May 11th, the day before Mother's Day, Team Ari ran the Mermaid Series Half Marathon. Our goal was to complete Half-Marathon #2 in our Celebrate 13 Challenge (13 halfs for Ari's 13th Birthday this year). But boy did we get so much more than just working towards our goal. We were joyously welcomed into the Mermaid Community! The Mermaids are a diverse group of female athletes sharing the fellowship of running. They are beginners, intermediates, Elite Runners, First timers, Young, Old, Middle-Aged, & Girls Just Wanna have fun runners!!!
At the startline, Music was playing, runners were chatting, and much to our surprise Ari's name was announced as being the youngest half-marathon participant for this race. The Announcer asked for Ari to identify herself in the crowd so that she could be acknowledged. Both Ari and I happily raised an arm up in the air so she could be seen in her chair. Immediately there was a loud roar of applause! We were truly taken aback to have such a warm and celebratory atmosphere. I could feel my eyes well up with tears of joy for Ari. I felt so grateful to be in the company of women who were embracing disability and inclusiveness. They had no idea how much it meant to me that Ari had this kind of heroes welcome!
So we started this footrace on such a high note. We were off and running and feeling more motivated than ever. Ari high-fived runner after runner. We were greeted each time by participants we passed or who passed us. Virtually everyone made a point of telling us how "inspired they were by seeing us run together". At Aid stations volunteers called out "Go Team Ari!", spectators waved and cheered as well. It felt like we had this immense fan club the entire distance on the course. Mile after mile we were greeted with Smiles. I knew I had a runners' high because it felt like I could have run forever. Time flew by despite being a very hot 80 plus degrees for most of the race
Thirteen miles down and as we approached the finish line we could see Michael with the camera. Ari waved and was picture ready for Dad! We could also see a large crowd of people gathering on both sides of the race chute. Then we heard the Announcer call out, "Team Ari is at the Finish Line!" More people gathered, and as we came through the chute the crowd chanted, "Team Ari, Team Ari!" This was surreal. We felt like Olympians. This was just a spectacular event with great organizers, staff, volunteers, & runners. But what touched us so much was the attitude of inclusiveness. Ari was an athlete, just like any other athlete on the course. We will always cherish this race and vow to run it again next year. So, it was official, we were part of the Mermaid Family Now and Forever Proud. Mermaids 'R' Us.
Wishing you Miles of Smiles ~ Team Ari
Showing posts with label mother/daughter disabled athlete duo. Show all posts
Showing posts with label mother/daughter disabled athlete duo. Show all posts
Thursday, June 6, 2013
Monday, May 27, 2013
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
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
Tuesday, May 21, 2013
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
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
Friday, May 17, 2013
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!
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!
Friday, May 10, 2013
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
Friday, May 3, 2013
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...?"
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...?"
Sunday, February 10, 2013
Wednesdays with Joy
Every Wednesday for the past seven years this wonderful woman comes into our home and embraces us with her endless love and compassion to serve special needs family's like ours. Her name is befitting, her name is Joy. She is a nurse, caregiver, friend, & nurturer to all of us. She has been a "grandmother" to Ari, teaching her things like baking, sewing, and making the best ham and cheese sandwhich that one could ever take a bite out of. And I can't forget the basketball lessons. Joy loves to teach Ari how to dribble a basketball in our hallway, their makeshift basketball court, where Ari pretends to beat her best friend at hoops. She brings countless hours of laughter and joy to our hearts each week. She always takes special care to remind us of the things that Ari CAN do! I think its a gift of hers that we will always cherish.
Joy has so many special qualities. I like to call her our very own "Betty White". She has more humor, energy and drive than most twenty somethings. She still works and plays like a person in their thirties. She generously donates her time like a person in their sixties. I am forbidden to share her age but lets just say she could possibly be Betty's younger sister. Joy defies age and limits. She is so full of life and I wish I could bottle her endless optimism. Nothing can keep her down, nothing stops her, not even a terminal illness. If you were to meet her you would have no idea that she is a cancer survivor or that Cancer struck again for the third time this past December. It seems like it was such a long time ago but less than two months have passed since the cancer reared its ugly head.
It was almost Christmas and I found myself at the hospital everyday with Joy while she was undergoing surgery & treatment for this dreadfull disease. She insisted that I not come to see her, that I had enough on my plate to keep me busy with home, work, and the holidays. But I insisted I needed to be there. She thanked me for comforting her and told everyone I was there to give her emotional support. What she didn't realize was that I needed reassurance. I needed to see her. I was not ready to say goodbye and I needed another Wednesday with Joy. So everyday became a Wednesday that week, full of endearing moments for me. She said she just wanted to taste a cookie, so I brought 2 dozen of her favorite cookies to share with she and her hospital roomie. I didn't care if she only took one bite, I just wanted her to have a smile on her face. She said she wanted to travel, so I found a beautiful exotic vacation magazine for her to read. She spoke about her unfinished bucket list. I wept privately all week as she talked about her cancer and I listened. During this time I learned even more about this remarkable woman and her life's story. She is truly my Heroe. She is truly a Warrior.
Last week twenty-five of us gathered for a surprise Birthday bash for Joy. We all came to honor and celebrate the many years Joy has graced our lives with her presence. It was the best birthday party I've gone too in a long time. In true Joy fashion she was so humbled that her family and friends would come together for her special day. We all hope that we can celebrate another birthday with Joy. I secretly hope that I can celebrate more Wednesdays with Joy!
Wishing you Miles of Smiles
~Team Ari
Joy has so many special qualities. I like to call her our very own "Betty White". She has more humor, energy and drive than most twenty somethings. She still works and plays like a person in their thirties. She generously donates her time like a person in their sixties. I am forbidden to share her age but lets just say she could possibly be Betty's younger sister. Joy defies age and limits. She is so full of life and I wish I could bottle her endless optimism. Nothing can keep her down, nothing stops her, not even a terminal illness. If you were to meet her you would have no idea that she is a cancer survivor or that Cancer struck again for the third time this past December. It seems like it was such a long time ago but less than two months have passed since the cancer reared its ugly head.
It was almost Christmas and I found myself at the hospital everyday with Joy while she was undergoing surgery & treatment for this dreadfull disease. She insisted that I not come to see her, that I had enough on my plate to keep me busy with home, work, and the holidays. But I insisted I needed to be there. She thanked me for comforting her and told everyone I was there to give her emotional support. What she didn't realize was that I needed reassurance. I needed to see her. I was not ready to say goodbye and I needed another Wednesday with Joy. So everyday became a Wednesday that week, full of endearing moments for me. She said she just wanted to taste a cookie, so I brought 2 dozen of her favorite cookies to share with she and her hospital roomie. I didn't care if she only took one bite, I just wanted her to have a smile on her face. She said she wanted to travel, so I found a beautiful exotic vacation magazine for her to read. She spoke about her unfinished bucket list. I wept privately all week as she talked about her cancer and I listened. During this time I learned even more about this remarkable woman and her life's story. She is truly my Heroe. She is truly a Warrior.
Last week twenty-five of us gathered for a surprise Birthday bash for Joy. We all came to honor and celebrate the many years Joy has graced our lives with her presence. It was the best birthday party I've gone too in a long time. In true Joy fashion she was so humbled that her family and friends would come together for her special day. We all hope that we can celebrate another birthday with Joy. I secretly hope that I can celebrate more Wednesdays with Joy!
Wishing you Miles of Smiles
~Team Ari
Friday, February 1, 2013
Running for Keeps
In 2006 I made one of the best decisions of my life, second to marrying the man I love and having three awesome children. Drum roll please .. I decided I wanted to be a runner. Now mind you, I had never been athletic. I was actually rather challenged when it came to sports. My physical activity as a child consisted of cheer leading and dance. But, I had alot of reasons to run now. Ari was a huge incentive because I knew she should would never be able to run and I just felt like I shouldn't take anything for granted anymore. I also needed a big time stress reliever to keep my sanity. So I started jogging on the treadmill at my local gym and I discovered it was actually pleasant. I really liked breaking a sweat as I tried to get faster on that machine!!!
So, often times I would challenge myself by increasing the speed or incline on that lovely equipment and I slowly found myself running five miles and not even realizing how much time had passed. I also took great pleasure in running along side of a gym rat who could run faster and looked much more like a runner than myself. I would glance at their numbers on the machine next to mine and take notice of the Miles per hour (Mph), distance, and time logged. I was secretly racing them in my mind!! Slowly but surely I fell in love with running. I started reading running magazines and researching training plans. My very first racing goal was to complete a 5K in less than 30 minutes. I recruited my athletic soccer player son to pace me at my first race. Say Yes to Success. Nic paced me into the finish line in 29 minutes and 49 seconds. A runner was born!!
And so the story goes, I saved my sanity and kept running, & running through many marathons, and even some ultramarathons. Running was and still is my quiet time, my re-energizer, my peace & calm, my endorphin rush, and my second love. It is and always will be a bonding time with my children that I am eternally grateful for. I have run some extraordinary races in extraordinary places. From the Coastal landscape of Monterey, to the California Headlands, over the Golden Gate Bridge, down the American River Canyon, and through the night at a 200 mile relay in Southern Oregon. From the Redrock Canyons in Utah, to the Historic start line of the Boston Marathon. I have heard the Wall of Cheer from the girls at Wellesy and received many a high five from the Boston College Boys at Heartbreak Hill. I have run through the streets of Paris, down the Champs Elysee to the Eiffel Tower. I have passed Frenchmen and listened to the cheers of Young children as I ran a 20k race from Paris to St Germaine!
No matter where or how I run I will always be grateful for the ability I have to use my legs and stride. I cherish each and every run I have experienced with Lindsay, Nic, and now Ari. It has been a labor of love to push Ari in her chair or attempt to keep up with my fast competitive runners Lindsay & Nic. They motivate me and make me want to strive to be my best. Whether its the best runner or being the best mother I can be. Running is for keeps in this family!
~With Miles of Smiles,
Team Ari
So, often times I would challenge myself by increasing the speed or incline on that lovely equipment and I slowly found myself running five miles and not even realizing how much time had passed. I also took great pleasure in running along side of a gym rat who could run faster and looked much more like a runner than myself. I would glance at their numbers on the machine next to mine and take notice of the Miles per hour (Mph), distance, and time logged. I was secretly racing them in my mind!! Slowly but surely I fell in love with running. I started reading running magazines and researching training plans. My very first racing goal was to complete a 5K in less than 30 minutes. I recruited my athletic soccer player son to pace me at my first race. Say Yes to Success. Nic paced me into the finish line in 29 minutes and 49 seconds. A runner was born!!
And so the story goes, I saved my sanity and kept running, & running through many marathons, and even some ultramarathons. Running was and still is my quiet time, my re-energizer, my peace & calm, my endorphin rush, and my second love. It is and always will be a bonding time with my children that I am eternally grateful for. I have run some extraordinary races in extraordinary places. From the Coastal landscape of Monterey, to the California Headlands, over the Golden Gate Bridge, down the American River Canyon, and through the night at a 200 mile relay in Southern Oregon. From the Redrock Canyons in Utah, to the Historic start line of the Boston Marathon. I have heard the Wall of Cheer from the girls at Wellesy and received many a high five from the Boston College Boys at Heartbreak Hill. I have run through the streets of Paris, down the Champs Elysee to the Eiffel Tower. I have passed Frenchmen and listened to the cheers of Young children as I ran a 20k race from Paris to St Germaine!
No matter where or how I run I will always be grateful for the ability I have to use my legs and stride. I cherish each and every run I have experienced with Lindsay, Nic, and now Ari. It has been a labor of love to push Ari in her chair or attempt to keep up with my fast competitive runners Lindsay & Nic. They motivate me and make me want to strive to be my best. Whether its the best runner or being the best mother I can be. Running is for keeps in this family!
~With Miles of Smiles,
Team Ari
Sunday, January 6, 2013
Baby Steps
Four Years, Seven months, Nine Days, it marks a date on our calendar of hard work and extraordinary effort from Ari. That day is forever etched in our minds. As a mother, father, sister, and brother we couldn't have been more elated. That day is the first day Ari walked independently. It was cause for a huge celebration in our family. It was as monumental as a birthday, it was a milestone that we thought might never happen. It was a culmination of years of physical therapy, occupational therapy, water therapy, botox, braces, walkers, & appliances. Throw in some major determination, perseverence, and of course many cheers and applause from all of the staff at the children's clinic who worked so diligently to see that day come to fruition for Ari. It was years of taking those small gradual baby steps towards success that ultimately enabled Ari to walk. Many kids and adults would have given up on walking, but Ari didn't.
So as I started to set goals for this New Year I was reminded of my daughter's perserverence. I thought about how she still takes baby steps at physical therapy, how she is willing to try new exercises even when it challenges her body and brings her discomfort. Several months ago she said, " I want to ask my physical therapist to teach me how to do a cartwheel". It was so endearing to hear her request. I didn't have the heart to tell her not to ask, but I was secretly nervous that she might be deflated when she couldn't actually perform a real cartwheel! Leave it to Ari, where there is a will, there is a way. Much to my surpise, she came home after her PT session and joyfully showed me her beautiful version of a cartwheel. It wasn't a typical cartwheel by any means but to her it represented the movement she desired to perform. Ari has a way of tackling obstacles and challenges with remarkable joy and grace, and she has taught me so much. I have learned that it is ok to take baby steps, its ok to be unconventional, and its ok to fall down and pick yourself up and try all over again. Ari will never be able to skip, hop, run, or jump, she may never be able to do a conventional cartwheel but it doesn't matter. All that matters is that she keeps trying and she doesn't give up on herself.
We wish you Miles of Smiles on your 2013 Journey!
- Team Ari
Sunday, December 9, 2012
Milestones
Starting middle school is a milestone in every child's life. Afterall it is the begining of "teendom" as we say.
So in August of this year, just like any typical family we as parents had our fears and concerns about Ari's leap forward into middle school. But our anxiety level was higher than normal because Ari is not just an average Kid. She has Cerebral Palsy and is Visually Impaired. How would the kids at school react to her disabilities?would she be treated ok? would she be picked on? would she be accepted??? Middle school is rough, it is the brink of adolescence and the begining of the dreaded identity crisis. It can bring out both the best and the worst in kids. Our two older children survived those rough middle school years but could Ari survive?
One week into school, it hit us like a ton of bricks that the challenge to overcome was not going to be lack of acceptance from her peers, but rather, it was Ari's lack of acceptance. Accepting her OWN physical limitations, and struggling to get beyond them. You see, we were all so overjoyed that Ari's peers at school were embracing her with open arms. She was navigating the social scene quite well. She even founded a new club, lunch time Jump Rope club as a means to interract socially. Of course she can't actually jump over the rope, but she turns it. Gleefully singing with each swing of the rope turn. She was experiencing success as she transitioned into 7th grade, but she kept voicing her frustration about PE class. We would pick her up from school and she would be overwelmed with sadness. As she spoke about PE Class we learned it was a marine style bootcamp that demands rigorous physical exercises. That, was the culprit of her tears, it wasn't the kids, nor the academics, nor the environment. Each day the tears were streaming down her face as she realized her body would not move or cooperate even a just a little bit, to engage in those exercises that were expected of her. It was a milestone alright, but not of the happy kind.
So we responded with our get up and advocate for our daughter mode. Due to years of practice, Michael & I, are very good at springing into action with our strategic problem solving. We went to school, observed PE, spoke with "coach", the name PE teacher prefers to be called by. Michael even did the "Man to Man" talk with Coach in the hopes of getting him on board by reaching out to Ari, instead of alienating her. We set up the modified curriculum for Ari with her adaptive PE teacher's input. We made suggestions, lots of them to assist Ari and improve her success rate with the Physical activities she CAN do. So the wheels were turning in a more favorable direction, but the spark in her eye and the smile on her face were not as bright.
She was still so sad, and it hurt me as a mother to see her pain. More than anything we have always wanted to protect her from the emotional pain that so often is present with the hurdles disabled children face. So on this particular day, as I tied my running laces to go out the door for a run, it hit me hard. She stopped me and said, "I want to run with you". She had said this before on many occasions, but this time it was different. It was the tone of her voice, I could hear her sadness. It was the expression on her face, it tugged on my heart strings. There was a void in her eyes and I wanted to fill it. I immediately responded without hesitation, "We will run together, we will run a race together, I will make it happen, there is no doubt in my mind. Lets run a 5K together next week!
So on September 1 2012, Team Ari was rolled out. Literally rolling that is! I pushed Ari in her wheelchair for our first race together. Appropriately it was the Balloon race, a 5k race to benefit Children's Hospital, Madera. After all, we had spent over 10 years receiving treatment from providers at this wonderful institution, so it seemed fitting that we would test our wheels on this course. It was an exhilarating experience for Ari, as she loved feeling the wind on her face, high fiving spectators on the course, and asking me to push her faster to cross the finish line! We laughed and shared a moment before we ran back out on the course to catch Michael. Ari was beaming as we crossed the finish line for a second time with Dad. I could see the brightness in her eyes and face returning. I fought back the tears, but these were my tears of joy, not sadness. Immediately Ari requested that we run another race, but it had to be 10K next time, she said. She wanted to go a further distance. Don't give up she said, just keep going! So it was official, Team Ari was born. It was another Milestone, and she owned it, with Miles of Smiles.
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