Friday, November 29, 2013

A Trip Through Memory Lane...

"I can only note that the past is beautiful because one never realises an emotion at the time. It expands later, and thus we don't have complete emotions about the present, only about the past." 

― Virginia Woolf


I was reading through some of my blogs recently. Even though it's still a new organization, there is nostalgia. My April 3rd blog was about the rapid growth of I Run 4 (IR4). We had hit 500 members and 50 matches. I remember feeling elated. Seven months later we hit 10,000 members and 3,100 matches! But I'm not here to talk about the growth, per se, I want to talk about a fraction of our awesome members.



 Let’s start with the amazing Nicholas Jones. I remember when I first heard about this amazing little boy. His mom and dad, Josh and Yvonne, were posting status updates about him. He was diagnosed with Alexander's disease. As Josh put it "it's like all the wiring in his brain lacked coating and kept shorting out." At one point, the doctors said all they could do was make him comfortable until he passes. Miraculously, the next day he seemed to snap out of it, the many prayers had been answered. Nick was a fighter. 

On February 2nd, several months later, this little fighter went home to be with Jesus. He is the reason I created the Remembrance Group. Yvonne Jones is now the Executive Director of that group and both she and Josh are IR4 Board members.


Natalie was the thirteenth runner to join IR4. She had been paired with the wonderful Zoe, daughter of Heather Redington. On the surface, Natalie looks just like any other loving mother and wife. Her profile picture is with her husband and two children, all acting silly (it truly is an adorable picture). But life for her hasn't always been blissful.

Eleven years ago, Natalie was married to Drew Laird, a highly motivated individual - an avid runner who became a Blackhawk helicopter pilot at the age of twenty-two. When Drew was twenty-three, two major things happened in his life - he and Natalie became first-time parents with the birth of their son Caeden. Secondly, he was deployed to Iraq for 18 months.



When Drew returned home from his deployment, he shared with Natalie that he wished to become one of the military's elite - he wanted to become a Navy SEAL. His self-training became very intense - he began "training and running and swimming even harder than he ever had before."

On May, 19th 2008, he ran his first marathon - the Colfax Marathon. When he crossed the finish line, Natalie was there to cheer him on. By her own admission, she "had little motivation so instead I would cheer him on!" 

They were pregnant with their second son, Ethan, and  decided to take Memorial weekend to visit a nearby National Cemetery to honor fallen heroes. 
They discussed what would happen if Drew should pass away. "He reminded me gently that he loved Jesus and he would be in heaven with the Lord, so I would need to do whatever helped me here."

The following day it was business as usual. Drew was at the local training center training on his own for a 50-meter underwater swim without oxygen. "It is called Shallowater blackout," according to the Coroner. "He had been holding his breath for too long and would not even have felt lightheaded. On May 27th, 2008, he went to be with Jesus at age twenty-five.

Two years later, Natalie started running the race set before her. She had started training for her first marathon - the first marathon Drew had run - the Colfax. "So with many tears, I ran the Colfax Marathon with my sister, three years after Drew died." 

During her training, God had another surprise for her. She had met a wonderful man, Matt. The two are now happily married. As for Natalie, she has completed two marathons since - one being the Rock and Roll Marathon in Denver.



To keep this blog from becoming a novel, I will end with Amanda Sullivan. Amanda has been through some pretty rough times. First she was stopped in her vehicle and hit by a car at full speed because the driver was texting and speeding - crushing her face, shattering her skull, and causing several brain injuries. Then six weeks later she was walking on the walkway to PT when a driver mistakenly put his car in reverse and pressed the accelerator and slammed into Amanda, causing many debilitating injuries - including cracking her skull again. She spent the next year in a bed.

Amanda, despite the fact fate dealt her an awful hand, has become the epitome of inspiration. I for one am truly inspired by her and her boyfriend, Todd. Watch this video!



This is just a tiny fraction of the inspiration inside the confines of IR4. Everyday our buddies fight - never give up. We are so blessed to read the stories after stories of true heroes - our buddies! So who do YOU run for?

Saturday, November 9, 2013

Blest Be the Tie That Binds...


When two people are connected, there is a tie - a common thread they both share. For some, it may be church, and for others, it may be a movie or music. For Michael Wasserman and me, it was his artwork and The International Down Syndrome Coalition - in the beginning, at least. Now the tie that binds us is I Run 4. Together, with the help of God, he and I have changed some lives. 

Before IR4, Michael and I were complete strangers, and in a way, we still are because we have never met face to face or skyped. But he is still my best buddy! Now if Michael hadn't been blessed with Down syndrome or cursed with bilateral hip dysplasia, we may have never crossed virtual paths. So I guess it's safe to say that those two diagnoses are also a tie that binds us together.

For Yanni, the tie is completely different. Her tie with runner Devon Allwine is something I had never heard of before - schizencephaly. So I had to do some wiki-research! (yes, I linked the word to save you some research time). Yanni's mom Lisa Wilson says "her limitations with mobility and whatnot are fairly standard for her condition. But I don't want to focus much on that because she is a beautiful little girl with a smile that lights my world and the world of so many other people."


Logan's tie with runner Renee Baio is called Fragile X syndrome - and Renee's tie with I Run 4 is the nonprofit organization founded by her and husband Scott. Some of the children in The Bailey Baio Angel Foundation are matched in IR4. The BBAF provides "certain assistance and emotional support to children and families affected by Organic Acidemias and other diseases detected through Newborn Screening." They started the nonprofit after a terrible scare...


"Within days of her birth, Bailey tested 'positive' for a metabolic disorder known as “G-A 1”. For the first ten weeks of her life, we lived a nightmare founded in overwhelming love that we felt for this gorgeous little Angel who had graced our life, combined with a level of fear, grief, and pain that we had never before experienced in our lives.'As it turned out, our prayer for a miracle was answered as Bailey’s final round of tests came back showing that the first tests had been ‘false positives’"

The Baio's then set out to help those whose tests weren't as fortunate.

What are some of the other ties in IR4? Let me give you a little list...
cerebral palsy
spina bifida
autism
nonketotic hyperglycinemia
mitochondrial disease
leukemia
leukodystophy
sensory integration disorder
epilepsy
deletion 22q13
trisomy 9
CDKL5
muscular dystrophy
multiple sclerosis
spinal muscular atrophy (SMA)
alternating hemiplegia of childhood (AHC)

(This is quite a list and I apologize for the ones I missed.)

Now I know this wasn't my typical up close and personal blog but I want people to know that these are the ties that bind us together in this incredible melting pot called I Run 4. We are truly blessed to have wonderful people like them in IR4. This is where bonds are formed and EVERYONE is beautiful! Everyone's life here is equally important and we want everyone's voice to be equally heard. Our buddies are the words and we are their sound.

Be the Sound and ask "Who do YOU run for?"