too much to wish for

This is not Aaron's first birthday receiving chemotherapy, but we must believe it will be his last.  While I am at home with our sleeping child, Aaron is likely reclined in his chair, sleepy from the pre medications given to prevent allergic reactions.

The IV delivers the medication that will unburden Aaron's system of the cancer remaining in his lymph nodes and Aaron contends with the lingering issues from the treatments before this one.  In addition to the fatigue, burning fevers, stomach upset, and stiffness, he has torn his calf muscle and is in acute pain.  He explained to me that this was a side effect of the high dose steroids, something quite common, but an unwelcome addition to his collection of symptoms nonetheless. I have to wonder whether or not he will want to celebrate when this day is done.  I realize this morning that I have nothing to give him.  The day snuck up on me after these two tumultuous weeks. No matter how cumbersome the hours, each new day approaches fast.  I know I should have prepared ahead of time but this is always an issue for me these days;  I am on a far reaching mission with only rudimentary supplies.

Before Sasha and I head to see him, we will secure at least a sugary confection of my choosing, and candles, so that he can make a wish on this birthday evening.  Last night a friend of mine told me that I am in want of too many things--Aaron's cure, Sasha's safety and well-being, Onni's continued health with his cardiac and cancer issues, a community of family and friends that are like blood, a forum to write and another child.  Is this too much to wish for?

As much as Aaron's survival is my priority, it does not stop the other desires from clamoring for space.  My friend shares her feeling that it is irresponsible to consider another child given our circumstances.  I think of the child that I carried in the fall and how this child would have been born while Aaron is a patient at Brigham and Women's in July. When I asked Aaron how he would feel if this had, in fact, been our scenario and that he welcomed his new child as a patient post transplant, gowned up and masked, he replied without hesitation, I would be thrilled.  He did not say, thank god that didn't happen or it's for the best that you miscarried.  Instead whenever we discuss a second child, he exclaims, Imagine when I am cured of this and we have our family.  How perfect. Aaron has always been good at seeing blue skies even with the smell of rain, but we know the difference between life and death, we have been flirting too close to it for too long, and we choose life.  I listen to my friend and wonder if she is right.  Am I desiring too much? Am I off-balance with what is reasonable?  It seems to me now that if  I give up on any one thing, I will be left with nothing.  That I will have surrendered.  I believe that we must be in this life that is ours but stay closer still to the promise of it.  

Be prudent, be practical, some may say, and in this I hear, be defeated and still and accept only what makes sense. But I want the world.  Though my concerns are great and small, from sunrise to sunset my mind turns with desires.  I know I cannot have exactly what I want this instant--a healthy husband, two children, and only every day worries, but I am strong enough to wish for it.  I must be.  I must try to create the world I want in the midst of the one I didn't choose. As she speaks, I know that I will consign to my list everything that will keep me going day in and day out. There is no precise arrangement for these months to come.  They will unfold as they will, some days precious, others poisonous, but then the sun sets and a new day is here.

Perhaps I have mad dreams in the eyes of others, but they are necessary to me.  Maybe I am deluded.  Maybe I should be wrangled in by those who love us.  But I understand what is happening better than most.  I don't want to question what is in my heart.  I don't want to suppress my desires any more than Aaron wants to be an invalid or worse.  These dreams belong to us.  It is a strong desire to keep your dreams close to you. So how do we keep our problems from smothering our dreams?  All I know right now is that we can't let it happen.  Can you thrive in the midst of crisis or just survive?  You have to do both.  There are wants and there are needs and they are very much the same when you want to be exhilarated and not exhausted.  I remind myself to keep our dreams out in front of us even if they are are not safe and snug in my palm, but rather far out on the horizon, because that is where we are heading--toward that vast place where all is brand new.  Our salvation lays on the other side of this.  We may be upside down until then but how brilliant the world will look once it's turned.

Aaron what do you wish for?  I ask him.  To preserve and better our life together as a family.  To be free of this particular struggle. To have strength and opportunity.  To have a life that is unlike anything we've known before.  To watch our children grow.  To have doors open one and then another and see good things walking through each.  To have ease with time.

The candle is burning, Aaron.  Make every wish that you want. There are many people praying that you get each and every one.


This post has also been published on Aaron's website:
http://www.caringbridge.org/visit/aaronstransplantjournal