Wednesday, December 21, 2016

How to Help When you Don't Know How

It's so unfair.

Over and over in my head I hear, "It's so unfair." It is no fair that kids who have not had a chance to live their lives are fighting for their lives. Our children's cancer is not a result of a poor lifestyle choice or exposure to chemicals, no, it is only a result of a sin filled world. Again I say, not fair.

We picked up a sword to fight a new tumor just recently. We have been in and out of Stanford trying to decide on the next course of action on an inoperable brain tumor for a child who has an anaphylaxis response to the typical chemo protocol for that type of cancer. Yesterday was one of these appointments. I came home and put my feet up to check up on our friend family. One of my cancer mom friends who has been at our sides also fighting posted an update, they were also getting routine tests performed.

She relapsed.

No...I kept reading.

Three tumors...


months to live...NOT FAIR.

I knew this news would bring tears. Ugly tears. Before the news really sank in far I decided to ask our community to help me put together a care box for Ari's family. She is heading back to St. Jude on Tuesday for a month long inpatient chemo stay. Friends and community members all started jumping on the bandwagon to shower this family with love. This sweet Mama friend of mine often discusses with me the ins and outs of being a cancer mom. It made me reflect on help and how people think they are helping, how often there are no words so sometimes unthoughtful words escape. I know they mean well but they have no idea what our lives are like and how we feel. Here are my thoughts...

Not Helpful
"God never gives you more than you can handle."
- First off, that is not Biblical at all. Second, if that were true people would not commit suicide or need antidepressants / anxiety meds or die of a broken heart.

"I am praying for you."

Most Appreciated
"Can I pray for you right now?"
- A genuine prayer means the world!

Not Helpful
"Why do you need to fundraise MORE?"
- Would you like to see my stack of medical bills? Do I need to explain how my sick kid is a full time job?

"What do you need me to do?" or "What do you need?"

Most Appreciated
"Check your email, I sent you a gift card for gas / dinner / coffee."

Not Helpful
"Be strong" or "Hang in there"
- We already feel so much pressure put there by ourselves to be strong for our children.

"I admire your strength"

Most Appreciated
"You are not alone, let me help."

Not Helpful
"I know how you feel. My step mother's, second cousin, removed by marriage had skin cancer."
- Unless you are also a cancer mom or fought cancer yourself most Momcologists find this insulting. I just try to tell myself that you are trying to relate to me but honestly it is not helpful.

"This must be so hard on you! Do you need to talk? Or maybe a distraction?"

Most Appreciated
"I cannot imagine how you feel, can I pray with you?"

I hope you all know how much your love and kindness has meant to us. I know it is hard to know what to say or how to say it or how to help without making us feel like a charity case. I want you to know that we thank you from the bottom of our hearts for this community. The messages of hope, the help, the Christmas gifts have truly lifted our spirits in this hard time. Your extra help with Ari's box is just mind blowing! This post was meant as a window into our hearts so you can continue to love those Momcologists and be God's instruments of love in our lives. Thank you dear friends, we hope you have a Merry Christmas!

Friday, December 2, 2016

Energy Drain

The last week and a half have been Hell. I have relearned some harsh lessons and I am still reeling from the lack of empathy. I will not go into too much detail but I will say that I decided something this week, if you do not care enough about us to ask us how we are doing or check up on our cancer journey I can no longer expend energy on you. This includes family. That's it. Moving on.

We rushed home from Los Angeles to the Bay Area because Gracie's MRI was moved from Thursday to Tuesday. Emma had been screaming in pain on car rides at waking out of a sound sleep at night so I called her team at Stanford. They all agreed it was very worrisome and put us on an MRI cancellation list to be seen as soon as possible. We got home, I organized a hospital bag, slept for 6 hours then packed Gracie and Cora up in the car and headed to Stanford. Literally as I am walking
Gracie waking up from her MRI
back to Post Op Recovery I get a call that they want Emma in the OR at 6am the next day. A comedy of errors...Emma was 3.5 hours of Bay Area traffic away from me at Katie's house. So we finished up with Gracie and packed up the car to drive home to Emma. I unpacked and repacked the hospital bag, slept for 5 hours, and left at 3am with Emma and Cora to go back to Stanford.

Yesterday I was home and looked around...a mess of half packed and half unpacked on my floor. Laundry. Dishes. Empty fridge. Suddenly I was very mad. The trauma of the week flooded me in one swift motion while I drank my second cup of coffee staring blankly at a dirty sink of dishes. I was mad that people who should care and should ask say nothing. I was mad that I had spent 19 hours out of the last 36 in the car in traffic. I was mad that I do not have a maid or a nanny or a grandma to come help with this mess. I let the anger get the better of me and spent most of my day cleaning and pouting but mostly just hating my life.

The nurse let Emma push the buttons
I think after all that processing and pouting I have finally figured out that I need to be more aware of where I spend my energy. People stepped up in a big way this week, friends sent Starbucks cards and one dropped off dinner. Women I have never met in person helped buy Christmas gifts for the girls and prayed with me and sent love. Those are the people I want to cherish and expend energy on, not the ones who drain.

Last thing I will say is this, if you are reading this and wondering if I am talking about you it is not too late. Pick up the phone, ask to speak to Emma and Gracie and ask them how they are feeling. Send a "get well card". Email us. Anything. To everyone who helped in anyway thank you, from the bottom of my heart, thank you. Kindness and generosity kept me going this week.