I wrote a guest post at The Behavior Station, a website dedicated to the dissemination of ABA.
You can find my post here, but take a look around the site. She has tons of good information regarding applied behavior analysis and its practical application.
Enjoy!
Monday, November 24, 2014
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
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
Monday, October 13, 2014
Bad math and bulldogs
I am not the world's biggest sports fan.
I don't not love sports, there's just been a whole lot of real life lately and not a lot of time for extra-curricular activities. Unless I have to feed you, wipe your bottom, or give you a copay, you're outside the realm of my interests, as it were.
That doesn't change that since the day of my birth in August of 1980, approximately 34.25 years ago, I have been a Mississippi State fan.
It was just pretty inherent where I lived. We were thirty or so miles from Starkville. We grew up wearing maroon and white and yelling "Go Dawgs!" before we even knew why.
We played some pretty good football during my college days. Those were the days of Dicenzo and Pork Chop and McKinley and Smoot, back when we always had a pretty good season, but we never could quite show up for four whole quarters... Back in the days when Malfunction Junction still functioned. We believed in you then, boys. We knew that, for parts of the game, you were the best team in the whole country. We thrived on that. We loved you then. We loved you before. We've loved you since. We love you now.
This crazy phenomenon all around me, of State fans yelling "Hotty Toddy," and Ole Miss fans chanting "Hail State;" it's ridiculous. Never in the history of my life have I seen the people of the state of Mississippi so unified (at least until the Egg Bowl.) We've always believed in you, but now everyone, in-state and out, gets to see why. Everyone gets to know why we've all sat in the rain in the bad years and clanged our cowbells all the way to Rick's Cafe after a hard loss. You're our team, and right now you're the nation's team.
This is just the year of bad math at my house, Mississippi State. I'm battling a crazy rare cancer. On paper, the math says my season oughtta be ending about the same time yours should. But here's the thing. This is the year of bad math. You boys have dug up from the trenches and, by God, I never even knew State being number one in the polls could be on my bucket list, but, as of yesterday, you went ahead and checked that one off for me. Who'd have thunk it?!
I've already decided I'm not going to die of cancer. It's not in my game plan. That being said, seeing Mississippi State be the national champions is now on my revised bucket list. No pressure or anything, but you boys better keep showing up and beating odds because it's a beautiful, beautiful thing to behold, and it's some of the worst math I've ever seen and I love it.
I am so proud of you, Bulldogs. Sometimes bad math is the best math, and it's currently the only kind of math I like. Keep on doing what no one expected. Keep playing the best four quarters of football we've ever seen. Keep surprising people. We've always believed, and we still do. This is the year of bad math and miracles for all of us, boys.
Clanga, clanga, y'all.
#HAILSTATE
I don't not love sports, there's just been a whole lot of real life lately and not a lot of time for extra-curricular activities. Unless I have to feed you, wipe your bottom, or give you a copay, you're outside the realm of my interests, as it were.
That doesn't change that since the day of my birth in August of 1980, approximately 34.25 years ago, I have been a Mississippi State fan.
It was just pretty inherent where I lived. We were thirty or so miles from Starkville. We grew up wearing maroon and white and yelling "Go Dawgs!" before we even knew why.
We played some pretty good football during my college days. Those were the days of Dicenzo and Pork Chop and McKinley and Smoot, back when we always had a pretty good season, but we never could quite show up for four whole quarters... Back in the days when Malfunction Junction still functioned. We believed in you then, boys. We knew that, for parts of the game, you were the best team in the whole country. We thrived on that. We loved you then. We loved you before. We've loved you since. We love you now.
This crazy phenomenon all around me, of State fans yelling "Hotty Toddy," and Ole Miss fans chanting "Hail State;" it's ridiculous. Never in the history of my life have I seen the people of the state of Mississippi so unified (at least until the Egg Bowl.) We've always believed in you, but now everyone, in-state and out, gets to see why. Everyone gets to know why we've all sat in the rain in the bad years and clanged our cowbells all the way to Rick's Cafe after a hard loss. You're our team, and right now you're the nation's team.
This is just the year of bad math at my house, Mississippi State. I'm battling a crazy rare cancer. On paper, the math says my season oughtta be ending about the same time yours should. But here's the thing. This is the year of bad math. You boys have dug up from the trenches and, by God, I never even knew State being number one in the polls could be on my bucket list, but, as of yesterday, you went ahead and checked that one off for me. Who'd have thunk it?!
I am so proud of you, Bulldogs. Sometimes bad math is the best math, and it's currently the only kind of math I like. Keep on doing what no one expected. Keep playing the best four quarters of football we've ever seen. Keep surprising people. We've always believed, and we still do. This is the year of bad math and miracles for all of us, boys.
Clanga, clanga, y'all.
#HAILSTATE
Tuesday, August 12, 2014
Peace.
There is so much inside my head I want to say but I'm having a ridiculously hard time getting my thoughts through my fingers and onto my screen. It's the same feeling I get when I come home and there is just so much to do that I can't focus on any one thing, so I don't do any of them. It's so hard to isolate that thing that is so important it should be first, when everything seems so equally important.
I'm still at peace. I'd wondered if that would wear off, like God's grace is some thin varnish that disappears as it weathers in the rain. But one month in, I still feel peace. I've never really felt peace about anything, ever, so I know this is a Gift.
My friends and family have yet to find peace. So caught up in he unfairness of it all, no one understands "But why her? But why them?" If I try to math it, and I don't math, I see the sheer ridiculousness of it.
Seriously, some math junkie do some research. Twin labor at 21 weeks. Twin A at 22 weeks. 12 day delivery separation. 23 week twin B survives. Third child with autism. Mom gets 0.5/million cancer.
It is more likely that I get bitten by a shark in my Tennessee backyard than it is that the above scenario would happen. It doesn't math. It doesn't make sense.
Maybe that's why I have so much faith? Because with math that bad, God has to have His hand in this.
I've spent a LOT of time in the hospital the past few weeks, and I did manage to squeak out two meltdowns in a row while hospitalized last week. Neither were over cancer. Cancer isn't what's scary here. It's the loss of control. It's the red tape and bullshit and fear of not knowing how details will work out. Insurance details and practical crap; those are the things that get you. My minister came up on my birthday (Happy Birthday to Me!) and reminded me of some very important things I needed to remember, the gist of which is a reminder from God that, "Hey, I got this."
He does. He does got this. His fingerprints are all over it, even the practical details. Sometimes I just need that reminder. If I could just talk Him into picking up my mail and mopping, there really wouldn't be much else for me to worry about.
I still struggle with prayer. What the last seven years of my life have taught me is that I most definitely know what I want, but I most definitely don't know what I need. When I look back at these past few years, very few of my prayers were answered, not in the "Hey I rubbed the lamp, now grant me my three wishes" way that I prayed. Oh, how I prayed for twins! For healthy, perfect twins! And twins I got; one dead, one very much not healthy. Oh how I prayed for Dax to be HEALED. No lasting imperfections. No abnormalities. Oh how I prayed for Tyler to be NORMAL. No special needs. No special requirements. Oh how I prayed for my marriage to be EASY. All these holes I wanted filled. All these miracles I wanted. All these demands to be met. Not one effing one of them happened. Come on God, where the hell are You?
Ahhh, but in hindsight. Every. Single. Trauma. has brought me to today. Every. Single. "Unanswered." Prayer. has built the foundation on which I stand so firmly at this very moment. I can practically see God moving the paintbrush now and how perfectly everything has come together to make it all make sense. And, on my end, it does make sense, even if it's in a nonsensical way. I get it, God. I see it now. You've got some really jacked up ways of getting shit done, but You get shit done.
So, with this new diagnosis, I've struggled with what I'm supposed to say to God. Thank you? Yeah, I'm not there yet. No one's like, "Dude, cancer's my fave!" But I can't bring myself to ask for healing, either. Looking back at the past, I see so clearly now that every good thing I love in life has come from some very bad thing. I want healing, obviously. Please, don't stop praying for healing! But, I find I just look up, raise my hands, and say things like, "Whatever, God. I know you're there. You know I'm here. I know You know what You're doing. Help me not mess it up." They probably won't quote me on that one in the Brand Spanking New Testament, if it ever comes out, but it's honest, and it's all I got right now. I'm pretty sure He gets it. And, I'm pretty sure something good will come out of this. I just don't know what exactly that's supposed to be yet.
But for now, it's peace. And nausea. And hair loss. And appointments. And naps. And chemo. And meds.
But, peace.
I'm still at peace. I'd wondered if that would wear off, like God's grace is some thin varnish that disappears as it weathers in the rain. But one month in, I still feel peace. I've never really felt peace about anything, ever, so I know this is a Gift.
My friends and family have yet to find peace. So caught up in he unfairness of it all, no one understands "But why her? But why them?" If I try to math it, and I don't math, I see the sheer ridiculousness of it.
Seriously, some math junkie do some research. Twin labor at 21 weeks. Twin A at 22 weeks. 12 day delivery separation. 23 week twin B survives. Third child with autism. Mom gets 0.5/million cancer.
It is more likely that I get bitten by a shark in my Tennessee backyard than it is that the above scenario would happen. It doesn't math. It doesn't make sense.
Maybe that's why I have so much faith? Because with math that bad, God has to have His hand in this.
I've spent a LOT of time in the hospital the past few weeks, and I did manage to squeak out two meltdowns in a row while hospitalized last week. Neither were over cancer. Cancer isn't what's scary here. It's the loss of control. It's the red tape and bullshit and fear of not knowing how details will work out. Insurance details and practical crap; those are the things that get you. My minister came up on my birthday (Happy Birthday to Me!) and reminded me of some very important things I needed to remember, the gist of which is a reminder from God that, "Hey, I got this."
He does. He does got this. His fingerprints are all over it, even the practical details. Sometimes I just need that reminder. If I could just talk Him into picking up my mail and mopping, there really wouldn't be much else for me to worry about.
I still struggle with prayer. What the last seven years of my life have taught me is that I most definitely know what I want, but I most definitely don't know what I need. When I look back at these past few years, very few of my prayers were answered, not in the "Hey I rubbed the lamp, now grant me my three wishes" way that I prayed. Oh, how I prayed for twins! For healthy, perfect twins! And twins I got; one dead, one very much not healthy. Oh how I prayed for Dax to be HEALED. No lasting imperfections. No abnormalities. Oh how I prayed for Tyler to be NORMAL. No special needs. No special requirements. Oh how I prayed for my marriage to be EASY. All these holes I wanted filled. All these miracles I wanted. All these demands to be met. Not one effing one of them happened. Come on God, where the hell are You?
Ahhh, but in hindsight. Every. Single. Trauma. has brought me to today. Every. Single. "Unanswered." Prayer. has built the foundation on which I stand so firmly at this very moment. I can practically see God moving the paintbrush now and how perfectly everything has come together to make it all make sense. And, on my end, it does make sense, even if it's in a nonsensical way. I get it, God. I see it now. You've got some really jacked up ways of getting shit done, but You get shit done.
So, with this new diagnosis, I've struggled with what I'm supposed to say to God. Thank you? Yeah, I'm not there yet. No one's like, "Dude, cancer's my fave!" But I can't bring myself to ask for healing, either. Looking back at the past, I see so clearly now that every good thing I love in life has come from some very bad thing. I want healing, obviously. Please, don't stop praying for healing! But, I find I just look up, raise my hands, and say things like, "Whatever, God. I know you're there. You know I'm here. I know You know what You're doing. Help me not mess it up." They probably won't quote me on that one in the Brand Spanking New Testament, if it ever comes out, but it's honest, and it's all I got right now. I'm pretty sure He gets it. And, I'm pretty sure something good will come out of this. I just don't know what exactly that's supposed to be yet.
But for now, it's peace. And nausea. And hair loss. And appointments. And naps. And chemo. And meds.
But, peace.
Thursday, July 31, 2014
#TeamMollie
You know how sometimes you're watching a movie, and suddenly you get to that place where you're like, "Wait, I can believe the mice flying spaceships through the rainforest chasing unicorns, but I don't for a second believe the giraffe just kissed that grandmother on the forehead. That's just ridiculous."
We've now entered the "giraffe kiss on the forehead" part of my story.
You could believe me when I went into labor at 21 weeks and 6 days.
You could believe me when I gave birth to a beautiful baby girl at 22 weeks and 0 days, and she lived one perfect day.
You could believe me when I didn't deliver her twin brother for twelve more days.
You could believe me when he wasn't supposed to live, but did.
You could believe me when he overcame every. single. crazy. complication.
You could believe me when he finally came home from the NICU after 242 days.
You could believe me when I got pregnant about five minutes before my older son came home from the hospital for the first time.
You could believe me when we found out my older son's brain looks like swiss cheese, but yet he learned to walk and talk and dance and amaze.
You could believe I gave birth to another beautiful, precious son, who would later go on to be diagnosed with classic autism.
Those are all normal, everyday things, right?
But guess what. Plot twist. Hold the phone.
Would you believe that, just two weeks ago, I was diagnosed with enteropathy-associated t-cell lymphoma, an ultra-rare, nobody ever sees this crap in real life, shit just got real, cancer? Because THAT is just ridiculous.
God really needs to hire some new script writers because this is so close to a Days of Our Lives story line I keep expecting Stefano to show up. Oh holy shit.
So obviously I'd been sick the past couple of years, and funnily enough, I'd preemptively dubbed 2014 "The Year of the Diagnosis!" I have now re-dubbed 2014 "The Year of The Diagnosis, but Seriously, Not That Diagnosis!" But a diagnosis we have, and onward we march.
I will tell you here, DO NOT Google this %$#@. According to Wiki, I obviously must have died years ago. Fortunately, Wiki nor Google nor cancer has a full grasp on the concept that I'm going to die in a fiery high-speed car crash at 85, and I plan on making cancer my bitch until then. Because, seriously, ain't nobody got time for that.
We came into this diagnosis bassackwards, with a diagnosis two weeks ago and then a port placement and chemo within the week. I told family first, obviously, but then had to rip off the bandaid fairly quickly when I was hospitalized last Monday. (Kudos to my sweet Mama who drove 100mph from Weir, MS, to Nashville, TN, to get me to my specialists when I started puking up blood that morning at 4AM. She earned some street cred that day ;) We went ahead and made the announcement public that day, and oh sweet Baby Jesus, then the floodgates opened.
No, not the scary, awful floodgates. The beautiful, amazing floodgates.
I have the easy part. All I had to do was catch a smidge of stage 4 lymphoma. But, lemme tell you what these other folks have done gone and done...
These crazy people have cleaned my house. They've brought gas cards and Kroger cards. They've brought scarves. They've watched my children. They've brought sanitizer. They've gone to school registration to acclimate my kids to their new school. They've bought school supplies. They've printed t-shirts. They've organized little fundraisers. They've organized big fundraisers. They've set up a GoFundMe page. They've started a #TeamMollie Facebook page to keep everyone up to date on me. They've babysat me. They've checked my fridge to see what groceries we need. They've called their friends and had them bring the groceries we need. They've texted me to say hello. They've offered to drive. They've mailed me wigs and collected those creepy little wig-holder-heads for me. They've messaged me to check on me. They've made posters and signs. They've brought candles and angels. They've purchased outfits to wear for family photos before my hair starts falling out. They've donated money to help the shopper pay for the clothes she picked out for the family to wear. They've had my hair and make-up professionally done so I can not look like a soccer mom in my pictures. The photographers took pictures and captured my precious little jacked-up family perfectly. The photography destination donated their time to us just so they could give back to a family battling cancer. They've prayed. They've got their mamas to pray. They've got their mama's first cousin's ex-wife to pray. They've sent kind, uplifting words EVERY. DAY. They've picked up new clothes for my kids to wear back to school. They've mailed blankets for keeping warm in chemo. They've organized rallies at Sonics, drinking Rt. 44s and eating bacon in my honor. They've made Facebook cover photos and profile pictures and #TeamMollie memes and they've ordered food and cooked gourmet meals and I even got some gluten free, organic mashed potatoes shaped like a giant penis on a bed of green beans. They've organized a birthday party for both my children because I haven't been able to be Mom of the Year this year, and they don't want them to miss out on the parties they deserve. They've set up secret #TeamMollie Facebook groups I don't even get to know about, where they coordinate their efforts and figure out everything we need before we need it and make sure I have it before I realize it's important. They've worked around my brain, which is great because my brain isn't working. They're making me rest, and making me heal, and making me sit down and shut up and beat the everliving shit out of cancer. And that's what we're gonna do.
They've shown the hell up, and they've shown the hell out. I have never seen so much God working so hard and I'm so blinded by the complete Jesus Christ kind of love being vomited all over me by these people that I have not even once been able to be afraid, or sad, or hopeless.
This love... It's so hard for me to explain this beautiful love I get to tangibly feel and see every single day now. This love is so much bigger and brighter and stronger than cancer could ever be. This love will be how we tackle this hurdle, and by God, I hope we just keep on tackling hurdles until the world understands that this kind of love is what lights candles and builds bridges and breathes air into dying souls and makes birds sing and oceans laugh.
This love is the most perfect love I've ever encountered, other than that I feel for my own precious children.
The take-home lesson? Cancer is a real bitch. But God's hands and feet are all over this one. Cancer doesn't stand a chance.
Love has got this one.
At least that's a good plot twist :)
Go #TeamMollie!
We've now entered the "giraffe kiss on the forehead" part of my story.
You could believe me when I went into labor at 21 weeks and 6 days.
You could believe me when I gave birth to a beautiful baby girl at 22 weeks and 0 days, and she lived one perfect day.
You could believe me when I didn't deliver her twin brother for twelve more days.
You could believe me when he wasn't supposed to live, but did.
You could believe me when he overcame every. single. crazy. complication.
You could believe me when he finally came home from the NICU after 242 days.
You could believe me when I got pregnant about five minutes before my older son came home from the hospital for the first time.
You could believe me when we found out my older son's brain looks like swiss cheese, but yet he learned to walk and talk and dance and amaze.
You could believe I gave birth to another beautiful, precious son, who would later go on to be diagnosed with classic autism.
Those are all normal, everyday things, right?
But guess what. Plot twist. Hold the phone.
Would you believe that, just two weeks ago, I was diagnosed with enteropathy-associated t-cell lymphoma, an ultra-rare, nobody ever sees this crap in real life, shit just got real, cancer? Because THAT is just ridiculous.
God really needs to hire some new script writers because this is so close to a Days of Our Lives story line I keep expecting Stefano to show up. Oh holy shit.
So obviously I'd been sick the past couple of years, and funnily enough, I'd preemptively dubbed 2014 "The Year of the Diagnosis!" I have now re-dubbed 2014 "The Year of The Diagnosis, but Seriously, Not That Diagnosis!" But a diagnosis we have, and onward we march.
I will tell you here, DO NOT Google this %$#@. According to Wiki, I obviously must have died years ago. Fortunately, Wiki nor Google nor cancer has a full grasp on the concept that I'm going to die in a fiery high-speed car crash at 85, and I plan on making cancer my bitch until then. Because, seriously, ain't nobody got time for that.
We came into this diagnosis bassackwards, with a diagnosis two weeks ago and then a port placement and chemo within the week. I told family first, obviously, but then had to rip off the bandaid fairly quickly when I was hospitalized last Monday. (Kudos to my sweet Mama who drove 100mph from Weir, MS, to Nashville, TN, to get me to my specialists when I started puking up blood that morning at 4AM. She earned some street cred that day ;) We went ahead and made the announcement public that day, and oh sweet Baby Jesus, then the floodgates opened.
No, not the scary, awful floodgates. The beautiful, amazing floodgates.
I have the easy part. All I had to do was catch a smidge of stage 4 lymphoma. But, lemme tell you what these other folks have done gone and done...
These crazy people have cleaned my house. They've brought gas cards and Kroger cards. They've brought scarves. They've watched my children. They've brought sanitizer. They've gone to school registration to acclimate my kids to their new school. They've bought school supplies. They've printed t-shirts. They've organized little fundraisers. They've organized big fundraisers. They've set up a GoFundMe page. They've started a #TeamMollie Facebook page to keep everyone up to date on me. They've babysat me. They've checked my fridge to see what groceries we need. They've called their friends and had them bring the groceries we need. They've texted me to say hello. They've offered to drive. They've mailed me wigs and collected those creepy little wig-holder-heads for me. They've messaged me to check on me. They've made posters and signs. They've brought candles and angels. They've purchased outfits to wear for family photos before my hair starts falling out. They've donated money to help the shopper pay for the clothes she picked out for the family to wear. They've had my hair and make-up professionally done so I can not look like a soccer mom in my pictures. The photographers took pictures and captured my precious little jacked-up family perfectly. The photography destination donated their time to us just so they could give back to a family battling cancer. They've prayed. They've got their mamas to pray. They've got their mama's first cousin's ex-wife to pray. They've sent kind, uplifting words EVERY. DAY. They've picked up new clothes for my kids to wear back to school. They've mailed blankets for keeping warm in chemo. They've organized rallies at Sonics, drinking Rt. 44s and eating bacon in my honor. They've made Facebook cover photos and profile pictures and #TeamMollie memes and they've ordered food and cooked gourmet meals and I even got some gluten free, organic mashed potatoes shaped like a giant penis on a bed of green beans. They've organized a birthday party for both my children because I haven't been able to be Mom of the Year this year, and they don't want them to miss out on the parties they deserve. They've set up secret #TeamMollie Facebook groups I don't even get to know about, where they coordinate their efforts and figure out everything we need before we need it and make sure I have it before I realize it's important. They've worked around my brain, which is great because my brain isn't working. They're making me rest, and making me heal, and making me sit down and shut up and beat the everliving shit out of cancer. And that's what we're gonna do.
They've shown the hell up, and they've shown the hell out. I have never seen so much God working so hard and I'm so blinded by the complete Jesus Christ kind of love being vomited all over me by these people that I have not even once been able to be afraid, or sad, or hopeless.
This love... It's so hard for me to explain this beautiful love I get to tangibly feel and see every single day now. This love is so much bigger and brighter and stronger than cancer could ever be. This love will be how we tackle this hurdle, and by God, I hope we just keep on tackling hurdles until the world understands that this kind of love is what lights candles and builds bridges and breathes air into dying souls and makes birds sing and oceans laugh.
This love is the most perfect love I've ever encountered, other than that I feel for my own precious children.
The take-home lesson? Cancer is a real bitch. But God's hands and feet are all over this one. Cancer doesn't stand a chance.
Love has got this one.
At least that's a good plot twist :)
Go #TeamMollie!
Saturday, May 17, 2014
A diagnosis at last?
Two years ago this month I began a magical, fun journey of being sick but having no diagnosis. I spent the better part of the last year researching and asking questions and playing with diets and feeling like crap, and, honestly, I'd just about given up on doctors. After being deep in the throes of major "episodes" during most of December and January, and then again in February, March, and April, I finally decided this was the year we would figure this out.
I am tired. I am tired of being sick. I am tired of being sick and tired.
So I started having tests run. When I was unhappy with my doctors, I fired them all and found new doctors. I put down my entire history and all my symptoms and pushed forward until I found doctors who listened and understood, and oh what a difference that makes. The worst part of this is not the abdominal pain. The worst part has become the constant tiredness, the confusion, the lack of attention, the anxiety. My brain has suffered much more so than my gut has.
After test after test after test, the're finally pretty sure it's (at least) celiac disease. Two years ago it wasn't even considered as a reasonable diagnosis because my blood antibody tests were negative, but now they're about 90% sure (although they are not ruling out comorbid diagnoses just yet.) I went gluten free for about eight months last year and felt better, but there were other foods that seemed to make me sick as well, not just gluten. The doctors have now put me on a super-restrictive diet (think low-FODMAP, gluten-free, alcohol-free, caffeine-free, low-red meat) and I honestly don't even know what to eat anymore. I have a pretty steep learning curve for this one, considering my previous meals were primarily made of caffeine and cheeseburgers. Thank God potatoes are still safe. Maybe I can just live off them the next three months!
My saving grace this year, as far as treatment is concerned, is how awful my blood work looked. I have friends with similar symptoms to mine but they aren't taken seriously, but my blood work definitely has reflected significant malnutrition. An endoscopy showed signs of GERD, and most importantly, blunted duodenal villi permeated with leukocytes. I've had multiple iron transfusions as well as weekly B12 injections, and the doctor promises me if I stick with the diet I will feel like a new person soon.
Oh how I hope that is true. I've felt like a very old, overwhelmed person for way too long now.
A diagnosis has been a long time a'coming. Here's to being that annoying person at the party with the dietary restrictions! I'll bring the lactose-free quinoa cookies that no one wants.
(Any favorite recipes would be appreciated! Low FODMAP just seems to be so low fun!)
So, onward to better things!
I am tired. I am tired of being sick. I am tired of being sick and tired.
So I started having tests run. When I was unhappy with my doctors, I fired them all and found new doctors. I put down my entire history and all my symptoms and pushed forward until I found doctors who listened and understood, and oh what a difference that makes. The worst part of this is not the abdominal pain. The worst part has become the constant tiredness, the confusion, the lack of attention, the anxiety. My brain has suffered much more so than my gut has.
After test after test after test, the're finally pretty sure it's (at least) celiac disease. Two years ago it wasn't even considered as a reasonable diagnosis because my blood antibody tests were negative, but now they're about 90% sure (although they are not ruling out comorbid diagnoses just yet.) I went gluten free for about eight months last year and felt better, but there were other foods that seemed to make me sick as well, not just gluten. The doctors have now put me on a super-restrictive diet (think low-FODMAP, gluten-free, alcohol-free, caffeine-free, low-red meat) and I honestly don't even know what to eat anymore. I have a pretty steep learning curve for this one, considering my previous meals were primarily made of caffeine and cheeseburgers. Thank God potatoes are still safe. Maybe I can just live off them the next three months!
My saving grace this year, as far as treatment is concerned, is how awful my blood work looked. I have friends with similar symptoms to mine but they aren't taken seriously, but my blood work definitely has reflected significant malnutrition. An endoscopy showed signs of GERD, and most importantly, blunted duodenal villi permeated with leukocytes. I've had multiple iron transfusions as well as weekly B12 injections, and the doctor promises me if I stick with the diet I will feel like a new person soon.
Oh how I hope that is true. I've felt like a very old, overwhelmed person for way too long now.
A diagnosis has been a long time a'coming. Here's to being that annoying person at the party with the dietary restrictions! I'll bring the lactose-free quinoa cookies that no one wants.
(Any favorite recipes would be appreciated! Low FODMAP just seems to be so low fun!)
So, onward to better things!
Tuesday, May 13, 2014
Just a kinda sorta blog post
Sorry for the blogging hiatus. It's been difficult for me to figure out the next group of peers I'd like to single out as assholes, plus I've just been down-right sick... But that's a post for another day.
Today, however, I wanted to link to a small article I recently contributed to the launch of a Nashville-area special needs website. It will have the latest area news and a special-needs friendly calendar of events for any locals who are looking for more education or social opportunities. So, click on over, read my (brilliant, as always, ha!) post, and like their page. It's going to be a great resource for us!
Click here for the website.
Today, however, I wanted to link to a small article I recently contributed to the launch of a Nashville-area special needs website. It will have the latest area news and a special-needs friendly calendar of events for any locals who are looking for more education or social opportunities. So, click on over, read my (brilliant, as always, ha!) post, and like their page. It's going to be a great resource for us!
Click here for the website.
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