Saturday, May 13, 2017

A Grief Cycle

My journey to becoming a mom has been filled with a lot of emotions but the one I never expected (and who would really?) was grief.  The amount of grief that has surrounded me since becoming a mom is undeniable but yet here I am, fours years into it and I'm still trying to manage that grief. Like my PTSD symptoms, the grief sneaks in when I least expect it.  The pool where Megatron takes his swimming lessons has become an emotional minefield for me lately.  There are several women who have toddlers in classes during the same time slot at Megatron and they also have infants.  While their big kids are in the pool, they are always chit chatting with each other about how old their babies are and what milestones they are experiencing.  Some days I just feel left out because I appear to be the only mom there with an only child.  And then some days my stomach is in knots, I have a lump in my throat and I hold back tears the entire time he's in the pool.  When class is over, I rush Megatron out of the pool, to the showers and then out of there as quickly as I can so I can redirect my attention.  Why?  Because those moms are experiencing normal, healthy babies and I completely missed out on that experience.  One week, I overheard a woman tell another that her baby was 7 weeks old.  My first thought?  Megatron had his first major surgery when he was 7 weeks old.  Another week, two women each had a baby on their laps and the babies were cooing and smiling and interacting with each other.  The babies were both 6-7 months old.  For me during that time, my baby was in acute liver failure, was living in the hospital and was waiting on the only thing that could save his life, a liver transplant.  He rarely cooed and smiled.  He was isolated to his hospital room or our house so he wouldn't get sick so there was no interacting with other babies. Another time a mom was sharing how her baby had a low fever and mild reaction to a vaccine and it was so scary.  In my head I was rolling my eyes .  Scary?  Scary is being told that your child is going to start vomiting blood and when that happens, call 911 because babies can bleed out in a hurry.  Scary is your baby being on a transplant list and fearing that the organ won't come in time.  I've even had a similar reaction to someone sharing their delivery experience.  I was very unexpectedly induced 5 weeks early.  My delivery was the exact opposite of what I had hoped for.  My pregnancy ended in fear.

Once I shake off the tears, I'm almost always very agitated for several hours because I'm angry that I am still experiencing these emotions.  Megatron is going to be four.  He's (relatively) healthy and thriving now.  Why am I still so rattled by others having a completely normal parenting experience?  I'm angry because I don't what his medical history to turn me into a bitter person.  I am genuinely happy for others when they welcome a new baby.  I enjoy hearing new moms talk about their babies, because yes, I did experience a few of the normal things like diaper blow outs, nursing challenges and sleep deprivation.  I don't ever want a friend who is a new mom to avoid talking to me about their babies.  I don't ever want to dismiss the fears a fellow mom experiences with a new baby.  They are legitimate and real.  I just have such a different experience and perspective though that I tend to struggle with certain topics.  Sometimes I feel like I can't relate to other moms because of the perspective I have.  I feel like I don't fit in.  But because Megatron is thriving now, I don't really fit in with special needs moms either.  We still have our challenges but they are minor compared to 3-4 years ago.  They are minor compared to what a lot of other parents are facing now.  But because of this weird place in the middle, it can be isolating.  Which is probably why I still struggle with so much of this.  I'm alone with my thoughts way too much.  I even have random guilt because Megatron is doing so well.  Why us and not someone else?  Why is another post transplant kiddo having so many complications when we have faced few?  It's this awful cycle I get in sometimes.  It's like your stereotypical "mom guilt" but kicked up a few notches.  I feel guilty for thinking not so nice things when people have healthy kids.  And guilty when I realize I have a somewhat healthy kid now and there are so many parents out there who are waiting for an organ for their kid or aren't having as much post transplant success as we have had.  It's maddening really.

While I have my moments when I am mentally rolling my eyes about someone whining over a normal, non-life threatening kid experience, I feel like our experience with Megatron has taught me empathy.  I think before becoming a mom, I was able to sympathize with someone else's struggles, but now, I am able to empathize.  I am also much more aware of how seemingly normal, every day experiences can look very different to different people based on their perspectives.  Mother's day is a great example.  Pre-Megatron, Mother's Day was simply a day to honor my mom; to shower her with some extra love and attention.  But now my heart seems to feel all the friggin' feels, all the time.  Now it is not just a day to give extra thanks to my mom and for Megatron to hopefully one day learn to do the same for me.  I am now very aware that it's a day that may be extra sensitive for those who want more than anything to become a mom but haven't been able to yet.  It's a day that is painful for those who have lost their mom.  It's an excruciating day for the mom's who have lost their children.  Instead of just thinking about picking up a Mother's Day card for my own mom, I want to go hug everyone I know that is experiencing a situation like I described above.  While empathy is a good thing, I may have it to the extreme and it may not be a healthy emotional weight to carry around.

So here I am in this weird cycle of grief and guilt.  After 2 years of therapy, I'm finally able to sleep most nights without having horrible flashbacks to that first year of motherhood.  I don't hyperventilate when I see a medical helicopter or hear and ambulance siren.  That's serious progress in regards to my PTSD diagnosis.  I do still struggle with washing my hands at the hospital because the smell of the soap still transports my brain to back when we were basically living in the hospital. I'm at least able to actually use the bathroom at the hospital now rather than trying to avoid it at all costs so that's progress too. But its finally time to tackle all of this grief so it doesn't consume me.  I don't want to pretend the last four years didn't happen and I don't want to waste my time and energy wishing that it had all gone differently but I do want to lighten this emotional weight.  It's heavy and I'm tired.  It's time to start letting it go.  I need to start being a little kinder to myself and acknowledging that what I'm experiencing is a normal reaction to the challenges our family has faced over the last four years. Not only is is normal but there is nothing WRONG with feeling they way I have been.  I've been focusing too much energy at being angry with myself for feeling this way.  Like I didn't deserve to grieve because ultimately my child did survive.  How can you grieve someone you didn't lose?  Turns out you can grieve more than the loss of a person.  The loss of a certain experience can be just as emotionally painful.  I haven't had the motherhood experience that I had expected so it's time to accept that, grieve the loss of what could have been and keep moving forward.

If acknowledging that this grief is normal is step one, then step two must be admitting my feelings to others.  I try to put on a strong front most of the time but the reality is is that there are days that are a challenge from the time I wake up until I crash at night.  The reality is that there are some weeks I don't want to take Megatron to swim lessons because I don't want to hear the other moms gush about their healthy babies.  Also part of my reality is to plow ahead no matter what.  I refuse to let my emotional baggage to hinder my ability to parent (I don't always succeed but I don't quit either).  In my opinion, it's not an option for Megatron to not take swim lessons so I sit there in the waiting area like a ball of nerves for 30 minutes every week.  My therapist and I will continue the hard work so that I can maybe one day sit there and feel relaxed.  Or maybe even coo at those cute babies or strike up a conversation with their moms.


  1. I completely understand the soap thing. I will never forget the smell of "hospital soap." They must have a monopoly on doctors offices and hospitals, because I haven't found a Pittsburgh doctors office/hospital that doesn't use that same soap.

    ~ Kristin Lundy

  2. I sat here for a bit trying to decide what to say in my comment, but I am not a very eloquent writer...I have a hard time putting into words how I feel, so I'll keep it simple. You are a brave, strong, loving mother, and I can tell from your blog that you're doing a great job. I can only imagine how it feels to process the emotions you've had to process. Thank you for sharing your journey - you have been and will continue to be in my prayers. And to think I stumbled upon this blog way back when it was "just" about running. :)