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Tuesday, November 13, 2012

Part II, The Thrashing - Saying Goodbye to Normal

(Continued from "The Thrashing I needed to Let Go")

What is normal? When do you decide that you have arrived at a place in life where you are no longer walking with a large community, but you are on an island, inhabited by few? When your daily struggles are yours only. That you are not normal.

I feel like my husband Lynn and I walked out of that community of "normal parenthood" a long time ago. And painfully to me, people did not understand where I was, and that I had walked off...that I was not where they were. That I mourned the loss of my picture of parenthood. I felt frightened and alone. After the big drama had passed where our son fought for his life, and then the more subtle day-to-day struggles swallowed us up (as they often do today), it seemed like some people turned away from us. It seemed like they believed we could just be good parents and make the trouble go away. Get back to normal. We weren't fun anymore.

Let me back up to when I started to realize that things weren't so normal...

When our son, whom I call "T",  was three-and-a-half weeks old, I drove him to the pediatrician's office for a routine checkup. We were living in New York, at the time. My mom was with me, visiting from Michigan. I thought I knew how the day would go. I had a picture in my head. Normal. So when the pediatrician held that shiny steel disc to his rising chest for a little too body stiffened. And when her brows crumpled, and I heard her calmly say that T's heart was not sounding quite right...well, I started taking careful breaths so that I could process her words and prevent the room from spinning. I thought, "noooooooooooooooooooo, this can NOT happen. Not to us." This wasn't normal.

I called Lynn to meet us at the cardiologist, 30 minutes from where we were. I chattered nervously with my mom as I drove my baby, who had been out of my stomach for such a short time, to an unfamiliar place-- where doctors look at hearts. I hadn't given his heart any thought until now. A miraculous organ, beating constantly, supplying oxygen, blood, and life. What made it work? I had taken it for granted. 

I started to imagine worst case scenarios. I imagined my baby's heart failing, and I imagine losing him. I imagined him going to live with God, somewhere I couldn't see him, love him and care for him. I imagined the ultimate test of faith. Giving my baby back. Would I survive that? I felt deathly sick inside-- parched. But I drove carefully to the cardiologist.

When our minds are as shaken as mine was that day, it is only by grace that we still can drive, push a stroller, talk. I might have looked like any other typical mom walking in to a hospital with a newborn. Maybe someone would ask me my baby's age, "coo" at him, or ask me if I had a quarter for a meter...They wouldn't know that my stomach was tied in a knot, shrunken with fear, panic, uncertainty.

I passed the EXIT sign of the "normal" life of motherhood-- maybe forever. The door swung shut.

I now believe that I had to say goodbye to normal to be able to find my true faith. I needed a thrashing. That false idol, the normal life, had to be peeled away to expose a richness only God could create. No more gauging and planning my family life and that of my child's by what I saw around me. I wasn't really alone like I felt at the time-- I was getting closer to God. I had to find Him first to be able to accept my blessings-- my not normal life.

The news about our baby that day was anything but typical. After a short look at T's heart on an ultrasound, the cardiologist told us that our baby had TAPVR-- a rare congenital heart defect where all of the veins that were supposed to be going to his left atrium were going to his right atrium. He needed open heart surgery immediately. We learned that his blood wasn't getting enough oxygen, but he was surprisingly strong. His heart defect was overlooked at birth because was not been born blue (from lack of oxygen), as most babies are with this condition. By a miracle, his heart had its own design, allowing some of his blood to enter the left atrium from the right through an opening that shouldn't have been there at that point. 

So there was a blessing. He was alive and strong. The fact that his heart was not normal, and had compensated for a serious defect, actually saved him and his organs. It was my first glimpse of how God, through my child, would teach me, the artist, the so-called creative one,  how to really live and view the world differently. This life outside the normal was a blessing.

At Morgan Stanley Children's Hospital, we waited overnight for his surgery. I nestled T in my arms, while trying to sleep on a cot, wishing that the love and warmth I could give him with my body and voice would cure him. Lynn slept beside us. It all seemed unreal. But the next day I stopped breastfeeding to prepare my baby for surgery. As he fasted, I rocked him, hungry and crying for hours. Lynn seemed strong and optimistic, and I was whithering inside. I sang to him, gave him a finger to suck, whispered love words in his ear. I felt so helpless, but I might have appeared strong. I did not feel normal.

The most memorable moment, possibly of my life, was when Lynn and I passed our son to a nurse, cloaked in surgical clothing, in a long, cold hallway. An instant later, the nurse and our baby disappeared into the operating room. He was gone. His first time away from me. This was not my dream of motherhood. I had let my baby go to a place where his tiny heart would be removed and taken apart. His body would be sustained, at a temperature near death, by a heart and lung machine. My own heart felt gone. It had raced into that operating room, releasing the rest of me, floating into a desolate, blank emptiness where I would remain until my baby was back in my arms. I was undone.

But I wasn't alone. I had Lynn, and he was still talking positive. Of course I had God, but that day my faith wasn't very strong... I think I could feel Him holding the string that I was floating from. We also found a whole waiting room of people who appeared to be floating in fear, pain and worry just like me. They had pillows, blankets, tissue, and blank stares. They were waiting for hopeful news about their children. It may have been a lonely place, but there were other inhabitants. They were living in a world that I never knew existed, and it did not seem normal.

Then, over five hours later, our surgeon arrived, smiling. He told us that the surgery was successful, and we could see our baby. I practically ran out of the waiting room, leaving that sad floating place. I felt bad for leaving people behind. I wanted everyone to feel the ground under their feet like I felt. To get news of life, and to feel a return to something normal.

We had been warned that T's condition might scare us. His body would be swollen, he would be unconscious, attached to machines and tied down to a bed. But his life, his rising chest, still with us, did not seem scary to me. He didn't have to look normal. He was ALIVE. He was breathing. I think I cried with joy-- but I can't remember. I can only remember the joy.

I'm going to pause the story now with a thought...

If I could live each moment, seeing the glory that I saw in my little baby's breaths of life that day...What would my life look like?

I think I would get more glimpses of God. Maybe others would too.

If I could see each moment of the day, even if it is an unexpected moment, even if it is not in my control, as an amazing LIFE gift. No tubes, abnormalities, disabilities, defects, disappointments, judgements, surprises could disguise the gift. Then would "normal" matter?

Tonight when I looked at my children I saw hugs, laughter, complaints, frustrations, silliness, messes, procrastination...trouble...every trace of their lives. How many more moments, days, years do I have to see them for who they are? Beautiful as they are. Not in my control. To accept every ounce of them? The clock ticks.

Back to the story-- T's health struggle wasn't over on that day of his surgery. There is more to tell, and many more blessings to share. So I'll continue writing another day...

In the meantime, I pray that through this story, or through other means, you and I might see miraculous things in the "not normal" of life and in the lives around us. Every minute of the day.



Anonymous said...

Amy, thank you for sharing this beautiful, heartbreaking, touching and insightful story. I looked up "insightful" to see if its meaning was what I had in mind and it was. "the capacity to gain an accurate and deep intuitive understanding of a person or thing." Your writing is deep and vulnerable and sweet. -Michelle

Liz said...

beautifully written - wonderful insights - keep up the great work - your writing will have an impact on others.... Praise God!!

Granny Nanny Times said...

Thank you, Amy, for describing this moment so vividly and honestly. The two days you described were among the most terrifying moments I have experienced in my much longer life. The ride to the cardiologist, the strange machine flashing bright colors that described the interior of T's heart, the doctor getting a big sheet of paper and a large marker to draw a picture of what was wrong; it was surreal and definitely not "normal." I kept saying prayers inside my head, and then I started asking complete strangers to put Tommy in their prayers too. I remember asking this waiter at a place where Dad and I had dinner, and he said "What is your grandson's name?" and I said, "Thomas," and he said, "Okay, I'll pray for Thomas tonight." I was amazed that all it took to get support was to reach out and ask. It was a lesson for me in that very frightening time. Help is all around us in unexpected places.

Granny Nanny Times said...

Thank you, sweet Amy, for sharing this experience with insight and honesty.
The two days you describe are among the most terrifying of my much longer life. The long car ride to the cardiologist, the strange machine flashing brightly colored shapes that defined the interior of Tommy's heart, his tiny shape wearing only a diaper on the huge examining table, the doctor getting a large sheet of paper and a black marker to draw a picture to explain what was wrong. It was a strange and surreal moment. I found myself saying endless prayers in my head, and then I began to ask others, sometimes complete strangers to join me. I remember asking this waiter at a restaurant where Dad and I were having dinner, and he said, "What is your grandson's name?" and I said, "Thomas," and he said, "Okay I'll say a prayer for Thomas tonight." I was amazed to discover that support is all around us, if we just reach out.

Challengermama said...

Thank you Michelle and Liz for reading, and for the encouragement. Feedback is helpful and makes me want to keep writing!

Through sharing these stories and thoughts, my daily view is changing. I feel more part of a community and more present... Words are amazing, aren't they?

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