Experiencing Grief From A Mother’s Perspective

It was November 2014, when my son, Caleb, was diagnosed with T-cell Acute Lymphoblastic Leukemia (T-ALL).  As you can imagine, my world was turned upside down.  Whatever you imagine it feels like to hear your child has cancer, it’s that – and more.  I cried and prayed nonstop for the first few months.  I still pray nonstop, but have since become able to stop crying so much.

You really experience the stages of grief as you begin to process such devastating news:  sadness, anger, sadness, bargaining, more sadness and then even more sadness, but somewhere between it all, you start figuring out ways to come to terms with it and figure out how to move forward.  Not necessarily because you want to (because all you want to do is cry in the corner of a dark room), but because you have to.

You have to because you have a child who really needs you.  He’s scared and confused.  Falling apart won’t help him feel better or get better, it will only scare and confuse him even more.

You have to because your other kids don’t only need you, but they need you even more than they did before because they’re scared and confused too.  Not only that, but you’re gone more than usual now (handling paperwork, hospital visits, etc).

You have to because you value your marriage and pulling back isn’t going to make it stronger.

You have to because you value your friendships and distancing yourself isn’t going to make those stronger.

You have to because you know life is beautiful.

You just have to.

You fall apart for a little while as you process hard news (this is healthy and okay!  Cry every tear your body is capable of making!), but then you stand up, dust yourself off, and begin putting one foot in front of the other even if you’re doing it on auto-pilot, and even if you’re not even fully sure what your feet are even doing.

At diagnosis, we were told Caleb has a treatment plan spanning about 3.5 years.  At the time, this number may as well have been 100 years it felt so far away.  Now he has about 1.5 years remaining before he is done with his treatment.  Much of the first year was spent in the hospital almost nonstop due to more intensive treatments.  Essentially living at the hospital with three other kids, a photography business, school (mine and theirs!), and activities seemed almost impossible.  At times it felt nearly impossible.  And heck, even now I’m not totally sure how we got through that year while maintaining the things we were doing before, but we did!

The advice from our doctors was to keep life as normal as possible.  They suggested continuing our normal activities because it would help prevent us from becoming depressed, and they also said that it would help our other kids to not feel like everything has changed.  It would keep us all propelling forward during a time that I wanted to shut down.  Knowing they felt this was best helped fuel my determination to keep it up.  I think the doctors are onto something.  I don’t think it would help anyone to let this consume us and our family.

While in the hospital so much for that year we took life one day at a time.  Some days, one hour at a time, one minute at a time, and some days, even one second at a time.  Still do.

When things felt hard, I put myself into auto-pilot and put one foot in front of the other, and I prayed – prayed a lot.  Still do.  If you aren’t a prayer, pray anyway or ask others for prayer – it may help in ways you may not expect!  I regret not leaning on our support system more.  It doesn’t feel good to ask for help, and I know I didn’t as much as I should have.  Asking for help is hard, but those who love you want to help, and they can help in so many ways – emotionally, mentally, financially, physically, logistically, spiritually.

I’ve noticed that every time I start feeling upset or worried, I’m faced with two choices:  the choice to continue thinking that way and hole up into my own world, or the choice to shift my mindset, talk to my husband (who keeps me from going down the proverbial rabbit hole by overthinking things), read the Bible, and focus on the present.  And you know, sometimes it isn’t even a choice.  Sometimes I get sad even though I don’t want to be sad, but thankfully that has always passed as quickly as it came.  I try to make the most of every day and take life as it comes, and before you know it, things begin to adjust into a new normal again.

I recently watched C.K. Louis joke that the best father can give a kid 40% of their needs and even a not-even-trying mother can give a kid 200% of their needs.  I don’t agree with the statement (virtual fistbump to all the great fathers!) but I do think that mothers offer something very special to their children (and so do fathers).  When we are hurting, our family hurts with us.

No experience will ever be the same for two people.  Every person and experience is different.  This is just my personal experience processing one of the heaviest thing a mother can be faced with, and how I have processed it, experienced it, coped with it, and continue to cope with it, and I hope that pieces of it help you in your own journey.  Heck, as the future unfolds, I may find myself re-reading this to help myself!  I know some parents face PTSD years after the treatments.

Life is full of unexpected twists and turns.  We have all experienced trials and will continue to experience them.  When we do, it is important to keep going (or in the words of Dory “just keep swimming, just keep swimming, swimming, swimming“).

I am so happy to report that Caleb is in remission and feeling well!  He still has daily treatments but he is doing great!  He has taught me so much about life and given me such perspective.  He’s amazing.

Follow Caleb’s journey on Facebook and Caringbridge.