Survivors Guilt

Appropriate medical terminology aside, Nora is a survivor. I am not allowed to tell you that she is "in remission" and I can't say (no matter how badly I want to) that she is "cancer free," but what I can tell you is that I am thankful. Nope, I take that back. I am thank FULL. Every fiber in my being is full of thanks and praise to my God that she is still here THRIVING.

Daddy Daughter Dance

I need to say that out loud and in writing, because the next part of what I need to say may not be what anyone expects to hear...

Survivor's Guilt is a real thing. 

For every ounce of thankful and grateful, I have some sadness also. In a world where go fund me pages, facebook groups (including Nora vs. Neuroblastoma), and viral images are at my fingertips, I find it increasingly hard to un-know unspeakable tragedy. I cannot un-see the images of babies and children who did not receive the wonderful news our family did on November 23, 2016. I cannot un-hear the news of  a child's passing or a devastating diagnosis. I cannot stop imagining the hurt and grief of bereaved parents. This side of treatment isn't automatically an easy life.

First Haircut

There is so much uncertainty. So many statistics. So many questions unanswered.

In my experience, there are 2 types of survivor's guilt. There is the obvious:
Why couldn't it have been me instead of her?

I think every single parent of a child with serious illness asks this at least once. You would take their pain and suffering in an instant to heal them. You so desperately wish it was you in the hospital bed, throwing up, getting poked with needles, going into tunnels of radiation. I know every parent would take it for themselves in a heart beat.

 

But the other side of survivor's guilt is possibly the one that might sound strange, and I fear it may make me sound ungrateful, which is NOT the case.

I find myself wondering sometimes...why did Nora make it? Why did her tumor shrink 97% in 3 months, and some kids go through the same treatments and hear their cancer spread even further? Why are some parents planning funerals, while I get to watch dance recitals and paint rocks on the back porch?

 

It's hard to describe feeling simultaneously grateful, scared, sad, and guilty all at the same time. They are each incredibly complex emotions, and some days it is overwhelming to feel them in full force all at once.

No one likes to read about a sick child. No one smiles at a child's funeral. But for me, when I read those posts or stories, when I hear about those brave and beautiful children that didn't make it-those emotions rush into my body in shock waves. Sometimes I can literally FEEL a piece of me die inside. I desperately try to redirect my feelings to gratitude. I search for a way to turn my empathy into something constructive, something helpful, something meaningful. It pushes me to do something real-something to honor that child and that family. Sometimes, it pushes me to make a donation somewhere, to take my girls somewhere and make memories, to plan a random act of kindness. It gives me the drive to create good out of a feeling of true hopelessness.

Delivering chapstick on Diagnosis Anniversary #3

 

 

Survivor's guilt is a strange feeling. It is complex and truly hard to describe. I imagine there are other parents out there who have felt something similar. Who feel a bit obligated to make the most of every single day with their child(ren). To look at life through a different lens than most parents. It's the kind of feeling I don't think you can understand unless your child has faced death head on. Being forced to imagine your life without one of your children is a completely humbling and sobering experience. It changes absolutely everything. Forever.

So, to all the parents out there who know this feeling in some capacity-I know it's not an easy road to travel. It can be exhausting and overwhelming. But, I also know that you are grateful beyond words that you are experiencing it. Because the alternative is unbearable. The alternative is unimaginable pain and grief that we will do anything to avoid. The alternative is your worst nightmare coming true.

I know that the plan in place for Nora's life is greater than any I could have imagined for her. I truly believe she will change the world, and some small ways, she already has. I see and feel the way my girls connect with people of all ages, and it makes me realize the magnitude of being their mother. God certainly knew what He was doing with those two, and most days, I marvel at the fact that He chose me to be their mom. My grateful heart beats for them.

 

I gladly bear these complex emotions. I don't self loathe. I know my blessings are endless and my life is full. But sometimes, it makes sense to tell others what this life is like. Maybe to help them understand. Maybe to get it off my chest. Maybe to try to help another mom or dad in some way feel less alone in their emotional journey through pediatric cancer. Maybe it will give even more purpose to Nora's fight. (I am always looking for that!)

 

 

The song that was written for my Nora Beans...