~ 10 years ~

11 Sep 2011 Leave a comment

by PANDAS - PITAND ~ Mom to My Hero in ~♥~ Faith's updates ~♥~ Tags: , , , , , , , , , , ,

To the victims, heroes and families... we will never forget. ♥

10 years ago this morning, I was rushing… I had overslept and was running late to exercise before my then-toddler woke for the day.  As I hurried to put on my sneakers in the family room before starting the exercise DVD, I flipped on the news… Tower One of the WTC was on fire.  As I watched in disbelief, a second plane hit Tower Two of WTC and in that instant, Dan Rather articulated what we all knew:  this was war on our own soil.  America was under attack.  In the events that followed, I watched as we all did, in a combination of shock and horror, not knowing what might happen next…. or where.

Arriving at the hospital later that evening, I was briefed on the confidential security measures being taken and that each of us could be called in to help at any time and would have to respond.  I thought of my 27 month old daughter and wondered if I’d be able to leave her in the event of a local emergency.  I thought of the countless heroes who were in New York, Arlington and Pennsylvania, who were doing exactly that.

In the days that followed, I contacted family and friends… my step-sister worked (and still works) about a block away from the twin towers.  One good friend was traveling from the DC area to California that week on business and I could not remember the date… or reach him, initially.  Another friend was a volunteer fire-fighter and went to help in the week following the attack.  Thankfully, each of them are safe… forever changed, but safe!  So many others were not…. freedom comes at a very high price.

 

10 years.  So much has changed.

With renewed fervor, I sought to save my first marriage that had endured things I will not write about here out of consideration for my child… I still believed in marriage and wanted to work through the issues; but, most of them were not up to me and I eventually came to realize that God was watching over us through this process.  My divorce became final and we worked out property settlement, custody and visitation issues.

I finished nursing school, graduating at the top of my class, passed the NCLEX for licensure & started a graduate program to become an MSN as I worked full time in Orthopedics, then Hemo-Dialysis.

I was one of the leaders of the single’s ministry at our church and blessed with good friends.

My toddler continued to grow and started school, placing in the gifted classes for Math & Reading.  I remember how proud of her I was… how content I was with my life.

I met and later married my husband, Dan and became a step-mom to his daughter.

We bought our first home together.

Our girls became fast friends… could we be any more blessed?

Life was good and even though we thought of ourselves as thankful for our blessings, we took so much for granted… and everything was about to change.

We immediately faced one crisis after another… my husband endured changes at work that led to a health crisis of Major Depression for him that lasted two years as doctors sought to adjust medication.  Months before that one ended, we faced another for me – Dysautonomia, the worst of which lasted about 3 years and had me bedridden in weakness with alarmingly low blood pressures hovering around 60’s/40’s.

Many months before that ended… one day changed everything in our lives as we faced yet another and perhaps the biggest fight so far as strep pyogenes (strep throat) caused an auto-immune attack (PANDAS: Pediatric Auto-immune Neuropsychiatric Disorder Associated with Streptococcal Infections) of my child’s brain in ways I could never have imagined.  In literally one day, I had a completely different child.  The process of grief, shock, horror, terror… is not something I can articulate – words and lists of symptoms are inadequate to capture the sudden intensity of the nightmare that becomes daily life for families with PANDAS.  I imagine those close to the events of 9-11 know what I mean.

We were one of the fortunate ones; our pediatrician diagnosed her barely a month into her first severe exacerbation and has been a tireless advocate with specialists.  She has a severe case, compounded by an immune deficiency and a great susceptibility to strep infections.

I helped my best friend recover from cancer surgery.  Thankfully, she is doing well now.

I faced one critic after another who wanted to label these changes a behavior problem and discipline her more and more stringently.  While I can see how this mistake is made given the brain involvement, discipline will not correct PANDAS any more than it will Influenza or Chicken Pox… or yes, even Strep Throat or Scarlet Fever!   This is not to suggest that we sit by and do nothing.  We must address the underlying infection and auto-immune process and I believe, support recovery through counseling that includes Exposure Response Prevention to provide our children with tools to better manage exacerbations.

I had to stop working and withdraw from school … first, to focus on my husband, then to recover my own health, then to care for her.  I started to wonder why I returned to school to become a nurse for such a short lived career!

She had to stop attending school last year… by God’s grace, she recovered enough to complete her core classes and finish the year on the honor roll.  Given where she was last Christmas, this is nothing short of a miracle!

 

10 years… so much changed.

I stopped planning my life.  I started living day to day, moment to moment, in my own terror of losing my precious child, fighting with everything in me to learn about her poorly understood condition and save her.  I spent more time researching on Medline in just those early weeks than I did in my entire time in Nursing school.

We had to travel to get help for her as medical specialists are few and far between for this condition… the expenses have been great and cover a broad category of losses.

The rewards… greater still as I watch her recover in endless gratitude!  We’re working to send her back to school this year on a modified schedule with a late start…. the brain takes a very long time to heal.  I watch our nation recover and rebuild and am filled with pride… I see her returning to the personality I knew before PANDAS came to live in our home and I am filled with thanks… and frankly, sometimes think I might break down from the sheer intensity of emotion born of this crisis.

10 years.  So much has happened & so much has changed.

My daughter is in middle school now and thankfully, recovering.  My step-daughter is half way through graduate school and student teaching a class at the college she graduated from only a little over a year ago.  Both girls are good students and wonderful daughters.  My husband is happier in his work now…. and me?

I hope I have given myself up to whatever God leads me to do, rather than my own planning… but, have I become unintentional in my life?  Do I no longer plan enough?  My focus has changed from my educational and career goals that were once so important to me, to reaching out to other families struggling with PANDAS.  I designed a PANDAS-PITAND Awareness Ribbon and founded an organization to support research:  PANDAS-PITAND Awareness & Research Support.  PITAND is Pediatric Infection Triggered Auto-immune Neuropsychiatric Disorders… it’s not only strep that can cause this relentless auto-immune attack.  I co-admin a support group on Facebook for Parents of Kids with PANDAS-PITAND (PANS).  PANS is Pediatric Acute Neurological Syndrome… the new name for these conditions.  Mostly, it has become my life’s work to advocate for my daughter.

 

As we remember those lost on 9-11, it’s hard not to see the parallels in my own life.  I can’t turn off the memories of what this day, 10 years ago held, any more than I can turn off what has taken place during the last 10 years in my own life.  I am unable to ignore the irony of how things can be so completely calm and peaceful… and suddenly, everything changes.  Nothing is certain anymore.  An intensely painful and challenging time, no question.

 

Yet… there is hope.

Children of 9-11 are growing up… they will never forget, but they are moving forward and they will be positive forces in our world.  Lower Manhattan is healing and rebuilding.

My husband, I and my daughter are all healing and our health is improving… we will never forget, but we are moving forward and I pray God will use us also, to be positive forces in the world.

Yet, there is so much more to be done.  On a global and national level, there is peace to be made with our history surrounding this day.  On a personal level, there are many goals I have that are not yet complete.

10 years…. what will we do with the next 10 years?  It all begins in much the same way as 10 years ago… with one day.  As I seek God, I ask for guidance in how to spend the gift of it.

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