I am in the middle of a nine day stretch on my own while Jay travels for work.  As much as we all miss him and look forward to his morning and nightly calls, I am really happy that I can do this again.  You see, Jay’s job has always involved travel and the boys are used to him “flying” to meetings in other countries.  Over the past year my parents have come down when Jay travels and we are appreciative of the help.  But, this week I wanted to do it on my own.  This is a slice of our old normal that I used to be frustrated about and this week am simply loving… in a semi-exhausted way.

When Jay travels we haul the little trundle bed mattress into the master bedroom and the boys alternate sleeping in the big bed and the little bed on the floor below.   We fall asleep together talking in the dark about basketball, frogs and the country of Chad, which Bennett told me is also a river. Giggles.  It’s a sleepover every night.  I love it and I love that they do too.  After they close their eyes I read late into the night as I listen to them breath and dream.  Some nights I just stare at them in love.

I hold them close and whisper how much I love them.  Hoping these words will sink deep into their sub conscience.  Locked away in the deepest part of their being to become something they feel in their soul without having to actually hear.  I love you with all my heart and all my soul… forever.

Last night Bennett woke up with a night terror.  You know, when they cry out with their eyes open but they aren’t really there. He was sobbing and confused.  I held his shaking body close and sang “Hush little Baby”  like I did when he was tiny.  His body relaxed in my arms and he held my hand as his blank eyes closed and the calm breathing of sleep returned.  I held him until my arm fell asleep- whispering how much I loved him over and over and over.   Like all parents, I can’t stand to see our kids sad or hurt. As I held him last night I was sick to my stomach thinking about how this damn cancer was going to bring sadness we can’t hush.   And that one day I am going to cause my sweet boy this same kind of out of body sadness by leaving this earth.    Squeeze tighter.  Hold on to right now.

When I think about the sadness cancer is going to cause my three boys that’s when I get the maddest of all.  That’s when I get really pissed off.   When I think about what it has already robbed from our family and what it is going to take away from us in the future I am infuriated.  But, I have to let go of the anger and the pain of tomorrow before it consumes me with paralyzing fear.  I hold on to today.  Literally hold on… to the ones I love, to the leash as I run with our dog keeper, I hold on to the “crow pose” in yoga. “Hold on!” I yell at the boys when I just want one private moment in the bathroom.  Holding on for dear life.    Clinging so tight to my dear life that I don’t take one moment, day or week on my own with the boys for granted.

Hush little baby.  Know that mama is here… For now my physical hug surrounds you, but you have my heart and soul forever.

Hold on.
Lara

6 years ago we threw a New Years Eve party to mark the end of the year “I had cancer” and celebrate all our hopes and dreams for 2009.  It was the happiest New Year of my life.  I remember feeling so overwhelmed with gratefulness and so eager to see what the future held for our little family.  I remember our new home brimming with friends and laughter.  I was on top of the world.  Of course, the year that followed was not full of pure joy. We lost Jay’s dad, Jay was re-located to Louisville, KY, we had to move from that amazing new home and say good-bye to dear friends.  Despite the tears, we faced these challenges with hope for the future.  Knowing we would make the best of whatever comes our way – just as we always have. And, we did.  Louisville, KY ended up being a wonderful place to call home.  We found another great house and made new friends while maintaining special friendships. We found a way to keep Jay’s dad’s memory alive by continuing traditions he loved and telling the kids stories of him regularly.  Life continued in beautiful, hopeful ways.

Fast forward to New Years Eve 2015.  On a night I usually love – a night of reflecting and setting goals and celebrating blessings.  Jay poured me a delicious glass of my favorite champagne and I sat in fear of what the year ahead held.  I couldn’t shake it.  I told myself turning the calendar to 2015 was going to be a turning point to allow myself to feel the same relief and joy and excitement I had when I “beat” breast cancer the first time.  But, the relief didn’t come.  The anxiety, sadness and fear of the future held so tight that it was hard to breath.  I have stage 4 breast cancer.  There is no cure.  Time is my biggest gift, yet each day that passes also means I am closer to the next progression, the next drug failing, the next bad news.  Shake it!  Shake it! Focus on right now.  Focus on the joys of life today.  Many days I can do this.  But, honestly, not all the time… life has changed for us.  Permanently.

Yet, life is great for us right now.  We surprised the kids on Christmas Day with a box within a box, within a box holding clues that lead to a Christmas day surprise adventure to Florida complete with Disney, fishing and the beach. As we walked to our plane on Christmas afternoon Bennett grabbed my hand and beamed from ear to ear.  I looked down at his freckled face with pure joy. Unfortunately we all had a cold at one point on the trip.  Mine coming first a couple days before Christmas and lasting the whole trip.  But, we didn’t let that deter us.  We filled our days with fun and were all asleep by 8:00 most nights.   We had great seats to see Cirque de Soleil in Downtown Disney and Wills slept below the death defying trampoline show – exhausted.  But, its hard to let the “crud” keep you down in the warm sunshine.  We went on two fishing charter trips – caught 5 new species (the boys have a running list).  Ended our trip on the beach for several days.  We sat on an empty beach catching waves and pompano.   We were a family on vacation – dealing with colds.  Not a family living with stage 4 breast cancer.  It was amazing!

As we were going through security  on our way home (and commenting on how smoothly it was going) Wills’ bag got stuck in the xray machine.  People were scrambling around- we weren’t sure what was going on.  Suddenly several “important” security guards came over to us concerned.  At that same moment I remembered the souvenir Wills had from disney… an indiana jones pistol.  In his backpack. Long story short- don’t bring a toy gun on an airplane.  The gun was confiscated, we were questioned and sent back through the now insanely long security line… luckily still making our flight. Instead of freaking out, we all kept our calm.  We told the kids that we all get bad news and are put in frustrating circumstances.  Its what you do with the situation that is a true test of character.  Getting upset and stressing out only makes the situation harder…  They are going to learn this lesson repeatedly in their young lives.  As we waited in the long line explaining this lesson, I just kept looking at their tired eyes and wishing airport security lines were the worst of their worries…

Now here we are, welcoming in a New Year and I sit in fear.  Fear the persistent pain in my back is a new tumor that didn’t show up on the PET scan.  A friend of mine recently had this happen.  Her clear scan didn’t bring relief and pain continued so she requested an MRI which revealed new cancer growth too small for PET to detect.  I plan to ask my doctor about this at my next appointment.  Years of cancer teach you how to listen to your body and mine doesn’t feel right.

Yet, on New Years Day Team Mac went for a hike in the sunshine.  The boys threw rocks on the frozen streams for an hour, we made obstacle courses from fallen logs and tried our agility on our own parkour course… (insert hilarious laughter at me trying to shimmy up a tree).  When we got in the car to drive home I decided to run home instead and spent the next hour navigating the muddy trails- winding my way home on an intentionally indirect route.   The rest of the day involved an insane amount of football, nacho average nachos and family soccer game.  By the evening I was so sore a warm bath was my only relief, but I was happy.

Yet, as I laid in the warm epsom salts I wondered how long I would be able to keep up with “team mac” – how long I would be able to keep doing the things i love.  Keep being the mom I want to be.  The mom who climbs trees, balances on logs and chases her boys around the woods.  The fear slipped over me like a new layer of skin and the paranoia, sadness and fear took hold of the joys of hours earlier.

This is the tedious balance of life with stage 4 breast cancer.  Joys and gratefulness / fears and paranoia.   I wish turning the calendar to 2015 meant I had found a way to rise above the worries.  I wish I was writing a post about hope and fresh starts and facing my fears with determination alone.  That I knew 2015 would hold a miracle of good health. Of course, all these feelings are within me, yet they are mixed with sadness and anger.  That’s just the ugly truth.

As I look back I am overwhelmed with thankfulness for our beautiful life.  As I look forward I know there is more beauty in store for us.  Our story isn’t done YET!  I didn’t choose this awful balancing act nor would I wish this journey for anyone.  But, it is the path set before us and we will face it with joy and fear, prepared for bad news and good news.

Thank you for your encouragement and support on our journey.  This is a place for me to reflect and express my feelings and it means a lot to me that you are interested. I wish you and your family a wonderful 2015- Not a year free of hard times… that’s not reality.  But a year full of resolve to face the hard times with patience and determination.  And clarity to see the beauty in life especially when things aren’t wonderful.

And always, always hope.
Lara