Wednesday, December 16, 2009
Tuesday, November 17, 2009
It’s a good thing that I was raised to fight. Sandwiched between two brothers, the three of us within only 2 ½ years in age, I learned early to stand my ground. As my parents divorced when I was in first grade, my brothers and I learned to survive in two different households, one in the suburbs with our mom, and each weekend on the Southwest side of Chicago with our dad. That kind of early experience will toughen a kid, and it did me. By the age of 12, I was taking trains and buses all over the city, often by myself. I knew how to navigate my way around Chicago, which means I understood that different neighborhoods required different behavior. I knew which areas I had to avoid altogether, and in which areas I had to be hyper-vigilant to guard my safety. In addition, my parents made an effort to take us everywhere, exposing us to all sorts of different experiences. I spent most weekends exploring some part of the city: the museums, performance spaces, parks and restaurants.
When it came time for college, I didn’t choose any easy path. I chose Antioch College in Ohio, which required that students move each quarter to “co-op,” that is, to complete an internship as part of their education. We’d study on campus for a quarter, leave to co-op the next quarter, and return back to Ohio for more study. Summers were spent co-oping as well. As if that weren’t enough, most of us studied abroad, as I did in London, England (where I met my fabulous husband). Although I remember feeling keenly aware and occasionally frustrated with the sometimes difficult path I had chosen, I knew it was the right one for me. I learned a tremendous amount, perhaps most importantly about mental toughness.
A friend of mine lamented the other day that as a stay-at-home mom she was “wasting” her education, and not using what she had learned. I would guess that most SAHMs struggle with this “waste” at some point. (Fortunately, my degree is in Psychology, which I have ample opportunity to use every day! Had I studied plant biology, maybe I’d feel more conflicted.) But, I see it differently. Nothing that we have done is a waste; it all forms us into who we are. Our experiences make us US.
And that brings me to the point. I am thankful for my tough upbringing because I draw on it just about every day. All moms are warriors. Mothers of kids with special needs are super-warriors. There are so many large battles – for health insurance, with school districts and sadly, for our kids’ very lives. But often the little battles are almost more difficult. Usually, no one is there to help support a mom when she’s fighting the small fight, and it’s not always clear how to proceed. The other day, I took Jukie for a haircut. I stood right next to him and offered to help the hairstylist in any way that I could. About half-way through, she stopped and announced, “well, that’s not the best haircut I’ve ever done, but it’ll do.” WHAT? It looked terrible. And Jukie had been using great behavior. All I can imagine is that this woman figured that it didn’t matter so much what his hair looked like. Sure, Jukie wouldn’t have cared. But, I certainly did. So I insisted that that hairstylist pick up her scissors, get out the clippers and give him a proper haircut JUST AS SHE WOULD FOR ANYONE ELSE. I shared this experience with the mom of a “typical” child, who remarked that she’d never have had the courage to ask the woman for a better haircut. Another example: Jukie sees a wonderful pediatric dentist. But, while the dentist was content to imagine that Jukie’s teeth were healthy since his sister’s teeth were, I had to insist that he actually examine them. I understand that the dentist didn’t want to traumatize Jukie. But, I also think that the dentist imagines that Jukie doesn’t need or deserve what other kids get. That infuriates me. Now Jukie’s every successful dental exam leaves me smiling in pride. Jukie can do it, I think to myself; give him the chance.
This same inner strength is needed every time I take Jukie out in public and encounter some overly curious person who just can’t help putting her foot in her mouth. Once at Costco a woman slowly followed me throughout the warehouse as Jukie screamed his head off, and acted in a typical Jukie fashion. I’d have thought it was my imagination except that she finally approached me and asked, “what’s WRONG with him?!” Fighting the urge to ask what was wrong with HER, I replied, “Nothing. He is Jukie.” My daughter laughed, I smiled at the woman, and we were on our way.
Last year, we took Jukie to the White House. Perhaps that seems almost ridiculously ambitious. As we were on the Metro heading to Pennsylvania Avenue, big sister Geneva asked, “so…um…is Jukie ALLOWED in the White House?” I chucked and said, “of course – EVERYone is allowed.” True, I almost ate my words when Jukie tried to run into the roped-off rooms, tear the pictures off the walls and reach for a sharpshooter’s rifle (all true), but he walked out with the White House still intact. We all high-fived each other and felt great pride in Jukie’s success (though if anyone’s White House deserved a little Jukie vandalism, George Bush’s did). Jukie deserves no less than any other child. And I will never stop fighting to make sure that he receives the same treatment the rest of us would expect.
As we’re heading into a Season of gratitude, I find myself thinking daily of everything for which I have reason to give thanks. Today, I am grateful for my tough childhood, knowing that it groomed me perfectly for my career as Mother Warrior, especially because I have a kid who demands more protection than most.
Tuesday, November 10, 2009
By the time Jukie was diagnosed at twelve months of age, we had already spent one year with our “typical” baby. He was going to grow up, go to college, get married, and probably have a family of his own. And before that, he was going to play on a soccer team, attend his big sister Geneva’s school, and experience the usual childhood that everyone takes for granted. Instead, just before his first birthday we learned that he was born with a serious and rare metabolic disorder called Smith-Lemli-Opitz Syndrome (or SLO). Wow. It was Thanksgiving weekend when we got the phone call; we were in Las Vegas to spend the holiday with family. In shock, I tucked that news into a compartment in the back of my mind. And the genetic team encouraged us to live in this compartmentalized denial. They told us that Jukie was so unusual for the syndrome that it made no sense for us to learn anything about it. And, hey, if the specialists thought I should bask in denial… who was I to argue? I could ignore devastating news if that’s what was asked of us. And it was – so I did.
After a few months, I slowly started to realize that the medical team was wrong. Jukie WAS seriously impacted by this syndrome, and I had to face it. So, I did what I do best: I started building a community and a system of support. I began regularly meeting for dinners with other moms of kids with special needs. I loved getting to know these women, and found sharing stories, hopes and fears immeasurably helpful. But something was missing – the other parents of kids with Jukie’s diagnosis. SLO is so rare that there are only a handful of (known) families touched by the syndrome in each state. The problem was that I didn’t feel that we belonged in that community. In just about every way, Jukie was unusual, for, unlike other kids with his syndrome, he was meeting his developmental milestones. I thought that the other SLO families would have a hard time accepting Jukie. And, honestly, I was afraid that contact with families whose kids weren’t doing as well might depress me.
Everything changed when I received a phonecall from Fargo, North Dakota. The call came from a woman named Gretchen who had read something I had written on the internet about Jukie. I could hear the agony in her voice. She thought that just maybe her son Markie had what Jukie had. I heard a kindred spirit and loved this woman instantly. In some odd way, I felt as if we had known each other forever. We talked for hours. Even though the Mayo clinic had told her that Markie didn’t have SLO, Gretchen and I consulted with each other as two laypeople (Mommies!) and concluded that he did. To make a long story short, he was tested again, this time positive for SLO.
And that’s when my life started turning in a new direction. Gretchen and I talked endlessly on the phone, giggled about our silly similarities, nicknamed each other “Toots,” and understood each others’ lives like no one else could. In league with my husband Andy, Toots flew out to California to surprise me and visit for a long weekend. We hugged and cried in the street when we met. It felt like meeting a long-lost sister. Family. And somewhere down our lineage, we truly are family, for Markie and Jukie both have a rare mutation for SLO that only two others in the world are known the share, the M1V. What are the chances that one M1V Toots in Fargo, ND would find another M1V Toots in California? No chance. We know that we were meant to connect.
Four years ago, I didn’t know anyone other than Jukie who had SLO. Today, I know many, and truly cannot imagine where I’d be without my SLO family. We KNOW. Nothing needs to be said, no explanations necessary in order to understand each other. I feel as though all of the kids with SLO are nieces and nephews to me, and cousins to one another. Any of us would do absolutely anything for another SLO family member. And we speak shorthand. In fact, we even intuit with one another quite a bit. I once sent an e-mail to Toots mentioning a concern that I had about Jukie. The phone rang not five minutes later – at 11:00 PM. Toots sensed my anxious mood and knew to call, and I burst into tears the moment I heard her voice.
Technology enables us to participate in each other’s lives so much more than ever before. More than anything else, what I love about Facebook is that it has deepened our SLO community’s connection. We follow the kids’ and each other’s daily lives as if we were all just down the street from one another. So when Melissa writes that Carson is finally taking the bus to school again after a long hiatus following foot surgery, we cheer him on, knowing the struggle to get there. When Blossom isn’t herself, I worry about her health AND the sanity of her mama, Lotus, who is home taking care of her. I wait for pictures of Blossom smiling again, and know when I finally see happy photos, that things are better. Although there are so many more families than I can mention here, I want to say that I LOVE YOU ALL! You mean the world to me. Thank you – for EVERYthing.
Jukie will never read these blog entries, this record of our Jukie discoveries and hopes. And although that Thanksgiving phone call eight years ago was difficult to answer, with this blog I remind myself that I so appreciate all the lessons Jukie and his little SLO cousins have taught me. Who could have predicted that such a little guy would have so widened my world!
Tuesday, November 3, 2009
We’re all so wise when we sleep. Our dreams show us all sorts of wisdom that we didn’t even know we had. Somehow, our unconscious mind holds answers that we just can’t see in our waking lives. In fact, one might say that our dreams channel our unconscious, speaking directly, trying to communicate that which we need to see or to learn. Because my dreams have been so magical and instructive, enlightening and sometimes surprising, I’ve learned to listen to this knowing inner voice.
The other night, I dreamt that my husband Andy and I had a trip to Italy planned. Italy – the intended destination in the Welcome to Holland piece! The conflict in the dream arose when we couldn’t get there. Hmmmm… couldn’t get to Italy… no surprise there. Most of the dream involved our trying desperately to make it to the airport in time for our flight. We miscalculated the time. Our transportation didn’t show. We got lost. It was one thing after the next… until a phone call. Someone explained that we could get there immediately as long as we LEFT OUR BAGGAGE behind. And so we did, and I awoke as our plane was taking off for Italy. Wow. But, what does it mean? What’s the message I’m supposed to learn?
Unlike the couple in Welcome to Holland, I wasn’t moving to Italy in the dream, just trying to vacation there. In fact, I DO escape to Italy from time. For me, I am in Italy when I am free of the stress associated with being Jukie’s mom. One thing I’ve learned over the years is that trips to Italy for parents of kids with special needs don’t just happen. Rather, we have to actively manage our lives in order to travel there. And what does that mean? Self-care – we have to learn to take care of ourselves. We so lovingly and expertly care for our children. But we need care too. When I take care of myself, I’m in Italy.
For me, this realization is one of the secret gifts from Jukie. He has taught me the importance of taking care of myself. If I didn’t, I fear I’d be swallowed up by all of his needs, completely consumed by his need for 24-hour supervision, patience and energetic mothering. If he were a “typical” kid, I’m not sure I would have understood this. But, he’s far from typical; I HAVE to reach for the lifesaver.
But what was the dream trying to tell me that I was missing? What’s the baggage that I’m supposed to leave behind? That’s easy: it’s guilt. Remember that in the dream I could not even GET to Italy with my baggage, let alone enjoy the trip. Most mothers experience some amount of “mom guilt.” I’d say that mothers of special kids take on more guilt than others. Our kids need a lot of intervention (therapies, medical visits, school accommodations) which requires huge amounts of time and Herculean patience and energy. Life so often feels overwhelmingly difficult. Naturally, we fear that we’re not doing enough to help our kids. We’re afraid that if we’re not enjoying our role on a particular day, we’re not good moms. Do you know what I think my wise little redhead would say if he could? “Get over it, Mommy.” For Jukie knows that Mommy is happier when Mommy has had some time for herself. And I know that in order to be the best mother I can be, I need to focus on myself in addition to my kids. Seems obvious, right? Then why do so few mothers carve out the time that they need? That mom guilt is a bitch.
I’ve learned to take care of myself in all sorts of fabulous and fun ways. Several times a week, I share a meal with a girlfriend. I see every good movie in the theater, and have season tickets to my favorite theatre company. I get pedicures because it feels like a wonderful small luxury. Most importantly, I give myself the gift of time. Whereas I used to feel I should do everything for/with Jukie, now I’m able to step back and let others help. Of course, I don’t completely have it down. I still feel that guilty twinge now and then. The dream surfaced to remind me that I’m not in Italy if my mind is elsewhere. It’s OK to put down that baggage and get on the plane.
Thank you, Jukie.
Now it’s time to book another flight!
Tuesday, October 27, 2009
So what was it THIS time? Jukie’s newly acquired habit is throwing glass. Yep, GLASS. He prefers to throw drinking glasses, but in a pinch he’ll choose a ceramic tea party set of his brother’s or a picture frame. After he threw a cocktail glass to the ground in a Baltimore bar last month, he and his dad were asked to move next door to the adjoining restaurant. “He didn’t mean to,” the bartender said, clearly not believing what her eyes told her. (What moving to the restaurant was supposed to accomplish, I am not sure.)
Of course, he does mean it, for he loves the effect as his chosen projectile smashes to the slate floor, spraying glass everywhere like fireworks. While this new practice sounds like a hostile act, most often Jukie is happy and filled with silly “Jukieness” prior to the sneaky deed. He waits until whoever is designated with Jukie-duty diverts her attention for just a moment and then, with lightning speed, he makes his move. He’s so fast that it’s nearly impossible to stop him.
Like Kali, the Hindu goddess of eternal energy, Jukie loves destruction. Of course, he doesn’t see it that way; he has no thought of the consequences of most of his actions, such as my collecting glass shards with the dust broom, a wet paper towel, and my fingertips. To him, the delight seems to be more in the immediate cause and effect. And the effects of these effects have been rather expensive; sometimes we joke that we need a separate homeowner’s insurance policy just for Jukie. Over the years he has:
Torn many items off the walls
Ripped the handle and deadbolt off the front door
Pulled his curtain rod out of wall (leaving a large hole)
Yanked the toilet paper holder out of wall (leaving a small hole)
Chucked many items down the stairs (including Geneva’s violin)
Whipped things at the ceiling fan to watch them hit and fly in all directions
Broken multiple lamps
Flushed God-knows-what down the toilet – necessitating its replacement
Thrown various fragile items at the ceiling
Bitten Geneva on the stomach while dancing happily with her
And, of course, the recent classic: feeding 3 boxes of wipes into his fan (see photo below)
Of course it’s often maddening to be present during Jukie’s whimsical demolition, much less the recipient of it. But, I can also understand it. Jukie has little say in where he goes and what he does. He has to rely on us to interpret his thoughts through just the few words which he communicates through PECS, or mystically via our special psychic connections with him. So often it’s hard to be Jukie. I get his need to blow off a little steam, and evidently nothing livens up the house like a little shattered glass! And really, who wouldn’t love to throw some glasses at the floor now and then. As we finish yet another kitchen cleanup, we wonder what will last longer, our remaining glassware, or this new tradition of Jukie’s, one that makes him as happy as a new groom, crushed glass underfoot, and the joyful words “Mazel Tov” hanging in the air!
Wednesday, October 21, 2009
“You should write a book.” I hear this often. Everyone seems to think there’s a book to be written about life with Jukie. His antics are practically Davis legend. Jukie’s hijinks are both so maddening and entertaining that they’ve made for many a humorous party story. It’s that “laugh or you’ll cry” thing. Only, I don’t have to look hard to find the humor. Jukie’s pretty damn funny. I mean, who else but Jukie would get into a tug-o-war with a 90-year-old with her own cane?
The chaos started early. As soon as he was up and walking, he was pulling stunts like dunking his Nana’s camera into her coffee. Soon we discovered that he’d often announce his plans with a fiendish laugh. When the room is still and Jukie giggles to himself out of context… look out! And if he’s laughing maniacally as we tuck him into bed, we know it’s going to be a long night.
When he was three years old, Jukie dragged a chair across his nursery school classroom over to the fish tank. Then he grabbed a teapot from the housekeeping area and proceeded to climb up on the chair and scoop the fish out, pouring them all over the counter. When I arrived at school to pick him up, his teacher announced, “Jukie went fishing today!” (Thank God for those fabulous teachers over the years who love and “get” Jukie!) No water source is safe. Jukie. Loves. Water. Water table set out for play? Jukie will sit in it. Water sitting in a glass on the table? Jukie will pour it all over the newspaper.
Jukie could climb before he could walk; climbing is his thing. Like a cat, he prefers to perch up high. When he was born, his droopy eyelids (known as ptosis) prevented him from seeing much of the world. It was as if he were always wearing a hat with a brim down low over his eyebrows. Climbing enabled Jukie to see the world. Jukie is resourceful and figured that out early. So we let him. We provide as many high spaces as we can for our boy to get his climbing fix. But, he had one more space in mind. A few months back, we heard a knock at our door. Who could it be at ? Of course, it was our neighbor, out walking his dog, who noticed Jukie climbing around on our roof. Our ROOF. Jukie had managed to open his window, rip off his screen, and climb out and onto the roof. There may not be an accomplishment for which Jukie feels more pride. He knew exactly what he wanted to do, and figured out a way to do it. That time he ran away, I had previously told him that we were not going to the park (as he had requested through PECS). So, he climbed the fence and took himself. The most successful explorers have always had more bravery and curiosity than sense. Jukie is our little Magellan.
Thursday, October 1, 2009
Welcome to Holland. A little over twenty years ago, a woman named Emily Perl Kingsley wrote a short essay with that title. The piece became an unofficial rallying cry for parents raising kids with special needs. In it, she likens preparing for the arrival of a new baby to planning for a fabulous trip to Italy. Then, instead of landing in Italy, the reader finds herself in Holland. Holland, obviously not the planned destination, takes some adjustment. In the end, one discovers the beauty of Holland. No, it’s not Italy. But, Kingsley argues that if we spend our lives mourning the mixed up itinerary, we will miss the beauty of the journey that we did take.
Thing is, sometimes, Holland sucks. This week, I was moved by an exchange between two women on Facebook, each raising kids with special needs. One had posted the Kingsley essay. The other woman was in a different “place.” She’s (rightfully) angry about her son’s struggles. She must fight the bureaucracies of school, county and state agencies which determine the services her son will receive. Stacks of paperwork, painful assessments, unreturned phone calls, insurance denials, and an endless stream of interactions with people who seemingly lack an “empathy gene” are all part of this journey. This mom is not experiencing a vacation anywhere. She’s living in the real world with an extremely challenging child who has multiple diagnoses and struggles. Just surviving the day is an accomplishment, sometimes the only goal.
I identified with both of these women. Of course, any parent living with a child with special needs knows that the complexity of our lives can’t be reduced to a simple Holland versus Italy idea. No one feels completely sanguine about their life in Holland. Certainly, I have days when I want to scream about how much I’m hating Holland. Still, I do think that the analogy is helpful for people on the outside, offering a different perspective. One hopes that parents living in Italy might catch a glimpse at our world, a life of beauty and magic, not in need of pity. Early on, Kingsley helped me consider that there might be brilliant surprises in this world, yet to unfold.
So, when both realities are true, how do we reconcile the two positions? Maybe you don’t. Maybe you just travel back and forth and hope that as time passes, you are able to spend more time admiring the tulips and windmills of Holland than wishing you were cruising the streets of Italy on a Vespa. Or, in my case, you buy a Vespa and ride it all over Holland!
Friday, September 18, 2009
Is it wrong to be as excited as I am? Jukie is leaving for a week tomorrow, and I can’t wait. That sounds terrible. I love that boy. I LOVE that boy. But, along with his departure goes the constant vigilance. I’ll have eight days where I can leave all of the doors in the house open. All the pictures will stay on the walls. No one will chuck Geneva’s violin down the stairs. I won’t hear water running somewhere and panic that Jukie’s flooding a room. At least this week, I won’t have to replace a toilet due to God-knows-what being flushed down it. I won’t find anyone climbing the back fence without his pants. We’ll generate ½ as much laundry.
Jukie and Andy spend a week at the National Institutes of Health and Johns Hopkins every six months. Jukie is enrolled in two SLO Syndrome studies. He will be seen by the Genetics, Speech, OT, Neuro, and Ortho departments. He’ll be studied by the autism researchers. He’ll be sedated for a spinal tap. And he’ll have an all-night EEG (during which daddy will sleep on top of him in the hospital to keep Jukie from pulling the electrodes off of his head). This morning when I told Truman that Jukie was going on a trip to see his doctors for a week, he asked, “is he scared?”
Truman’s question haunts me. I truly don’t know how Jukie processes these weeks. I know that he occasionally cries when hearing us talk about NIH. I know that he’ll sometimes scream when we’re there, especially at the beginning of the trip. What if it’s terror that he’s experiencing? It’s so hard to be Jukie. He has little say in where he goes and what he does. We ask of him so much more than we ask of ourselves. I have certainly never had even one spinal tap. How would any of us feel about spending a week attending back-to-back doctor visits, all while being unable to express our thoughts and feelings. And Jukie handles most of it with typical Jukie sweetness and love. I worry less about my boy because I know that he’s with the Best Daddy in The World. Andy will make sure that Jukie has every opportunity to run and play and get all of his Jukieness out.
And back at home with the bookend kids, I know that it’ll only take a day or two for me to start missing my little imp. First, I’ll miss his smile. Jukie’s smile does light up a room. And his laugh – it’s infectious. When Jukie laughs, everyone laughs with him. I’ll pine for his sweet kisses and early morning snuggles. I’ll even miss his sippy cups and chewy keys drying on the rack. I might even sniff his jammies; no one smells sweeter than Jukie. I can get all nostalgic over just about anything “Jukie.”
By the time he and daddy arrive at the Sacramento airport, I’ll be RUNning to my boy. I’ll look to his eyes to hear all about his trip; they’ll tell me that it was good. And his kiss will reveal how much he missed me back.