Neverland Without a GPS

Happy 24^th birthday to my darling Caleb. I’m not with you this morning, just as I wasn’t on that cold, rainy day in Princeton, New Jersey in 1996. You had been born just after midnight and the staff kept you from me all night because they knew something was not quite right.

I understand now. I empathize with the nurses who kept begging me to get some sleep. They knew the next part of our journey, of which I was naively unaware.

I am someone who wants to know everything, read everything, and learn the language of doctors so I can converse with them, but this naivete served me very well for the next six weeks. If I had known what was coming, I may have just collapsed.

“Please,” the one who had scrubbed into my unplanned c-section begged, around 4 AM, “Please try to get some sleep.”

“It’s been four hours. I just want to hold him. I want to tell him his name. Then I will sleep, I promise.”

I will never forget the soft touch of her hand as she brushed my hair from my face.

“They just need to watch him a little more and then I promise we will bring him to you.”

“What are they watching him for? I just had my daughter 17 months ago and she was with me within an hour. I had a c-section then too, but I was able to let her sleep on my chest. Please, I just need to meet him.”

“I know,” she said, and I know now that when she looked out the window across the room, that she was holding back tears. She was just being the messenger, but it was hurting her too.

Oh, my sweet boy, what were you thinking all those hours when you were alone under bright lights being poked and prodded?

Our labor was violent because my blood type doesn’t agree with yours. I felt my own life slipping away in the blood that was falling from the bed to splash on the floor, in the vomit that was spewing from my mouth, landing everywhere in that room. I fought so hard to hang onto that lifeforce. I couldn’t leave you and your sister Sophie.

After several hours, as you were fighting me, all 9.6 pounds of you, my life’s spirit began to wane. In that time, I felt an immediate kinship and sorrow for all the moms before me who had died in childbirth. I knew that they, too, had fought as hard as they could, and I knew their heartache in the marrow of my bones.

You, my hero boy, kept fighting. You knew it was your time to get out and you did everything right. My body just stayed locked, betraying me in the one act for which I had waited a lifetime.

I don’t know how long after, but soon I was being wheeled down the hallway on a bed with one wheel that would not keep spinning, like a grocery cart that keeps bumping you into the shelves. Panicked voices swirled all around me. The lights above me flickered as I passed out.

“Stay with us, Kate, we’re almost there.”

I was asleep before the sedation even hit. Even then I was dying. You knew this and you kept kicking and fighting for your own life, as you should have.

I woke to the oddest sensation of scissors cutting through my last c-section scar and pushed the button for more morphine, then slid back into oblivion.

A short while later, I awoke because the air in the room stilled.

I realized that something was dreadfully wrong.

You didn’t cry. The doctor kept gently rubbing your chest and saying, “Stay with us.”

I heard the whisper of “failed APGAR” and as they opened the door to wheel you to the nursery, one of the nurses turned back to me and said, “It’s a boy, Kate, we’re just taking him down the hall and you can see him soon.”

Terrified and conscious, I felt each stitch in my abdomen. It was just a tugging of skin and the anesthesia kept the pain away, but my 27-year-old self-lay there in foggy confusion, waiting for them to be done so I could see you.

The Medical Center at Princeton wouldn’t open a fully operational Neonatal Intensive Care Unit (NICU) until 2019. In 1996, they did all they could for you. You were what they called then a “blue baby,” and our wonderful pediatrician was doing his best with an adult ultrasound, trying to ascertain a diagnosis. He was restricted by lack of equipment that was available in so many other hospitals at the time.

During those hours that you were kept from me, that dedicated physician was making calls all around the tri-state area. He surely had noticed the markers that screamed a genetic syndrome. He was fighting to help you survive.

By 6 AM I was still wide awake. My heart was starting to hurt for want of having you in my arms. The nurses continued to be so kind, to beg me to get some rest, but sleep was in another realm of the galaxy until I could see you.

Finally, as family came to congratulate us around 11:00 AM, they were asked to leave so the doctor could deliver his news. He had been Sophie’s pediatrician and he was rather brash with his words, but he was always right, and he always did exactly what she needed.

His usually neat ponytail was unruly, lines creased his forehead, and his eyes were red from enduring every second of this with me, though I didn’t know that.  He asked everyone but your father and me to leave, then he sat gently on the edge of my bed.

“I know you’ve been waiting to see your son, but there is something wrong with his heart.”

I sat up too quickly, tearing a few of my new stitches. I had never even thought that a baby could have a heart problem. With mercy that I hope he received back a thousand times, he didn’t tell me any of the other things that he surely expected we faced.

“How do you know something is wrong? And how do you not know what it is?”

“Our equipment here is only for adults, so he needs to go to a children’s hospital where they can fully evaluate him.”

I asked him which one he would send his baby to. Without taking a breath he said, “Children’s Hospital of Philadelphia.”

I would later find that he had done his residency there and was incredibly well-respected by everyone we would meet. That rough outer shell was protecting a heart that loved his patients more than their parents would ever know.

“I need to see him” I whimpered through tears that would not stop for four days, until I could be with you.

“I know,” he said, as the EMTs made their arrival a few minutes too soon. “Give her a minute with him, please,” he said, just as that sweet nurse brought you in, bundled tightly in that white and aqua and orange blanket so reminiscent of 1996.

“Hi there,” I said as I reached for you. You were almost 10 pounds and so long. You reached your hand out to hold mine and I started to cry harder. “Your name is Caleb. Do you like that name?”

My sweet boy, you didn’t coo or cry or even look around much. But you felt so right in my arms. You already lived in my heart and I couldn’t bear to let you go. But if I didn’t, they couldn’t have made an aortic arch for you, or sewn the hole between your pumping ventricles. If I didn’t, you wouldn’t be here and that was not even a consideration.

Precious Caleb, you have been pure joy in my life. You have led me down roads I would have gladly hurried by, but I’m grateful for each one because I got to keep you and help you grow as you bravely traversed each one. You have suffered so much pain, so many surgeries and accidents and illnesses, but you are the happiest and strongest person I know.

This morning, as I have for the past 23 years, I have woken from a nightmare. Thankfully, I don’t remember them. I think my body remembers the physical and psychological pain of your birth and my brain sends a nightmare, so I don’t forget.

I don’t forget how very lucky I am to have been able to bring you home. I don’t forget that you are still with me, still laughing that belly laugh and still smiling through those beautiful blue eyes. I don’t forget the hours and hours of all kinds of therapies and incredible therapists and teachers and doctors who have brought you to where you are now: a semi-independent young man who is truly living his best life.

My beautiful boy, may this birthday and every one to follow always be days of laughter and love. May you always know how treasured you are. May you feel in that wonderful, corrected heart the love that you bring out in others. May you always know that you are exactly where and who you are supposed to be.

With all my love,

Mom