My son Oliver had developed some unusual spots on his body. It was probably just the different laundry detergent, but they would not go away. The doctor at the urgent care clinic looked concerned as she examined his blood count. The second doctor she called into the room had the same countenance. I knew this expression. This wasn’t my first rodeo, and not just because my husband is from Texas.

That was the look that something was wrong.

In this house, it seems the only way you can get some one-on-one attention is to have an appointment with a specialist. Oliver and I took advantage of our mommy-child day before visiting the newest doctor in our Rolodex: a pediatric hematologist. I had asked Zac if I could take him; I learned my “scared but prepared” motto was more successful when I could hear the information directly. Also, I was getting more comfortable owning how much I needed any semblance of control.

Oliver and I arrived at the hematologist’s building but could not find the office.

“Excuse me, we are looking for room 305,” I said to two doctors walking down the hall.

“Oh yes. It is down this hall to the right. Hey, buddy.” They leaned down to match Oliver’s eyes. “That’s a great coat you got there.”

He smiled bashfully. As they turned the corner, I commented to Oliver, “They were very helpful.” It was sweet how attentive they were. We walked into the office and I whispered to Oliver, “Look at all the colorful hats everyone is wearing.” I always appreciated a doctor’s office with good air conditioning. We waited for our turn.

When his name was called, we met a very thorough doctor. We ran through the perfunctory questions and talked about Oliver’s recent outbreak of “spots.” Once again, my memory of the situation has decayed with fear, but I imagine it went something like:

“Yes, this petechiae rash is quite common. We will need to continue to regulate his platelets to ultimately rule out leukemia.”

Silence.

“Mrs. Moore?

“Yes, sorry. What?”

“You were not aware we were here to talk about the potential for leukemia?”

The extra-attentive doctors after I said room 305. The colorful hats covering the children’s heads who were receiving chemo. It was like I was watching the end of The Usual Suspects, where all the clues came together. My breath was choked by my paralysis. “No. No. My son doesn’t have leukemia. His sister has something, his brother . . . We can’t also have cancer. So, no, thank you.”

“Okay.” She smiled. “That’s not quite how that works. Let’s run some tests first.”

“Okay,” I said as I clutched Oliver. He was very interested in my coat zipper. “Doctor, I just want to add, if I may, I hope I never see you again.”

“Me too, Mrs. Moore. Me too.”

While most of this conversation is recall, I am certain I told that nice doctor we never wanted to see her again.

We entered the next waiting room to get through another round of testing. I squeezed Oliver, as if my enveloping arms would generate more platelets in his body. I distracted him with lollipop bribes and a colorful car book and decided to have a little chat with God.

I was not one for prayers. When I was a little girl, I would say the alphabet in temple and hope that a higher power could put it together to make what was needed. I had been hearing a lot about God since Jordan’s diagnosis, as many found it a comfort to explain that my family would never be given more than we could handle. This sentiment was helpful for many, but it never brought me much solace. It seemed as if we had already proven we were pretty tough. Waiting in that doctor’s office, I had no more strength. I had spent years pushing aside my emotions, but this time I just needed to swim in my terror. I wish it hadn’t taken something so fearful to make me realize my way of coping wasn’t working.

I went off instinct. My prayer began in Hebrew with the blessing said over challah and ended with the English plea, “Please let my baby be okay.” Just in case, I tried the complete English version. We are doing the best we can. Please keep this child healthy. 

By our fourth reading of the truck book, it was Oliver’s turn to get his blood drawn. They chose his left arm, as the vein was more accessible. It was hard to contain him, because he is a small, squiggly boy, but I had carried enough car seats to clutch him safely. His right hand escaped to stop the phlebotomist, which immediately caused the needle to impale his pointer finger. The receptionist staff came running in to see what had caused the screaming. The phlebotomist’s profuse apologies were only making it worse and I miraculously calmed my child as the needle that had pierced through his entire finger was removed.

Maybe I should try my prayers in another way. Perhaps God preferred some Shakespearean iambic pentameter.

“Ma’am, I have to tell you . . . ,” the phlebotomist began after we got Oliver’s finger cleaned up.

“What?”

“I still need to take his blood. We need four more vials.”

I was done. No one should have to be this durable. Seriously. I grasped this two-year-old boy in fear but smiled down at him without as much as a furrowed brow. It’s the same trick I learned when Jordan was working on her receptive language. He will read my body language.  “After this, should we go get some ice cream?” I whispered. I couldn’t stop what was happening with his blood or this clinic, but I change the subject. It was, after all, a combo of my favorite coping mechanisms: distraction and food.

Zac and I again found ourselves on autopilot as parents. It is what happens to us when we are truly distressed. We tried to talk about Oliver, but we couldn’t find the words. In fact, I don’t recall us allowing ourselves to talk about the what-if. Our families checked in on us and provided as much comfort as possible. Zac and I just skated on the surface: the next appointment, the paperwork, the facts. The other two children. The doctors determined they needed to monitor Oliver’s platelets for several months before making conclusive decisions. We found ourselves back on the couch, with some distracting television and treats. We had been here before.

I went to bed every night, bargaining with a higher power. My mom raised us on the concept of mitzvah points. You did a good deed and could get imaginary points to transfer to whatever you needed. It’s karma, juju, kindness. I would gather all the mitzvah points in the world to keep this child safe. I would do whatever I needed just so he would be alright. In the quiet, the feeling that arose was guilt.  I had spent so long worried about Jordan and her diagnosis, but she was always going to be healthy. I knew the fear of going into surgery and going under anesthesia, but none of that was compared to a medically fragile child.  I had done my best to train myself for whatever would come next in our family, but I never bargained for this.

The next step was for the hematologist to perform a spinal tap to give us more information. I knew how much that hurt and didn’t think I could watch my baby go through it.  A brave Zac escorted a brave Oliver into the surgical room. He held Oliver’s hand as the anesthesiologist placed a mask over his face, just as Zac had done for Jordan’s surgery at birth and Austin’s eye surgery. Zac never shared the specific details of what it was like to watch your child’s induction of anesthesia, but he always exited the same, stone-faced and clutching the stuffed animal the child had selected for the procedure. I was always in the hallway, waiting for him and eating brownies. In this case, when Zac entered with Oliver’s beloved Bobo, we spent time gathering materials for Bobo so he could have the same matching Band-Aids and armbands as Oliver would when he woke up.

The moment you see your child waking up from anesthesia is enough to make you want to return them to the womb. Anything to reassure them they are safe and will be fine. They clutch their juice box, with their eyes barely cracked open, so helpless and ready to be held.

When the final spinal tap came back, our pediatric hematologist and oncologist, who had now moved to our speed dial, had definitive news. It was: idiopathic thrombocytopenic purpura (ITP, for short).

February 22, 2017. Not cancer.

Although many children outgrow this diagnosis, it appeared Oliver would have this autoimmune disease for his life. He would require blood tests, and he might not be able to play contact sports, and we would need to manage the warning signs. If the platelets were too low, he would require a transfusion. This seemed unlikely.

For now, we have been teaching Oliver the secrets of carpet hockey, to keep him safe from any contact. We are grateful that if one of the three children needed to have a diagnosis that required giving blood so often, it is the one who does not have sensory needs. Oliver is learning how to take ownership over his body, even at a young age. He spotted his own petechiae rash, a warning sign. He knew a spontaneous bloody nose meant we needed to rush to the emergency room to take his platelet count. He told the phlebotomist he wanted a Band-Aid with a star drawn on it. He directed himself to the gift shop to pick out a candy treat—for everyone.

When we returned home from our latest ER visit, he went to play with his trains, happily examining his star bandage. Sometimes he is so brave, I forget he is just a little boy. On this occasion, he looked up and panicked when he didn’t see me. When I came running at the sound of his shrieks, he whispered in fear, “Mommy, keep me safe.”

I brought him up to his room for bedtime and hugged him fiercely. I secured Bobo in his arms and tucked in his corners a little tighter just to prove how safe he was.

It is my privilege, my obligation, my purpose to keep him safe. But this is the hardest part of motherhood: cradle to grave, managing your child’s safety. How much of that was in my control? It was the same vulnerability I’d had handing a week-day-old Jordan to the surgeon, putting a week-old Austin into an MRI machine, and now the aftermath of thinking my toddler had leukemia. It is enough to leave me with a swollen heart of fatigue and fear.

I needed my own mom’s hug. I invited my mom out to breakfast. We quickly fell into the melody of conversation that can only be found after thirty-six years of cultivating a relationship. The lilt of her voice, describing the upcoming holidays, was reminiscent of the bedtime stories she’d told me as a child. The concern in her forehead mirrored the gaze in 1994 when my classmates’ taunting had grown excessive. And the way she twisted the napkin with her hands mirrored my own.

“I am having a hard time,” I allowed myself to say, and then I spilled out the contents of my brain. She knew, of course, and she just listened.

She would begin to try to put me back together—it was her job to keep me safe. For now she enveloped me with her loving arms, and I allowed her to take some of the weight. It was my mom’s turn to love me big.

I cannot see when the next challenge of motherhood is going to hit, but if I have learned anything, there will be more. I am grateful in these times; I can take a break from being the protector and just allow myself to be held.

 

Leah Moore is  a high school English and Theater teacher. She has just finished writing a memoir, Loving You Big, about raising a child with rare disabilities.  Her writing to expand the narrative about individuals with disabilities can be found on her blog www.lovingyoubig.com. She has just finished writing a memoir, Loving You Big, about raising a child with rare disabilities.