The Body Remembers

Happy 24th 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

The Unwelcome Surprise Awaiting Parents of Young Kids with Special Needs

Parents of young children with special needs already know their lives can’t be planned with any accuracy. Illnesses, behaviors, school and social problems pop up like fire ant hills. The one thing upon which we can depend is a team of medical specialists.

That is, until the child becomes a young adult and is forced to find an entirely new team. I never knew this would happen. It wasn’t in the manual. So I’d like to help prepare other parents for what is to come.

Your child can be fired by their pediatric doctors when they turn 18.

By the time your child turns 18 or 20, you are fully dependent on your team and have an internal GPS of the children’s hospital. You know exactly how many minutes it takes in traffic to get to the office. You know the quietest place to sit in the waiting room. You bring your 20-pound binder with a full list of questions to each appointment.

Before Caleb’s 1996 birth, I don’t think I even knew that children’s hospitals existed. I must have driven by them and looked past them. After 20 years, we have now visited several children’s hospitals in five different states. They all attempt to be bright and colorful but there is nothing bright or colorful about having to be there. I saw the halls and grandiose seating areas through a grayed-out Instagram filter.

On my first visit to the Children’s Hospital of Philadelphia to visit my very sick baby boy, his face was contorted in a grimace of pain. Red, green and yellow plastic tubes stuck through his skin into his heart and lungs, EEG leads were tangled everywhere, and his hand was taped to a board to keep an IV in place. Numb, I watched as babies were wheeled in and out of the pediatric cardiac ICU while mechanical beeps rippled about me in Doppler waves.

A few days later I met the first of many specialists. I didn’t know there were so many kinds of doctors, or that they had pediatric counterparts.

When you find out how many specialists your child may need, the effect is similar to waking up in a strange place. You should recognize your surroundings but all you feel is panic and fear. In Caleb’s lifetime, he has needed a regular pediatrician, general pediatrician, pediatric cardiologists, immunologists, infectious disease specialists, neurologists, endocrinologists, developmental pediatricians, orthopedic surgeon, general surgeon, psychologist, regular therapist, otolaryngologist, plus a host of speech, physical and occupational therapists.

Over 20 years, I made the transition from shock that my child needed so many doctors to complete dependence on them. I went from not wanting to be in a children’s hospital to never wanting to leave. With an average of 55 visits each year, these doctors were integral for Caleb and me. I learned their language to the point that several asked me if I’m a doctor.

In 2006, Caleb broke his femur while trying to be Buzz Lightyear. The poor kid doesn’t have reflexes to break any fall, so when he landed from a height of 18 inches, his femur snapped about three-quarters of the way up. After arriving at the hospital by ambulance, I was running alongside his gurney when a nurse told me there were two Army medics who would like to follow along. I welcomed them into the fray of Caleb’s life and rattled off his 24 different diagnoses. At one point, one of the medics stopped and asked the nurse if I was a doctor. Smiling sadly, she said, “No. These moms know everything.”

I was flattered and repulsed by her response. I never wanted to be that mom. I wanted to be the mom who was cheering on my son the quarterback or chaperoning science fairs and school dances. But that wasn’t meant to be.

When Caleb turned 18, we were both still completely dependent on all of the pediatric specialists who had helped him so much. We were oblivious that this time was coming to an end. I ignored the stares of parents with neurotypical babies or young children as we sat in the same waiting room. I had started to notice there were no other people Caleb’s age but it just didn’t click the way it should have.

Caleb’s pediatrician was the first to tell me that she could no longer treat him. It was a gut punch because she was trained to know that when he presented with a rash, it might be staph. Caleb has always been a zebra and the learning curve for doctors is at least two years. Not only were we losing an adored doctor who understood and could appropriately treat Caleb, we had to start all over with a new doctor. It felt like a seventh-grade breakup.

The flip side of medical professionals thinking I’m a doctor is that new ones almost seem to suspect that I might have Munchausen By Proxy. Or they know I’m not a doctor and think I’m trying to make a diagnosis. Caleb has been my life’s work–I can see in my head how all the odd symptoms might add up to something only Dr. House could find.

Knowing that anyone might think I could either cause or imagine some of the terrible things Caleb has fought makes me physically ill, but I have learned to persevere with my listing of his symptoms and then wait patiently while they are confirmed. This usually culminates in respect from the doctor and then we can all go back to the most important job of caring for Caleb, but it’s a game I’m really tired of playing. I’m not a doctor but I know my kid and his history better than anyone else.

Caleb mentally tests around age three to five, so he felt comfortable in an office with young children. He relates to them. He loved the bright colors in children’s hospitals, which made me belatedly realize the décor is for the kids, not the parents. He was so comfortable there and now he has to contend with drab adult offices.

After the pediatrician fired us, then came the cardiologist. Understanding the trauma of losing a trusted doctor, they hired a transitional doctor to bridge the gap between pediatric and adult care, for which I am incredibly grateful. I wish more practices would do this.

We have now been officially fired from all of the pediatric specialists. Most of them were able to recommend an adult counterpart, but the most difficult doctor to find was a primary care provider. When I mentioned that Caleb has autism, several offices told me they weren’t accepting new patients. I finally called my personal doctor, who had never met Caleb, and was told that he, too, was not accepting new patients.

Exhausted and frustrated, I told the nurse, “Before you say no, you need to know that Caleb is every doctor and dentist’s favorite patient. He is so well-behaved. He’s sweet and cooperative and I will always be with him.”

She was silent, so I continued, “He has so many specialists that all I really need is a doctor to treat ear infections and maybe the flu. For everything else, I will take him to a specialist.”

The nurse spoke to the doctor, who finally agreed to take Caleb on as a patient. I thanked him profusely at our first appointment and he told me he was amazed at what a wonderful young man Caleb is. I smiled. I already knew.

Caleb is truly an exception. I have friends whose kids with autism are violent or need to be sedated for a routine tooth cleaning. As their kids age out of pediatrics, they are being met with outright refusals for treatment. Where on earth can they go when no one will treat their young adult? I understand the dilemma for doctors, and I understand the frustration for parents. I have no clue where to find the answer to this one.

I don’t think anyone seeks out the comfort we find in children’s hospitals but when you are suddenly pushed out the door, it makes you realize that things didn’t unfold like you hoped. You dreamed that your child would be cured, or that he would be the one to break all the rules. In many cases like my own, you leave the children’s hospital wearing a heavy cloak of dread for the future. You are now the parent of an adult with special needs and the end is nowhere in sight. I think this is another reason why leaving the pediatric world behind is so painful.

So here is my advice to every parent whose special needs child is around age 16. Start the search now for providers who might treat your soon-to-be young adult. It feels like it will never happen but it will and you need to be prepared. As the infectious disease doctor who fired us told me, “I’m a specialist in little kid issues, Caleb needs someone who understands the challenges he will face as an adult.”