The Zoë Faye Foundation
  • Home
    • Malignant Rhabdoid Tumor
    • Miss Zoë Faye >
      • Balloons for Zoë >
        • Balloon Launches and Other Stories
      • Prayers For Zoë
  • Little & Fierce
  • A Posse Ad Esse
  • Support
    • Team Zoë Gear
    • Zoë's Team Members
    • Events >
      • Past Events
      • Event Photos
    • Donations
  • Contact Us

PTSD

1/24/2014

3 Comments

 
I have been debating whether or not to write about this topic for a while.  This is not an easy or light topic to broach, and there are so many people out there suffering from such sever forms that I wonder if I am being too sensitive, or if my experiences even fall in this category.  However, lately I have been experiencing more and more symptoms that to me are stressful enough to place myself among others who are suffering from PTSD.

There are two reasons why I want to talk about PTSD (Post-Traumatic Stress Disorder), one is because I want to show how it can creep into your life even long after you thought you were over the worst of a situation, and two, because it is not always easy to tell if someone is suffering from something like this.

Did you think that I was?

I didn’t…

Not until a night earlier this year when Esmée screamed like I was beating her all the way home from Natick, Massachusetts.  A drive that takes anywhere from 45 minutes to 2 hours.  That night it was raining so hard I could barely see out of the windshield, and Esmée’s screams only seemed to escalate.  My heart was racing, and I could barely breathe.  It felt like I had been punched in the chest.  My mind raced and raced, every image of Zoë that I have stored in my brain came flooding back to me.  Before I knew it I was begging Esmée to please stop crying.  I nearly welled up myself, but I sucked in the biggest breath I could manage and I told myself, “NO!”  I was not going to let myself be hijacked, I was not going to let the adrenaline, and flashbacks take over.  What I needed was not to shut down, but be there for Esmée.

So I did all I could do to calm both Esmée and myself.  I turned on the radio and sang along to anything I could.  I let the music carry me away to better thoughts, better thoughts with Zoë, and attempting to create better thoughts  for the future.

Lately Esmée has been going through a time where she is waking in the middle of the night to play.  This happens in children who are on the brink of a large breakthroughs.  As they begin creating new neurological pathways in the brain and as they gain a new skill they will be excited about it, and want to practice, even in the middle of the night.  In Esmée’s case this is because she is on the brink of walking.

While one part of me is thrilled that she is not only developmentally on target, and showing that she is excited to be learning, the other part of me barely copes with her night time crying.

As I hold her, rock her, or walk around her room with her I do it with my eyes held wide open, because the moment I shut my eyes I am back in the dimly lit hospital room holding my baby hooked up to feeding tubes, and wires, and monitors.  I am transported.  I am barely able to stand.  I can barely sing to her…I cannot think of the words to nursery songs, and I dread the songs that I sang to Zoë popping up from deep within my consciousness.  I hum…I plead with her in my head.  I often times calm her by bringing her to bed with me for a bit of night time nursing until I can return her to her crib asleep.

I don’t want to look back on Esmée’s infancy and think that the moments where she was most upset, and needed me most as the moments where I could not handle her.  I don’t want to be distant and distracted from the present moment with her. 

When I was in the hospital with Zoë I made a conscious effort to stay present in every moment.  To live as fully as I could, and to absorb and remember everything.  I did this because that was all I had of her.  The hours of her crying and screaming, and being sick, and unhappy are some of the only hours that I got with her.  So I had to embrace them, and I had to do my best to cherish them.

I don’t want Esmée to be a trigger; I don’t want her crying and screaming to be the catalyst that transports me back to a time when I was so full of anguish, and pain.  I want to be able to embrace those moments with her like I did with Zoë.

Their are a  few positives that come from this post-traumatic stress, it reminds me that I am continuing to move forward along a healing path.  I believe that this is my mind and bodies way of squeezing out the stress, and anxiety.  It makes me aware of how far I have come, and how far I have to go.  It makes me grateful that Esmée is not a sick child, and makes me aware of just how lucky I have to only have this stress on occasion, and not daily.

Most of all it makes me want to be a better mother.

I believe that this stress and flashback moments that I am having will eventually fade away as Esmée grows up.  She will continue to cry, and have fits, but they won’t be the crazy infant fits, they will be the willful toddler fits.  I look forward to those.

I also think that I need to work more on being alright with being left alone with myself, and my thoughts.  I used to meditate, and since Zoë was diagnosed I have not even dared to really and truly clear my mind and meditate.  I hope that I can get back to meditation, and the peacefulness that it can bring.

3 Comments

Lessons Learned From 2013

1/7/2014

3 Comments

 

Hello 2014.  A new year, and fresh start.  Time is moving forward at a nearly uncomfortable pace.  I want to scream, “SLOW DOWN ALREADY!”  But time listens to no one.

So 2013, I overcame the terror of the first year without Zoë.   It was one of the hardest days of my life, but with Esmée’s fast arrival I sneaked past that date distracted. 

Then came Esmée’s time to grow older than Zoë.  I felt like I was holding my breath the entire day before.  I wanted to check in on her every 20 minutes the night before just to make sure that she was still breathing.  But the morning came, and she popped awake happy and HEALTHY. 

Zoë’s birthday, Thanksgiving, and Christmas stack up upon each other all at the end of the year, Boom, Boom, BOOM.  I barely have enough time to recover from one before another one hits me.

My silence this past Holiday season was mostly due to my constant state of feeling like I was trying to glue my world together with bits of sap, and gum.  We brought Esmée to have her photograph taken with Santa.  It hit me as we were standing in line that I only had one of my daughters with me.  I think the only reason I managed to not run out of the mall was because I had Zeppo there with me.  I wanted to scream out that I was missing my daughter. 

I was relieved in a way that the Santa was not the same man from two years prior.  Then that thought, two years ago. T-W-O years.  It would have been Zoë’s third Christmas.  This just echoed over, and over, and over, and over again in my head that whole day, week, and month.

Christmas day came, and I did my best to hold myself together amidst the revelry.  All I wanted was to lay down where I was and sleep.  To dream away the day.  But Esmée would turn to me, and grin with those bright gray eyes, and I would smile and know that she is my glue, my bits of sap, and gum.  She kept me together.

What pressure to place on your child (whither or not they are aware).

So here I am in 2014. 

I am on the brink of having a nine month old.  In only a few more days (January 18) Esmée will have been on the outside longer than I carried her on the inside.  She is growing and changing so quickly I can barely keep up.  With this I know that I need to work on me, before she realizes how much I lean on her.

I cannot use her to glue me together.  She is a great source of comfort, and healing, but I also need to stand up on my own, and pull myself together a bit more for both of our sakes.

Esmée with Santa 2013

Picture
3 Comments

    Author

    Laura is Zoë's mommy.  Forever and Always.

    Archives

    April 2015
    March 2015
    August 2014
    January 2014
    October 2013
    August 2013
    June 2013
    May 2013
    April 2013
    January 2013
    December 2012
    November 2012
    October 2012
    September 2012
    July 2012
    June 2012
    May 2012
    April 2012
    March 2012
    February 2012
    January 2012
    December 2011

    Categories

    All

    RSS Feed

The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.