joey bear

I can tell Joey’s body is tired.  Tired but still fighting hard.  Seizure monster visited again this week reminding us there’s a devastating disease destroying our son’s little body and that his time with us will be short.  We certainly don’t need reminders but it’s amazing how much you adapt and adjust when survival is your only choice.  We’ve grown used to the percolating sound his little lungs make upon exhalation; the tremors in his arms and legs when we pick him up or reposition him; the lack of feedback – no smiles, no giggles, no eye contact; counting the seconds when his body ‘forgets’ to breathe; tripping over cords and tubing (if you don’t know where Joey is just follow the tubing); the sound (and smell) of his suction machine – it’s all part of our (constantly changing) new normal.

It is the helplessness rather, that’s so hard to get used to.

I tell my friends and family not to worry so much about what to say or what to do, that there’s comfort in their presence, then beat myself up when I can’t get my son comfortable or ease his pain.  I tell everyone who has to watch our family struggle that there’s grace, even peace in the midst of it all, then plead with God (sometimes yell) to be merciful and end Joey’s suffering.  I tell Jesus I can’t do it anymore, then thank him for one more day and for the strength to get up in the morning.  Helplessness is a beast (and a hypocrite) that is hard to tame.

Taming isn’t the answer you might say and I think that holds true.  Taming with the goal of control is a useless battle, a waste of time.  And whereas suffering and helplessness make you feel out of control, they also highlight the power of choice – your ability to choose at every step of the way.

I can’t control my son’s suffering, but I choose to be present through it all.  I can’t control the way GM-1 will ultimately take his life, but I choose to believe the ending here is a new beginning over there.  I can’t control the way parting with his little brother at a tender young age will affect my oldest son, but I choose to do my best at nurturing his ability to love on instead of breeding fear of an uncertain future.  I can’t control how losing a child will impact my marriage, but I choose to fight for love, for us and for our family.  I can’t control the way grief shakes me to my core and makes me feel completely powerless, shattered and undone, but I choose to surrender, not fight it or hide it, to a God who knows infinitely more about the piercing pain of losing a son.  I can’t control how many days we have until Jesus calls Joey home, but I choose to make them count.  I can’t control the way my heart aches and my soul groans, but I choose to embrace the brokenness because it’s better to break then to grow cold.  I can’t control how Joey’s life and legacy will impact people around the world, but I choose to be his voice and to never forget or stop sharing his story of hope, courage and unconditional love.

I am not in control but I always have a choice, and so do you.  Let’s pray we choose wisely.