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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Wednesday Worry

This morning, I injected my daughter with life-saving medicine.  For two years, I have been doing so.  I have lost sleep, weight, and what seems like my sanity.  How can I loathe something that in reality helps my five-year-old walk without pain?  It is my Wednesday worry and one I’m ready to talk about with whoever wants to listen.

Mary-Claire King changed our lives by identifying the BRCA1 and BRCA2 breast cancer genes that have become household names.  Today, I spoke with founder and president of the DADA2 FoundationDr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, my daughter Kelsey has the genetic condition DADA2.

We are committed to raising awareness and finding a cure for our children and those we have yet to meet.  As BRCA has become a household name, so should DADA2.  November 11 will mark a historic day as the Inaugural International Conference on Deficiency of ADA2 will bring this vision closer to reality.   Physicians, researchers, and families from around the globe will gather to share stories as well as diagnosis and treatment options moving forward.    

One phone call today made my Wednesday worry seem less worrisome.  I hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…