So, it has been a while. Cody was born just after my last post, and he had his 2nd birthday last week. There has been little time to catch my breathe in the last two years, which have included 11 surgeries for Cody, a total of six months spent in the UVA children’s hospital, and, in many ways, far more difficulties than we could have ever imagined. Though I have not really thought about it this way until recently, the last two years have been spent trying to keep Cody alive. The severe hydrocephalus that began in the womb has caused problem after problem to arise, requiring multiple brain surgeries and shunt revisions, and two life-threatening bouts of meningitis. Secondary to this has been multiple fights with pneumonia and RSV. This sweet, perfect little boy has a body that is broken and scarred, and, barring a supernatural intervention, one that will not survive this harsh world past toddlerhood.
We found out in October that, as a result of his struggles with meningitis, Cody has two cysts in the cervical area of his spine - pockets of fluid that are no longer draining the way they would in a healthy brain. These cysts are growing, and putting pressure on vital areas of the brain. Already his vocal chords have become paralysed and he has a tracheostomy to keep his airway open. Eventually, Cody will lose his drive to breathe. And then, one day, his heart will stop beating. There is nothing to be done.
Most of you have either met Cody, or have seen all my facebook posts about what a miracle he is. He is the happiest baby I have ever encountered. When he was tiny I used to ask the doctors if something was wrong with him, he was so happy. He loves his family. He loves his life. He loves to play. More than anything he loves to be held and snuggled. He nuzzles his little face in my neck and keeps it there for moments at a time, just feeling me breathe and letting me kiss his little cheeks. He is a beautiful child - big brown eyes, curly brown hair, pink cheeks, and the longest eyelashes I have ever seen. He smiles constantly, and loves to play peek-a-boo, or “uh-oh” when he drops his toys on the floor. He loves his brothers and his dog. He is a favorite of the nurses and doctors in the hospital. Even at his sickest, he rarely cries. He is learning a little bit of sign-language (he can no longer vocalize), and his first sign was “I love you.” His second was, “Mommy.”
All the doctors agree that he will not live much longer.
I have been thinking a lot lately about life. About what life is, and what makes it worthwhile. So many of us struggle to find out what we are supposed to “do” with our lives, and what we are supposed to “be.” We measure our worth by what we accomplish.
I have found my purpose in life in the last two years. Right now, my purpose and my job are very clear. Aside from taking care of my other two children and supporting my hard-working husband, my job is to keep this little boy breathing. Much of my day is spent in making sure that he will survive until the next day, the next week. Keeping his trach clear so that he can breathe. Keeping his trach clean so that he doesn’t get infected. Maintaining and cleaning his equipment. Administering his medications to keep his bladder working, to keep his lungs clear, to make sure he doesn’t have seizures. Setting up his feeding regimen. Taking him to the doctor. Helping him do physical and occupational therapy to keep him comfortable and moving as well as possible. Sitting with him for hours upon hours in the hospital, making sure that he gets everything he needs, that the doctors understand all of his issues, that the nurses know what to do and when. Making sure that he gets enough cuddles and love and entertainment.
And what is the end of all this? What am I working toward? What will I be able to look back on and say that I accomplished at the end of this life?
Nothing.
Now stick with me here. I am not depressed or giving up. There is another side to the story. Hear me out.
The end result of all my days of work will be nothing. This child, for whom I am giving much of my life, will die. I cannot fix him. I cannot extend his life. My life’s work (for this time at least) will come to naught. Years of hours “wasted,” not mention hundreds of thousands of dollars, meticulously spent on a little body that was born into this world too broken to survive. In the terms that we tend to measure our lives, mine will be wasted.
But this is where joy comes from: that the worth of my life is not measured by what it will accomplish. For, will not all our lives come to nothing in the end? We will all be forgotten on this earth, no matter what we accomplish. And the best works that are ever written, the most beautiful and functional buildings ever built, the most prosperous and democratic societies, all will crumble, as time marches on. The children, the work, the art that we pour ourselves into will all die, decay, come to naught.
My worth is measure by how much I am loved.
Cody will not be here for long, and in his short life he will accomplish nothing. He can’t sit up. He can’t talk. He can’t walk. He can do nothing for himself, much less for others. But he is loved beyond all measure. All who encounter him, and many who have only heard of him and will never meet him, adore him. He is worth more to us than any amount of money, or power, or accomplishment or praise. And all he has to do to merit all this love? Exist.
We are all born broken. All. And we are taught by our world that in order to find worth we must accomplish something worthwhile, something tangible, something that will last. We must work to fix our brokenness and build something that will be remembered. But all of our works will fade, and all our good deeds will come to nothing in the end. Only Love makes us worthwhile, and in the end, only Love will remain.
Your Father, the one who made you, loves you. From the moment you were born, all you had to do to make you the most important being in the world to your parents was to exist. And from eternity to eternity, all you have to do to gain the absolute joyful adoration of your Father is to exist. Those moments of unearned love from our parents are the ones we do not remember. As we grow older, imperfection intervenes, and the next time we experience that love it in all its purity is when we hold our own helpless babies in our arms. But when Jesus said, on the cross, as He endured the ultimate pain for our sake, “it is finished,” He meant it. He MEANT it. Your sins are forgiven and you are free to enjoy your Father’s love forever. THERE IS NOTHING YOU MUST DO.
I have learned, while watching my little son, that I need never again wonder what I must do to make myself worthwhile. All I have to do is exist. And bask in His love! Roll around in it! Swim through its depths! Know that, whether I have done good deeds today or not, whether I have read my Bible or not, whether I have been a good mother or not, whether I have accomplished something or not, whether I have even thought of God, when I lay down at night I can feel His arms wrapping around me, and hear Him whisper, “my darling, you are beautiful,” simply because HE LOVES ME. Because He made me. Because He leaped across death to save a life that is weak and helpless in itself, but that is worth more than anything to Him.
Does that mean that I will lay down and do nothing, because nothing is required of me? No! It means that because I am secure in His love, I am free to wake up each morning and live the life He has given me, regardless of what results I see. I get up, and I do the next task in front of me with JOY because I want more than anything to care for my son. To not take care of him would kill me. Each act that I do to care for Cody is an act of unbridled love, which I do, not for the results, but simply because I love him. And though my life and Cody’s life will accomplish nothing, God will accomplish so much through us. Our works will come to naught, but through us, He will do His good and perfect will. I will never know the lives that will be touched by the simple existence of my sweet, happy baby boy, or through the acts that I perform only because I love him. Through his life and through his death, through my life and through my death, God will make miracles happen. And all I have to do is live.
