Need to Breathe

I need to breathe.

I need an open space out from under this cloud.  I am realizing as we near the end of chemo that that place doesn't really exist for us anymore.  So many parts of the cancer world seem overwhelming so you learn to deal in small doses.  The advice I mentioned before, "keep your head where your feet are"; I have really taken to heart..... but there are times you see the bigger picture and its just too much.

It hit me today.  The day started out simply enough.  The perfect early fall morning- beautiful Carolina blue skies, open windows, refreshing breezes, a hot cup of tea, and the kids laughing in the next room.  Carter was excited to have a friend coming for the afternoon.  When they arrived I received the gift of grocery shopping by myself.  It was a productive trip and as I drove home (listening to my music).  It hit me just how different it felt.  Taking Julia out requires a certain degree of hyper-vigilance.  Keeping her contained, covered, sterilized, and still happy and engaged is an ongoing challenge.  Our fleet of strollers and carriers (ours and friends'- thanks!) has made this easier, but it is exhausting- which explains why we stay home so much.

The hyper-vigilance becomes a part of you when dealing with a chronically ill or special needs child.  After awhile you forget that you're doing it and you just do.  But all of this takes its toll.  Several months ago when I first read The Guide to Childhood Cancer,  my jaw dropped in the first few pages when they talked about the physical response of the parents of cancer patients.  This was me.  In those first weeks after her diagnosis, surgery, and beginning treatment; I went through the exact cycle described in the book.  In those early weeks I had a kidney infection, viral fever, achiness, ulcer, etc. Where do all these come from? The combined stress hormones, lack of sleep, lack of water, lowered immune system, decreased appetite, and the long days of fasting for tests (When your toddler is fasting for 10-16 hours a day and you are the only one with them, you are fasting, too.).  I was shocked when I first read it, but in a way comforted that it was 'normal'.  As time has gone on, many of the acute symptoms have gone or at least come and go for now, and a few new ones have started.  At times it catches me off guard because I don't feel the stress anymore, but it's there.  This state of heightened awareness causes a slow release of stress hormones that strains the body.

As I reflected on being out without the kids I realized just how stressing it is on a daily basis.  I was able to think about groceries, sales, coupons, and meals instead of germs, contact precautions, sterilizing surfaces, and face masks.  I caught my breath for a moment.   

Now I don't want to sound like I have some illusion that I can control everything and prevent infection.  I don't at all.  The doctors even told us from the beginning.  Most infections are from germs present on the skin already that now have an advantage with the immune system imbalance.  However, quarantine does work to some degree and has kept us from experiencing the many illnesses brewing outside our home.  It is a well-proven fact that child-friendly zones like parks, playlands, grocery carts, etc. are hot beds for germs and we haven't partaken of these since last March.


As I drove home from the grocery store today by myself, I realized how different it felt to breathe...

So much is different now.  This is a part of our life forever.  It is a cross we have been chosen to bear, especially Julia.  It still astounds me all she's been through.  Most days, we take things as they come and rest in God's grace for that day, but some nights my mind reaches to the future.  Those are the hard times.  After the kids are asleep I have time to process what all of this really means for our lives.  As her next round of scans sits on the horizon, I can't help but wonder, is anything growing? has anything spread?  At times it is all too much.  We lost another Wilms' kid last week.  Sadly a number of these children succumb to the intense chemotherapy, not even the cancer.  Many had highly curable forms of Wilms', went through chemo successfully, only for more aggressive Wilms' to show up years later in new locations. 

When I hear their stories I can relate....too much.

I am still learning to live only one day at a time.  It is so much easier said than done especially for a planner like myself and for a mother of young children- you can't help but think about the future.  Don't we all dream for our children?  Cancer is now a part of our future.  This is a battle Julia will fight her entire life.  That is a sobering realization.  Every new set of scans, every new pain she complains of, every change in her health- you can't help but wonder.

I am learning to walk in truth and live in the moment.  God gives us the grace we need for today and today alone.  Tomorrow is a new day and we will greet it when it comes.  But some nights that is almost too much and hard to accept.  And God knew I needed to hear encouraging words and today Holly- a friend and fellow cancer Mom- felt led to post about putting on the full armor of God, everyday, every piece.   

We are spending the weekend with family at my nephew's 2nd birthday.  We are all looking forward to the chance to get away.  There are few places we can go, but a  few friends and our family have adopted the strict precautions that Julia needs for cleanliness, germs prevention, even delaying vaccines.  For this we thank you.  It means more than you will ever know.

It gives us space to simply breathe.