Geneva, my oldest, is a sweet and thoughtful 15 year-old who currently straddles childhood and adulthood with tremendous grace. Sometimes I step back and watch her interact with others, marveling at the mature, composed young woman I see. Other times I find myself attending to grass stains on the knees of her jeans. As she is our firstborn, she is the child with whom we tried to get everything with parenthood “right.” We protected her innocence by limiting media exposure and other worldly influences. We protected her little body by giving her only healthy food. I recall even feeling a bit wistful at the introduction of solid foods at the age of six months, for she had been exclusively breastfed until that point. I realized that I wasn’t always going to be able to control everything she ate. When she was in 2nd grade she once asked me, “Mommy, have you ever used a curse word around me? And was I adjacent to you when you did?” Of course I remember this conversation perfectly, in part because I have been repeating and laughing about it ever since, and partly because those who know me well found this question a bit surprising. My brother jokingly commented at the time, “wow – she doesn’t really know you at ALL, does she?” All of this shielding came from wanting to believe that I could protect her from the world even as I knew I could not.
Thursday, December 20, 2012
Wednesday, September 26, 2012
Monday, February 14, 2011
Life is full of forks. Yogi Berra famously said, “If you come to a fork in the road, take it.” I have always loved this quotation and use it for inspiration whenever I need to summon the courage required to take the leap of faith necessary to choose a dramatic new direction. Forks are fun. Forks are exciting.
It is life’s unexpected twists and turns that I find more difficult to navigate. Yet I have found that one of the secrets to happiness is learning to embrace these surprising twists that life brings. For years, I have had a recurring dream that I am driving on winding roads, lost and unaware of where each curve leads. Our family’s Master Teacher, Jukie, leads us down many an unchartered path as he shows us the blessings and the beauty to be found.
Our life twist this month transformed from the metaphorical to a literal reality as we listened to our 13-year-old daughter Geneva’s doctor explain that her spine had so severe a curve that she must wear a back brace 23 hours a day for the next three to five years, that is, until she finishes growing. The doctor said many encouraging words, advised her to continue living her life as close to normally as she had, although he advised against taking up any new sports. Upon hearing that Geneva is a black belt in Tae Kwon Do, he acknowledged that she might need to make some modifications in her spinning kicks, but she will find a way to keep doing what she loves. And when the doctor said that she’d be wearing the brace 23/7, he stressed that he didn’t mean 20 hours a day, or even 22 hours a day. Geneva is allowed freedom from the brace exactly one hour each day – for the rest of her childhood.
As the doctor left the office I watched Geneva take in this life-altering piece of news. She looked out the window, down at Sutter’s Fort, five stories below and remarked that she had loved the field trip she took there in 4th grade. I thought about how much she has grown and matured in the four years since that field trip. We were quiet for a short while until she said, “it’ll be OK, Mommy…at least it’s not a corset.” My remarkable girl immediately considered how the situation could be worse. And throughout the month Geneva has commented that the brace “will become normal for (her),” and “just part of (her) daily routine.”
I marvel at Geneva’s ability to feel so sanguine in her response to this curve that life threw her way (while her mommy quietly freaks out in private). But it’s different for moms, isn’t it? We mothers often feel the pain of our children’s hardships more intensely than our kids do. I’ve run a support group for new moms for all of Geneva’s 13 years, and when those new mothers express a dread of the baby’s first shots, or dropping their child off at daycare for the first time, I usually say the same thing: “it’s usually harder on the mommies than the children.” Moms seem to be hard-wired with an intense empathy for their kids. We do not like to see them hurt. We can’t stand to see them suffer. We feel their pain more than we feel our own. And my own mother tells me that the feeling continues no matter the “child’s” age.
Looking at my daughter’s twisted spine X-ray absolutely breaks my mommy heart. I am struck by memories of watching the ultrasound images of her tiny spine when I was halfway through my pregnancy – so straight, so strong. I have been thinking about the endless hours I spent patting her sweet baby back throughout her colicky infancy. And I find that I’m drawn to her back since hearing the news; knowing that I soon won’t be able to rub or scratch her back, I try to get it all in now.
Fortunately, Geneva is an exceptionally resilient and confident girl who has always felt happy to be different from everyone else, even her closest friends. In preschool, when most of the girls dressed as fairies or princesses for Halloween, Geneva insisted on dressing as a painted bunting. Having reached an age when most kids are trying desperately to be and look like one another, she still says things like, “why would I want to be just like everybody else?” I am thankful that Geneva has the inner strength required to navigate these unexpected life curves. And I have no doubt that this experience will increase her confidence and shape my girl into the amazing young woman she becomes. Once again, my children show me the way. We love you so much, Geneva – and we’ve got your BACK!
Sunday, December 5, 2010
‘Tis the season of gratitude and giving, and as always, I am loving every aspect of the winter holidays.
I was raised a Preacher’s Kid. In fact, I’m a PK two times over! (This is a subject for another entry -- trust me.) I will say that perhaps the one great part of growing up a PK was our living the magic of Christmas every year. Christmas surrounded us and sustained us for the entire month of December.
Now that I’m grown, I still start Christmas early. On Thanksgiving evening, I start playing all of the traditional carols, singing the harmonies that I learned in high school choir. I recall the many concerts my friends and I performed (as far away as Japan), and I remember that I was known for my tears on stage because I couldn’t help but cry through the performances; the music was just too beautiful.
My kids know that we (Mommy) must hang the Christmas lights on the house the day after Thanksgiving. Rain or shine – those lights go up. Driving around town in the evenings the kids “oooh” and “ahhh” from the back seat, marveling at the impressive light displays, while I bask in the feeling of connectedness that we all seem to share during the holidays. Menorahs are lit. Occasionally, we even see peace signs light some windows. Hooray! I have to fight the urge to knock on the door and give the peace-lighted people a hug. That’s just how silly I get this time of year. Fortunately my 13-year-old daughter would never let me do such a thing.
On my quest to create a magical holiday for the kids, I collect small items for Geneva and Truman’s wooden Advent calendars throughout the year. Each morning, they race downstairs to find what I have put in their little boxes while they were sleeping. (Silly bands, Matchbox cars, and Toy Story undies have been hits this year.) I may enjoy this activity even more than the kids do.
Davis, California is a wonderful place to raise children, an affirmation which never feels truer than during the first weekend of December. The Davis Art Center holds its annual holiday sale, which is guaranteed to be jam-packed with Davisites sipping hot cider while perusing the many fabulous wares made by local artisans, and catching up with all the friends they encounter. We look forward to this event all year long. Also held early in December is the annual tree-lighting parade. Families line up early outside of our natural foods co-op, gathering candles and glow sticks. Then the UC Davis Marching Band-uh leads us to the tree to be lit, with Santa sitting nearby. Walking slowly with my husband and kids, all of us in candlelight, seeing the shopkeepers on their doorstops watching us parade past their stores, I discover yet another opportunity to fight back tears. I think about the year we’ve had, and the feeling of community I feel with my family and friends in Davis. I see the wonderment in my five-year-old son Truman’s eyes, and I can’t help but cry.
And if it seems that Jukie is missing from all of the above, he is not. He walks with us (sans candle) in the parade. He chows on popcorn at the Varsity, watching the animated How the Grinch Stole Christmas! He jumps around to the music in our house. As with just about everything, Jukie kind of has his own, unique take on the holiday season. I could feel wistful that Jukie doesn’t have an Advent calendar. But he wouldn’t want one (except maybe to rip the doors off, or eat the little pine cones). But I don’t feel bad that Jukie may miss some of our experiences of Christmas because he quite happily enjoys the holidays -- probably even more than the rest of us. Honestly, I envy the simple joy Jukie finds in the Season, and I learn a lot from his quiet peaceful absorption of the events around him. While many of us are running around checking off our to-do lists and feeling overwhelmed, Jukie gives us the gift of reminding ourselves to slow down and see life through his more patient eyes. As I returned home the other night, about an hour after Jukie’s bedtime, I pulled into the driveway and looked up to find Jukie sitting in his windowsill. He was looking out from his darkened bedroom at all of our neighbors’ Christmas lights. I did not chastise him for staying up past his bedtime. Instead, I went into his room and sat with him for a while, looking with him at all of the lights. After a few minutes, he looked at me, gave me a smile and climbed into his bed. I tucked him in, kissed his cheek and whispered, “Merry Christmas, Jukie.”
Tuesday, August 24, 2010
This past Sunday I took my twelve-year-old daughter, Geneva to see her first Broadway musical: Wicked. Having heard so many rave reviews, and knowing the powerful message behind the well-known song “Defying Gravity,” I had for years wanted to take my tween daughter to see this show, an enchanting spectacle that taught us both some important lessons just as Geneva is about to start junior high school.
For those of you unfamiliar with the story, Wicked is an alternate take on the story of The Wizard of Oz. In this version, we follow the lives of Elphaba, (the play’s green protagonist, and the future Wicked Witch of the West) and Glinda (the popular Good Witch) from Elphaba’s birth, through the two women’s first meeting and initial mutual dislike, their later friendship struggles, and then their closeness and eventual rivalry over the same man, a prince named Fiyero.
Geneva and I went to San Francisco to see the show with our friends Connie and Claire, another mother/daughter pair, just as Connie and I are preparing to release our precious girls to the new world of junior high school. As we quickly approach that first day of school (tomorrow!), I imagine that Geneva is feeling a combination of excitement and uncertainty (I know I am). All summer long, we’ve been preparing for the big first day. We’ve shopped for clothes and shoes befitting a middle-schooler. I offered to purchase her a new backpack, telling her that I had heard rolling backpacks weren’t “cool” in middle school. “So what?” she said. “I like mine.” Geneva and I have mapped out and practiced the two mile bike route, organized a bike pool (safety in numbers!), and I raised her bike seat to accommodate my girl’s longer legs. She and her brothers and I have wandered the empty school grounds, peeking in classroom windows and wondering which locker will be hers. Her new lunch box hangs in the hallway pre-filled with surprise treats and a note. And throughout the summer, I have watched her blossom into a most beautiful, confident 7th grader. She still has one foot planted firmly in childhood, but more and more this summer I have seen her traveling on a journey towards the woman that she will become.
When I think about what she truly needs to thrive in her next phase of life, the tumultuous teen years, I hope that I have helped to cultivate in her a strong sense of self. I want Geneva to continue to think for herself, to feel confident in who she is, and to follow her own desires and dreams.
Certainly, Geneva has experienced her share of adversities in her short life, all of which have helped make her poised and resilient. As a kindergartner, Geneva once told me that her dangerous peanut allergy made her feel like an alien. I can imagine that having a brother like Jukie makes her feel a bit alien as well. The five of us do stand out in a crowd. In our family, we talk about feeling like we live in a different world, in a different reality from most people. The kids in our house feel much more like Elphaba than Glinda, and they’ve made their peace with that.
I found myself reflecting on this feeling of outsiderhood that all tweens and teens know, for throughout the first hour of the show, I was struck by how much Elphaba reminded me of Geneva. Elphaba is smart and thoughtful and brave, qualities exemplified best by the first act’s beautifully written final song, “Defying Gravity.” Eager throughout the first act to hear this uplifting song, I squeezed Geneva’s hand as Elphaba began to sing about wanting to follow her own heart, taking a leap of faith, and trusting herself, without concern for others’ rules or opinions :
Something has changed within me
Something is not the same
I'm through with playing by
The rules of someone else's game
Too late for second-guessing
Too late to go back to sleep
It's time to trust my instincts
Close my eyes
It's time to try defying gravity
I think I'll try defying gravity
And you can't pull me down
Geneva’s eyes grew large and misty. Goosebumps covered my arms. As we watched the singing Elphaba take to the air for the first time, Geneva and I were both transfixed by the beauty of the harmonies, the lyrics and the staging. Sitting next to my girl, and feeling such pride in her and confidence that she will continue to defy gravity as she navigates these coming challenging years, I couldn’t stop my tears.
Tuesday, August 10, 2010
Perhaps every mom wonders where the time has gone as she watches her children grow, develop, and reach and pass milestones. Many parents of kids born with SLOS were told that their children likely would not survive infancy. So for these parents, each milestone is sweeter. While Jukie’s body is uncharacteristically strong for a child with SLO, his delays are “global,” so we watch him closely. We notice, savor and celebrate each new development.
Tomorrow Jukie begins 4th grade! Maybe because 4th grade brought big changes for our daughter three years ago, I feel as though I’ve been busily preparing for this momentous transition all summer long. Last week, I took him for a back-to-school haircut. This morning, I laid out his first-day-of-school outfit (including a tee shirt that reads “heroic”). His backpack, fully stocked, sits in the entryway awaiting his chubby little arm. My little Jukester will happily run to his familiar school bus driver tomorrow morning. Jukie loves adventure. And for him, school is full of adventures. I can always tell he had a great day when he arrives home covered in dirt and paint, and full of smiles.
But there is another side to our kids’ growing up. It is bittersweet. Just as the highs feel higher with our Jukie, the worries feel more significant. To me, Jukie seems at once “big” and also still baby-like in his perfect, sweet simplicity. Mothers’ instincts are to protect their cubs; I could not feel more protective of my special baby bear. Needing round-the-clock supervision, Jukie is 100% vulnerable. He will (and has) run out in traffic. He will eat anything which appeals to him, food or otherwise. Given the opportunity (like his mom’s turned head), Jukie will wander off. Once, when I told him that we could not go to the park, he climbed our fence and ran a mile away to the park he wanted to visit. He has more determination than common sense.
My protective feelings for Jukie also can make accepting his development a bit complicated. His dad and I looked at each other today and said, “4th GRADE?!” Is Jukie really entering 4th grade? We feel partly incredulous, as Jukie seems to transcend “grade.” We recall his sister Geneva’s 4th grade experience: the curriculum (studying the State of California), the change in emphasis from learning to read to reading to learn, and the longer school day. Of course, none of the typical 4th grade curriculum has anything to do with Jukie’s school experience. Jukie walks his own path and attends to a curriculum written expressly for him. (And there are benefits, as well: we won’t have to help create a 3D model of a California Mission this year!)
On this last day of Jukie’s summer, I reflect on how far he has come in nine years. As his mommy, I see even his most subtle areas of growth. This summer, he learned how to pump his feet while swinging. His receptive language continues to develop. (I’ve learned to watch what I say unless I want Jukie to act on something he may have heard me mention.) And I’ve watched a new level of maturity develop. Jukie seems older, calmer. Even his hand feels bigger in mine.
Tomorrow as I wave to Jukie from the curb, I know that I will feel that first day of school pang of excitement mixed with nervousness for my big Jukie-boy. I am so proud. Jukie is my hero.
Thursday, July 29, 2010
And here’s what I’m facing now: it shouldn’t be so hard to get Jukie the medicine that he needs to be healthy. Born with Smith-Lemli-Opitz Syndrome, Jukie cannot effectively produce cholesterol. Cholesterol is necessary for brain function, and other essential functions in the body. Jukie needs cholesterol to live the way that a diabetic needs insulin, or a person with hypothyroidism needs Synthroid. Yet Health Net, our insurance provider, has denied him coverage for the cholesterol supplement (which must be ordered by a medical specialist and compounded into a “medical food” by a specialized pharmacy). Health Net’s second denial letter of our appeal read, “Per Health Net Medical Policy, special medical foods are considered medically necessary only when mandated by state law.” That statement actually denies the medical necessity of the cholesterol just because laws haven’t been written to protect individuals like Jukie with rare syndromes (as they have for say, people with Phenylketonuria, also known as PKU, who also need medical foods).
Our current fight for Jukie’s medical needs began eight months ago, December of 2009, when the National Institutes of Health, which had been providing Jukie’s needed cholesterol, ran low on funds and had to suspend providing all kids with SLO this drug. Sensing an epic battle looming, I immediately got to work trying to obtain it through our insurance. Sounds fairly straightforward? Since that time, I’ve repeatedly faxed, e-mailed, called and visited our pediatric office, a genetic office, a county agency, and the NIH, only to encounter one roadblock after another. And the most frustrating part is that I’m trying to navigate this process without a guidebook. I feel like I did when I was 20 years old, traveling through Germany while knowing only about ten phrases in German. The difference is that everywhere I went in Germany, kindly Germans spoke MY language and offered their help. Complete strangers helped me read maps, order food, find the right trains, and even walked with me to my destination. With this insurance battle, I encounter no one who offers much assistance; in fact, too often I am met with resistance and outright denial. And there’s certainly no guidebook.
It’s times like these that I am grateful for my SLO family. Together, we are writing our own guidebook. We are a tight bunch. Most of us know each other and maintain fairly close contact, considering our distance. On Facebook, we’ve got families in the US, UK, Ireland, Germany, South Africa, Australia and New Zealand. Everyone who had received their child’s cholesterol from the NIH found themselves in the same situation, having to look to their insurance to provide it. Some insurance companies approved the cholesterol immediately. Others, such as mine, repeatedly denied the drug.
As each medical office ran into difficulty, they all gave up. When I called to inquire as to the status of our quest, I’d hear something along the lines of “oh, I thought that other agency was going to handle it from here,” or “I couldn’t find a pharmacy willing to make it so….” I wanted to complete her sentence with “so I never called you back.” Realizing that only I, as Jukie’s mother, had a stake in the outcome, I took control and searched for a compounding pharmacy willing to look at the prescription and also to deal with the semi-complicated billing issue. And I found family-owned El Macero pharmacy, whose owner, Brad, said to me, “I will bend over backward to make this all work for your son.” Instead of accepting the inevitable difficulties involved, this pharmacist welcomed the challenge, even calling to ask me to tell him more about my son’s syndrome and how it affects him. To parents with medically challenged kids, people like this pharmacist seem like angels who swoop down and rescue us when we need it most. Just when I felt hopeless, this man stepped in and recognized that Jukie and I needed help. And that’s it! We mothers and fathers can feel so alone and invisible while trying so hard to navigate these challenges. For eight months, I felt like screaming, “doesn’t anyone want to help me and my son? Doesn’t anyone see our struggle?” I’m still crossing my fingers that the billing piece works out. But at least now I have someone on our side. And do you know what he said as I thanked him for all of his help and caring? He said, “you’re very welcome. It truly shouldn’t be this hard.”