Keeping it together

Ever since Megatron's diagnosis, The Pilot and I have taken the role as his advocate.  We are his voice.  When we found out he would need a transplant at some point, we started advocating for organ donation.  While our journey hasn't been easy, advocating for him has felt very natural to me.  Maybe it's a natural role for a parent or maybe we just rose to the challenge.  

Lately though, in taking care of Megatron and feeling like I'm constantly advocating for him, I've sometimes forgotten to take care of myself and advocate for myself.  I think that's common for a lot of parents but it's not as simple or benign as wearing yoga pants all day or forgetting to shower.   It's a lot more complex, though those things happen sometimes too. 

I've had this expectation of myself that over time, I would come to terms with Megatron's liver disease.  That as time went on, it would get easier.  In general that is true.  Each day gets easier and more and more, the focus is on raising a normal toddler and not always focused on surviving liver disease. Things become our new normal and don't require much thought.  Megatron is healthy and as of his recent 2-year well visit with the pediatrician, he really is a pretty normal little boy.  With the exception of meds and some other transplant related things, he's a normal little boy. So if he's so normal, why am I still struggling?  I've asked myself that question a lot lately.  I keep expecting that I'll just accept our journey and life will move on.  But that just hasn't been happening like I thought it would/should.  Then, around the anniversary of his transplant, I started having a lot of flashbacks of times when Megatron was sick and in the hospital. I figured it was just because it was the anniversary and it was a time of reflection of all we had been through.   But they continued and would haunt me whenever I tried to sleep.  I was frustrated.  Why was something that happened over a year ago still bothering me?  I couldn't make sense of it.  But as a fellow (wonderfully kind and strong!) blogger recently wrote, I was ok until I wasn't. I knew I was struggling but in my cloud of fatigue, I couldn't decide what to do about it.  Again, I kept thinking it would just pass.

It wasn't until Megatron's pediatrician, my own primary care doctor and then someone on Megatron's transplant team, pointed out that I did go through a significant trauma, that I realized that maybe the flashbacks were something that I couldn't deal with alone. After some encouragement from a wonderful friend, I made the step towards facing the trauma that all happened so fast that I couldn't process it as it was happening.  I found a counselor to help me work through it.

Anyone who knows just a fraction of what my family has been through in the past 2 years won't be surprised to hear that Post Traumatic Stress Disorder is what I've been struggling with.  Even though it's probably not a surprise, I've been reluctant to share that diagnosis.  So many people have pointed out that I've handled Megatron's medical issues with such grace, that I'm an inspiration, I'm so strong, etc. but on the inside I've been feeling like a fraud.  I know that I am strong and I never completely fell apart when we were in the thick of things with Megatron but on the flip side, I didn't have that option at the time.  My baby needed me to have it together.  So by some miracle, I did. But as we climbed out of the weeds, I was starting to fall apart behind closed doors.

I lay down and close my eyes at night and hear the beeping of the IV pumps in the hospital.  I see Megatron, skin and bones and a horrible shade of yellow.  I see Megatron's central line coming out of his chest and remember administering IV medications at home.  I see the feeding tube coming from his nose and remember waking up in the middle of the night to add more formula to the feeding pump. He didn't sleep through the night without medical intervention until he was 10 months old.  He wanted to sleep. I wanted to sleep. But his sick little body was starving before transplant and then post transplant, he was burning through calories to heal, in addition to playing catch up with his growth. I remember crying as he would throw up his feeds pre-transplant and it would be a horrible shade of bright orange because of the meds.  And suddenly I snap out of it and immediately become frustrated that I was still awake and thinking about things that happened last year. Yet when I close my eyes again, it starts all over again.  Sometimes I'll be driving and an ambulance will pass and the sound of the siren makes my heart skip a beat.  Not because it gives me a flashback of riding with Megatron in an ambulance (twice), but because my heart aches because someone's loved one is in there and I don't want anyone to feel how I felt those days in the ambulance.  Sometimes one of Megatron's toys will start to play lullabies and I cringe because it instantly takes me back to sleepless nights in the hospital and Ronald McDonald House.  I have practically jumped over the couch to turn the lullabies off just to make that feeling go away. All of these things combined have been a recipe for disaster.  Before I knew it, I was operating on just a couple hours of sleep a night.  I was exhausted and emotional.  Not a good combination when trying to keep up with a very busy toddler. 

The flashbacks of Megatron's medical challenges last year have been the biggest hurdle for me to face.  It's the hurdle that still causes me the most stress, but that hasn't been the only challenge.  Losing my grandma when Megatron was only 10 days old, finding out my dad was (to put it nicely) a jerk, then my parents' subsequent divorce in the midst of Megatron's liver failure, being forced to quit my job and take on the incredibly important role of being a stay-at-home mom, a role I never really wanted, have all played a part in trying to tear me down lately.  Because they all happened in rapid succession, and because Megatron needed me, I didn't have time or the ability to process any one of those major life changes.  And that is where I am now.  Taking each of those things and trying to pull them to the surface so I can face them, process them and move on.  Because I don't want to let any of these things make me bitter or angry or sad.  I want to accept that these things are part of my story and will make me who I am, who I have yet to become.  I want them to make me stronger and happier and more appreciative of my life rather than making me afraid to close my eyes at night.  It's going to be a process but it's a challenge I'm ready to take on.  A challenge I NEED to take on.

In working through some of these things, I confided in the counselor that I sometimes feel like a fraud because everyone seems to think I've held up so well given the circumstances.  On the inside though, I feel like I'm falling apart.  She pointed out that in true, type-A personality fashion, I am harder on myself than anyone else.  Knowing about my blog, she suggested maybe it was time to "fess up."  That if I shared my experience, I might feel better and in the process, it would help me move on from some of the things that have been troubling me. She also pointed out by sharing my story, just as I have shared Megatron's story, it may help someone else face their fears, ask for help, realize they aren't alone in being haunted by a trauma.   That certainly helped me face my own fear of sharing what has really been going on.  PTSD is absolutely nothing to be ashamed of.  It is real and valid and scary.  I was still reluctant to share but I also realized that by "fessing up," I can let go of some of those guilty thoughts of feeling like a fraud.  

In order to move on, I have to deal with these past traumas that were all very much out of my control. It's been a couple months now since I started working with the counselor and it's certainly getting better.  I still have a lot of work ahead of me but like I said, this is a challenge I am ready to take on.