Saturday, November 15, 2014

Mollie's top ten list

Dammit, Bulldogs, we were supposed to be in this together! Oh well, it was fun while it lasted. #hailstate!

As I start this post tonight, I expect many of you will want to retort with comments to not be morbid and to keep on keeping on, but I'll politely ask you upfront to refrain as that's not the point of my post at all, so chill.

Two weeks ago I found out my first chemo wasn't working. We've had to change the game plan a bit and I'm now on a new chemo. We're far from the giving up stage, but there was something that clicked with me that Thursday, and I think it's important to share. A lot of things clicked, actually.

When Dax was in the NICU I learned about impossible hope. It's that beautiful hope that no matter what, someone has to be that one percent. Someone has to be the one that overcomes the most insurmountable of obstacles. With Dax, I hoped he'd be perfect. Healthy, whole, brilliant, and perfect. Over time, my hope changed to gratefulness for this amazing little boy I have, but the hope is what got me through the hard parts.  And look where we are today! He's kinda healthy; mostly whole. I think he's brilliant. He's ridiculously and maddeningly stubborn and I wouldn't change him if I could. (Okay, maybe I'd prefer him potty-trained.) He's perfect in his imperfections, and he's brought good into this world by being different. What a huge blessing it is to know him.

So, in my own life, we know the odds suck. We've known that since the beginning. I'm a planner, so since Day One I've been making sure I have all my ducks in a row. Funny thing is, though, you don't realize which ducks you need first until, oh holy shit, you have to put them somewhere.

Which ducks matter? Which ducks don't?

I realized quickly when I was diagnosed that there was so very much I wanted to have done, just in case. I've had a living will for years, but I needed to make sure it was legal and would stand up, just in case. I needed a power of attorney, just in case. I needed to have my paperwork organized, just in case. Those are the legal, easy things we should all have done no matter what, just in case.

I've wondered over the years what's better, dying suddenly, or slowly wasting away? I'm a previously mostly healthy 34-year-old, so I've pondered that question with the ultimate understanding that I'll live until 100 and no real fear of cancer or anything ridiculous like that. But suddenly, here I am, and I've been given the blessing of potentially knowing my own outcome. As a planner, this is pretty amazing ;) And I can still live with that impossible hope of knowing I can totally beat this cancer. Someone has to be that statistic; it might as well be me.

So, finally, this is what I've learned in the last few weeks and months. Here's what I never knew I needed to know, but I'm glad to get to know now. Here's what I hope you'll take from me:

1.) Get your legals together. Seriously. I don't care if you're 25. I don't care if you're 80. Don't put life and death decisions on someone else. Put on your big boy underwear, make your choices, and let your loved ones grieve without the added stress of trying to figure out what you'd want. Hopefully you'll never need it, but in case you do, don't be that asshole.

2.) I wish I'd traveled more. Not to see places; I don't care about places. I wish I'd traveled to friends' weddings. I wish I'd made it back home for more funerals. I wish I'd realized how much I'd missed out on by not showing up for important events because I put work first or wanted to save a few hundred dollars. From this point on, moments come first. People come first.

3.) I wish I'd been more me. I know, I know. I don't tend to hold a lot back, but I've spent too much time worried about what other people would think and not enough time just being who I am. I'm kinda proud now of this scarred-up belly and this bald head of mine and my religious and political ideologies that might not fit with everyone else. I wish I had more pictures from before, when I needed to lose 15 pounds and my hair was a mess and I was first getting laugh lines. I take lots of pictures now. If I'm not here tomorrow, I want my boys to have tons of pictures and videos to look back on and remember me and who I was. I want my boys to read my words one day and know what I stood for if I'm not here to show them.

4.) Speaking of my babies, that's where my ducks start lining up. I no longer care if they get average scores on their school IQ tests or if the teacher recognizes that they are, in fact, the most brilliant, beautiful children who have ever walked the face of the earth ever in the history of the world. I want to know they're provided for. I want to know that, no matter what, the resources they need for the rest of their lives will be available when they need them, be it therapy or specialists or adapted equipment. Realistically, Dax will need help the rest of his life. Ty may, also. I still have that impossible hope that they'll both suddenly turn 18 and be self-sufficient adults, but, seriously, show me any 18-year-old male that is self-sufficient ;) (You know my philosophy is that the penis is the handicap decal of the human body, right?) So instead of focusing on the right now, my gaze has shifted to the future. You know what's great? I was terrified when I first got diagnosed. I've always done all the mom things. I've done all the appointments. I've done the IEPs. I've got the training and the connections in the special needs world that Shep doesn't have. The kids NEED me. And they do. But what I have now is a peace that, no matter what, look at this support system we have. If I'm not here, I know beyond a shadow of a doubt that my family, friends, and community will pull together to help Shep and my boys will be okay. I know they will never need anything, and that's the best gift anyone has ever given me. Just promise you guys won't go away if I'm not posting on Facebook everyday ;) It may take a few years before the boys start posting their own singing and piano playing videos.

5.) You notice the folks who show up. Sometimes it's a card. Sometimes it's a visit. Sometimes it's a Kroger card. Sometimes it's flowers on the front porch. Sometimes it's a text or a call. Sometimes it's a purple stripper wig. Sometimes it's Vajazzles, and once even penis-shaped mashed potatoes. Sometimes you don't get the chance to say thank you right away, but you notice, and you're grateful. Thank you for showing up over and over and over again. I hope to carry the torch and continue showing up for others as you have for me.

6.) I'm not scared to die. I'm not scared to fight, either, but I'm not afraid to die, at least not anymore, and that makes the whole process so much more beautiful. I don't know what heaven is like. I think I'm going. I don't think I'm totally where I should be with God, but I don't believe anyone really is so I should be good statistically speaking ;) My God box has gotten so much bigger since the twins were born, and I believe I'm right where I should be. His grace is sufficient. I've found the more crap that gets heaped on my plate, the more I believe God weeps with us and understands, even if He doesn't change the circumstances. Who knows? No one. And that brings me peace. It's you people who are positive you have all the answers that scare the shit out of me.

7.) Speaking of which, stopppppppppp saying these things:
"This is all part of God's beautiful plan."
"God gives his biggest battles to His strongest soldiers."
"By His stripes, you are healed."

They don't help. Seriously. If I could rub my God lamp and make the Holy Spirit genie pop out and heal me, I would. God doesn't seem to operate according to my wishes no matter how much faith I have. People die every day. Good people suffer. Weak people are put into big battles. Shit happens. God is there. He knows. Sometimes He carries me; sometimes He drags me. He never sat down at His desk and said, "Now that Mollie is super chipper today. I should kill her. Muhahahahahaha..." I just don't think that's how it works. Don't be that guy.

8.) Which reminds me, I have atheists praying for me.I have Hindus praying for me. I have Muslims praying for me. I have Jews and Baptists and Methodists and Catholics praying for me. I have people sending good vibes and positive thoughts. I treasure them all equally. Thank you for loving me and caring enough to take the time to include me in your spiritual life. I love you.

9.) Other than a few minor things, I'm pretty happy with my life. Now that I have my paperwork done and supports in place and can just look back and look around, I have peace knowing I've done some good things. I've birthed three children who have changed the world in their own ways. I've learned to think for myself and to not just accept what prevailing culture says is the norm. I've somewhat accidentally called all my associates assholes and impacted my field in a way I never would have through any well-planned, peer-reviewed journal article. I've helped people and families have better lives. I've helped mothers understand it's okay. I've stood up for what I believe in. I've also had a really good time :) I've lived all 34 of my years, and I've done some really stupid things, and I've done some really wonderful things, and I can look back at all the memories and smile and know life has been good. Even ages 17-23 which I don't really remember ;)

10.) No matter how good my life has been, I will not go gently into that dark night. I still have more I want to do. I have vacations to take and skydiving to do and now I have to learn how to pole dance and I plan to see my kids graduate and married and divorced and remarried and redivorced (Have you met my kids? They're obnoxious sometimes!) and I plan to have grandbabies to spoil one day.This is by no way an admission that cancer will best me one day; this is a proclamation that cancer will never win, no matter what. Odds are still favorable that I will die texting and driving because, seriously Mollie, that's dangerous, but when you aren't scared of the future anymore it doesn't much seem to matter in the end. That's my point, and that's what I hope for you. I hope one day you get to live with the peace I never had until now. (Only without the cancer part, because chemo mostly just sucks ass.)


I love you all, and thank you again for taking this journey with us. What a ride, what a ride. <3


10 comments:

The McGregor Clan said...

Mollie, I only met you one time. I was your SW once at CMC. We have the mom of a dead twin in common. I cried in your room and we talked of grief. This is a beautiful post. Living through struggle gives you the best perspective and your words scream that. I'm praying for you and your bucket list and all that you still have to do in this world.

Tim and Terrye Conroy said...

We don't know what to say except to shut up because you said it swell. If truth and courage kill cancer cells you have their butts on the run. And you remain forever undefeated!

Lorne said...

Mollie,

We have never met. A mutual friend shared your story. Tonight, I find myself in awe, fully inspired with newfound hope.

LIFE is a struggle as well as a win. It's not what happens to us, but rather what we allow to define us. Your story has reset my vision, aligned my priorities and revolutionized my soul.

- I thank you.

Junicha said...

Wish I could reach you with BIG HUGS!!! We love you!
Junicha and Ralph

Darlene Bane said...

This is so full of Mollieisms! Girl, we love ya!!!

Darlene Marcucci-Miller said...

Hi, Mollie...I am Diana O'Hara's sister...she is carrying you around in her heart cradling you in love and with gentle hugs all around for you and all those you love. My husband is a hospital chaplain and I am hospice trained...yours is an inspirational approach to accepting what life hands you...and not getting mad at God over it...I love that you addressed platitudes my biggest peeve...especially for kids...I will be praying for you during your journey and for your family as they go through it with you. Hugs, Darlene Marcucci-Miller

Carol Nicholson said...

Hi, Molly. I also read your story because of a shared friend. I also am in awe of the way you are handling your situation. My daughter-in-law was recently diagnosed with breast cancer. I know what a shock like that can do to rock your world. I wish I could know you in person. Your blog has enriched me. You will be in my prayers from now on..

LeisaHammett.com said...

WOW.

Only the Sheppards said...

Thank you all for your kind words! Your support has been beyond priceless to us. I feel so sorry for anyone who gets cancer who doesn't have you all behind them!

dee carter said...

I love you, my friend. Every single day, I am thankful that God is not ready for a challenge like you in Heaven.