Monday, June 13, 2016

Momcologists: I Will Be Their Voice

How are you doing?

No one wants to hear a real answer.

Not unless she is also a Momcologist (cancer mom). She doesn't want to hear the real feelings, what is really going on, the bills you can't pay, your just keep those to yourself.

I have a lot of Momcologist friends. Once we were thrust into this world I found myself having little in common with my current group of friends. Some disappeared, some tried to help, some did not know what to say or do, only a couple stepped up in a huge way. I drifted away from most relationships and discovered solstice and comfort in the arms of other cancer moms. Over the last three years I have asked, "how are you doing?" to them and knowing I want a real answer I have heard some horrible stories. I decided it was high time to put an end to all this silence. These are stories and things that have happened to my community I have kept it all anonymous,

- Many of us end our marriages. Some stay together for the sake of the kids but lost each other somewhere in this mess. Some drifted to other arms, some fell into a bottle and never came out, and some just drifted. I hate to say that the statistic of divorce or separation among my cancer friend families is about 60%.

- We can't pay our bills. Lets just put aside the hundreds of thousands in medical debt and focus on just normal bills. We can't pay them. Why? Because when our kids got sick someone had to be a full time parent / care taker. 100% of the families I know this was the mother. We have to stay home full time so we can spend endless hours on the phone scheduling appointments, drive our kids for hours and hours to specialists that are too far from home, live in the hospital with our child so a guardian can watch their vitals and pray, homeschool our kids since they miss so much school from appointments and are immune so so many reasons. My point is we all fell to a single income. Anyone will tell you it is really hard to raise kids on a single income, then add all the extra travel expenses and co-pays for visits or medicine and you have a recipe for disaster. Statistically 1 in 11 of us will file bankruptcy, I think that's is low because to file costs money...oh the irony!

- We are not okay. We spend hours crying alone. We put on a brave face in front of our children as the doctors describe horror then we retreat to the bathroom to throw up and scream. We lost weight, we gained weight, we developed health conditions from stress, we are on antidepressants, and anxiety medication. Many of us have had suicidal thoughts.

- We try to prepare for the worst and imagine our child's funeral. What would she wear? Would people come? What would I say in the eulogy?

- It is never over. Even if our child survives we live in constant fear of a relapse. Every fever, every bump, every rash is cause for concern. We panic at every MRI, lumbar puncture, and appointment. Life never goes back to normal. Ever.

- We are highly insulted that our children only get 4% of cancer research funding but even more enraged that no one cares.

- After 3 months, 6 months, a year...people stop caring, praying, and offering help. So many fundraisers go unattended. People look the other way. Friends and family judge you for not working.

- We lose our homes and cars in repos and foreclosures. Banks do not care if your kid has cancer.

- Some of us do not have help. Family doesn't live with us, babysitters cannot be afforded, grandparents do not go to chemo with us. We do it all alone. Sometimes pulling over in a corn field on the way home to have a panic attack.

I wanted to share this with all of you because it hurts to hear these stories from brave women that I love dearly. I will be their voice, I will speak. Why? Because I want you to pay attention the next time you see a friend who has a cancer kid. Ask her how she is doing, offer to babysit non cancer kids to give her a break, offer to pay a utility bill, stop her and pray for her right then and there, show up to her home with a pound of coffee and a bottle of wine, demand more funding for our kids, donate stuff to children's hospitals for the mothers (like leggings, coffee cards, reusable water bottles, books for her to read bed side, lotion, make up, adult coloring books...) but most of all I hope this opens your eyes to our world. Although I love these women I pray you never join us.

Thursday, June 2, 2016

the day Emma met Hope

Today we took a trip out to meet puppy Hope. She was a teeny little one week old ball of love. Her eyes were still closed. Sarah, the breeder, placed Hope in Emma's hands and we took this picture. As Auntie Andrea said, in that moment you can actually see Emma holding her future. Freedom, peace, love. All of that in her tiny little hands. Hope is so much more than a puppy. She represents a new life for Emma. Help navigating public places, comfort at night when she has her night terrors, a constant companion who will provide her friendship and love.

It means so much to her but mostly it means a lot to ME. For these last few years I have watched Emma suffer greatly. I have placed her limp body in the arms of surgeons, I have held her angry body as she goes blind slowly and does not understand what is happening, I drove her all over our state seeking the best care possible and 2nd / 3rd/ 4th opinions. So much of this has been out of my control. I could not perform the operation myself to make sure it was done right. I could not kill the tumor. I could not stop her nightmares. Most cancer moms or "Momcologists" will tell you that we feel helpless. We wish we could do more. Well now I can. I have a positive outlet for my energy. I will train this dog and it will help Emma. For once I have a real, tangible thing I can do that will have a lasting impact on my daughter.

Hope is named for what she is, she is hope to us. She represents all the hope I have for Emma in being a peaceful, mobile, and self sufficient adult. Thank you from the bottom of my heart for helping us provide this for Emma. It means so much!

Ways you can help:
- Prayer, this will take a ton of time and energy!
- Connect us with trainers
- Fundraise with us! We have a LuLaRoe party next weekend, info on our other blog post.
- Pass down dog / puppy things. If anyone has gently used doggy things we will happily take them for Hope!