Archive for the ‘Motherhood’ Category

Let the Storm Rage On

Frozen-150x150My 2-year-old does not ask to listen to the Frozen soundtrack in the car; much to my delight, she asks to SING FROZEN! A former musical theater actor, I have a particular love for singing in the car. I first bonded with a most precious friend singing Cabbage Patch Kids songs in the car on the way home from college…yes, college.  It makes me incredibly happy singing along with my mini-Idina in the back seat. Like most of America, my daughter’s favorite song is Let It Go, which she sings with absolute abandon. To my surprise, this song continues make me cry every damn time we play it. Something about the idea of

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway.

has me by the heart-strings. It speaks to my life with chronic pain in such a clear, defiant way. A sort of screw-you to the day-to-day struggle to remain normal, to ignore the rejection, to be tougher than this disease I do not control. I know I’m not the only one who has found myself in the lyrics of this anthem. Sometimes you just want to scream

And I’ll rise like the break of dawn
Let it go, let it go
That perfect girl is gone.

Ultimately it is the idea of being free that makes it all so right. I never, not for the briefest of moments, feel free of this pain. So if you see me and my kiddos in my car belting with everything we’ve got, please understand: I am standing on my ice castle, hair flying behind me, absolutely free. Can’t keep it in, heaven knows I’ve tried.

 

This I Believe

WebofLifeIn my religion, each member has a different belief system based on their experiences. Every year my Unitarian church asks 4 people to present their own sermon of sorts. We are given 15 minutes to share what we most believe at this time in our lives and how we got there. Often times it is an opportunity to share what is unique about your path. I was given the honor of sharing my This I Believe a couple of months ago and wanted to share it with you all as well:

I have written this presentation at least 5 times, each time it was completely different. It is amazing how many things you can really BELIEVE a matter of 6 weeks. If I had stuck with earlier drafts, you would have heard about my Catholic upbringing, or my passion for the arts and theater, or 10 minutes on how amazing my little girls are. Eventually I realized that I have had three events in my life that have shaped what I believe more than any others.

The first was my baptism, a sprinkling of water that tied me forever to my Catholic roots; to my grandmother who only voted democratic once — for JFK — because the trinity trumps politics; it ties me to the midwest and a family that goes back 6 generations in Iowa alone. This baptism would one day allowed me to be an “altar kid”, carrying a solid wood cross twice my size down the aisle, almost beheading the entire 3rd row before my dad caught the swaying cross-turned-weapon, saving the priest who was dodging just behind me.

The second event was actually two separate moments in time, those two moments when my entire world split open and sprung my most precious gifts, my girls, who shook my life back down to its roots with the purest love I have ever experienced.

The third event was less so an event, it was more like an unexpected redirection. Now that I think about it, it reminds me of the time I was learning to jump horses at camp. My horse decided she was done working, one jump before I was. We ran at the gate from across the ring, I leaned forward, ready to soar over the fence with power and grace, and the horse stopped dead in her tracks. Sending me flying over the gate without her, thrashing as I hit the dirt.

Eight years ago, 10 months after the birth of my first daughter and about 4 months after my husband Bryan and I signed the book here at WBUUC (after hearing about it at a Peter Mayer concert), a searing ribcage pain sent me into my GPs office begging for relief. It took over a year of undesirable tests and failed diagnosis to realize that this was not just an irritating bump in my path, I had again been thrown from the horse and I had no idea how to get back up.

I was born Catholic and I fell in love with a Jew. When Bryan and I came to the doors of WBUUC we were like many, first baby in our arms and looking for something my original faith had not offered. I wanted my child to know the same kind of community I had, but so much more. And, I wanted her to understand that there was something bigger than herself out there, whatever that would be. The idea of spending a moment of peace here each week, looking out that window, listening to this music and pondering what I believed seemed such an absolute indulgence to a crazed working mom still nursing her first-born. Before the pain I had the luxury of believing, or nor believing anything I chose. When the pain moved in, I needed my beliefs to stand the test of adversity.

When I first heard the term web of life it seemed a sweet, if a little hippie-dippy, concept reminding me to care for the world around me, to follow the golden rule. My experience of chronic pain has given me a deeper understanding of the life and death nature of this principle. In the movies, when someone becomes seriously ill they take to their beds, absorbing the care of family and friends until they come out triumphantly on the other side. In the world of a lower-middle-class mom, you have an invasive medical test and then hurry back to work before your lunch break is over. I dream of a day in bed.

I am diagnosed with a disease called Sphincter of Oddi, a rare and incurable disorder effecting the valves in my pancreas. It causes a variety of digestive fun along with 24-7 ribcage pain, it is similar to gall stone pain. To put that into perspective, every time I’ve stood up here to read, or in the Religious Education classroom to teach, or waited in line for morning coffee, I have been in pain. I am in pain right now. I control the intensity to a certain level with medications delivered through an implanted Medtronic pain pump.

The experience of chronic illness is not the stuff of movies. At its worst, chronic illness makes you feel as though you have been kicked off the web of life, rendering your own existence unrecognizable. The medical system is not the God-like place we hope it will be, when Doctors run out of solutions they tend to push you away, or worse, make you feel that your pain is only in your head somewhere. Employers, who once appreciated your investment, start to see your sick days as a hit to their bottom line. And after 8 years, even the most dedicated friends start to fatigue. It is hard to blame them, I went from a person who spent her time chatting about Gossip Girl to someone preoccupied with her fight for insurance coverage. I’ve also witnessed something I’d never imagined would happen, loved ones finding fault with my choice of treatment and using that as a justification to completely ignore my disease. Ultimately, I think it is just to hard for them to come to terms with the fact that I will have this pain for the rest of my life and they cannot do a thing about it. But, it is the most isolating kind of coping mechanism I’ve experienced. I have looped the steps of grief for each of these relationships many times, mourning a loss of faith and trust that I had in them.

At them same time I have become someone who absolutely needs people, something that feels very out of fashion in our up-by-the-boot-straps culture. I’ve had Doctors listen to me and treat me in a humane and loving way. My current employer trusted me when I said I could leap into a new career, chronic pain and all. I have friends and family who call every time I go through another test or procedure, sending cards with words of encouragement — even 8 years later. They have supported me in every way possible, including the roof over my head.

Many marriages falter under the weight of chronic illness, when the in sickness and in health part becomes very real. I married a man who meant what he said. Bryan has been my constant advocate and soft place to fall. And when my girls come flying into the bedroom in the morning, urging my grumpy butt up-and-at’em, I am grateful for their inspiration. These are the people who have grasped my wrist and held me on the web of life when it felt like no one wanted me. When if felt like life itself had betrayed me.

People are always trying to find a silver lining in all of my pain. I think they want to make something they cannot imagine into something they can feel OK about. I’ve lived with it long enough to be OK with that fact that it just plain sucks. The thing that makes it OK , even more than meditation or prayer, is the active love of family and friends. I believe more than ever that we all belong on this interdependent web of all existence: healthy or sick, rich or poor, working or jobless, thin or fat. I think we all like that idea, but only if the beings on the web meet our specifications, meet our criteria for deserving support and love. I hope that this experience has and will continue to teach me to love without conditions and to understand that we all have something important to share.

I can assure you, from the position of someone who knows: a day, hour or even minute spent stoking the star-dust in someone’s pained soul is the holiest of work.

 

Squeaky monkeys and Light

MonkeyMy husband and I rarely have enough cash to buy each other traditional Christmas gifts, if he’s lucky I manage to put a bottle of his favorite scotch in his stocking. However, we do make sure our girls are able to get some little things for each of us. This year we decided to keep it interesting by asking our 2 year-old what she wanted to get us, promising to buy exactly what she said. So I asked her what she wanted to get her daddy and she said, without hesitation, that she wanted to get her dad A TOY! And then she added, with absolute glee, “a squeaky toy!” If you’ve experienced my husband’s relationship with his girls you would know that this fits perfectly into their love of goofy, noisy, silly stuff. If it burps, farts or makes a face they absolutely lose their minds. He calls our youngest his Monkey Boo, so we found a squeaky monkey in the dog toy section at Target and wrapped it up. It was perfection.

On Christmas morning I unwrapped a beautiful candle set from my little one. My husband tells me that when he asked her what she wanted to give me she replied, again without hesitation, Light. My two-year-old gave me Light. If only she understood how profoundly she has brightened and lightened my life.

We celebrate solstice at my Universalist Unitarian church, which often includes a meditation on absorbing the peaceful dark, actively waiting for the light. For me, it beautifully compliments the quiet manger scene many of us contemplate at Christmas. I feel like it mirrors my struggle with chronic pain just as perfectly. I am trying every day to make peace with the dark, while finding the light wherever I can.

So many of us create hope and light for our friends, family, community, and even ourselves, during this winter time. However, it is rarely met with choirs of angels singing praises. This year we should be that choir of angels for each other. Let’s be loud in our support, gratitude and love.

I’m going to regress a bit into my 2-year-old brain, the one that recognizes what is funny, what is beautiful and what is important, without hesitation. I hope you all got a bit of light for the new year, it is a gift to be treasured.

 

Hitched for the Holidays

This week, I am the leading lady in a Lifetime movie plot – it would be a Hallmark Hall of Fame, but their charactersfala are a little too naive for this storyline.

Our first daughter was born just before Christmas; during those hazy midnight nursing sessions, my husband and I discovered Fa-la-la-al-Lifetime.  It beats infomercials and Public Television Membership Week hands down.  These movies play 24/7 throughout the 6 weeks before Christmas and we have seen almost every one.  There are 3 plot lines and the best ones feature actors from my teenage years (I never miss anything starring the kids from 90210).

One of my favorite story lines, and the one I am playing in this year, is the one where a beautiful single person (pretending to be undesirable) is tired of hearing their mom complain about their lack of spouse and they hire a companion for the family holiday festivities.  I don’t want to spoil the end for you, so don’t’ read on if you prefer the suspense. They fall in love with their partner-for-hire and kiss under the mistletoe.

So, as you might have guessed, my version is a little different: my blind date for the holidays is a new miracle medication meant to sooth an ailing digestive system (I already have a handsome man friend). Scorned in the past, I was not hopeful. However, the last few good days have me skipping towards the mistletoe.  On my new pancreatic enzymes, I have been eating without regret for the first time in 20 years. Cue make-over montage, I feel like dancing!

These movies (and med trials) usually have a bit of drama after that first longing-look, so I am waiting for the other Louboutin to drop. But I am hopeful, and isn’t that what this cheesy season is all about?

I hope Santa brings you and yours everything you’ve been wishing for, including a made-for-TV happily ever after.

 

My girls are magic

My girls are magic.

I have proof by way of illustration: My pain has decided to double in the last week for no apparent reason (really must figure out who has my voodoo doll).  I came home from work a grumpy mess, extremely self-loathing and unhappy that my husband had to leave for work instantaneously.

Seeing as I’d taken all of the pain pills allowed, I self-medicated with a piece of leftover pumpkin pie – which my sweetly smiling 15-month-old ate most of, who can resist those big blues? She then insisted I sit on the floor with her to play Little People, while her big sis did her practice-spelling test at the kitchen table.  I grabbed a couple of pillows and hit the carpet.  She proceeded to pull all of the plastic animals out of the toy barn and pile them on top of me, while making the appropriate animal sounds.  Then she tried to shove every one of them in my mouth or up my nose. We were both giggling and it broke into an every-girl-for-herself tickle-slash-kiss-every-part-of-her-face fight. For 15 minutes she did what my Doctors cannot, what my meds cannot, what I cannot do myself; she made my pain disappear.

Magic.

The Mitten Monster and other back-to-school magic

 

I was not at home to snap pictures of my daughter heading-off for her first day of first grade today. I was running around taking pictures of your kids. Well, maybe not yours specifically, but the greater you. I was playing photographer for the school district where I work, looking for that perfect Facebook shot. And I have to say, your kids were lookin’ good today, in their shiny new shoes (with room to grow) and their stiff backpacks – ready for a year’s worth of library books. They were very willing to show-off their toothless grins, big smiles paired with that tiny hint of anxiety. I tried to capture the squeals as older kids spotted their friends, taller since they hugged fair-well in the spring. I was feeling that ache that all moms feel when they can’t be there to cheer their kiddos on.

To distract myself, and to keep the weeping at bay, I considered the fun in the fact that I was taking pictures at the school where I started Kindergarten myself, years ago. It was a brand new school and my class was the first to go entirely though it. I don’t remember much from that first year, mostly visiting the nurse (I was one of those dreaded strep carriers) playing house at free time (wish I still loved to iron the way I did then) and losing every mitten I ever wore (to the mitten monster living in our cubby, of course). I do have the vaguest of memories of the girl who would one day become my oldest friend. I wanted to be her friend because I loved her dress, which might be the reason I chose most of my friends. This particular dress reminded me of Laura Ingalls, which meant it was awesome. I was all the more impressed to hear that her mom made it. I had no idea you could make a dress.

My memory of those first days may be a little foggy, but I do know that I managed to make a friend for a lifetime. A relationship which is, I realize now as an adult, as magical as the mitten monster himself. Although I couldn’t be there to hold my daughter’s hand as she walked through that big doorway today, I am wishing her every happiness school can bring. Especially, a friendship to hold her up and carry her through those wondrous childhood days, and beyond.

 

Muzak on a Monday

 

Ear-worm ahead, consider yourself warned.

I’m walking out the door of our local coffee shop this Monday morning, gripping my mug like a life-preserver, and I hear this: I won’t be made useless, I won’t be idle with dispair.  Jewel on the freaking Muzak made me cry. In my defense, I hadn’t really heard the song since my Lilith Fair days, a carefree time in which I had no real idea what dispair might be.

A long weekend is the perfect balm to the pain my work causes: four desk-free days, the absence of the 6 am alarm and the distraction that two little girls bring by the bucket load. This weekend we celebrated my daughter’s first birthday with the people we love (she found the cake terrifying, but adored ripping wrapping paper), we hit the State Fair for the cheese curds and horse barn, and we took Lucy, the American Girl doll, in for a hair fix ($10 well spent, the curly-haired ones should NOT be brushed by a 6-year-old). It was so easy to leap out of bed, who wants to be idle when there is cake to be eaten and there are cheeks to be kissed. I admittedly spend an afternoon watching a brainless Girls Scout movie on the Hallmark channel, nursing an over-done body, but that is what weekends are for.

Mondays after a long weekend are the hardest for me. My pain intensifies and you are likely to find me batting away the tears in front of the coffee shop. I wonder if I don’t close down a bit, shut-off some of the sensitive parts of my brain during the week, just to get through. Then I get a few awake days in a row and everything in me fights going under again. It is such a polar way to live. On one hand, not being made useless means I get up and go to work to support my family with home, groceries and health insurance. On the other, I find myself fighting the dispair my work week brings. I feel like I am at a cross-roads with this because, unfortunately for those of us with chronic illness, this just might be my ever-after.

I haven’t conjured a work-around yet, but I am not satisfied with living on the weekend.

 

The Littlest Rabbit

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