I've probably written this letter a few hundred times in my head over the past few weeks and so now finally time to put it down on paper. I know you'll be old enough one day to read all of this and relive a lot of what your mom and I have gone through over the last 12 months, which I apologize for in advance by the way, but as I know your curiously beautiful mind will have many questions...and perhaps this serves as a method to answer a few. It will be impossible to convey everything in just one post here, so I am going to put as much as I can down now and promise there will be more letters forthcoming in the future. Your story and our story evolves everyday. While we know that the lessons learned down this path along with experiences that run the full gamut of emotion will shape how we proceed with the future, I want you to know that your ability to become anyone and anything you hope to be is entirely now and forever will be within your own control. Your mom and I will offer, as we have since the first day we heard your heartbeat on an ultrasound, unconditional love with limitless potential to help guide your path.
My hope is that when you can really sit down and read this blog for meaning, you will be at least 12-13 years removed from your last treatment and able to proudly grasp the accolades and responsibilities from being the hero cancer survivor we know you already possess inside you. I am not trying to put undo worry into your now healthy and happy daily routine, but as I have said many times before - in order to know where you are going, you have to know where you are coming from (Thank you Coach V). Your mom and I have strengthened ourselves over the past year in ways we needed to be with experiences we've struggled to understand why we've been chosen to take part in. A year ago from next week will be the first anniversary of your diagnosis. We marvel a bit on how it seems like another lifetime ago when thinking of the days, weeks, and months prior to that date. We've talked about it as "back when life was normal" which I suppose makes sense given the context. When buried into my own thoughts though, something pokes at me to beg I realize the perspective gained to the cancer world has been a calling to a better "normal". Many days I agree with that, for sure. Still every so often when we see so many around us doing the things they should be doing to enjoy life, it is hard to know what end result was meant for our forged path forced in a different direction. However, you need to know that this aspect of adjustment is 100% our burden. I won't have you lose one day of the life you so richly deserve because of dwelling on what might have been. You have already overcome much more than the average person and proven ultimate strength and resolve of character when there was absolutely no requirement to do so. You are my super hero.
I hope music is a big part of your daily life. I'm sure it is. As a high school teacher now of over 7 years, I have yet to meet a teenager who doesn't have a playlist he hasn't arranged himself or at the very least an opinion on what constitutes "good music". I-Phones are the big craze right now. Call it an all-in-one phone plus music player plus gaming device plus communication machine extraordinaire. I can't wait to see what you might have in your possession now a decade and change later as technology seems to evolve by second around here. Music for me over the years has been a method to explore and express emotion when spoken words are either not sufficient or just not possible in that particular moment. The time of day, the situation at hand, the fallout from some interaction, or the joys to be shouted from the rooftops all bring about different musical ideas. Certain songs have been ingrained into my head because of moments they were either first heard or where they spoke so loudly at the time I don't remember anywhere else I heard them other than that specific time for the most part. I hope you won't be afraid to roll the window down on your own road some days and sing along with something that moves you. If its a song or album that makes you laugh, think, and cry....it's a keeper and worth hitting the repeat button for. The choice of musical genre for the occasion is a very personal choice so don't let anyone tell you different. What you choose to express yourself with should always be well within your control including direct access to the play, skip, back, pause, shutdown, and crank-it buttons. You'll know when to use each without even thinking about it.
Last summer when all of this was so new and overwhelming to your mom and I, it was hard to find a release many days. We just went appointment by appointment and tried to concentrate on getting our shoes on in the morning to make sure we could keep upright for you and Timmy. I don't know if you'll ever understand how lucky I am to have "bumped" into your mom nearly 8 years ago. Our roads merged into a unified path one weekend in North Carolina several years ago when we ventured west from Chapel Hill to the mountains for a fall getaway. We had just seen this movie Elizabethtown and recently bought the soundtrack so it happened to be in the car. While we saw the sights, hiked, and drove the Blue Ridge Parkway (with the windows down!), this quirky little CD played over and over again. I remember the feeling of having life at my fingertips. Newly engaged, new career on the horizon, (no money - ha!) and new adventures to behold. The Hollies reminded me that Jesus is the ultimate ally, Tom Petty expressed what it was like to have a clean slate, and The Hombres wanted us to just sit-er back and let it all hang out. :) More than that though...unbeknownst to us at the time, were preparing for the hope and promise that would be realized when you and Timmy were born. We also were building a foundation that we heavily lean on today to keep us going.
When you have felt really good following recovery periods of your heavier chemotherapy, you have had this uncanny smile and desire to dance in the living room. For some reason, you got stuck on Coldplay's "Every teardrop is a Waterfall" and it is now synonymous with the Ellie 2-and-a-half-step. I've thought this was quite the pairing. After all, if you are going to have your emotions brought to tears, why hold back with a trickle? Your mom made this incredible 30 minute pictorial set to music for your third birthday. PLEASE try to find a copy in one of our old boxes if you don't remember. It tells a story of survival and has helped define who you are today. From it you took a strong liking to a Kelly Clarkson song and would always shout "that's my song" when it came on the radio in the car. You mark my word here, our belief in what you are capable of knows no boundaries. It has been said many ways but bears repeating today with the force of every living ounce of energy I have...That which does NOT break you will make you powerful beyond measure.
I couldn't even turn the radio on for the first month of your treatment. I was angry when I was alone in the car and I felt like it wasn't right to try to escape into my own world when you had been given no choice but to walk to a trail head you did not deserve to be at. It took a couple months but as I started to come out of the fog, so to speak, I looked behind me....I mean really looked behind me. People were lined up, too many to count, standing ready to fight with us. I was thrust into a scene I can only describe as breathtaking but not for the weak of heart. You were and are still equivocally standing in front of Achilles' Greek militia ready to take on Troy and Braveheart's army preparing for the Battle of Stirling. With a little help from Gabriel Yared and James Horner, I could hear the music again! The prayer circles that have been told of your plight reach around the world and while I draw silly movie references in an attempt to rationalize it, the point is today you are firmly atop a sea of a million hands willing to lift you up, hand you Roy Hobb's bat, and applaud while listening to Randy Newman describe how you knocked it out of the park without even blinking an eyelash. Cancer has NOT and will NEVER be able to take away the bond we have marching together with you....and with each other.
You deserve to....dance with Footloose until your feet hurt, hang on every tear drop of Ishtak Perlman's violin, get the LED out when you just want to rock, experience shouting SALT three times with room full of Jimmy Buffet fans, embrace an Easter Hallelujah Chorus, go searching with Bono and I because neither of us still haven't truly found what we're looking for, find a place to be Homeward Bound for so that Simon and Garfunkel can make you feel like its the only thing that matters, Imagine with John Lennon, find Nirvana when its good to scream for a while, and finish the night with a little Louie Armstrong alongside your son or daughter by saying good night with a Kiss to Build a Dream on. And should doubt ever creep into your mind during a standoff where life doesn't seem fair, just pull out a little Fort Minor and tell 'em to Remember Your Name. I am convinced you have much to teach others down the road.
Please look out for Timmy. He has been through so much this past year trying to figure out what's been going on and has a sense for nothing but love and compassion with you. (Ok, maybe with the exception of when its his turn to choose the Elmo video, but hey if that's the worst thing, your mom and I can deal) Watching him months ago reach his hand into your crib when you cried so often from being nauseous or lovingly pat your mom's side in the middle of the night while she tended to you describes a connection he feels with you that no one else will ever have. A few years from when I write this, there will be times when kids give him a hard time because of his eyes. I hope you'll return the favor, reach out, and redirect his attention to you. You are the best friend each other will ever have.
We just finished your first three month cycle of Long Term Maintenance (5 and a half cycles to go) and began a new phase today with a Lumbar Puncture in your spine which they put you to sleep for. We also have to start another 5 day trek of Prednisone. Hopefully you won't remember much of what it is like to be on such harsh drugs BUT your blood counts could not be better! Haven't seen an ANC value below 1000 in over a month. Yesterday for your pre-procedure physical, you sat to have your port accessed and labs drawn like your usual stoic self. Chin up and chest out like a pro. All of the nurses at the Bass center have become fond of seeing what you are wearing (your mom knows how to dress you to impress) and yesterday they were treated to you beaming from cheek to cheek showing off your new pink bow. This is the first thing your hair has been long enough to hold in over 10 months. YEAH! I cannot promise we won't go back to a thinner state on that front (though as I grow mine back now, it may be already), but to me it signifies how your have charismatically carried yourself through this from the moment those beautiful pig tails were lost. You know the difference between triangles, circles and squares as we discussed yesterday while drawing, you just learned how to put your face under water in your swim lessons....and you know how to put cancer in its place. You've already accomplished more than some have in an entire lifetime. Complacency is not on the agenda, so keep going because you've been given the precious gift of another day. It's something I relish every morning I wake up.
From here our path is a little unclear but we have learned a bit more patience over the last 361 days. I have a hard time celebrating big milestones because we still have so much ground to cover medically and much more after and I never want to it all to be too good to be true. But, we as parents can prepare you for as much as you are ready to learn. That we will go to the ends of the earth to do. When you are able and willing, my promise is that you'll be able to walk outside to the most perfectly manicured pitch you have ever seen. Every detail will be covered, every white stripe perfectly contrasted with the lush green grass aimed to serve as your playground. The boots to be worn are already magic on your feet (did you see the size of that ladder you scaled at camp???) and ready to carry you further. What you do once you take the first step in bounds, however, will be entirely up to you....and all of the nurses, doctors, friends, family, and army of supporters who fought for you will be cheering so loud, it'll be the most moving music you've ever heard. That's my goal...with HOPE very much alive in the meantime.
I'll leave you today with lyrics to a song your mom and I used to commemorate our wedding and the promise of a bright future:
"ONE"
by U2
One love, One life
When it's one need , In the night
One love, We get to share it
Leaves you baby if you , Don't care for it
Did I disappoint you?
Or leave a bad taste in your mouth?
You act like you never had love
And you want me to go without?
Well it's...
Too late Tonight
To drag the past out into the light
We're one, but we're not the same
We get to
Carry each other, Carry each other
One
Have you come here for forgiveness?
Have you come to raise the dead?
Have you come here to play Jesus
To the lepers in your head?
Did I ask too much? More than a lot
You gave me nothing, Now it's all I got
We're one, But we're not the same
Will we, Hurt each other
Then we do it again
You say
Love is a temple, Love a higher law
Love is a temple, Love the higher law
You ask me to enter, But then you make me crawl
And I can't be holding on, To what you got
When all you got is hurt
One love, One blood, One life
You got to do what you should
One life, With each other
Sisters, Brothers
One life, But we're not the same
We get to
Carry each other, Carry each other
One... life
One
Sleep tight my beautiful girl, Mommy & Daddy loves you.
Beautiful, absolutely beautiful. What more is there to say!
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