Mother Warrior

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.

Second Family

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!

Dreaming of Italy

Eureka! I got a gift this week. While I slept, I had an “ah HA moment.”

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!