Like a Parent

In September of 2008, I came to work with a secret that few knew.  I had a tiny baby growing inside of me.  He was about 11 weeks old at the time.  I remember feeling a sense of excitement, fear, and sheer happiness whenever I thought about it.

My husband and I were truly overjoyed to know that come March, we would have a bundle of joy to cuddle and cherish of our own.  As I began my fifth year teaching, I felt an instant bond with my class and the parents that were entrusting their children to me.  While I had always tried to think “like a parent,” now I was going to be one.  It was much easier to put myself in the actual shoes of a parent that fall.

I was fortunate to have an incredible group of students that year, and the excitement did not stop with my budding belly.  The Philadelphia Phillies made it to the playoffs, and I had the most dedicated crew of Philadelphia sports families that year, too.  We were all caught up in the playoffs and then the World Series.

The final game of the series happened to coincide with my 20 week ultrasound.  My husband was hoping we could catch the entire game in hopes that the Phillies would bring home the pennant.  At 8:38 P.M., we learned that a little boy was healthy and happy growing inside of me, bigger and stronger every day.  It seemed fitting to learn that our baby was a boy on the night that the Phillies reclaimed the title after almost three decades of a drought.

Then, on the day of the champions’ parade, I connected with a person that would mean so much to me in 2009 and beyond.  She was the mother of a wonderful young man in my class that year and we had an instant connection.  Later on in the year, we made arrangements for her to watch my son when I started working again.  I was scared to say that anyone except me would care for my baby, but I felt secure and safe knowing that he would be in her care.

She was the second mother to my son that I had always hoped I would find and all was well.  We made it though birthdays, the loss of pets and the exciting news that I would have a new little lady to add to the collection of children in January of 2011.  Her family became a part of my family and I knew that my children were a true extension of her family.  

I was lucky enough to teach her other two remarkable children and life was still good.   

Then Kelsey was hospitalized for 16 days.  Life changed in a way that I could not fully comprehend until very recently, and the weight of the world no longer seemed a shared responsibility.  I closed off many emotions and connections and soon, I shut out the woman who was the second mother to both of my children.

Kelsey’s diagnosis came after this second mother had a year full of uncertainty and sadness herself.  We both likely needed each other more than we knew, but life pulled us apart.  

It had been almost two years before she and I reconnected, and I was grateful on that day in a way that words can not express.  Keeping Kelsey’s battle a struggle from most of the world meant that it was also a secret kept from Kelsey’s second mother.

The old saying goes that some friendships pick up where they left off, and this one did not just pick up, it took off.   This amazing woman and her family got to work and thought about a way to help Kelsey and her foundation immediately.  

On Saturday, September 24 at Chestnut Branch Park, an amazing group of families, led by this incredible woman will come together to host a Lemonade Stand for Kelsey.  Aside from the enormous gratitude I feel inside, I am also overwhelmed because it was her children who came up with the idea.  My former students decided to teach me a lesson in giving more than you ever expect to receive.  Their kindness and generosity is exemplary.  As their former teacher thinking “like a parent,” I am proud, humbled, and full of joy.

If you are free this weekend to purchase lemonade, buy a bracelet, share a hug, or say hello, join us at Chestnut Branch Park.   We will be there from 10-2 to spread awareness and keep the attitude of gratitude alive.  

If you’re free in PA afterward, join us for the sounds of Sunday Muse and another opportunity to spread the word and the love.

To close with the words of Dr. Seuss, “Unless someone like you cares a whole awful lot, nothing is going to get better.  It’s not.”

Thank you caring a whole awful lot.  Life is going to improve for Kelsey, just watch.

Wit Us All the Way

June 10, 2014 is a day that I have tried to forget every day since.  I remember the moment that Kelsey’s doctor walked into the room with eyes that said too much.  I knew that this would be the beginning of the journey, and I have gone through the motions of anger, denial, exhaustion, and depression since.

If not for my mom on that night, I think I would have broken.  Instead, when I went to pick up my son, I was given a dish of pasta and a goblet of wine.  I could barely stomach either nor the words to speak all that I had learned at 5:05 PM.  I wondered if it was the terrible nightmare that kept me up at night every evening since I knew it was a possibility.  “Polyarter…er… I guess I should learn how to pronounce this,” I thought.

I googled the entirety and read the very little that was written on the disease, especially for a three year old.  The New England Journal of Medicine provided the most detailed account of the new findings and patient studies to date.  Though little was written, I found that the more I read, the less I could handle.  I could barely get out of bed.

As you may be thinking, the days, weeks, and months that passed following the first steroid dose and the booked chemotherapy appointment were a battle.  We finally had a diagnosis and a plan, and for that I was grateful.  The National Institute of Health saved us the side effects of the chemotherapy infusion by offering us the option to use Enbrel instead as a TNF blocker.  The doctors had good reason to believe that it would improve Kelsey more than chemotherapy and virtually eliminate the risk of stroke, “as long as we can stay ahead of the dose,” they cautioned.

Always stay ahead of the dose, we try.  Sometimes staying ahead feels like lagging behind, and it was for that reason that my family and I finally decided that our silence was only causing an implosion of worry and pain.  To stay ahead, we need more.

Therefore, on June 23, 2016, I truly began to open up about the feelings and struggles I had endured as a mother.  If you read this post or have read others, I thank you.  I have found a great deal of strength through the keys of this keyboard and the kindness of many who do not realize its effects.  

September 11, 2016 is another key day on my journey for Kelsey.   A heavy day for our nation that evokes sorrow, hope, and patriotism.  The fifteenth anniversary of a difficult memory now holds a new place in my heart, too.

Maybe it was watching the footage of the twin towers with my son that morning that started the nausea.  Or perhaps it was the reality that today would be the day my family’s mission became a public reality.

As easy as it is for me to type our tale and share it behind a computer screen is as difficult as it is for me to openly discuss my feelings.  September 11, 2016 would force me to do that as Pat’s King of Steaks allowed us to host Cheesesteaks for Kelsey.  Words cannot truly express what an incredible day it was for my family.

The support, love, and generosity of family members, friends, and strangers near and far, was truly unbelievable.  Some I have never met, some I have not seen in seven or thirty years, and some just a few hours.  With each new smile, $1.00 donation for a bracelet or through your purchase of a steak, you showed my family and its mission support.  The shades of blue I have felt for two years started to turn a more purple hue.  We cheered the Eagles on to victory and then had four beautiful cheerleaders grace us with their spirit and support following the win.  It was a mix of green, red, white, blue, purple, and pink.  

It was a beautiful day to be in South Philadelphia.  We came together for cheesesteaks and we came together for Kelsey.  Love truly transcends and love is what carries us through.  

If you called, texted, came in person, bought a bracelet, or thought about our efforts on Sunday: THANK YOU.  I always tell my kids that they can move mountains, just as Dr. Seuss has told me for many years.  

Today, I am starting to believe that maybe I can, too.

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Bright Beginner

Yesterday, like many mothers sending her child off to Kindergarten, I shed a tear as I watched my five-year-old stroll joyfully onto the bus.  I tossed and turned the night before wondering how her day would go.  I was both ecstatic and anxious as she was set to embark on an incredible milestone.  My tiny tears were those of happiness, hope, and excitement.

Three weeks ago, this was not the same carefree kid that realized her educational journey was beginning.  Instead, fear seemed to hit her out of the blue on a Thursday evening.  I heard sobbing coming from her bedroom.  I knew that these were not tears of pain, and I wondered what could possibly be the source of the tears.

“Mommy, what if no one likes me in Kindergarten?” she inquired when I snuggled in closely.

While my first reaction was to laugh at my social butterfly fearing friendship, I realized how serious her worry was at that moment.  Apprehension quickly escalated the more she began to think about Kindergarten and all of its components.  Her concerns included eating lunch in a cafeteria, riding on the bus, and meeting a new teacher.  Of all of the worries I have had this summer and fears that I have attempted to face, these were hers and quite valid they were.

Her brother experienced these same troubles and overheard our conversation.  He happily asked to join our conversation and assured Kelsey that everything would be just fine.  He also shared some tips.  My favorite piece of advice from the seven-year-old sage came when Kelsey noted that each new child would actually be a stranger on that first day.  My son replied, “that is true Kels.  If you are not sure about the kids on the first day, just say, ‘Hi!   My name is Kelsey, maybe we can play tomorrow?’  Then watch them during the first day and decide if you’d like to play with them the next day.”  Then my wise son shook his head and said, “On second thought, maybe you can just say, ‘would you like to be my friend?’  These will be the kids in your class all year long so you might as well just make friends the second you meet them.”  

The two young scholars continued the discussion for almost thirty minutes with advice, worries, and tips to master the art of Kindergarten.  

Kelsey’s trepidation followed by complete comfort in her brother’s words forced me to marvel at the thought of childhood and its innocence.  The fears she had were quite legitimate, and the only ones I wish she ever had.

When the bus halted, I watched her linger and carefully observe the bigger kids.  She was not entirely sure what to do at first.  Then, she looked back, gave a wee wave and bounced on the bus full of hope and excitement.  The educational journey of my daughter had officially begun.  

Later on that evening, Kelsey wanted her big brother to know that she took his advice.  “Today, I saw a girl with her head down.  Maybe she was sad or scared.  I didn’t even know her name but I said, ‘Hi, I’m Kelsey.  Do you want to be my friend?  Guess what, she did!”  Beaming with excitement over friendship and her brother’s wisdom, I could not help but smile and get a little bit teary eyed.  

The tiny tears that made it difficult to finish cooking dinner represented joy, pride, and part of the notion that I must be doing something right.  I guess tonight was a milestone for me as a mother, too.

To my Kindergarten girl and second grade star, I hope that you always remember:

“You’re off to Great Places!

Today is your day!

Your mountain is waiting,

So… get on your way!”

Dr. Seuss, Oh, The Places You’ll Go!

#newviewforpan

Wit or Wit Out?

This summer has brought me to a new level of humility, gratitude, and appreciation, all of which I find to be fundamentally sound values to foster in children and adults of all ages.  September and November Events are filling up, and I am touched more than I could ever express for the diligent efforts of our family and friends.  It is no wonder that my family tree has strong roots in the City of Brotherly Love, Philadelphia .

William Penn founded the historic city in 1682 and the Declaration of Independence was signed there in 1776.   It is home of the Liberty Bell, the most intimidating fans in football, and my grandmother.  As a New Jersey native, I must admit that my South Philadelphia roots and incorrect pronunciation of “water” can not help but come out from time to time.  

The Philadelphia Eagles will begin the 2016 football season on Sunday, September 11, 2016 just a few blocks away from my mother’s childhood home.  Those passionate fans will be ready to stand tall for our country and for their team.  They will bleed a combination of green, red, white, and blue to commemorate Patriot Day and the American past time.  Fans will honor and cheer for the memory of what was and the hope of a new beginning.   

Then, it is my sincere hope that win or lose, another tradition will stay strong.  The one and only Pat’s King of Steaks since 1930 is located at the intersection of 9th Street, Wharton Street, and Passyunk Avenue in South Philadelphia and sure to serve up a post game delight.  This iconic location will help my family’s efforts become one step closer to a cure by hosting Cheesesteaks for Kelsey.  On September 11, we will join forces with the King himself to help the Princess of our lives.  $1.00 from every steak purchased from 4 P.M.- 10 P.M. on 9/11/16 will go towards our mission and help us with our goal.  Come one, come all.  

Win or lose, my heart will be full with pride as an American for all of the pain and resilience that day represents, pride as a mother on a mission to bring attention and hope to her daughter and other affected children, pride as an Eagles fan, and pride in my South Philadelphia roots.  The City of Brotherly love will not disappoint me.

Are you wit us or are we wit out you?

I Do

Nine years ago, I said the words, “I do.”

…for better, for worse, for richer, for poorer, in sickness and health…

On the day of my nuptials, I did not fully understand the weight of the words.

Though it remains one of the happiest days of my life, marriage is arduous.  It is a journey that weathers many storms.  It provides sunscreen, shade and solace on the blistering hot moments of life, a soundtrack for the celebrations, an anchor to pull you safely to harbor, and an umbrella to keep the rain away.  Each day presents small opportunities to learn and love.  Some days are more challenging than others.  It takes durability, resilience, and grit at times.  I have learned that the grueling times have ultimately made us steady and stable in the end.

It is fascinating to consider how love evolves over time and how much individual growth occurs year after year as your union flourishes.  Nine years later, I can say that we are more in love than we were when we said those I dos.  Though, at times, the umbrella of marriage has reversed and appeared to turn inside out.  Some days or months wear on you and create tiny holes that are essential to patch promptly and correct with care.

When the rain is over and you find yourself dry once more, you are relieved that the storm has passed and the patch sustained repair.  Some nights, you need that anchor to guide you home safely, too.  You are grateful and humbled by love’s embrace.

The past nine years have been full of celebratory songs, heavy anchors, multiple bottles of sunscreen, and a reliable patchwork umbrella.  Our hearts prefer the harmony, but our lives have tested the dependability of our umbrella.

While our love came first, it naturally falls into last place these days.  Anyone with young children would likely agree.  When planning our wedding, centerpieces and chair covers were our two main struggles.  While trivial in life, the compromise and communication you need for a strong marriage are real regardless.  We found a floral happy medium and the day was pure bliss sans chair covers.  Though our struggles are much heavier now, the ability to get past them wearing a smile requires the same elements that they did over the trivial details years ago.

For four years, I thought that we had marriage mastered.  It seemed effortless and comfortable.  I was beyond blessed to bring two children into the world and though our house was small, our love was vast.  Life was almost too good to be true with the love and health that surrounded my home.  

Four years in, we were shaken.  I think back often to the sixteen days we spent apart over the Christmas holiday of 2011.  We managed to keep normalcy for our son and a pillar of strength present for our daughter.  It was difficult not to fall apart altogether or find ourselves holding an umbrella that could no longer be repaired in the New Year.   

When marriage forced us to talk about in sickness as the chronic illness of our child, it was more difficult than I could have ever imagined.  We waited for answers.  We waited for help.  We waited in each other’s arms.

Five years of worry, tests, tears, joy, pain, trials, laughter and tribulations have always come back to one fundamental element: open communication.  We have had differences in opinion regarding Kelsey since her first fever.  Our love for her is infinite, but our ability to internalize all that we have watched her endure has its limitations.

Her recent bug bites left us with glaringly conflicting mindsets, and we could not get out of our own way.  For the first time in nine years, we hurt each other so deeply that we did not speak for an entire day.  I never understood how couples could get to that point until it happened to me.  Isn’t that the case with anything, though?  You never fully understand until you live it.

In marriage, you must speak freely and listen carefully.  Having a child with a rare disease makes it even more critical to have open communication.  If we are not a team, we would crumble entirely.  Our support of each other directly enhances or divides our family.  The choice is ours and it is not always easy.

Nine years later, I am happy to report that we say, “I do” once more.  This year, I am a bit more informed than I was in 2007.  Therefore, instead of Happy Anniversary, I would like to say:

I do love your patience and easy-going nature.  You keep me grounded and calm.

I do love the way you look at me as though we first met.  You steal me away.

I do love the man you were when I met you and the husband and father you have become in all of the days and years since.  You are a better man than I dreamed you would be, and I had high expectations.

I do love the way you provide love, strength, and loyalty to our family and the way our children stare up at you with wonder and amazement.   You are their hero.

I do love that you accept me for the girl I once was and the woman and the mother that I have become.  You know it all and you love me still.

I do love you.

We approach a decade of love together with our flawed but faithful umbrella in hand.   On our wedding day, we danced to Dave Matthews’ words “Troubles they may come and go, but good times they’re the goal… Steady as we go…” 

I choose you today, tomorrow, and all the days to come, fully understanding the words.  

In sickness and in health

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Photo Courtesy of Sarah Schulte

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Bug Bites

Merriam-Webster defines wisdom as “the natural ability to understand things that most other people cannot understand.”  The idea of wisdom has been on my mind a great deal recently both personally and professionally.  Today, it would be at the forefront.

The day began with an ideal and carefree morning.  It seemed a perfect blend of sunlight and promise.  My four-year-old niece was coming over for the day to play.  My grandmother, lucky enough to have four great grandchildren and another on the way, was joining us for some laughter and fun.  

Gram, as I call her, and I talked a great deal about life and love while the kids relished in play and imagination.  We danced, giggled, and enjoyed time together as a family.  I could not help but marvel at the contrast between the wisdom and innocence that spanned four generations.  

A few hours into our fun, I noticed three raised bumps on Kelsey’s leg, just above her knee.  This was suspicious to me, as her troubles tend to be on those limbs.  Kelsey realized that I was gazing for too long.

I hoped that the nodules were simply bug bites.  Though, the longer I stared, the more I knew they were not.  To throw off the scent of worry, I referred to them as such.  I did not want to concern Kelsey nor make my niece alarmed.  I did take a picture of her “bug bites” and shared them with Kelsey’s caring doctor.  While the children’s senses could be tamed, mine were on high alert.

Those raised nodules derailed the otherwise beautiful day.  Those pesky raised red marks have only represented trouble in the past, and I felt wise on a subject I wished I had difficulty comprehending.  I held my breath and sat in that waiting place again.  I feel like I have been holding my breathe there all summer.

As always, Kelsey’s incredible doctor saw the pictures and promptly responded with concern.  She has a few new ideas for Kelsey’s treatment.  Too many recent “bumps” have raised doubt in her medications and their effectiveness.  Our doctor wants to discuss her ideas with the National Institute of Health and together, they will determine the best course of action.   

Life was good today.  I still want it to be.  

I worried a bit longer and hoped for a quick disappearing act to occur.  I had to look at that leg one more time.  

As I attempted to privately analyze Kelsey’s legs, I heard tiny footsteps approach the door and walk in.  It was my niece.  She is very inquisitive and clearly noticed that I had been monitoring Kelsey’s “bug bites” all afternoon.  Curiosity got the best of her.

She was wise to ask Kelsey, instead of me, about spots.   She inquired so innocently, “Hey Kels, what is wrong with your bug bites?”

Kelsey smiled at her in a way that showed thoughtfulness and poise.  She responded, “The best way I can explain it to you is…well, it is just that my bug bites are venomous.”

I had to hand it to Kelsey.  Perhaps there was far more wisdom in the room than I first gave credit.  Wise beyond her years at five, I secretly shed both a proud and concerned parent tear.  Merriam-Webster defines venomous as “producing venom in a specialized gland and capable of inflicting injury.”  Venomous, indeed.


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Weeds

Weeds.  They are pesky plants that grow in places they should not.  They thrive where we want them to perish, and they can overtake beauty anywhere they grow.

Tonight, I looked at my mulch bed.  I’m not a gardener and far from having a green thumb.  Where I once looked and saw mulch, I saw nothing but green.  It was not the desirable green you hope to see in your lawn, though it was certainly lush.  

Instead of enjoying a chapter of my book while I listened to my children play, I got down and dirty.  I felt the dirt dust upon my khaki shorts and coat my hair with topsoil.  Though I was ill-equipped, lacking a hair tie and gloves, I realized that I could not let these growths overpower my lawn another day.

The more I truly looked at the intertwined madness, the further my mind drifted from the weeds.  Instead, I thought about Kelsey’s body and the blood vessels interconnected within her, within all of us.  One tiny root can take hold and wreak havoc.  It is possible in the garden as it is inside us all.

In contrast to my view this evening is the picture-perfect mulch delivery day, full of rich color and that undeniable smell.  I close my eyes and wish it to magically appear in front of my eyes now, highlighting the landscape and the promise of cultivation.  That is, in fact, the promise I hope for every day when I open my eyes, vibrant and full of intense beauty.  The trouble is that one small root planted itself firmly and has since challenged that dream.

In November 2011, a small germination developed inside of my daughter’s right leg.  Its seeds spread where they should not have, quickly and silently.  The hope and promise that comes with every fresh mulch bed is the same promise that every child deserves, that my child deserves.  I stay up so often at night wondering why there are so many weeds growing in our children’s gardens.

Polyarteritis Nodosa and the gene deficiency inside of Kelsey is neither annual, biennial, or perennial.  It has not the pattern nor the predictability of those three common weed varieties.  Though, the intertwined system and fibrous nature that creates terror on the lawn can cause the same fury inside of her.  Without constant care, monitoring, and attention, blood vessels could enlarge or necrotize causing organ damage or another stroke.  It is a seed that fills my mind with worry, and one I try not to spread further than it needs to sprout.

Instead, I try to love deeply, pray often, and hope that our newly formed Foundation will lead to a better way to monitor the weeds in gardens around the world.  For unlike purchasing the most effective herbicide, yanking out the root, or placing weed guard in the perfect position, the best known formula to diminish Kelsey’s weeds is unknown.   

Every Wednesday, she gets her protective injection, much like a preventive spray.  The trigger is much harder to pull and much more difficult to measure.  The life saving drug is dispensed by patient weight.  It is also known to accelerate growth.  How can you accurately maintain and stay proactive with treatment that also stimulates development?  It is a riddle our doctors hope to answer and stay on top of, though, it also leaves much doubt.  It gives too much room for those unwanted plants in areas we do not wish them to grow.  

They seem to take over the lawn completely and eradicate the beauty both inside and outside of my home.  Whether a picturesque Easter Sunday or an otherwise beautiful Monday, the weeds seem to grow with a vengeance.  They extinguish hope and damage more than just the landscape.

In one hour, I only uprooted a small fraction of the weeds.  I did not have the daylight nor the energy to continue.  In just over two years, I know little more about PAN and Kelsey’s gene deficiency than I did on that difficult June evening I learned of the diagnosis.  

Tomorrow, I will take on the lawn.  If only it was as easy to tame Kelsey’s weeds and the fury they could unleash if overlooked.  You know where my mind will drift if you see me out there pulling down the root, wishing I could tear out much more than the lawn nuisance.  


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Changing Tides

Changing tides are natural shifts in the waterways caused by the gravitational attraction of the sun and the moon on Earth.  The moon has a hold and a force on the outcome of these changes unlike any other influence in the world.  Tropical storms miles south can even create record high tides much further north, as they doing now.  Tides have always fascinated me as the daughter of a true boatsman.  The truth is, Kelsey is my moon.  Her force is incredibly powerful.

This morning, my curious son wanted to investigate our names and their meanings.  We learned that Old English defines Kelsey as “fierce.”  That was no surprise because I would say that she is truly a force to be reckoned with.  While the cycles of her life are unpredictable, the gravitational attraction she has on me is not.

It is also no coincidence that “Kelsey” is also known as “the ship of victory.”  I realized and felt drawn to the strength in her name while we were selecting it but never knew the nautical relation.  I find the newly revealed meaning fitting since she controls the tides of my life.  As her mother, I feel it is my job to help her find victory.  Her triumph is my mission, but her ship is hers to sail.

When the sun is shining and the tide is high, boaters and beach-goers rejoice.  The activities they hope to enjoy are easy, fun, and full of water’s depth.  Kelsey is just like the highest tide with her strong current and ferocity.  She shines so brightly and soars to meet the feet of boaters as boat ramps do when her tide is high.  Her small victories trigger sensational highs for me, too.  She enjoys life in those moments more than any other child I have ever seen.  She literally jumps for joy, and I often find that her exuberance is contagious.  

We have been out at parties, picnics, and other social gatherings to hear sentiments such as, “she is the happiest child I have ever seen.”  During those times in the past, I can not express how grateful and sad I have felt.  “They have absolutely no clue.  Can you believe she has had a stroke?” I often think in response, but instead say aloud, “Thank you so much.”  Don’t get me wrong, I am always grateful to hear kind words but felt that I withheld a great secret as well.

During the high tides, the mother in me is so proud that she can almost burst.  Kelsey is thoughtful, considerate, and never leaves a child out.  Her zest for life is difficult to ignore.  The difficulty is to imagine that a low tide may be coming or that an eminent threat is on the horizon.  When the tide is flowing, the day flows with grace and beauty.  Those days and moments are true gifts and I cherish them.

In contrast, when the water ebbs and starts to clear, creatures below become visible, trash emerges in places you would least expect, and the current may just steal you away.  Just as her troubling days are delicate to talk about and difficult to live through, when they happen, my tides are excessively low.  I am swept away in those moments, when the energy depletes out of my daughter rapidly.  Last week, I hit a low that often comes with a weather extreme, a tropical storm, or a rare moon.  I was not sure how long it would take for the water to return and the docks of my mind to rise back to a stable place.

My son’s laughter and thirst for knowledge helps me more than he will ever know.  I often wonder how he deals with all of this, seeing far more than he can possibly understand.  I believe that in his own way he knows when I need him.  He knew this week.  As we left for Kelsey’s blood work, Murphy’s Law surrounded us.  The lab orders were expired, my printer was not functioning, and my anxiety was high.  Two hours later, when we finally got in the car, I looked back at him.  He wore a camouflage windbreaker (mind you, it was almost 100 degrees), protective goggles, one wool glove, and held a suction cup bow and arrow in hand.  He said it was his protective gear, and it was precisely the laugh I needed.  

My son’s name means “Remembered by God.”   If Kelsey is my moon, my son is truly my gift.  He helps my tides stay high and keeps a smile on my face, even in the lowest extreme.   

My husband’s words and my parents’ comfort also gave me strength this week in more ways than they know.  The positive words and messages from friends near and far were great blessings, too.  They all combined to keep me together.  As we wait still for the results of blood work and the possibility of imaging to assure that all is well inside those tiny legs and surrounding vessels, I am trying to keep the positive energy afloat.

The waiting place is still a very useless space, but the changing tides keep me smiling.  Day by day is our family motto, and happily today, the tide is rolling in rapidly.

A Punch of Present

Though I have been reflecting on the past and recalling tender memories in an effort to shine a positive light on the future, today I awoke to the words I fear hearing every single morning.  Today, it is as if I am punched in the stomach with the present.

“MOMMY!”  I hear from my room.  The pain that accompanies that call from my daughter’s bedroom is one that means only one thing.  If she is calling for me, she can not get up out of her bed.  The intensity of that moment, of that agony, is indescribable.  If that is how I feel simply hearing her moan, how awful must she feel?  It is a thought that keeps me awake at night and keeps me dizzy today.  Though, I can not waver.  I must be resolute in appearance and emotion to her.  I must not let her see me cry.   The sight of my tears only makes her feel worse.  Given the distress clearly spread within her tiny legs, the last thing I want to do is cause one more drop of pain.

I sneak upstairs to find solace and a keyboard instead.  Containing the water works all morning lets them fall freely along with my worries and my fears.   I am numb.

My mind drifts and my heart aches.  A much anticipated family weekend on the beach made it impossible for Kelsey to get out of bed this morning.  The thought is overwhelming.  Fun caused tremendous pain.  Although I should not place guilt on myself, I ponder my own actions and what I could have done differently.  Did I make her walk too much?  What did I not notice?  How are we back here again?

With two days to go before her medicine is due, all I can do is wait.  Life is on pause as I wait for this to pass and a call from the doctor.  I am hoping to soon gather a better sense of how to notice a flare, plan for a flare, and reverse the effects of this one today.

So for today, as I sit, I realize that I am stuck in the waiting place.  As Dr. Seuss tells us: 

“when you’re alone, there’s a very good chance

you’ll meet things that scare you right out of your pants.

There are some, down the road, between hither and yon,

that can scare you so much you won’t want to go on.

But on you will go though the weather be foul.  

On you will go though your enemies prowl.

On you will go though the Hakken-Kraks howl.  

Onward up many a frightening creek,

though your arms may get sore and your sneakers may leak.”

Dr. Seuss, Oh, The Places You’ll Go

As I sit waiting for the phone to ring or a smile to shine on my daughter’s anguished face, I find that the waiting place is a truly useless space.  Instead of preparing for her first Hip-Hop dance class this afternoon, the one she pulled clips from YouTube to practice before the classes even started, the one that she has been excited about for weeks now, we just wait.

While it is her legs rather than her arms, it is still a frightening creek.  I often wish I had a larger paddle to navigate through such troubled waters and pick me up from today’s TKO.

Calm Before the Storm

I look outside and see a serene and still sky.  It is the moment that exists just before a bolt of lightning illuminates the sky.  The calm before the storm resonates and reminds me of the personal storm that swept me away in November, 2011.  The darkness slowly creeps in through my windows, just as the pain brewed gradually inside of my daughter during that fateful month.  I shed a few tears as the first raindrops fall tonight thinking about the pain that my nine-month-old child must have been experiencing and how unaware I was that it was developing so quickly.

Advil was constant in an effort to ease the “teething” pain I knew in my heart was not the culprit.  Each morning, I awoke hoping and praying that this day would be different.  I would think, “this morning would be the one that finally brings us back to normal.”  Instead, the burning hot patches and fever persisted.

Another call to the doctor assured me that teething was still at the root of the problem and it should only be a few more days.  Thus, the holiday season began with Thanksgiving.  I typically love this time of year, but that November I felt numb.  It was difficult to even crack a smile with the heavy weight of my worry.

On November 24, we traveled to a relative’s home for the holiday.  Kelsey slept through most of the two hour ride.  Yet when we arrived, I felt that she never fully awoke.  Her eyes were glassy, her body was warm, and her legs were likely filled with unbearable pain.  I held her close and tried to act as if everything was normal.  In direct contrast for me to see was Kelsey’s cousin, born just three days before her.  He was crawling around, full of energy, and alert for the duration of the day.  I sat and held Kelsey as family members asked what was wrong.  The difficulty was that I did not know quite what to say.  I recall lying, “the doctors tell me it’s bad teething pain.”  They all hoped the same and lied right along with me.

As I now listen to the storm beginning to churn outside, it is clear to me that I should have seen the same clouded vision happening within me.  The sky is now dark and heavy just as my mind was for a few days following Thanksgiving.

The first bolt of lightning strikes exactly as a jolt seemed to hit me on Monday morning.  I had enough.  Something was wrong, and I could not deny it any longer.  I scheduled an appointment and demanded more.  I also requested a different doctor than those I had seen before.

A fresh set of eyes met my troubled gaze that afternoon.  Though as I recall, he stared at me without concern or fear, but rather annoyance with my worry.  He did at least listen to me and agreed that we should have blood drawn to erase the fear of anything serious.

My husband took Kelsey for the first draw.  I did not think I had the courage to be there with her.  He held her tightly as she screamed in agony.  I remember him telling me how deeply she wailed and being so grateful that he was able to be there to hold her.  “I would not have been strong enough,” I thought.  It’s quite ironic to think about it all now as blood work is a necessary norm in our lives.  

Though I did not do what my motherly instincts knew were best immediately, at least we were on our way to some type of answer.  We just had to learn the results of the testing and a decision would be made from there.  I packed a bag for Kelsey and me because I knew where we would be headed.

The calm was over, as was my denial, and the real storm was just about to begin.

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