I was asked to contribute a story for a Catholic book project, compiling stories from women with special medical diagnoses in
utero or for small children. So, here's what I wrote:
They did not receive what had been promised
but saw it and greeted it from afar
and acknowledged themselves to be strangers and aliens on earth,
for those who speak thus show that they are seeking a homeland.
Hebrews 11: 13-14
When I heard the news I was sitting in the Pediatric Sedation waiting room, across from a terrible mural of sea-life. The painting was very colorful but the fish were all malformed, elongated and disproportionate. The shark’s fin had been drawn on a different angle from the rest of its body so that the fin lifted away, attached at only one corner. I remember thinking that the fin looked like it was going to escape, the shark on the verge of losing its most defining feature.
“Is she going to die?” I asked. I
hadn’t meant to ask, but I was overwhelmed and frightened and it was the only thing I could think of to say. My eyes were still on the shark, his stupid floating fin making me angry. My 17 month old daughter was asleep next door, a large tumor having just been discovered in her spine and brain.
The radiologist was silent for a moment before answering. He was very earnestly and bravely trying to make eye contact with me, but I
couldn’t do it. “I don’t have an answer for that,” he finally said. “She should not be able to move at all with a tumor that size. What we should focus on is the miracle that she can walk.” The tumor ran the entire length of her cervical spine and then up into her brain stem. The MRI images from that day are horrifying; to the untrained eye it looks as if her entire spine is filled with cement.
The staff called my husband, who was out of town, and then sent us immediately to Children’s National Medical Center in D.C. By that evening we were settled in a room on the
Neuro/
Ortho Surgery wing, where my husband eventually joined us. By the next morning, Abbie had begun to lose the co-ordination in her legs. She was no longer able to walk.
It had happened too quickly for us to fully process it. My memories of the days before her surgery are surreal. We rocked Abbie in her hospital bed and walked the halls in a bleary-eyed daze. I
couldn’t sleep at night because I felt the need to savor every moment left to hold my baby. I don’t remember praying, but I am sure I tried. Prayer was very hard in those first few days, my mind was so overloaded and my heart so heavy that although I could turn my mind to God, I felt I had nothing to present to Him but a feeling sometimes of sorrow, sometimes of fear. I would hold Abbie in my arms and lift her to Him in my mind, but I did not know what to ask. I wanted her to live, certainly, and I wanted her to remain whole, and yet I felt afraid to ask for these things. The presence of God in those days was something I felt, but heavily, and with fear and trembling. In the sufferings of my child, I felt that I had encountered a side of God I had not really known, had heard of but not truly believed. My own suffering was a thing I expected, a thing just and deserved. But my child? This little baby on my lap, with her curly
blond hair and her quirky little smile, and her innocence: was I expected to accept the suffering of this angel? How could that be?
On the day of her surgery I woke up curled around her, and just lay in the bed looking at her face. I held her, still sleeping, all the way to the prep area. My mind was blank; I did not, could not pray, I did not, could not think. The only thing I was capable of was soaking in my daughter and feeling my heart break with love for her. A nurse took our hands and said a prayer for our daughter’s safety, and we were grateful to her for initiating what we
couldn’t. Then they took my baby away. We walked into the waiting room like zombies, and like zombies we sat for the 7 hours it took to rid my daughter’s spine of the tumor. I said one rosary, incapable of actually processing the prayer: it took me two hours. I had no words; in my heart was just one long wail to God, one long cry for help. I felt that for the first time I had some understanding of Christ’s cry of “Abba!” on the cross. I understood for the first time the anguish behind the question, “Why have you forsaken me?” When the surgeon appeared in the door, his eyes bloodshot and his face pale and lined, I thought I might collapse. My husband’s hands were shaking so much that he dropped his book and it skittered across the floor. I felt like Jacob on the mountaintop, poised to accept the sacrifice of my dearest one. An angel had saved Isaac, but I felt no assurance that Abbie would receive the same reprieve. The face of the surgeon said nothing but weariness, and the thirty seconds it took to walk across the waiting room to where he stood was the longest moment of my life. But mercy had prevailed, the news was positive. Abbie’s heart rate had given them trouble throughout the surgery but she had made it through okay. She was going to live. Time would tell if she would sustain damage, but he felt hopeful that she would eventually make a full recovery.
The surgeon had done his job well, and Abbie’s spine was almost entirely clear. There was still a large portion of the tumor in her brain stem, however, that would require chemotherapy and possibly radiation. We hardly had a thought for those hardships, however. We were giddy with joy, radiant with hope. Family came to visit her and was aghast at how weak she was, almost immobile, but all we could see was the hope in the faint wiggling of her fingers and toes. People assured us that they were praying for Abbie’s complete healing, but all we cared about was that she had lived. We were not looking for flashy miracles, healing our daughter through the gift of medicine gave no less glory to God In our eyes. We were so happy, so eager to help our daughter heal, and willing to open our minds to the mysterious workings of God. The question of why my daughter was allowed to suffer, now that she was safe, seemed a worthy academic pursuit, something we could ponder as she grew stronger day by day. Our mistake was in believing that we had approached the end of our journey.
Our God is a God of awe and majesty and mystery. These are not merely pretty words; it is a mistake to ever think that we know the plan of God, or that we can ever truly understand His ways. Two months after Abbie’s surgery, just as she was re-learning how to walk, she again lost control of her legs. The tumor, despite the weekly chemo treatments, had grown and she would again need to undergo surgery. When she had first been diagnosed with cancer we had been dazed and afraid, but now, after we felt we had put our trust in God and passed the test, now we were angry.
We admitted that the suffering of the innocent could bring about
unthought-of graces. Abbie’s cancer had brought out the best in many of the people around us; family and friends, and even some complete strangers, had been so moved with pity by our daughter that the outpouring of love and support was truly overwhelming. There are many people who reached out to us in ways that will forever touch our hearts. Our other children as well had been moved to an Inspiring level of selflessness and bravery. We felt that the world around us was a better one for the influence of our little one. Now, though, now that the lessons had been learned and the faithfulness of those around us had been proven, why was our baby still called to suffer? Sure, her pain had brought out the best in those around her. Sure, it taught us lessons about our marriage, our family, our faith. Sure, it showed us how blessed we truly were. But still all of these lessons, all of this good fade to grey when you weigh it against the suffering of a baby, any baby, let alone our own darling one.
When Abbie was taken back for surgery a second time, the sedation did not work. She was awake, and terrified to find the strange doctor carrying her away from us. They assured us that she would have no memory of being taken away, but as she was carried out she began to cry, “Mommy, don’t! Please!” I walked to the waiting room with her voice haunting my ears. Over the next few hours her cries replayed in my mind over and over again until it was no longer her voice crying out to me, but me crying out to God. As she had cried out to me, so I was crying out to God with the sophistication of a toddler. I was grateful beyond words knowing that there were hundreds of people praying for Abbie at that moment, because I was again paralyzed in prayer. I felt that I was standing before God, and His Son, and even His gentle Mother whose comfort I had always sought, and I was lost in the weight of their purpose. My only prayer was a kind of sigh, a sigh of awe and fear and desperation. I felt like someone drowning, and I could only hope that the wave of prayers for my daughter would lift me up enough to catch my breath.
She again recovered better from the surgery than anyone could have hoped, and the rest of the year progressed much like we had expected it would. Abbie is walking again, and has just now been given a reprieve from chemo. To anyone who might see her in passing, she looks like a healthy, happy, sweet and silly little toddler. We are so grateful for her health, so grateful for her life. We have hope that her future will be a bright one, although there will always be a chance that the tumor in her brain will grow again. So mixed with our happiness is a sobering dash of fear. When I look back at our darkest days, I see the many blessings that have come from our crosses. Why the heaviest cross had to be carried by the weakest and most blameless among us, though, I will never understand. Abbie will probably not even remember her time spent recovering from brain and spine surgeries, but that does not lessen the memory of her suffering for those who love her. I carry a heavy question in my heart that will not, I think, be answered in this life, and yet my faith in God has not diminished. I am pained that He allowed my baby to suffer so much more than most people encounter over a lifetime, and yet I am thankful that in His mercy He did not take her from us. I suppose that I do not need to understand why it happened in the first place, anymore than Abbie understood why her parents allowed the doctors to carry her away. Perhaps there is some spiritual cancer hidden in me that could only be
resected by the suffering of my child. Perhaps there is something greater at work, and Abbie’s suffering will right some wrong of which I will never know. It is perhaps not for me to know. I am simply called to believe, though I do not understand. Why would a God who is all-good allow an innocent child to suffer? It is a question I have no answer for. God allowed His Son, who was also innocent, to die on the Cross. That is the only answer I am given.
Happy St. Valentine's Day! We are all sick here, so we kept things pretty low-key. I made chocolate-filled pastries for breakfast (which the kids hated) and a flourless chocolate-hazelnut cake with coffee ice cream for dessert (which the kids hated), and Chris whipped up some perfectly cooked delmonico steaks with a rosemary wine sauce for dinner (which the kids hated), so I would say that V-day around here was a success.
Aaargh! I took close to 30 pictures yesterday, and this is the best I could come up with.
Dorothy (from her school parade)
Sleeping Beauty (and yes, I know this is not the 'official' costume. The official costume is lame. This one actually makes her look like a princess, not some cheap shill for Disney.)
The Calico Cat (and Claire's second year as a cat!)
The Fairy ( I fixed the upside-down wings after taking the picture.)
The........uh, cute baby with wings. You don't need a coherent costume if you aren't actually getting candy.
