For My Daughter, Age 8

My daughter celebrated her 8th birthday over two months ago and this one felt just a bit harder for me than the one before. At age 7, she still had seemed that shy, quiet child who wanted me to walk her to her classroom each morning and follow behind me like a shadow everywhere else. The transformation between age 7 and age 8 was something I had not fully been prepared for. It seems that overnight she has discovered the joyous fun in reading graphic novels, the scientific discoveries of slime and geodes and the finer points of picking just the right outfit and tinted lip balm. She is still shy with adults, but she is loud everywhere else. She sings and dances with abandon and often performs with a silly, wanton joy.  Yet, she becomes embarrassed to the point of tears if she hears me telling anyone, anything about her. It's as if she is our secret firefly, you can catch her sparking brightly but briefly, if you know where to look.

Age 8 has brought eye rolling and a new streak of defiance to our negotiations. She argues, I believe, just for the sport of it. She pans refusal for almost everything I suggest she try. She doesn't like what I pick for her to wear and hotly contests any adjustments I insist she make to outfits she assembles. She can be aggressively stubborn. At age 8, she has tapped into a new sense of drama. A recent visit to the doctor for her annual flu shot treated her father and I to an almost Oscar-worthy performance where we might have assumed she was about to have her arm amputated without anesthesia. Each injury, no matter how slight, now seems to be accompanied by copious tears and irrational claims that, "you don't care when I get hurt."

Despite the challenges, age 8 has given us the opportunity to see her reach out and seize opportunities to do things she really enjoys. She has found her voice, found new levels of confidence. Without much prodding, she will play piano now for friends and family. She is clearly proud of her burgeoning skills and I'm happy to see that music is still so much part of what she loves about her world. She is one of the few girls in her ninja warrior class, a fact that does not seem to make her self-conscious in anyway. I can see sparks of a competitive nature in her. She likes to be the last one to release her plank during warm up, likes to know her time is that much faster each run at the obstacle course. She makes it up the warped wall in one take, but still freezes at the top. She says its the drop that scares her. She describes the feeling of gravity acting on her limbs as an unwelcome and uncomfortable intrusion, something she feels she can not control. We watch her, perched on the edge of the wall, her small frame tense with the desire to jump, only to back herself down. I ache for her and for myself, not knowing how much to push her past her block.

My daughter has always managed to forge wonderful friendships. One of the best things about this age is discovering that she has continued to grow into a loving and loyal friend. She has never forgotten those special friends from preschool and she reserves a portion of each party invite list for those friends she may not see every day, but still counts as part of her little circle. Her delight at seeing their faces, at sharing experiences with them, warms my heart beyond measure. She astounds me with her kindness, her limitless expressions of love toward her besties at school. She adores her friends and her book bag bleeds a regular stream of crayola-stained testimonials that prove they adore her back. Age 8 brought the very first friend sleep over, a play date that picked up Friday after school with her very best friend and ran straight through the next mid-morning. They stayed up far too late and got up way to early but the house was filled with their playful giggles and running feet. After they had finally dropped off to sleep I crept into her room to check on them and found them, heads pressed together, faces soft and serene in sleep. Physically they are polar opposites and they looked  like a sweet composition in cinnamon and sugar. It made me think of my first sleepover with my bestie, whom I still treasure to this day and I felt happy for these two the special bond they have forged.

Age 8 has given me such bittersweet moments. I have been so proud of her, surprised by her sudden fierceness, delighted by her antics and frustrated to tears by some of her habits. I have discovered pools of her slime in the rugs, her hair and on the dogs. I have lost hours of my life collecting discarded clothes from her floor and rehanging them in her closet. I have caught a glimpse of her applying lip gloss in her room, her face a mask of concentration. I saw the little lady in her suddenly gaining on the child - and it wrecked me for hours. I am not ready for so much that I see coming but I am so excited to see her becoming her own beautiful all the same.

One day this past month, I had a rare day off with her. We went to the mall to do some shopping together. At some point, she surprisingly slipped her hand in mine and we walked through the mall hand in hand. I was very conscious of that moment, it felt crystalline and rare. I had to fight down the lump in my throat. I was filled with gratitude that at least at age 8, my daughter still wanted to hold my hand in public. Before that moment, I don't think I had been so sure. As I listened to her happy chatter, I felt blessed in the knowledge that at that moment, there wasn't anyone else she wanted to be with more than me.
At age 8, she is my fierce little firefly, my bright spark of light in my wide night sky.

Image Courtesy of Firefly Bookstore

A Butterfly in Spring and Gillette's Ode to Holmes

Image courtesy of Pinterest

 "Blog City ~ Every Blogger's Paradise"
Day 1535 March 1, 2018
Prompt: "The butterfly counts not months but moments and has time enough." Rabindranath Tagore Write about butterflies and spring.

Yesterday afternoon brought sunshine and the trill of spring birds. Today, in my fickle part of the world, these balmy temps will give way to a Nor'easter bringing rain and snow. As New Englanders, we have all grown accustomed to a cautious optimism when it comes to the arrival of Spring. I found myself believing for a few short hours, that Winter had turned the corner. I half expected to see the fresh green points of daffodils breaking through in the yard and even checked for buds on my early blooming lilac. The latest news report sobered me quickly. The weather man somberly presenting a map in which my town sat squarely in the wide blue swath indicating 3-6 inches of snow. This has little to do with the Tagore's quote of course...but butterflies always bring Spring to mind and here, we are all very preoccupied with that particular season.

I think the sentiment behind Tagore's words are that the life of the butterfly might be brief but it is full. After all, how many creatures get to experience a transformation that allows them to life two lives to fruition, both terrestrial and aerial? A caterpillar toils about for the first of its life, grounded and plodding. Then, then brilliant design of its life cycle allows it to emerge, reborn with wings. The butterfly's world is suddenly all air currents and fragrant blooms. It is granted a new life, one that is fleeting but free. Last year my daughter and I watched a painted lady butterfly float slowly to the ground. My daughter gently picked it up, marveling that it has just died there in our yard, almost the moment it's body made contact with the earth again. I'm sure the butterfly lives every moment silhouetted against the sky, grateful for its beautiful and brief existence.

Image from Wikipedia

"Blogging Circle of Friends"
DAY 1932 March 1, 2018
On this day 1890 1st US edition of Sherlock Holmes (Study in Scarlet) was published. How do you think like Sherlock Holmes?

I would have to admit that I have much more in common with Carroll's Alice than Doyle's Sherlock Holmes. The fictional detective was crafted with an almost unnatural intelligence and intuition. He also used morphine and cocaine, to the extent that he has been repeated portrayed as an drug addict. The traits certainly make him an interesting, if unrelatable character for me.

Oddly enough, my state has a strange connection to Sherlock Holmes. William Gillette was an actor who realized considerable fame for playing Sherlock Holmes on the stage and in early silent films. In 1914, Gillette began construction on what would later become Gillette's Castle along the Connecticut River. It is an odd structure that I've always thought resembles a sand castle melting under an incoming tide. The grounds are impressive however with trails that meander through the woods and often break into clearings with amazing views of the river valley. It is a state park now and you can tour the castle and its trails almost year round. There are references to Sherlock Holmes all around the property, including the sign out front that bears a typical likeness to the pipe-smoking investigator.

Image from Wikipedia

Those Angry Days of Living with HS

There is a fury inside of me today that I am trying to quell with seemingly copious amounts of Motrin and coffee.  Today it feels like my pain is more than just topical in nature.  There is hot anger running through me and this anger feels like a new, unwelcomed component of dealing with my HS.  I’m beyond irritable. I am unapologetically short-tempered and intolerant. 

Since my diagnosis in my early thirties, I have lived by the rules of prevention and pain management. I have gathered what remedies and suggestions I could from the forums and tried not to be frustrated by the lack of real medical support. My dermatologist called it an “orphan disease”, abandoned largely by the medical profession. Until you are dealing with an agonizing flare up, the true nature of that term may allude you. What it really means is that there is nothing out there to treat you, no cream or ointment, not oral medication to drive the painful boils back down once they erupt. There is nothing you can take medically to control the HS, to keep it locked in remission. There is no cure. You just have to deal…deal with the pain and with the knowledge that it can take you down at any time, triggered by stress, by weight gain or just by the whims of a stalking disease that resides in your genes.  

Most days I avoid this tide of anger and frustration by counting my blessings.  I believe that I am one of the lucky ones.  My HS outbreaks so far have been limited to my upper body and with the exception of the one in my neck, and my resulting scars are largely invisible to others. This is not the case with many people. HS can be severely disfiguring.  The boils that erupt, those cysts that become infected and eventually rupture cause bad scarring.  I have seen images of young men and women with puckered tracks of scarlet scar tissue running down both sides of their groin.  It is this most intimate invasion of the disease that leads to isolation and depression for so many. 

Most days, I remember those images and the stories of the people in the forums, and I feel ashamed of the anger. Today though, I’m feeling furious with my body, with its inexplicable ability to manufacture these horrible, ugly nodules that burn and throb and swell to an impossible size.  Today I want to scream. Instead, I stock up on the large size band aids and take the antibiotics that will only speed me closer to the inevitable rupture of my skin and the formation of another scar.  The antibiotics don’t make me feel better, in fact, the doxycycline tears up my stomach but there is still that small chance that it will stop the inflammation before it progresses to that awful end stage.  There is a chance, according to my epically hopeful primary care doctor, that it may attack the inflammation and help the cysts drain and alleviate before rupture – saving me from more scarring and the general unpleasantness that comes with those ruptures.  If she can hope, I suppose I can try to be hopeful as well. Hopeful and less angry...

With all of the truths I have come to understand about HS, I am most thankful for the diagnosis. Being able to give a name to the affliction I suffered from for so long in the dark, was honestly the best thing.  With diagnosis came the opportunity to explore the research, the remedies and treatments that were available to me. Being diagnosed suddenly gave me the important reasons for this very unreasonable disease. If you think you or someone you know might be suffering from HS, this is the best, most informative and straight forward site I have come across:

 https://www.nobsabouths.com/what-is-hidradenitis-suppurativa

If you suspect you may be suffering from HS, see a doctor, start with getting diagnosed. Find what works for you, because it’s different for everyone. Give yourself those angry, furious days…but always go back to hope. 

A Bottle by the Fire and a Nod to Lessons Learned.

This week I passed the 14 year mark as a member of writing.com. The email hit my inbox along with the expected reminders to update my blog...something I have been hard pressed to do much over the last two months. I could blame it on the lack of time and discipline, the usual suspects, but the truth is my mind feels cloudy - it feels difficult for me to focus. I feel limited with being able to express myself lately, and seem to oscillate between a kind of manic contentment and a crouching darkness that makes me feel heavy and hopeless at times. I know that not writing, not attempting to write, is depriving myself of something key and I feel the absence of it acutely at times. I need to press myself into those familiar spaces again, force the words. My heart needs the outlet, my soul needs the confessional, my life needs the anchor.

"Blog City ~ Every Blogger's Paradise"
DAY 1519 Prompt: February 13, 2018
Prompt: Do you think people can change as to how they view love as years go by? And how do you think they perceive love and romance in different stages of their lives?

We have all seen them, that sweet elderly couple walking hand in hand or sitting together on a park bench. They are the standard of measurement for a lifetime of love. I marvel at couples who celebrate those milestone anniversaries; 50,60, 70 years together. Ask any one of them and I'm sure they've stories to tell, stories that might sound like fables where the messages are about patience and forgiveness. To make a life with someone that spans decades, there must be forgiveness and acceptance as much as love and devotion.

The rush of falling in love is a temporary condition. The euphoria of a budding, passionate romance always gives way to life eventually. Couples marry, have children...the pace of life changes and it gets harder to manage the expectations of another amid the beautiful mess of raising a family. The definition of romance changes over time I think. It is forced to become something else...trails of rose petals and long Sunday morning trysts yield to more practical measures like being able to take a hot bath why your spouse keeps the kids from banging on the bathroom door looking for snacks. My husband is fond of saying, "that's just life" when I complain about lack of "us time" or when we go consecutive nights with a child between us in bed and dogs layered at our feet. We are not the same individuals who once kissed in a rainstorm or spent intimate weekends in romantic inns. Sometimes though, I get our daughter to bed early and go downstairs to find the fire still roaring and the room lit by glowing candles. Love and romance move through time with us, they morph and change as we manage life the best we can I think. Sometimes sharing a waning winter evening and a bottle of Cabernet with the one we love is all the romance we need.

"Blogging Circle of Friends "
DAY 1916 February 13, 2018
Write about three people from whom you've learned the most.

I've been fortunate to have had people in my life who have taught me many things, lessons that were good and bad. It is a difficult question because overwhelmingly I have learned the most about myself from people who have hurt and disappointed me the most in life. I have learned from past lovers that some men are forever damaged in ways that can not be fixed, damage that can coat you like a toxin. No one comes to save you, you have to save yourself. You have to choose yourself. In those terrible moments, you can discover a faith you didn't know you had and a strength you did not know you possessed. I have learned the most about myself from being forced into corners, from the hollow sound of my heels in hospital corridors and the fear of knowing a man who claims to love you can still put you in the ground.

I am blessed to know a different man now, a husband that cherishes and champions me. He is a man who makes promises and keeps them, a man who magnifies all those special, little moments in life that once eluded me. He has taught me that men can be passionate without all the darkness and the violence. Through him, I have learned that men can live and love without the chains of addiction and rage binding them to their demons. Most of all, my husband has taught me that hope lives inside even the very wounded and that with consistency, with commitment and the smallest, simplest loving gestures, it can grow and become the foundation of a life worth living.

Age 3 in Retrospect

Occasionally I make it a habit to clear out my writing folder on my desktop, discarding pieces or re-organizing them into my writing portfolio if they have some legs. Sometimes I find a piece or two that never made it to a formal blog – these are usually rambling, micro observations on my life at a point in time.  Today I found this one…obviously written at the height of epic year long struggle with my then three year old Jaden, and it gave me the opportunity to look back.  This was the year I decided, simultaneously, that my daughter was a force of nature and that I was destined to be a one-child mommy.  By far, age 3 was the roughest year to date – but one that, even dominated by struggles and challenges, provided me those amazing moments of serenity, grace and beauty that come with raising a child. I remain, humbled and grateful by the amazing blessing that is my daughter.   

Most mornings with my three year old are dominated by defiant stances in pink polka-dotted tights, barely eaten breakfasts and dramatic screams during hair-combing and styling sessions.  Most mornings my little girl wakes with only one true desire…to challenge me at every turn. I battle over clothes, shoes, what can and can’t accompany her to school.  She makes demands and launches sabotage attacks to delay our departure while I anxiously watch the clock.  Somehow we manage to stubble out the door, both of us a little worse for wear than we should be.  Most mornings.

Oh… but then there comes that rare, blue moon of a morning where every moment seems as saturated by joy and mirth as any before.  Jaden wakes up with smiles and kisses.  She makes her own way to the potty. She does not throw open my shower door but just waves at me through the glass, a blurry, happy vision in pink princess pajamas.  She helps me feed the dogs. She cleans up her books and toys, before I trip over them.  She gladly accepts whatever outfit I have and dresses quickly instead of diving back beneath the covers to avoid me. She leans lovingly against me as I slip on her shoes. She even takes her drink cup downstairs and puts it in the sink for me.  I make breakfast and she eats it.  We sit side by side, munching and talking contentedly.  

Those Seismic Shifts and the Theraputic Properties of Electronic Ink

This quote, from one of my favorite writers, brings me particular comfort today - a day when I feel out of sorts, like a ship that has suddenly broke from its mooring in an increasingly agitated sea.

I have always found my balance through writing. It has brought me closure and peace more readily than any hour spent on a therapist couch. Sometimes I feel like I have a nest of bees inside, an angry buzzing colony of secrets and the only thing that brings me serenity is to write. I have often used electronic ink to battle back my anxiety and plaguing doubts. There are things however, that I can not put to paper and because I can not, I carry them with me always. Grief, guilt, anger, shame...these things all bare a particular weight in one's heart. Still, I do the best I can, even on those days when I feel the shifting seismic plates of fate beneath my feet.