Wednesday, April 10, 2013

Live LIFE what is worse? 

Having to stand by your cancer warrior's bedside and see her laying still, eyes closed, pain meds pumping, body ravaged with scars and bruising while doctors, nurses, priests all check in on her (and you) to try and figure out exactly where she is on the "timeline of her life".

Or, having to sit in a room with your husband and then your teens and talk about when, not if, the final chapter of life plays out should it be in your home, the hospital or hospice?  I suppose it should make me feel better that the palliative care docs start out by telling us that years ago many children died young from cancers and heart disease because we didn't have the meds, technology, drugs, etc. to keep them alive.  I suppose I should take comfort in knowing that among us walk adults who somehow survived the death of a sibling way back when. I suppose it should make me feel better that the the team tells me I have wonderful, loving, caring teens and we are a great family.  I suppose I should take comfort that all this is preparing us for the inevitable, but honestly this is not a conversation I think anyone should ever have to be part of least of all my teenagers.

So, where am I at? How am I doing?  As I tell our medical team, I'm still toeing the line.  I'm still not sure which way this is going to play out.  I know we've been here before and some of those times it has been much worse.   I find myself "hoping" instead of "BELIEVING".

As my brain shifts and filters and processes I find myself asking why I hope instead of BELIEVE?  I guess there is some part of me that is doubting Lisa can walk out of there because of the 3 strikes your out mentality. Honestly, how many times can you expect to cheat death and outlive science?  How many times do you rally only to end up back in this same spot facing the same discussions and decisions?  How much pain can one little body endure?  How much do you push to get her up and moving if inevitably she is going to die of this blasted neuroblastoma?

And there it is...inevitably....the word that right now sparks a little fire in my brain.  It is inevitable that we will all die.  So, should we just off ourselves now because sooner or later we are going to die and might as well take the short road?  Of course not.  We live.  We wake up every morning and face our day, good or bad, and seek to LIVE life. We live by feeling, doing, and being with others and making our mark on the world.  If that living can only be done in small increments every day, do you still fight for those moments?  If those moments are pain free, filled with smiles, giggles, laughs and feeding your babydoll, yes, you fight.  Do you BELIEVE?  You do and you make every moment count. 


Anonymous said...

I have been following Lisa blog for over a year. Your courage and strength is amazing. With the new spring here always brings new hope. I do not think we can ever not have a glimmer of hope even in our darkest days. Like you I am choosing to believe Lisa can beat this again and rise up to enjoy another spring/summer. I loved when you apologize for not blogging because Lisa and your family were to busy with summer plans and fun. I hope that is the case again. All my prayers and hope are sent for you for a miracle of another fun filled summer. "Do not go gentle into that good night Rage Rage aganist the dying of the light". Kristen McIntyre

Lynn Zott said...

I can't imagine that *anything* would make *anyone* feel better in your situation. Some things are simply beyond comfort.

I am here for you, in my way, as always. Sending loving, healing energy, keeping you all close in mind and heart. If I can do more, just ask. xoxo

Louise Smith said...

My friend, I know you know I know this pain. The true sorrow of knowing you will outlive your beloved child, the striving to take the weeks, days and ultimately minutes with joy, and the hope that once again her earthly life would be spared. We are all praying for all of you, the dreaded decisions and a miracle. We are also praying for peace if the good Lord chooses to take dear Lisa home. In this Easter season, we know He has won the ultimate victory over death and that victory is ours. Our hearts and prayers are with you and we have many of our friends praying as well. Call or text if you want to chat or if my teens can support your teens. Bridget the Brave, pray for your friend, Lisa.

Krystle Kaslowski said...

I have been closely following your blog since we attended one of Lisa's Blast fundraisers and I was graciously asked to play "Belle". I have never been more touched by an individual in my entire life! Your little girl is one of the most amazing, strong, and beautiful (just to name a few) people I have ever had the pleasure of meeting! Hold on to your hope, because miracles do happen! I have been praying like crazy, and will continue to do so! I am so thankful to have met Lisa, and your family! God Bless!

DLBO said...

We are praying for you all.
May God wrap you in His loving arms.
~Dorinda (Bonhard) Otto
Bellevue, WA

Anonymous said...

I am praying for all of you. I am so, so sad to hear all of this. Stay hopeful and strong. May God be with all of you and bring you peace. Let me know if there is anything I can do -- I'm available for driving, cooking, whatever.
Love, Debbie and Bob

Honored said...

You don't know me and I have only heard of you through my church on occasion. When I first came to know of your family's story it was through a short movie (I believe on YouTube) we showed the kids in our youth group to help strengthen a point we were teaching that day, a long time ago. I sat there in amazement. Trying to conjure what emotions I felt for you, what emotions you yourself were dealing with, what I could do to help, etc. My mind couldn't comprehend any of it to a clear enough point that I could consider satisfied as I'm sure you've struggled with as well. All I know is that it affected me to this day.
I'm not sure what to say other than the outcome of my contact with your story has led me to reach out a little farther, give care to someone I might not normally have noticed, and just spread an extra bit of love to those around me whenever a thought of your precious little girl comes to my mind. No vital signs will ever say she's not still alive in my heart. Her "gift" has been passed on to me and to every person I'd help using her love.
Your story, strength, and loving little girl have touched me now again as I read through this outlet. I thank you for bringing us closer to you and your determination, strength, love, concern, belief... Most of all I thank Lisa for helping me to become a better person.