to support me while I ran and I was so happy to see them there towards the end it really did give me a bit of a boost! And they are so sweet they brought me a donut from my favorite donut place in Alexandria! Sugar Shack!! :) 

Mmmmmm!!!!

My friend Melissa was also able to run with me (ha...I mean ahead of me)!! This was her first official 5k and she rocked it! Clocking in somewhere around 27 minutes! She used to say I don't want to pay for a 5k but I have her convinced to sign up for another one in the fall! One I have been trying to do for about 2 years now! 

So fun to run with friends!

Do you see the blue dog? 

Blue Dog for Band of Blue!  

Guest Post by Casey Haskins about Iron Deficiency Anemia

Guest post by Casey Haskins about her experience and discovery of Iron Deficiency Anemia. Thank you Casey for sharing your story.

 

My Terrible and Great Experience with Iron Deficiency Anemia

            So the last time I wrote a blog I talked about the struggles I faced returning to running after a month off. My pace was substantially slower but I was gradually improving and was back on track with training for my first full marathon.

Shortly after I wrote that, my pace started to plummet once again. This time, there was no apparent reason for the decrease in performance and I found this to be extremely frustrating. Not only was I slowing down but I had developed a wide array of issues- terrible heartburn and indigestion, missed periods, restless leg syndrome so unbearable I could hardly sleep at night, an intense burning in my calves when I walked up stairs or ran, and the worst of all was how miserably tired, sluggish, and winded I felt during my runs. I was once a 9 minute mile runner yet I couldn’t run a 12 minute mile without feeling like collapsing.

 I spoke to my sister-in-law/running buddy about my troubles and she mentioned that it sounded like I was possibly low on iron. She suggested that I take a multi-vitamin which might give me the boost I needed. So, off to the store I went and purchased a large bottle of multi-vitamins. I thought to myself, “Alright, I’m going to take this for a month and if things don’t improve, I guess I’ll go to the doctor.”

In the meantime, I was reading different running blogs and articles and discovered that iron deficiency is quite common among females, specifically endurance runners. So I continued to take my horse pill everyday as prescribed but to my disappointment, I was not seeing any improvements. I just hoped that things were going to fix themselves. However, things were not fixing themselves – they were getting much worse. It got to the point where I felt so terrible during my runs I would feel like I was going to vomit or faint. There were a couple of times that I just had to plop down on the side of the trail and catch my breath for 5- 10 minutes while fighting off nausea.

 It was about 2 weeks into taking my vitamin, that I finally decided that enough was enough. I was going to the doctor. I was able to get an appointment a week from the day I called and I was more than ready to find out what was going on with me. The weekend before my appointment was a half-marathon that I had signed up for. I contemplated not running it but decided that I would go ahead and do it anyway since I really wanted to stick with the marathon training I had been doing. My time was 15 minutes slower than my previous half and I really think I only did that well because it was a super flat course.

Frisco half for the Highline for Scouting Half Marathon

A couple days later was my appointment and I told my doctor about everything I had been experiencing. She ran several different blood tests and said she would get back to me. A couple days later I got the call. She proceeded to tell me that I had iron-deficiency anemia. I had let this problem go for so long that I was nearly depleted. She prescribed me some high-dosage iron supplements and asked me to return in a month.

So, I started taking these little green pills and following all of the specific instructions that go along with them (take on empty stomach, take with vitamin c, don’t lay down for 10 minutes after taking one, don’t take within 2 hours of dairy products, tea or coffee, etc….). I was really happy to know that my problem was going to be fixed. However, in 2 days I was supposed to be doing the longest run in my training schedule- a 20 miler.

Now, it was obvious these little magic pills were not taking affect just yet because I still felt miserable but since there was hope I still wanted to stick to that schedule. My sister-in-law and I agreed that it was in both of our best interests to run this one separate. She needed to see what pace she could handle for the marathon and I had to be able to go as slow as I needed and possibly even stop to rest.  The night before the long run, I was angry. I was angry at myself for not going to the doctor sooner, I was angry that I couldn’t keep up with my running partner, and I was angry that I was going to have to go this one alone. My husband and sister-in-law both gave me encouragement as well as words of advice to take it easy as possible.

 I woke up the next morning with a bad attitude and a head filled with doubts and worries. However, I bucked up, laced my shoes, strapped on the Camelbak, and headed to the trail. Four hours later, I had successfully completed my 20 miles. I didn’t feel great, as a matter of fact I felt terrible BUT something great did happen that day. I discovered how truly capable I am. There I was, feeling physically and emotionally worse than I really ever have in my life but I did it. I ran 20 miles by myself. Having a running partner, spouse, or friend is great and I love to share those experiences with other people but there is something so intensely amazing about doing something so physically and mentally challenging without the help of others. I’m the kind of person, who habitually criticizes themselves and sometimes just can’t muster up a feeling of pride. Not on this day though. This day I was proud.

As I sit here typing this, I am 2 ½ weeks into taking my supplements. With each run, I feel better and better. Not only do I feel better and all of my weird issues are improving but I am enjoying my runs again.  I ran another half marathon this past weekend and my time had improved by 14 minutes. I was thrilled with that and also know the next one I run will be a personal best. I’m still on track for my full marathon which will be here in just 2 short weeks. Instead of feeling scared or doubtful, I feel very excited because I know I can do it!

Big Party Half Marathon

Even though I will tell you that becoming anemic is one of the worst things that has ever happened to me (because it really is) it is also one of the best things that happened to me. This is what iron deficiency anemia taught me:

1. I am capable of so much more than I ever thought possible (and so are you!)

2. As runners, we need to have respect for those people at the back of the pack (they are spending WAY more time on their feet than anyone else which shows true effort, determination, and dedication).

3. Don’t make judgments about a person’s pace (fast or slow- it’s all relative to what you are capable of. What is slow for one person may be the fastest another can go.)

4. Even if you are training smart and eating right, it is still possible for you to not to be getting the nutrition your body needs.

5. If you feel like something isn’t right, don’t wait. Go to the doctor.