milestones

Milestones...refers to a roadside marker that lists the distance to a particular location


We had just passed Mile 2. It will forever be etched into my mind. Our brains are just wired that way. Our triumphs and tragedies stick with us. Sometimes those memories linger for weeks, months, years. Sometimes forever. Its been almost six years since that day and I can still see that mile marker in my mind's eye.


It was a beautiful race morning. The sun was rising on our drive to Folsom on Memorial day for the Wounded Veteran Run 10k. Getting our BIB numbers was easy peasy and seeing our good friend Jim made it that much sweeter. Michael had the race route planned out just like always, because he is the BEST crew chief Ever!! He would take some photos for us at the start line and then meet us at Mile 2. 

The course was on a nice, shady, bike path for about 4 of the 6 miles. It was flat and fast. We were settling into our race pace. Still comfortable enough to carry on a conversation with Jim and catch up on "all things family". As we turned the corner at Mile 2, Ari saw Michael and waved. I yelled, "see you in another two miles". He smiled and kept taking photos as we passed him. Seconds later, I felt Jim tapping me on the shoulder. "Kelli, we have to turn around". I was a bit confused. Jim never stopped during a race. "There's something wrong with Michael. He's on the ground", he said. We made an abrupt 360 and got off the path. About 100 yards in front of me I could see Michael laying on his back with several people attending to him. Jim stayed with Ari and I ran to him. He was conscious and talking, but shared that he was in a great deal of pain. He said that his abdomen hurt. He didn't know how he had fallen. Others explained that they had witnessed him pass out.


Things went from bad to worse quickly. I called 911.The Fire Department took Michael to a nearby hospital in Folsom. After several hours and multiple tests later, blood work, and a CT scan, it was revealed to us that there was a serious problem, Michael had a very rare abdominal aneurysm. I couldn't believe what I was hearing. I think I was still in shock. Michael had always been so healthy. How could this be true. I called our son. He was driving to meet us. I phoned our oldest daughter. She was booking a flight from France to return home as soon as possible.

Michael was then transported to Sacramento and admitted to ICU at Mercy Hospital. The team at Mercy Hospital began to prepare us for the news that none of us wanted to hear. The aneurysm was in a very difficult location to treat. The docs informed us that Michael "could bleed out if they did nothing and that he could die if they attempted to "coil it". Michael was being kept comfortable on pain meds but he was still alert enough to make decisions. He told the team his wishes, "take him into surgery and repair it".

Michael was in a race for his life. I was scared. I couldn’t imagine our lives without a husband and father. I was forced to have those conversations again, the conversations you never want to have with your children about death. Lindsay & Nic were all too familiar with Ari’s health threats and vulnerabilities. They had grown up with their little sister's disabilities and her frequent hospitalizations. And now it was their dad's life that was in jeopardy.

The first attempt to repair the aneurysm took five hours and failed. We all felt defeated. The medical team was relentless tho and would not give up. The next day Michael went back into surgery. Two days and 10 hours of surgery later, it appeared that he was finally out of the woods. The team placed eleven coils around that aneurysm. We began to let our guard down, just a little. Michael spent the next week in Mercy Hospital and was discharged home for a brief 36 hours before complications would set in.
 
We were devastated. Another hospital admission but this time at a highly skilled research and teaching facility. The next six weeks would prove to be some of the most difficult weeks of our lives. Nic and I stayed in a nearby hotel, to be close to Michael. He was in the trauma unit, had a Pic Line, and was receiving TPN (total Parenteral Nutrition). It was a watch and wait, hoping his body could heal. Every few days I would go home for a day. See my girls, take care of laundry, do bills, check in on my office, and attempt to sleep. At times I felt like I had hit the wall and couldn’t place one foot in front of the other. I vividly remember during week three, I was in the depths of despair. Michael had had a nightmare, he shared that in his dream he saw Christmas lights from his hospital room window and feared that he was never coming home again. Outwardly I kept a brave face on and comforted him, but privately I wept. These were the moments when I felt like I needed to dig deep and achieve a PR in mental toughness.

Getting Michael well became a family effort. I tried to tell myself that doing the small things would somehow make him feel better. I would change his sheets everyday and bathe him. Engaging in those simple tasks, in some way soothed me and gave me a sense of control, when internally I felt so out of control. Nic would shave him, carry his IV poles, and take him for a lap around the nurses station in his wheelchair. It was his physical therapy. Ari & I would challenge him to have wheelchair races on the floor. For Father's day we took the moment in and thanked the universe we were all together. Lindsay & Ari broke out with their classic tradition and had a dance party in the hospital room. Michael was able to smile again and even laughed. Slowly but surely he was making his way to the finish line. He gained back a few of the 25 lbs that he had lost. The Ashen color in his face began to fade away and I could finally see shades of pink. We celebrated the milestone.

...To be continued.

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

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...?"