Thursday, June 6, 2013

Mermaids 'R' Us

    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

Monday, May 27, 2013


   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

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

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  at this great site by 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...?"

Thursday, April 11, 2013

Yes We Can Cross Any Finish Line!

It has been a very exciting month for us @ Team Ari. In March we ran our first marathon and decided we are not stopping! In honor of Ari becoming 13 in April we will begin our Celebrate13 Challenge which translates to running 13 half-marathon(13.1 miles) events  in 2013. To kick start our journey we were recently honored in a story by Women You Should Know. Check us out in this article!
~Wishing you Miles of Smiles, Team Ari

Thursday, March 7, 2013

The Gift

I will be your voice when you cannot speak up for yourself
I will be your eyes when you cannot see
I will be your legs when you cannot run
I will be your arms when you cannot reach high
I will be your hands when you cannot write
I will be your fingers when you cannot button a shirt or zip a pant.

I will be your biggest fan when you try something new
I will be your protector from harms way
I will knock down the doors and barriers when you can't
I will try to stop the hate
I will be your mother, advocate, cheerleader, doctor, nurse, mentor, nurturer, & therapist.

And you will be my teacher
You will show me how to appreciate all that I have
and never take anything for granted
You will show me how to enjoy every sunrise, lavish breakfast in bed sundays,
and celebrate pigtail mondays
You will show me how to laugh when I feel like crying
You will show me how much fun it is to dance to Katy Perry before you go to bed each nite
You will  show me that the prettiest color in the rainbow is your favorite color blue
You will show me how to be the best mother, wife, friend, and human being that I can be
You will teach me things I never thought possible
And I will be your forever loving student.

Wishing You Miles of Smiles
~Team Ari

Friday, March 1, 2013

Liebster Award

I graciously accept the Liebster award and feel quite honored to be given this distinction with these other great bloggers!  Thank you for choosing me K, who's blog, Transcending CP: Shattering the limits of a disability is a fantastic read. K is undoubtably an author in the making, so I wouldn't be surprised to see her publish a book down the road!

Here are the rules regarding the Liebster Award, as copied and pasted from K's blog:
  1. You must thank the person who gave you this award 
  2. You must display the Liebster heart on your blog
  3. You should nominate 3-5 up-and-coming blogs (some say 200 is small, others say 3000 is small) 
  4. Each person must post 11 things about themselves 
  5. Answer the questions given to you by the blogger who nominated you
  6. Create 11 questions for those you nominate to answer
  7. Notify your nominees and provide a link back to your post. 
  8. Don’t give the award back to the blog that gave it to you.

Eleven things about me:
  1. I am a runner.
  2. I wear crazy socks 
  3. I am a peanut butter cup junkie (Trader Joes sells the best milk chocolate peanut butter cups!)
  4. I can never find my car keys!!!!
  5. I love dancing to Katy Perry music with Ari
  6. I have always wanted to learn to play the piano (its on my bucket list!)
  7. I am scared to drive over bridges but I love, love, love running over the Golden Gate Bridge
  8. I am a technophobe. I just bought my Iphone one year ago
  9. I hava pet peeve. I hate rude people!
  10. I am a huge New York Yankees Fan! You can't keep fme rom watching a game:)
  11. My first car was a white convertible MGB. I still wish I had it!
It has been so difficult to select blogs for this award as so many of them touch my heart and are inspiring!
But here are the bloggers that I have decided to nominate. :-)

Cary at The Small Stuff: Cary is the mother of twin boys with CP and her writings are profound. Love what I read , especially the post "New Dreams":-)

Bron at Big Brother,Little Sister & the Baby. Bron is an athlete too!I love her photographs of all her children. She is amazingly talented.

Michelle at Big Blueberry Eyes: A mother of two children,one with Down Syndrome. Very uplifting and the kids are adorable too!
These are the questions that K had for her nominees, I had fun in answering these thought provoking questions :-)
  1. What is your favorite meal? Crab toss salad at my favorite shabby chic downtown restaurant
  2. If you could go on vacation anywhere, where would you go? Paris, I love Paris in May!
  3. What is one thing that you have learned from special needs? I've learned so many things but if I had to choose one I guess it would be that's "its journey not the destination" that really matters.  
  4. Do you have a favorite quote? If so, what is it? A hero is an ordinary individual who finds strength to persevere and endure despite overwelming obstacles ~ Christopher Reeve
  5. What is one movie that you could watch over and over again without getting bored? Mean Girls, lol
  6. What is one skill that you wish you had? playing the piano
  7. When you were a child, what was your favorite toy? Can't say I remember, but I loved riding my bike
  8. What is your favorite animal? A bischon
  9. What is your favorite candy? Trader Joes Peanut Butter Cups
  10. If you could teach the world one lesson, what would it be? To respect individual differences
  11. What is your earliest memory? standing in my crib, waking up from a nap and wanting oreo cookies
These are the questions I have created for my nominees:
1. If you could be president for a day what law would you enact?
2. If you could have dinner with a famous person, who would that be?
3. If you could win the lottery, what would you do with all your loot?
4. What is your worst habit?
5. Who is your favorite actress/actor?
6. What was your best friends name in elementary school
7. How old were you when you had your first kiss?
8. What is your favorite fragrance?
9. If you could change your name what would you change it too?
10. What is your favorite charity?
11. What strengths have you aquired since you have had a child with special needs?

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

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

Friday, January 25, 2013

The Placard

   Ari was about two years old when I had this conversation with our beloved pedatrician, a doctor that held true to his beliefs of practicing medicine and serving the patients that he saw daily. He was a miracle worker in our eyes and will always hold a special place in our hearts. He saw our children for twenty years before he closed his private practice and pursued other professional dreams, Thanks Dr. K!!! We still miss you dearly. 
   So...getting back to our conversation over 10 years ago. It went something like this: "Dr. K, I think we need a temporary handicapped placard. Ari is getting bigger and it's getting a little dangerous dodging cars while I carry her through the parking lots for all the appointments we have. The weekly blood draws, the Dr. visits, and trying to make it to all the school activities for Lindsay and Nic is getting more challenging. Last week I thought we were going to be roadkill when we had a near miss with a truck. What do you think?  His reply: " Kelli, I think you need a permanent placard, not a temporary one, I will complete a DMV form for you right now".  "Uh, no, that's not what I want", was my immediate reply. "I want a TEMPORARY ONE!!!!  not a permanent one Dr.K". And so the conversation ensued, me with my optimistic attitude that Ari's disabilities would be temporary in nature, and he with his realistic, empathic confrontation that we were going to need all the supports in place for the long haul. I was stubborn and held my own in this discussion. But in the end the reality was that these disablilities are permanent and not going away. Permanent placard versus Kelli, and the Placard Wins, Ugh!
  So three weeks later, the Blue Placard arrived in the mail. It looked so sterile, official, and final. It had Ari's name on the document. The DMV issues this paperwork accompanied with all the rules/regs for its use. The form must be kept in our auto while we transport Ari; said disabled person, named on it. Ding, Ding, Ding...So, here is your Passport to Disability, you are now boarding the flight to Cerebral Palsy.  Please have your ID ready!  I learned I needed to laugh and poke fun at my obstinance in order to cope. Despite my humor, I still had all these mixed emotions, maybe we didn't really need this?? Maybe all this would eventually go away?  But I also knew that I had better cave to the practical necessities in order to make life easier. So we christened the "Pasport" at the next medical appointment with Dr. K, approriately so. Lindsay and Nic thought it was great, they got premier parking wherever we went with Ari. Afterall, teenagers love convenience, so they were like "this is so cool!!!" They were relieved that we could arrive at our destinations on time and leave sooner, imagine that? Parking the car at public places could once again be deemed a simple thing in life. Score One for the Placard.
   Today, the Placard serves us well. It is like a loyal and dedicated friend. It never complains or talks back. It is used multiple times daily. It is committed to seeing us through all those crazy parking lots at schools, hospitals, public buildings, airports, state parks, etc. I must not forget the parking lots at our running events either. We would certainly not have enough space to assemble Ari's adaptive racing chair without a handicapped spot. Worse yet, we might not even make it to a race start line on time without accessible parking. Yes, the Placard has seen both the best and worst of places. It has heard us complain and vent, say a terse word or two at illegal cars parked in handicapped spots. But the placard is a good listener and never judges or repeats what is said behind closed  car doors. Everything is kept confidential with the Placard. So I have come a long way these past ten years in learning to live with what I once considered an unneccessary reminder of Ari's disabilities. Cheers to my on-going relationship with the Placard!
~Wishing you Miles of Smiles,
 Team Ari

Sunday, January 20, 2013

Married with Special Needs

 Michael and I are complete opposites. He's a West Coaster, I'm an East Coaster. He's a Republican, I'm a Democrat. He is Tall and brown eyed and I'm Short with blue eyes. He's the strong, silent type, I'm the vocal and emotional one. He likes chocolate ice cream and I like vanilla. He's methodical and patient, and I'm the hurry up, lets get this done and over with. By now you get the point! But being married with a child who has disabilities forces even the most polar opposites to agree to disagree. Michael and I promised each other a long time ago that we would never overstep each other's wishes when it comes to making medical, legal, or educational decisions for Ari. As of this writing, we have successfully lived up to that agreement. Which essentially means that we have bargained, negotiated, compromised, and given in to each other many times. In some respects I think having a child with disabilites has made our union stronger. This is surprising considering that the divorce rate in the general population is over 50%, and in the special needs community it is even higher.  But we are a statistical outlier. Yes, I am proud to say that. We have made it thus far and lived to tell!!!
   In the early days, we were just in survival mode. We didn't know how to comfort ourselves, much less each other. We decided if one of us was having a bad day that it was ok to declare, " I call crying today". Fortunately our timing was impeccable and we rarely grieved on the same days. When Michael was down, I was steady, and when I was distraught, he was strong. We really never  knew what to expect  from day to day, it was a new and foreign journey we were on. But the one thing that was consistent, was our love for one another and the love that we had for our family. 
   Nothing can prepare you for this journey, there's no training manual, there's no crash course to take, or special needs how to get from A to Z book, and there's certainly no married with special needs 911 number to call. So its all about learn as you go. I know we are a work in progress and after 19 years together I think its safe to say we are progressing nicely! As Ari would say, "we are Team Ari and we don't give up!"
~Wishing you Miles of Smiles

Sunday, January 13, 2013

Early Morning Wake Up Call

Its 5:01 in the morning and Michael and Ari are boarding a helicopter. The Helicopter pilot and flight nurses all try to be reassuring but I am definitely not feeling at ease. My eyes are swollen and puffy from crying. I'm cold, my hands are trembling, and I can feel my heart racing. I'm filled with fear and disbelief. Ari is being medi-flighted to a Pediatric ICU. She has been intubated and is on a ventillator. We spent the last several hours in our local ER. Our trusted pediatrician decided Ari needed  to be transferred to a children's hospital. The diagnosis is  pneumonia and her left lung is collapsed, she can't breathe on her own. Before they leave, Michael and I hold each other, I can feel his tears moisten my cheek. We are both silent and numb. She's just shy of turning Two years old. This can't be real. It has to be a bad nitemare. Ari is fighting for her life and we don't know if she will survive.

I'm on auto pilot as I drive home from the ER and wake up Lindsay and Nic. Its too early in the morning for their alarms to be going off to get up for school. I feel guilty for waking them from their slumbers and I dread telling them that their sister is gravely ill. I just want to hold them tight and tell them how much I love them. They are only 12 and 14 years old but they are very perceptive for their ages, they can easily pick up on my emotions. I try not to let them see how frightened I am. I explain as best as I can that Ari is flying to Valley Children's hospital with Michael and we need to get there as soon as possible. Its a 90 minute drive so I need to pull myself together quickly. They offer to pack their belongings and suggest we eat breakfast from the drive thru at McDonalds to save time. I don't object, because I really need some caffeine to stay awake. I feel like I've been up for days. On the drive, they begin to ask questions and have real concerns for their baby sister. I try to answer their questions honestly but I feel myself choking up and fighting back the tears. I don't want to admit how grave Ari's condition is. So I gently share that the doctors in the PICU are the best in California and they are going to work really hard at getting Ari well. I'm hoping that they accept what I am telling them. I'm trying my hardest to believe that what I am saying is the truth!

Nine days later and Ari is improving. She is taken off the Vent and is on oxygen.  The doctors think she is out of the woods and are cautiously optimistic. She is finally awake too. We are able to hold her, wrap her in her favorite blankie, and sing her favorite songs, and tell her how much we love her. We are so elated. We've never left her side. At least one of us, Michael or I, has been in her room 24/7. We just want to take her home and resume our family life as we know it. But we are painfully aware that our lives have changed again.  We are frightened of what the future may hold. Ari has CP and with that can come respiratory complications. She is fragile, any colds, flu, or viruses can wreak havic on her lungs. This wasn't her first bout of pneumonia but it was the worst one ever. She fought the battle and won. We are incredibly grateful that we have been given more time with Ari and hope that the worst is behind us.

Its 5:01 in the morning and I gently touch Ari's arm trying to wake her. She looks so peaceful I almost feel guilty for getting her up so early on this Saturday morning. A couple of minutes later her eyes open. She looks at me and smiles that sweet smile of hers and says, "Its race day Mom!"  Yes it is, I reply. Are you awake enough to get out of bed?  She pulls herself up and rolls over the bedside. She puts her feet on the floor and slowly limps to the bathroom. I feel my body get tense as I observe her stiff gait. I see her struggle but she never complains. She is happy with this Early Morning Wake Up Call because its Race Day. Its our first 20 miler race and she has been looking forward to this all week! Its going to be a glorious day.
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