Month: July 2016

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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Reflections

Reflections in the cloudy bay water this weekend made me reflect on the journey I’ve traveled so far.  My reflections are sometimes cloudy, too, but I think that is because I try not to focus on them.  Instead I try to focus more clearly on the now, the positive, and the hope.

On my lap, joyous and exuberant sat a girl who sometimes sits on my lap the same way tired and in pain.  When she is feeling great, the world can not help but join in on her contagious and positive spirit.  She truly shines brighter than the sun.  

When she sits on my lap, crying or sleeping due to pain in her legs, it is just the opposite.  During those trying times, it is typically just the two of us as it was this weekend.  Those lonely moments happen far less than they did years ago.  Looking back, those nights were so frequent that they sadly became the norm.  I think back to those days now and how they all began.

Like it was yesterday, I recall Friday November 18, 2011.  My mom was off and watching my kids for the day.  When I left that morning, my two children were happy and healthy, though Kels did feel a little warm to me.  She had received her flu vaccine and nine month immunizations one week prior, so I did not think much of it.  I left my mom happily singing with the kids on my family room rug.  Neither one even noticed me leave.

I walked in the door after work to my mother in tears, Kelsey lethargic and red with warmth.  My mother could barely speak.  We locked eyes, both filled with pain, fear, and a stream of tears.  I remember the words she spoke, the few she could get out, “Something is wrong.”  I recall standing still and feeling frozen, fighting my own intuition because I just wanted everything to be right.

That night, my pediatrician assured me that Kelsey was just teething. “Advil will do the trick,” she said with a smile.  I did not believe a word of it, but I attempted to sell the teething story to my mom.  She did not believe it either.  I wanted it to be true.  However, when your child wakes with a 102.9 degree average temperature and red hot patches of skin on her body, you know in your heart that is not the case.

My mom’s words echoed in my mind almost every second of the day for the next week, “Something is wrong.”  I was a naive mom, and I was in denial.  I hoped that Advil would do the trick.  I just wanted everything to be right.  So a second visit to my pediatrician again suppressed my mommy instincts and assured me that it was just teething.  “Advil will do the trick,” she said and I embraced the thought.

But I knew that it wouldn’t.  What I did not know was how to say that I just knew that it was not just teething.  After all, I do not have any medical training.  I also did not have any idea what was actually starting to happen inside of my nine-month-old daughter’s body.  Instead, I just remember crying to the doctor that night.  It was the first time I cried about my daughter in front of a doctor.  My heart just knew what I did not have the courage to say.  That night, I knew that it was not just a feeling.  I had to find the strength to say it.

“Something is wrong,” I pleaded.  Somehow, I mumbled those three words through my tears, only to hear, “Advil will do the trick,” again.  That was the first of many times I lied to myself.  Instead of fighting for my child and advocating for what I knew was the truth, I fought back tears, attempted a smile, and gave my daughter more Advil.  I did not have a medical degree.  Yet, I still heard my mother’s words, “Something is wrong” and I knew that something was.  I just had to decide what to do about it.

Reflections can be altered through a lack or burst of light.  A cloudy day can turn sunny and picturesque in a moment’s notice.   I wish I could alter those November reflections so quickly.  Thinking about them helps me to see how far I have come, how much I have changed, and how much stronger I am because of them.   

I much prefer the reflections of the cloudy bay water and the smile I saw reflecting back at me.

Reflections

Warmth

The summer sun warms my heart and gives me enormous hope.  There is laughter, water games, and trips to the park.  

The lingering hours of sunlight also remind me to count my blessings.  These blessings exist in kind messages, warm smiles, and the generosity friends and family members have shown.  I am realizing how tremendous my support system is both near and far.  This week, I have reconnected with friends, received kind messages, and felt an overwhelming sense of love and gratitude.

My husband has also been an incredible source of support.  He is truly my rock.  Whether I need to laugh, cry, or say nothing at all, he always knows how to let me be.  My strength often grows with his presence.  

Then there is my mother who makes it her daily mission to make sure that I am okay and doing what I need to do for myself.  Sometimes I don’t want to respond to her because I’d prefer not to deal with the truth.  My mom always has a way of getting the best out of me, though, as only a mother can.  A mother’s intuition is one of the strongest forces on the planet if you ask me.

The National Institutes of Health are also on my mind.  My family’s recent visit there fell on my birthday.  It was fitting in a way because the work done there is a gift. although it is a present you hope not to need.   I often leave with more questions than answers, but I know that doctors and researchers there are always on a quest to answer the unknown.   It can be a lot to process while you visit the facility and talk with so many brilliant minds.  The conversations can be heavy, but I appreciate the level of care they provide.  

This morning’s intense sunshine reminds me of today’s appointment.  The intensity will come sans sun in an air conditioned room as I will learn the results of my own genetic testing.  Like so many recent appointments for my daughter, I will likely leave with some answers and many more questions.  Whatever the results, I will leave with my support in place and the summer sun following me home.

I may need a bit more warmth today than usual.

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