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