Sunday, February 28, 2010

Living with your heart outside your body...

Many years ago, before I became a seasoned mother of three, I once heard someone say that having children was like learning to live with your heart beating outside of your body. Of course, before having children, your life is focused on other things; your goals, your job, your spouse. But you are only responsible for yourself, and if you screw up, no one is the wiser.

Fast forward to the birth of our first son, Matthew. As I have mentioned before, just trying to bring him into this world was SO HARD! And yet, I always felt that God’s hand was always in it. Because, after all that fear, my son was perfect. He was the sweetest baby I had ever known. He would awake each morning with the brightest of smiles, was so agreeable and I WAS HIS MOTHER!

My heart would break when he was hurt or sick. And the worst was that infamous day in September of 2001. When I wasn’t there to protect him, to shield him of whatever might fall from the innocent looking sky. I had never known fear like that, and I finally understood what living with your heart outside your body felt like. Because my child DESERVED a better world than the one that permitted people to commit such atrocities…and I was powerless to make it right for my sweet boy.

When Andrew arrived, I had lost my father after a long battle with cancer. I was overwhelmed with grief, and once again, God’s hand was orchestrating. I discovered I was pregnant a month after my father’s passing. Andrew, without being larger than a lima bean, was already another, glorious ray of sunshine in my life. I picked myself up and lived because my children needed me. Andrew awarded you a rare gift of a smile if you were particularly worthy. And boy, did I treasure those smiles, with their accompanying wrinkled nose and crunched up smiley eyes…

But when Andrew’s mole on the back of his head began to grow and had to be removed, this normally tough lady felt her knees buckle as her little five year old son was wheeled into the O.R. And she had to put on her big girl panties and be strong for him, to be the last, smiling face he saw before he went under, and be the first smiling face he saw when he woke up…And when I found a lump under his ear last spring, one which did not dissipate over several months, the fear threatened to take me under. How could my child be faced with another potentially BIG problem? Blessedly, both surgeries were a success and the prognosis: happy, healthy, thriving almost seven year old. My very own heart beating outside my body…

And what to say of Joshua…my youngest has overcome so much in so little time. At nine months, my precious sweetness had not made any attempts to turn over. At his check up, the nurse practitioner was as cold and business like as a person could be…”your baby is floppy. You need to take him to a physical therapy evaluation. If he is not better within three months, you need to see a neurologist…”

I felt my stomach give way…The questions, the overwhelming fear, the powerlessness was back. As I gazed at my littlest guy, I also knew that a mother’s love is a powerful thing. When you awake the lioness that slumbers in each of us, you had better be prepared to do battle…and battle we did.

Phone calls, appointments, precautions. I begged and pleaded with the insurance company… I argued with doctors. Appointments a week away; not good enough. We went to physical therapy and I learned to do the same exercises at home on the off days. We saw a neurologist and after seeing the other children and their parents in the waiting room, my heart sank. My cross was so much lighter than theirs. How could I cry out? I refused labels other than FIGHTER and NORMAL… and blessedly, Joshua won that battle.

A few months after, just after his first birthday, my sister’s niece, who is an optometrist, happened to view some photographs of Joshua, all with an ominous white spot in the left eye. “Tell Maria to take him to a pediatric ophthalmologist, IMMEDIATELY.” The queen of Google went into full force and what I discovered took my breath away. Could be a brain tumor? Not my baby. Not the one who has battled for so long and is almost walking…not my medical miracle.

Those days before the appointment with the specialist, I have never felt so alone. My husband thought I had lost my mind and tried to comfort me. My sister, who always has the words to draw me out of my sadness, failed. My fear must have been a well placed mask on my face that morning. When the doctor started examining him, the first words out of his mouth were, “You can exhale, Mom, it is not a tumor.”

What words can begin to express the relief that washed over me when I registered that magical phrase? Not tumors, not cancer, not watching a piece of me battle a much harder and possibly unwinnable fight? Not watch my child be consumed by hospitals, experimental drugs, surgeries…Instead, watch your child grow, learn, blossom. The tears filled my eyes, and I did, indeed, exhale.

And so, all of this to say that sometimes, we learn the meaning of a phrase; and relearn it, over and over again. Some lessons are harder to learn. We become stronger as mothers when we are faced by seemingly insurmountable circumstances. But we all know that the harder the battle, the more sweet the victory.

But we question ourselves. Did we miss any signs? What could I have done differently? What did I do wrong? We are our own worst enemies. We all too often don’t need anyone to feed that monster named doubt…

Each of my sons has brought me invaluable gifts. They have taught me to find my voice, to question, to find strength I did not know I possessed.

They have taught me that every single day is a gift, because we all have an hourglass over our heads. That time is an ally and an enemy.

That as mothers, we are vigilant.  That we love and pray that the decisions we make are the right ones.  That we are indeed the people whom our children believe us to be.

But the greatest lesson I have learned from my sons: that l could not imagine my life without my heart beating outside my body.

1 comment:

  1. Another wonderfully evocative post, Maria. First, let me say how happy I am that all of your boys are doing well.

    Your post made me think about an experience I had with my younger son a few weeks after he was born. He spiked a fever and was hospitalized until the mystery virus ran its course. While staying with him at the children's hospital, I spent a lot of time looking out at the adjoining cancer wing. I was scared and worried about my tiny baby, but I simply couldn't imagine the strength of the parents who had to fight for their child every single day, all the while knowing the news may not be good.

    But you're right: we all do it. We all live with our hearts walking (or crawling!) around attached to these tiny bodies. And we will do anything to protect our hearts and protect them.


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