Love Rocks

Helping to care for my father-in-law has been an exercise in keeping my own emotions in check. Everything from carefully moving him from bed to wheelchair to toilet to bed, positioning him first on one side then the other to avoid pressure sores, spending an hour to help him slowly eat each meal, discussing his care with my mother-in-law and the Hospice staff, working out the schedules for his care, reviewing the medical bills, all these things bring a flood of memories bubbling to the surface, threatening to rip away the restraints tied around my broken heart. Memories of the struggle my youngest daughter went through during the illness that stole her joyous life at the tender age of seven. Memories of the wretched chemotherapy that caused her to vomit for forty-eight hour stretches while she was tied to the IV lines pumping poison through her veins. Memories of the excruciating headaches she endured when her doctor tried to reduce the steroids she was taking. Memories of the Cushing Syndrome she developed as a result of those steroids and the horrible side effects that ensued. Memories of tending to her round the clock once she could no longer get out of bed, sitting vigilantly by her side hoping against reason for a miracle. Memories that are better not to dwell on lest I fall into the deep well of sadness that threatened to drown my soul for many years after her death.

When I think of my daughter, which I still do every single day, I try to push those horrible memories to the recesses of my mind and concentrate on the gift that she truly was. She was a June baby, the youngest of three wonderful daughters, and a pure joy to my heart. Knowing that she was my last baby I tried to soak up her infancy, savoring all the moments that I could, holding her, rocking her gently, not caring if she became spoiled or not. I was no longer intimidated by the awesome responsibility of parenting so I was able to relax and simply enjoy her. She was my little sunshine, with her blonde hair and chubby cheeks, and she was a happy baby who was doted on by her older sisters and her cousins. Usually content to sit in her baby seat, her playpen, or her swing she would watch all the goings on around her, soaking it up, biding her time until she was old enough to join in the hubbub. Toddlerdom for her was a whir of activity trying to keep up with her sisters, her little fingers busily exploring every object, her curiosity insatiable. Yet she always retreated back into my arms to rock when she grew tired, casting away her worries, and mine. As a preschooler she was a twirling ballerina in pink dresses, a budding artist, a virtual sponge soaking up life and learning, her sisters teaching her how to read, write, play, sing, and act. At the end of her busy day she would climb back into my lap to rock while her sisters played nearby. She started kindergarten as a proud, intelligent little girl with the world at her fingertips. She developed a great sense of humor and enjoyed practical jokes. Somehow she managed to create an oasis of neatness in her room in the midst of the messy chaos around her. My girls were my everything and life was good.

Then life took a dramatic, sudden change when she woke up on a cold February Monday morning, dressed herself for school, then began vomiting. What I thought perhaps was a stomach virus turned out to be a brain tumor. Life as we knew it, and took for granted, was a thing of the past. I stopped working and spent my days and nights at my daughter's side in the hospital. My husband continued working then drove to the hospital almost every evening to visit and brought our other daughters for weekly visits. My younger sister, whom I can't begin to thank enough, came to stay in my home to look after my other girls. After surgery and twenty-three days in the hospital I was able to take my daughter home. Then we began the daily trips to radiation therapy for the next six weeks. Throughout all of this, my little blue-eyed angel never failed to bring a smile to those caring for her. She drew pictures for her doctors and told jokes to the nurses. While she was on a liquid diet in the hospital until her vomiting subsided she planned a donut party to celebrate the day she could have regular food again. She solicited donations from her visitors and the medical staff so she could buy toys for the sick babies in the nursery and something for her sisters. She had a way of touching the hearts of everyone she met. When she curled up in my lap to rock I would be overwhelmed with the fear that I might lose her to this battle. Sensing this, she would snuggle deeper and sing to me "Never gonna let me go, gonna rock me in this chair forever", changing the words to a popular song of the time. I tried to memorize her beautiful little face, her sweet smell, her easy smile, the feel of her tiny arms wrapped around my neck, her happy voice. With eyes closed I would breathe her in, etching her very being, her essence, into my heart and soul for safekeeping. After radiation treatments she had a reprieve from the residual tumor still lurking in her head, too entwined near her brain stem to remove totally. She was able to visit her kindergarten classmates and participate in the Spring musical, stealing the show with her determination and tenderness. We took a family trip to Disney World, I returned to work part-time, and life settled back into a more normal routine for a while. With all three girls back in school that Fall, busily involved in their respective 1st, 3rd, and 5th grade classes, I dared to hope that we would have a good year with no medical catastrophes.

As Halloween neared we began decorating and planning class parties. The girls made orange and black paper chains and looped them around the heavy beams in the open high-ceilinged living room. They carved and painted pumpkins and planned the party games. There was a buzz of excitement in the house and I was happy that my children could just be children again. But that was to be short-lived. Increased dizziness and vomiting sent my young daughter back into the hospital for another surgery in November and in-patient chemotherapy treatments, her last hope, began the day after Thanksgiving. Every three to four weeks, depending on her white counts, my child would spend Friday through Sunday afternoon with chemicals coursing through her body in the hopes that the tumor would be beaten back into remission. She was a little trooper as she retched her way through those weekends. We would rock and read books, play games, and sing silly songs. At home, when her blonde hair began to fall out in chunks, she laughed as she told me to save it for her Dad since he was starting to bald on the top of his head. Sometimes she would wake at night and crawl into our bed, where she would chatter away about the less fortunate children she had met in the hospital.... the 3 year old boy she thought we should adopt because his parents had abused him, the baby with multiple medical problems whose parents had abandoned her and had no visitors in the hospital, the other children going through their own assorted battles to survive. She had a real concern for children who went to bed hungry all over the world. Her heart was bigger than her body and I was humbled by her generosity of spirit. We managed to have a good Christmas with a huge live tree and lots of presents, thanks in part to our wonderful friends and family. School resumed after the winter break and life went on around us. Then in early March her white counts plummeted and chemotherapy had to be suspended. Seering headaches began again and the latest MRI showed an increase in the size of the tumor. We were told she had no more options left and to just try to keep her comfortable, that she would probably not survive another eight to twelve weeks. The steroids were increased to keep the pressure in her head from causing racking pain and she began to swell with Cushings. Our wonderful priest allowed her to make her first Communion in our home with family in attendance. When she sang so tenderly "On Eagles Wings" there was not a dry eye in the house. To this day I cannot hear that song without crying. Afterward, she sold lemon-meringue pie slices for a dollar for her never ending fundraising effort. The week before Easter a family friend dressed as the Easter bunny landed in a helicopter in a bare cornfield next to our house and hopped over to deliver her an Easter basket full of candy, wooden eggs and flowers. It was an afternoon of excitement and joy for all my children, a break from the reality of illness that can fill a house like smoke, seeping into every waking moment. Over the next week my girls painted tiny baskets, eggs and flowers to decorate the house for Easter, creating tiny treasures that I still pull out every year and linger over the memories they evoke.

As the tumor progressed my daughter began to lose her strength and coordination to the point that she could no longer walk. Trying to keep life moving as normally as possible, I carried her from bed to bath to sofa to table to wheelchair, up and down the stairs, and out into the yard so she would be able to participate in family activities. One morning, after suffering through the night with an especially excruciating headache, I put her into the wheelchair and took her into the kitchen to help me bake cookies. With a baking tray across her lap she rolled the peanut butter cookie dough into balls and pressed them with a fork. The morning sun was streaming through the window, lighting her face and lifting her spirits. She began to belt out the tune "Born to Be Wild". I was in awe of this little six-year old who was determined to enjoy her remaining days to the best of her ability, who understood the significance of the smallest things that most of us don't even notice. Eventually she became confined to bed so we set up a bed in the living room where she could spend her days surrounded by family and friends. Her sisters and their friends and cousins entertained her with skits and songs. They read to her, she enjoyed Babysitter's Club and Sweet Valley High, and watched movies with her. They played cards and games and whispered secrets and giggled with her. The priest and the eucharistic ministers brought communion to her every week. She had trouble swallowing so during one home visit she told our priest that Jesus tasted good with chocolate milk. I thought I would have to pick him up off the floor from laughing so hard. We bought an above ground pool in the hopes that she might be able to float around in it while giving our older girls something to do during the summer since I couldn't easily take them anywhere. But she never got to get into that pool because her condition worsened ever steadily. She asked me to take her to church one day so she could touch Jesus. I was startled because I knew she was recalling the bible stories about Jesus healing people with his touch. What do you say to a dying child with that request? I will not dwell on the end of her days because her suffering was too much. It is too painful to recall and is a dangerous place for me to go. She died at home surrounded by her family on a rainy September Sunday afternoon, Grandparents' Day, just as the sun finally peaked out of the clouds and the heavens were adorned with a spectacular double rainbow and the air was suddenly filled with butterflies fluttering near the door. My youngest child may be gone physically but she is, and has always been, here in my heart. She will never be forgotten. This is my tribute to her, written not long after she died almost twenty years ago:

Rock-a-Bye Amber

There you are
A chubby-cheeked baby so gentle and mild
A cuddler, a snuggler, a rock-a-bye child
Safe in my arms you peacefully rest
Your fingers clinched tight, your head on my breast
Sleep tiny angel, you've nothing to fear
Rock-a-bye baby your mother is here.

There you are
A golden-haired toddler, bright eyes of blue
So much to learn, so much to do
Laughing and running, tapping and twirling
Hugging and kissing, pink dresses swirling
Sweet little princess, as night closes in
My rock-a-bye child's in my lap once again.

There you are
A five-year-old school girl, determined and proud
Coloring, counting, reading aloud
Dandelion chains, lemon drop twins
Jokes and riddles, giggles and grins
Singing and skipping, whispers and rhymes
But still you enjoy our rock-a-bye time.

There you are
My proud little girl so suddenly ill
I cannot believe this is God's will
Your life has just changed in the blink of an eye
And over and over I ask myself why
There's no going back to what was before
I just want to hold you and rock you once more.

There you are
A brave little fighter struggling to live
You have so much to lose yet so much to give
With a heart full of love and a voice raised in song
A soul touched by God making right out of wrong
You brighten each day with your laugh and your smile
Curl up in my lap and we'll rock for a while.

There you are
An angel in heaven, a star in the sky
A beautiful flower, a small butterfly
Your struggle has ended but the mem'ries abound
Whenever I miss you I just look around
Deep in my soul your spirit is strong
In my heart I will rock you for you are my song.