Lives in Pieces: Vale et memini (Goodbye and I Remember)

oranges-in-baskets

Note: this entry was originally posted in January. I am reposting parts 1-3 since so much time has passed between those entries and part 4, which I will post tomorrow.

Part 3: I Dream of Oranges

It’s funny, but the time between the baby showers in February and Alexis’s fourth birthday in July just seemed to pass so quickly. In June, we had Caitlin’s three month portrait made. She was wearing a tiny rosebud print dress with pink trim on the sleeves and neckline. I remember that the sleeves were just a bit tight on her chubby arms. She had this extra crease in her arms like a lot of chubby babies do. I used to love to play with that crease in her arms.

On July 7, we had Alexis’s birthday party. I remember it was the birthday of  Barbies. She had asked for several Barbie items, and the family pitched in and bought them. I remember taking one picture of the Ken doll sitting in a lawn chair, flying a kite. I told Alexis that Ken needed to go find a job and stop relying on Barbie to support him. Then we all started putting Ken in these ridiculous poses and taking pictures of him. It was pretty hilarious. Caitlin was sitting in her little blue chair on the floor, taking all of this in: the bright color of the balloons, the noise, the packages. I took a picture of her sitting in her chair. Everything seemed so utterly normal.

Pat and Winn weren’t at that party. I really don’t remember why. We didn’t see a lot of them that summer. Or maybe we did. A lot of that summer has become a blank to me. The last invitation I remember that summer were friends of Paul’s inviting us to go sailing, but we had to turn them down because Caitlin had some kind of virus and was throwing up. She was throwing up so much that we ended up taking her to the emergency room on Saturday. We saw a resident. He said that it was a virus and gave us pedialyte and sent us home.

On Monday, August 23, I was to begin my new job teaching English at Old Dominion University. It was a pretty exciting time for all of us. We had our two little girls. I had the job of my dreams. Paul was doing well at his job at the medical school. It seemed that life our lives were charmed.

That Tuesday was when our lives began to disintegrate, and they never recovered. When I went back to work, my mom and Paul’s mom were going to share in the responsibility of watching the girls. I was in my first faculty meeting when I was called out for a phone call from my mother. I was really perturbed that she would call me at work. I picked up the phone and it was the pediatrician’s office, one of the nurses who I knew very well. She was speaking calmly, too calmly. She said that she was going to put my mother on the phone.

I remember driving to the Children’s Hospital of the King’s Daughters, which was just down the road. I remember meeting Paul; the medical school was across the street from the hospital. I remember a CT scan showed blockage. I remember falling down a wall. I remember calling Kathleen in northern Virginia at work and saying the words, “Caitlin has a brain tumor.”

whole-orange

An operation to remove the tumor. Seven hours long. Pat was there with fresh oranges, talking to me. The tumor was the size of a small orange. Later, I would write a poem comparing the ependymoma to an orange. I remember nothing Pat said to me. Too many people were there. One of the women from the medical school gave me a rosary; it was red, like garnets. I just remember noise. I just remember wanting all of them to go away.

After recovery in the PICU, Caitlin was sent to the Progressive Care Unit. After a few days, she had another operation to install tubing which was going to be used for her medicines: chemotherapy, whatever she needed.

I was trained on how to flush and clean the lines because Caitlin was going to be allowed to go home. The plan was that she would come in for overnight stays when she needed chemo. We were going home on Labor Day weekend. In the meantime, ODU had given me the option of giving up my classes for the semester or taking a reduced load. I took a reduced load down to two classes. I was actually still hopeful that everything was going to be all right. After all, Pat had survived.

Caitlin stayed home for six days. I came home from school to find my mother completely distraught. The back of Caitlin’s head, which had been shaved for the operation, was swollen, the incision puffy. I called the neurologist, and he said to take her to the ER at the hospital. She was readmitted to the PCU with a staff infection, that dreaded infection that hospitals give their patients, one of the oxymorons of a sterile environment. The neurologists had to drain the fluid from the incision every morning.

They put Caitlin in one of the two private rooms in the unit, which had a pull-out bed because the nurses knew that I would be sleeping at the hospital whether or not I had a bed. I began to bring in personal things: a teddy bear, dresses. I didn’t want her to wear a hospital gown. The nurses, who already knew me from our previous stay, indulged my every whim.

Each morning, I gave Caitlin a bath, and I put her in one of the beautiful dresses that Pat had given us. I fixed her hair, at least, the hair that she still had. We took pictures of her. From the front, you couldn’t tell that they had shaved her hair in the back. She still looked beautiful with all of that dark hair. Each day a different dress, a different bow. I brought in more and more personal items. I turned the sterile hospital room into her bedroom. No one stopped me. The hospital closet held so many dresses, her red dress, green dress, blue dress. I brought in her booties and lace socks.

After her first round of chemo, everything changed. Her body became so weak, and she threw up repeatedly, non-stop. The nurses paged the neurologists. One of the younger men in the group showed up and said within range of my hearing, “She’s throwing up. That’s what they do when they have chemo. I don’t know what you expect me to do.” The next day I changed her primary care from the neurologists to the oncologists and had a note put in her chart that that particular doctor was never to touch Caitlin again. The oncologists gave Caitlin something for her vomiting and took blood samples every few hours to check her white cell count, which wasn’t good.

Her main oncologist, who happened to be a friend of mine, called me from out of town to give me the bad news. He told me that he had never seen a count that low from a chemo treatment. They were going to suspend her chemo for now and rethink how to treat her cancer.

jhospital-monitorThat night, her monitor alarms kept going off. I had a new nurse who did not know Caitlin’s case. She would come in, look at the machine, and look at Caitlin, and say, “Well, she’s breathing just fine. I don’t know why the monitor is going off. There must be something wrong with the machine.” I asked her if she was sure. She looked at me as if I were just one of those pesky mothers. The other nurses had already learned to take my questions seriously as by then I knew how to reset all of the monitors, knew how to read results, and knew my daughter’s body signs instinctively.

In the morning, I gave Caitlin her bath, and I was rocking her when I happened to notice that her nails were blue. I knew that meant that she wasn’t getting enough oxygen. I had another new nurse, and she was nowhere to be found. I waited another half an hour. I had asked for a chest x-ray the day before, but no one had followed through, and between all of the chaos, I had forgotten about it. Now, I was kicking myself for not being more assertive.

I went out to the nurse’s station. They took one look at me and asked me what was wrong. I told them that Caitlin’s nails were blue. Within two minutes respiratory therapy was in the room and so was a portable x-ray machine. Caitlin had pneumonia, pneumocystic to be precise. The kind of pneumonia that AIDS patients get because their immune systems are so depressed.

One of the nurses who knew me the best told me and asked me about the pneumonia, and asked me to pack up all of Caitlin’s belongings. They were transferring Caitlin to PICU. I called Paul at the medical school. He and a friend packed up all of her things and met me in the waiting room for PICU. We couldn’t go in right away. When we were allowed in, Caitlin was in a hospital gown, and she was on a respirator.

There would be no more dresses.

end of part 3

“You do not see the river of mourning because it lacks one tear of your own.” ~ Antonio Porchia

521px-hammarby_angel_statue

Hammarby Angel, Sweden

“Mourning is not forgetting . . . It is an undoing. Every minute tie has to be untied and something permanent and valuable recovered and assimilated from the dust.” ~ Margery Allingham

“Death lies on her like an untimely frost upon the sweetest flower of the field.” ~ William Shakespeare

yellow-minaiture-roses
Yellow Rose: Memory

I had an interesting conversation a few weeks ago that has stayed on my mind. A professional woman whose opinion I greatly respect told me that I am still grieving. Her comment momentarily took me aback for two reasons: I had not been talking about the loss of Caitlin. And secondly, it’s such an integral part of my life that I never stop to think about my grief.

But the truth of the matter is that yes, I am still grieving for Caitlin as well as for my father. I lost my baby girl many years ago. She was the second child that I carried, after Alexis, and the reality is that if we had not lost Caitlin, we may never have had the boys. But we did lose Caitlin. She was seven months and 16 days old when she died in my arms. Her death was a result of many things, the first being the malignant brain tumor. Everything else that came after only hastened her death.

The operation to remove the brain tumor was successful in that they were able to remove the entire tumor. I was told that it was the size of an orange. Imagine that girth in the skull of a seven-month-old baby . . . After the operation, Caitlin contracted a staff infection. After she had recovered from that, she began her chemotherapy. Essentially, I would have to say that the chemo probably was the real killer: it depressed her immune system so much that she ended up with pneumocystis, a particularly pernicious strain of pneumonia, the type that people suffering from AIDS can contract. The pneumonia led to her being put on a respirator. The respirator led to first one chest tube and then many chest tubes.

Ultimately, this string of events was too much for her small body. She died as she had spent most of her life: in my arms on a Monday afternoon at 2:42 on November 7.

To say that this day changed my life so completely does not even begin to describe the repercussions of losing my child. To say that I have grieved every day since may sound like hyperbole, but I do not think that it is.

“Give sorrow words; the grief that does not speak whispers the o’er-fraught heart and bids it break.”  ~ William Shakespeare

grieving-angel-statue
Grieving Angel

For the first few years after her death, I visited the cemetery almost every day. Some days, I would sit there at her graveside and just keen until it felt as if my heart were completely empty. Other days, I would just sit and listen to the birds and enjoy the quiet communion. At times, I would imagine how I must appear to a casual observer, but then I realized that anyone who was in the cemetery with me, aside from the workers, was there for their own communions and cared little at all how I appeared.

Eventually, the grief became such an intrinsic part of my life that I believed that it no longer consumed me. Sometimes, the realization of her loss would come upon me unexpectedly, and I had no choice but to give in to the tidal wave of mourning. If these moments happened at home, I would take a shower to mask my tears and the ensuing moans that would escape my body so that Alexis and the boys, who were too young to really comprehend what was wrong, would not see or hear these unasked for echoes of my soul’s despair.

These moments assailed me less and less the more that time passed, but the truth is that they still have not completely disappeared. And now, if they come, they are sometimes a mixture of the loss of both my child and my father, and how completely helpless I felt at both of their deaths.

“When our children die, we drop them into the unknown, shuddering with fear. We know that they go out from us, and we stand, and pity, and wonder.” ~ Henry Ward Beecher

After Caitlin died, I went into therapy. It was that or be completely consumed by my grief. I learned a morbid fact in therapy: The loss of a child ranks as second or third on the list of the worst things that can happen to a person. Being a concentration camp survivor tops the list, followed by being a prisoner of war. Sometimes the first two are considered equal in how badly the effect of these events can crush the human psyche.

angel-in-irish-cemetery
Angel in Irish Cemetery

The usual platitude, of course, is that losing a child is unnatural in life’s grand scheme. One is not supposed to outlive a child. But I came to realize that life’s grand scheme was a sham, at least for me. My reasoning was thus: What grand scheme could possibly insert the loss of a child into the fabric of being? I’m not talking about religion or a loving deity here, just fate.

Fate truly is fickle. For how many of us actually have exactly the life that we imagined we would have? How many of us have suffered incredible losses that we could never anticipate? And then I had an epiphany: Fate will never be what you expect it to be. The ancient Greeks knew that, which is probably why they referred to fate in the plural: the Fates.

Fate, for me, was my enemy. It insinuated itself into my existence and wrapped itself around my heart like a tightly-fitting glove. And as a result, I found that my capacity for love was forever changed. Or at least that is how it felt for a while. Let me give you an example: After Caitlin died, I realized that I was holding back in my feelings for her surviving older sister—just at the time that she needed me the most.

It was not a deliberate act. Rather, it was an act of self-preservation; i.e., if I do not allow myself to love completely, then if I lose her, it won’t be as devastating.

This is how insidious the loss of a child can be. One begins to view life myopically. Everything is tinged by the loss, even the love that you still bear for those dearest to you.

“Memory is a way of holding onto the things you love, the things you are, the things you never want to lose.” ~ From The Wonder Years

caitlin-and-me
Together With Caitlin In Normal Times

Fortunately, I was able to overcome my fear of loving my daughter. I realized that I could not let loss control my heart, no matter how much it tried to still my affection. I allowed myself to love completely again, and as a result, I had two more children, two boys. And in allowing myself to love again, I began to live again.

In the years that followed, I attempted to focus more on the time that we had with Caitlin, rather than the agonizing period in which we lost her. But again, as with most things, even this approach was faulty. The reverberations of a loss of such magnitude are farther reaching than most people realize, and to deny my memory the loss was to deny Caitlin’s entire life.

“By the waters of Babylon we sat down and wept, Remembering thee.” ~ Algernon Charles Swinburne

angel_statueI have found that people who have never suffered the loss of a child cannot possibly understand just how permanently it shapes your life. I once had someone ask me, in total seriousness, if it wasn’t time that I stopped grieving and moved on. What this person could not possibly comprehend was that I had moved on, but that the process of mourning is a never-ending process.

Like an ocean, mourning ebbs and flows, but it cannot be controlled completely. Time does heal, but simultaneously, time stamps forever in memory the life that was lost.

In the end, I suppose that how we grieve is a reflection of how we live. This was one of the things that ultimately drove an unmoving wedge between my former husband and me. There are those stages of grief that every grief counselor and therapist will tell the mourner about, and then they always add that individuals move through these stages differently. This is what happened to us; we moved through our grief differently, and eventually, separately, and few relationships can withstand such vast differences in functioning.

Which brings me full circle. The truth is that I still carry my grief with me. It is compartmentalized and for the most part governable. But it is omnipresent, and to deny that would be to deny my very existence. I fear forgetting, even though to do so is well nigh impossible because Caitlin will always be a part of who I am, of the face that I present to the rest of the world. And losing her does not negate my love for her.

I buried my beautiful, dark-haired daughter on a brisk November morning, but I did not bury myself with her, as much as I wanted to, tried to. I persisted and endured, and I am stronger for it, but my weakness will always be the loss of my baby girl. This is the pattern of life itself. This is a part of my tapestry, the one that I am still weaving. Perhaps, in some ways, it is the largest part, and it took an insightful remark to remind me of that. But while Caitlin colors every part of my life, she does not overshadow it. And this, more than anything, is probably the reason that I have survived.

There will be more later. Peace.