R-E-S-P-E-C-T

   R-E-S-P-E-C-T, find out what it means to me. Funny how lyrics to a song can come crashing through your brain at the moment you  need to hear it the most. Just a little bit, Just a little bit! Sing it Aretha. Those lyrics carried my Legs, Heart, & Sole as we ran away from a crazy race director several weeks ago at a half-marathon. Faster, faster!
   It all went down like this....Team Ari was getting ready at the start line for our second attempt at beginning our  Celebrate 13 Half-Marathon schedule. Two weeks prior on what should have been a glorious race day at the Napa Valley Half, ended up being a disappointment as we were forced to withdraw due to Ari's injury and respiratory illness. So here we were in anxious anticipation of starting a great journey at another race when suddenly and unexpectedly, BAM, a rather angry gentleman approached Michael. "You are not going to race with THAT thing are you?" he said. Michael paused for a moment but I could over hear him politely explain that Ari was being pushed in her adaptive running chair.  We were cleared with the Race Director prior to registering for this race. Angry man abruptly exclaimed he WAS the race director and his Co-Director did not clear it with him, therefore we should NOT be running this race. I realized that this could easily escalate so I reassured Angry man that Team Ari races often and we are very skilled at it. Angry man huffed and begrudgingly agreed the only way we could participate was to start at the back of the pack. I'll take it, I thought, even tho it is against my better judgement. We were being punished, just like other women, and other ethnicities before us had been punished.  You can't sit at the front of the Bus, You are only allowed to sit in the back! But what Angry man didn't realize due to his ignorance is that I can clip a fast pace pushing Ari and adaptive chairs should be positioned in the middle to the front of the pack for safety.
   Finally, after what seemed like an eternity the race begins. Ari and I are making our way through the crowded pack, safely passing slower runners. We are talking, laughing, and excited like we always are when we begin to run.  When suddenly out of the corner of my eye, I see Angry man running after us, waving his arms, and yelling. I slow my pace down for a moment just long enough to hear him rant, "You have to be at the back, you can't be here!!!!!" He is lunging forward with his hand outstretched as if he is going to physically knock me over. He is so close I can hear and feel his panting breath. I am terrrified now.  Adrenaline is surging through my body. I am in flight mode. In a flash all I could imagine was that this is how Kathrine Switzer must have felt when she was chased down at the  Boston Marathon. While attending college, Switzer entered and completed the race in 1967, five years before women were officially allowed to compete in it. She bravely fought off a Race Director who attempted to throw her off the course. She had several male friends who served as body guards and helped her fight off her attackers. Where is a Bodyguard when you  need one?
  Thats where Aretha came into play for me. I started hearing her lyrics in my head, R-E-S-P-E-C-T! And I told Ari hang on, we are running for our life away from this junkyard dog. Ari laughed and yelled faster Mom, faster. Just a little bit, just a little bit!!!! My Legs magically began to glide effortlessly like I was an olympic runner going for the Gold Medal. We kept going until I could no longer hear or see Angry man on our tail. I think we covered the next three miles on record pace. Thanks for the song and thanks for the respect Aretha.
Wishing you Miles of Smiles~Team Ari

Loss of innocence

   Arianna was 6 months old when we got the "diagnosis".
C and P became the two letters of the alphabet that I was on a mission to study, research, understand, and get a grip on what it was really going to mean for our beautiful baby girl. Frankly I had no idea that those two little letters could make me feel like I was learning a foreign language. I spent hours online with a medical dictionary of terms that were often seriously scary and too frightening to understand. Every medical report, lab result, MRI, medication, procedure, was a new class lecture that I was forced to study.
    In some respects I think intellectualizing the diagnosis was my way of trying to process my grief. In order for me to deal with the emotional pain I was experiencing I had to digest all the literature I could about Cerebral Palsy first. I needed to gain some sense of control because so much of our life was now out of control. We didn't have a say in all of this. We didn't choose this for Ari and it was not the life we thought she was going to have. No parent chooses CP. In retrospect it felt like one day we woke up and loss our innocence. Life could and did change in an instant, and we all felt incredibly vulnerable.
  I still feel vulnerable at times. I worry about the world that Ari lives in and how it treats her. As special needs parents most of us have come to know with great familiarity the prejudices and discrimination that our disabled children are faced with. Our fears get reinforced when we have negative encounters with medical professionals, family, friends, strangers, school personnel, and the public. Unfortunately this happens all to often. We find ourselves standing up for our kids, protecting them, advocating that they have the same rights and opportunities that the non-disabled have. Then we have the difficult task of repeating this over and over again like a broken record. If I had a dollar for every time Michael or I have had to defend, assert, and protect Ari's legal rights as a disabled person I probably would be a rich woman.
   I hope that our experiences will help other special needs families new to navigating the world of CP or any other disabilities. I didn't have a mentor to hold my hand and walk me through this process. I wish that I had had another special needs mother to speak with, to share with, to cry with, to laugh with, to calm my fears with. I had Michael though and together we walked through this journey and made it to the other side. Although we loss our innocence and sense of security we gained so much more. We gained  resiliency!
Wishing you Miles of Smiles ~ Team Ari

Fridays Fabulous Women

This is a fantastic Friday as Team Ari made it into Friday's Fabulous Women, check out our link
http://on.fb.me/16oJzD5  at this great site by www.seven2success.com. Mirjam Stoffels highlights inspiring women all around the globe! So honored to be a part of this community of invincible women. Thank you Mirjam!

Mothers and Miles

     
   Its Mother's day weekend and we want to wish every mom across the globe a very special Mother's Day! We are extraordinarily grateful that we can celebrate this weekend by running our #2 half-marathon on our Celebrate 13 race schedule tomorrow morning at an all Women's Event. We are hoping to see many mothers, daughters, sisters, grandma's, aunts, cousins, and friends lace up their shoes and join together to honor "MOM".
   To all of the Mother's with a special needs child, we salute you. You are the true wonder women of the world who overcome  many challenges and obstacles for your child, you earn a medal each and every day for the marathon hours of caregiving you lovingly give to your children. Every mile we run tomorrow will be in your honor and your family's honor!
Wishing You Miles of Smiles ~Team Ari 

What if???

   April 12th, 2013 was supposed to be Ari's Friday Party. Our plans were to pick up Ari from school and watch the Yankees Game and barbeque some hot dogs to kick start our weekend. But it wasn't meant to be.
  When we arrived at school, Ari was with her Aide and she was in tears. She had fallen on the locker room floor. It wasn't her fault. She had slipped on someone's soap, that was carelessly left there and a danger to any student whose foot might land there. We immediately knew something was terribly wrong despite the Aide's effort to mask it. Ari was voicing a great deal of pain about her left ankle and leg which is quite unusal considering the fact that she has little sensation on her left side.
   So the medical journey began. We drove rather quickly over to our doctors office and then got sent for xrays. Two days later we were at an ortho's office getting a cast on Ari's left Ankle to immobilize it. Her ankle looked liked the size of a baseball. It was so swolen, purple, and bruised. She was back in her wheelchair for 3 weeks. Since then we have visited our pediatric ortho and physiatrist at Shriners for more xrays, an air cast, and orders for physical therapy 3 times/week for the next 3 months.
   I think we are still in shock and trying to deal with the reality of Ari being in a wheelchair 24/7. The Doctors believe this will be a long rehab as her muscles and tendons attempt to heal. We are trying to be optimistic but it feels like we got the wind knocked out of our sails.. It has brought back all the memories of fighting with and for Ari to ambulate and it seems quite unfair that she has to suffer because of someone else's carelessness and neglect. We are angry that she has to start all over again with learning to walk, we are angry that she's lost some of her independence, we are angry that the adults we entrusted to be responsible while she was in their care at school failed her miserably, and we are angry that those adults don't even have a clue at the loss that we are all experiencing!!!
   I think the uncertainty scares Michael & I both. The fear of not knowing when she will walk again. The "what if...?"