Author: New View for PAN

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.

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 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.