~ Pudge Halter (character from John Green's "Looking for Alaska")
Be Here Now. A consistent mantra during my many days (now years?!) at Serra and one I was reminded of today on our first day back for the upcoming school year. Be Here Now. So much going on this summer with just about everything personally and professionally that I have not done my outlet here on this blog justice. No, I don't have to answer to to anyone about it....and there is not hard or fast rule that said blog must be kept up with a set interval not to be exceeded. But I have often said the healthy factor that comes along with connecting thoughts from our daily ongoings is a necessary release to keep the process of working through this journey going smoothly. Connected thoughts for me represent clarity to the constant back and forth struggle with simply not knowing what's next. Our path here, often walked side by side with so many wonderful other families and children facing similar battles, and yet sometimes crawled eerily alone is not one that will ever end. We are in it to win it, but an ultimate confirmation of an end result does not exist. So, we look to the adventures along the way as our guide and try to follow the new normal as best we can.
Its been quite while since I've been here, so forgive me this will be a long one... :) #sorrynotsorry I promise pics!!!
Free of treatment plans, doctors, guidelines for an immunosuppressed state, and free of school after this past June 1st....we set out on one heck of a summer adventure. Ellie has now fully regained her ability to fight normal colds and flu bugs and so the sky's the limit to activities. Just watching her vibrant style of enthusiasm is infectious. Neither her nor Timmy is shy of energy these days with the most elaborate schemes being played out in location they choose to plop down and play. With summer horse riding lessons in full swing, both gleefully come home and immediately role play the adults who have helped them at the barn during their lesson. They grab our dog, Chloe, or "Gigi's" (Polly's mom) dog Lilly, attached the leash and begin demanding they pick up the trot and jump the "X" on the kitchen floor (conveniently made up of a pillow and cooking utensils). After a quick canine lunging session, Polly or I often have to rescue the poor dogs before someone gets overly annoyed. The game can then turn to "School" where a pre-K circle time is re-enacted with exquisite detail or "House" where all Dolls within reach must be fed, changed, and put to bed (One thing I never get is why all of them get put to sleep with blankets completely covering their whole bodies. The kids say its proper technique. All I can think of is a giant morgue. But that is neither here nor there....whatever the hell that means. ha). Needless to say their creative flow is at an all time high. The daily adventures in the living room have their moments where one wants what the other has and we get a little skirmish, but for the most part the ability to overcome, advance, and leave it all in the rear view mirror is stronger with a pair of fiver year olds than any other age human being I know. Both will begin Kindergarten in exactly one week's time. A day I never thought we would see three summers ago.
All good things come in threes, yes?! Most Definitely.
Summer Adventure #1 - Maui. We were blessed beyond measure when we became friends with Jim and Marti years ago. Their offer and hopeful promise to allow us time with them at their annual destination in Kaanapali during the first possible June following the end of Ellie's treatment was like an eager excitement to look forward to all of last school year. This was the trip for friends, food, and carefree fun. Sometimes you just have to stare off toward the horizon and think. Coach Jimmy V's words to do such a thing everyday have created an expectation for myself to allow random thoughts to flow daily within a very personal space during these moments of mindless gazing. Maui could possibly be the the perfect place for such things. The stresses of the school year just ended were easily forgotten and as a result time slowed down for a week. Be Here Now. I think the concentrated time of play, between the ocean and pool....back and forth again and again, mix in a few Mai Tais of course, there is ample opportunity to grasp how much Ellie has come out of her three year long chemo induced state. We are not STUCK any longer and is it okay to enjoy this for an extended period of time (well beyond Maui)? Or maybe after watching her ecstatically swim with a sea turtle or get shaved ice all over her face or plead with me to let her go down the "big" water slide for the 50th time....this growing feeling that started in Maui was becoming tangible on an adventure at long last without restrictions - so can we put our guard down already?
There is no answer to that question. There are interpretations until the cows come home, but it cannot be answered. So, to combat that inevitable truth, I kept to what I've come to know as the best method for attacking our time. We go day by day. We talk, we come to new understandings, and we never stop asking more questions. Marti and Jim know how to have a heartfelt conversation where listening is put as a top priority. Sometimes words need to be heard and not answered. I was able to see my son and daughter dance in the waves during a God-given sunset for the ages and I was fortunate enough to snap a quick picture to remember it by. Jim and Marti - my thanks for what you have done for us with Maui but more importantly the many months prior is something that goes far beyond what words can explain. We put our guard down for the 10 days in Hawaii and lived the life.
Summer Adventure #2 - Disney World. Our wonderful social worker had reminded us last summer that Ellie was eligible for a "Wish" from the incredible organization Make-A-Wish (Greater Bay Area). The only caveat was that she had to get the process going before Ellie ended treatment or she would not be able to make it happen. So, we took the steps last winter and were visited by two MAW volunteers who asked Ellie if there was anything in this world she wanted...what would it be? She replied unequivocally that she wanted to "Dance with Minnie Mouse". A few weeks later, a document arrived explaining we would be sent on a 7 day paid-in-full trip to Disney World in July. Wow. Again, Wow.
Over the course of the summer I completed two extremely moving books. The first a fictional masterpiece by John Green, called "Looking for Alaska", whose style of writing is spot on with his first person depiction of teenagers dealing with horrific tragedies either pending or just past. I know we are in a good spot right now with Ellie's health. Nine months straight with clear blood tests. Just three more months and we hit that pivotal one year mark where the potential relapse stats get even more favorable in terms of standard deviation. And right there in what I just said lies the heart of where books like Green's take me. Again, I know Ellie is in a good place. I know she likely is not going to relapse in the morning and I am not biting my fingernails that is an irrational inevitability. But...there is the basis of my thoughts which always begin with the science and math of it all. Logic, if you will, based on stats. What is possible? What could happen? What is the percentage of each scenario and how will I know if it is approaching? What are worst case scenarios? It goes on and on. Like taking pieces of lessons from every coach I have had the pleasure to work with, I find similarities to emotions and reactions within the childhood cancer world in many of Green's words.
Alaska Young is a character (spoiler alert) who inexplicably passes away from a head on collision auto accident. Whether the "accident" was just that or perhaps a purposeful ploy to take her own life is at the heart of the story with her two closest friends (both guys) from her boarding school who spend the remainder of the book trying to dissect, analyze, and conclude the "why" with regards to their dear friend being gone now with a finality they have never known in their young lives. The quote at the top of this blog is the main surviving character's moment of clarity he reaches at one point when realizing he'll never fully know what happened but that he could continue with a hope that had evolved from the essence of simply knowing Alaska for the short while he did. It's a process of working through grief, I suppose. But more so, it is a reset button after the fact for the daily grind of life we knew prior to the accident. Changed forever, but still moving forward, the boys search for a reason to have faith in a phrase they call "The Great Perhaps". What a thought! Is the possible still possible when everything as you know it changes? I know my analytics get repetitive with fears that often go in circles, but again....it is the process of discovering how I can form answers to my questions (both good and bad) and searching every single day for even just an inch more of peace which help beyond measure.
Our Disney adventure was nothing short of amazing. A huge limo picked us up from our condo and whisked us away to the airport. We looked a little funny strapping child booster seats into the large vehicle followed by the onslaught of luggage needing to find its way inside....but we made it eventually. Kindergarten may be a big day but the day I don't have to travel with a giant stroller for twins might top it (Shhhhh, don't tell Polly I said that). Once at the gate, the pilot came out of the plane into the terminal, bypassed all other guests and walked straight to Timmy and Ellie. We got a personal escort to the cockpit and the kids were treated like royalty for the entire flight. (Good thing too because six hours with 5 year olds confined to seats pushes limits. I had put the over/under for Timmy's lavatory fascination driven bathroom requests at 10. Amazingly, he went over. What can i say, the boy loves to pee.)
We stayed at a place called "Give Kids the World". A unique destination for which only "Wish" kids can stay at....and all those that do stay get only one week to do so their entire lives. It is a magical place. Everyone gets a 2-bedroom "Villa" to stay in where the kids get the master bedroom and bath. The middle of the GKTW neighborhood has a carousel, a place with tons of games, mini golf course, pools, ice cream parlour that serves kids all day long (even for breakfast as Ellie will always point out) and several characters in costume who interact with them around every turn. They hold Christmas for the kids on Thursdays and Halloween on Mondays. Thousands of volunteers from all over the country come to Florida to staff this place year round and make it all happen. All so that these kids who have missed out on a significant portion of their own childhood can just go nuts for a week. We were very blessed to have the good fortune to visit.
Our "Villa" at GKTW in Orlando
Beyond just our hotel accommodations, we were given four days worth of tickets to Disney World theme parks, 2 days to Universal Studios and 1 day to Sea World. We hit as much as we could in the five full days in Orlando and safe to say the kids minds were blown with the experience. A magical blue Disney "Genie" pass made sure we did not stand in a single line and Timmy and Ellie got to do their favorite rides over and over again. On one occasion at the Magic Kingdom, we signed Ellie and Timmy up to get the full spa treatment at the Bippity Boppity Boutique. Ellie chose to be transformed into Elsa (Frozen) and Timmy chose to be her very kid Sir Knight. Other occasions saw them meet every character possible, including of course Ellie's long awaited time with Minnie. The pics below are just a few of the hundreds Disney even threw in at the end of our stay on a CD for free. Awesome.
The whole fam at Epcot
Wish Granted
Very proud of Timmy for enduring this ride
as his thrill seeker sis wanted as much of Splash Mtn as possible.
Gotta love her courage.
Elsa and Sir Knight....Priceless
Because everyone needs a little Goofy in their life...
and I hope you take note of Ellie's dress.
(Made from scratch by Polly!)
GKTW Ice Cream for Breakfast
Ellie's Star of Hope which now hangs in the GKTW Hall forever
Summer Adventure #3 - We're Moving. This was one of those spontaneous things we just decided....why the heck not?! If we are to fully embrace this off treatment life then there can be no fear of the unknown to a degree that limits decisions. Polly has led the way for us on this front. And perhaps one of the remarkable things about being married to someone who is such a perfect fit for you is that she is willing to both hold your hand through blind leaps of faith as well as push you off the ledge when needed. The truth is our financial situation because of cancer has been a struggle. We have persevered though and found a way to get by through little sacrifices that have gone a long way. Now, in one of the wildest real estate markets in the country where 3 bedroom homes with or without renovations even under 1400 square feet are routinely around or just above a million dollars...we have decided to sell our condo and try to give the kids what they deserve while everyone is healthy. More space to grow, more space to play, and emphatically more space to cover scores of dolls (in their entirety) with blankets. Please say a prayer we find something. We expect our condo to sell within 4-5 days of being on the market sometime just after Labor Day. After that, it'll be a watch and hope situation with us likely to get outbid on many of our initial choices. A bit scary but also a bit exhilarating. Polly and I have worked very very hard for the last several years and despite a cancer fueled interruption...we doin' this! Polly's parents have been enormously kind to put us up in the interim and our hope is to have a house for the next 15 or so years found before Christmas. I'll take crumbling walls and one bathroom if it means the little piece of land below it is ours and Ellie remains cancer free to dance as much as she could ever want to.
Towards the end of summer I finished reading Laura Sobiech's true story book detailing the life of her 18 year old son, Zack, who passed away from Osteosarcoma (Bone Cancer) on May 20th, 2013 in Minnesota. He is famous for his song "Clouds" which he wrote and produced the winter before his death long after he knew he was terminal....and it went viral all the way up to #1 on itunes for many weeks. Remarkable story that focuses mainly on how the family decided to live Zach's final 10 months or so after the docs told them there was nothing more they could do to help Zach. What Laura experienced and wrote in painfully similar detail in her book about Zach's diagnosis was like looking into a mirror. Several folks have said this blog of our may be book worthy someday and I have wondered if anyone would ever really care to read it. Laura chose to put her's into a published version and I can say it has positively affected my own path tremendously. She says very straight and to the point, "The cancer world teaches us to Hope. When someone goes terminal and eventually passes on, what is there to hope for? What can I hope for when the hope I knew is now gone?" I read about ow they started truly living in those final months of Zach's life. Parties, music, family antics, many many tears of the inevitable to come, the heartbreaking recollection of his final days and moments where cancer takes complete control, and most poignantly her thought process as she tries to live in the moment and just go with it but still from time to time helplessly falling back into sadness and despair and the questions of "Why". I can see a way where neither confirmation of a cured life nor the finality of death will ever completely remove that despair. All of these adventures and it never goes away even if it exists as just an off handed thought buried deep in my head. So the choice is to wallow in thought, which is essential to move forward in my opinion, or to embrace what is ultimately a true Mystery of Faith. I can embrace! I can. I can. I can....Be Here Now. But there will always be moments despite the adventures basking in glowing sunsets, ice cream breakfasts, and building our material worth where I doubt...and I think....and I get scared. Very very scared. Next week is Kindergarten and I know the minute I walk out of there knowing a milestone never thought possible from a teary eyed sit down on a bench outside of the Stanford ER from June 26th, 2011 was just reached by two amazingly resilient kids....I'm gonna start wanting to see a T&E High School graduation really really badly. The blood test in two weeks will bring that vision back to reality and the circle continues. Such is life. I'll grab Polly's hand and ask her to make the blind jump with me...again. The good thing is, it's a new adventure every time.
