Monday, April 24, 2017

More thoughts on ABA (from the trenches)

Every year or so, I see the same old blog posts making the rounds, and, invariably, someone asks me what I think about them.

Every year I sit quietly.

There's this thing, when you're a special needs parent and a behavior analyst. They both pervade your very being. Sometimes the mama bear takes over. Sometimes the BCBA is who is in charge. Usually it's a combination of the two. And when these blog posts, claiming that applied behavior analysis (ABA) is terrible and abusive and awful come across my feed, I have two thoughts every time:

They're not wrong.

Also, they're not right, either.

I didn't always feel that way. Prior to my two kids, Dax (nine, med frag, intellectually disabled child evil genius) and Ty (seven, diagnosed with classic autism at three, super handsome) I'd have told you they were ridiculous. I didn't get it, not the way a mother does. Now I do.

There have been countless times in the past nine years that I've had to take off my BCBA hat completely and just be a mom, because there are things a mom can see that ABA can't. There have been other times I've had to step back and try to look at my kids through the lens of ABA because there are things a BCBA can see that a mom can't. We all have on blinders. It's really hard to take them off.

ABA helped us through oral aversion, food refusal, head-banging. It helped us learn sign language, then verbal approximations, and then verbal language. But it was the mama in me that has picked up on the tiny nuances through the years. It's the mama in me who recognizes those tiny changes in behavior and mood that are so indicative of internal things. Mamas see those things when no one else does. And people think we're crazy, but we know. People can just keep on thinking we're crazy, because we KNOW.

But here's the thing. These blogs that circulate often focus on ABA not addressing internal behaviors. BCBAs don't address emotions, not the way a therapist does. BCBAs don't search for the internal causes of behavior. That's all true for the most part. Because that's not what we do. Do you get equally as mad when you go to the dentist and he doesn't address your vision? Because ABA is built on the foundation of using scientific principles to increase and decrease observable behavior. That's what we do. If you want to increase or decrease behavior, call a behavior analyst. If you want to address emotions and feelings, call a therapist.

I will put some of the blame here on us as a field. We are, as a profession, pretty sure we could fix anything given enough time, control, and resources. We get a little over-confident sometimes, mostly because we like to think having a science to our methods makes us superior to fields who don't. We ethically have to rely on data, not just what feels good, and we like data and graphs and proof, and that's what we do. As a field, we need to work on referring out to other fields more often, but we like to work on everything our way. It's a behavior we need to increase.

Which brings me to my next point: applied behavior analysis IS a science. There are decades of peer-reviewed research showing that ABA IS effective at changing behavior. The science is good. The science is real. The principles of behavior analysis are active in your life every single day. It explains your routines. It explains your bad habits, and your good ones. Not believing in ABA, which I see commented quite frequently, isn't really a valid option. ABA is as real as gravity. Applying the principles, however, is only as good as the practitioner. Therein the fault lies.

I look back sometimes at "pre-kid" Mollie the BCBA and I cringe. I thought I knew all the answers. I thought external behaviors were all that mattered. I apologize. I was really smart back then, but there was so much I didn't understand. Now I spend more time learning than I do trying to be smart. I'm still learning. Bear with me. But, for every mistake I've made as a practitioner, ABA was never at fault. It was me. But, here's what I do know now that I'm a dinosaur: if the practitioner is  not focusing on the (observable) behaviors that are important to you or your loved one, say something. We have an ethical obligation to address the behaviors that are socially valid to the people we serve. But, we don't know unless you tell us. Remember, we like observable behaviors. We do better with that than someone hiding their anger behind a smile and pretending like everything is okay. So, tell us. Also, we have to have your consent before we implement a behavior plan. If you aren't comfortable, or if you don't understand the reasoning, or if you just don't like it, please, tell us. Out loud. Use your words. And if your behavior analyst isn't meeting your needs, tell us. Ask for a referral. Ask for a discharge. Your goal, and the BCBA's goal, are the same. Everyone wants quality of life, life satisfaction, happiness, and met potential, but we might have different ideas of how to get there. If you can't reconcile yours and the BCBA's methods of getting there, maybe ABA is not the right fit for you. Because, really, families and lifestyles and core beliefs are just as varied as the clients we serve. Everyone has the right to choose the path that works for their lives. Sometimes that's ABA. Sometimes it's not. You have the right to choose just like the next guy.

I love ABA. I do. I can't help it. It is a quintessential part of who I am, and a huge part of how I parent and interact with the world. (But it's not the only way I see the world.) I'm sorry to everyone who's had a bad experience. I read these accounts of how painful eye contact is, or how sessions felt like dog training, and I am so sorry. But, for every bad experience, there are so many good experiences. The "dog training" methods are what taught my sons to talk. They're what helped teach my older son to eat and walk. They're why my kid with a chunk of brain missing is almost at grade level (albeit he's been proactively held back a time or two.) They're why my seven-year-old with autism can now identify foods he can eat with his celiac disease diagnosis and prepare meals and tell me when he's sick and tell me why he's frustrated. And they're happy. Oh my god, they're such happy, amazing, brilliant little boys. And I adore them and would never do them harm, and I want what is best for them which is why I use ABA principles every single day of their precious little lives, and will continue to as long as the mama in me agrees that it's the best course of treatment for them and as long as they keep learning and growing and thriving. I can't say ABA is right for your family, but you can't say it's not right for mine.

I wish I could fix it all. I wish there was some blood test we could run that would tell us exactly what a person needs and when and how much, and then I wish insurance would friggin' pay for it. I wish we knew more. I wish it was easy. I wish any of it was easy. It's not. We all do the best we can with what we've got, and sometimes that's scary and lonely and difficult. And your experiences are your experiences and mine are mine, and we're all trying to figure it out as we go. So, keep talking and keep sharing, good and bad. Be a voice. Keep on keeping on. Keep learning and keep teaching. And let's all keep trying to fix the world the best way we know how.

***Edited to add:

We do address emotions in ABA, we just have to do it in a measurable way. It's not the traditional "talk" therapy so many people expect. With my own kids, that looked like when one of the boys would get frustrated, I'd mimic the facial appearance and say, "You're frustrated. I'm frustrated, too. You're frustrated because this is hard. I understand, Can you say, 'I'm frustrated'?" Sometimes it was baby steps to the next level, but at seven and nine they are now able to tell me exactly how they are feeling. I hope that clarifies that point just a little.

Monday, October 24, 2016

The blog post I didn't really want to write, but I did it anyway

I very rarely get the urge to write anymore. My fine motor skills are crap. My attention is crap. It's just not easy to whip out a Mollie manifesto at 11pm just for fun anymore. But today I sit here, laptop in lap, and there is a post dying to work its way from my head to my fingers. I don't yet know what I'm going to say, or how I'm going to say it, but I just feel like it has to be said. Even if I really don't want to do it.

I feel like I should start off with an "I'm sorry." I'm not sure why. Maybe apologizing ahead of time will soften any anger towards me if I step on your toes. I don't really want to step on any toes. I'm a big fan of toe-free stepping, as it were, but I'm also a firm believer that God gives us gifts and he wants us to use them. Not that I always, or usually, or consistently listen to Him. I'm a bit of a control freak, and I tend to attempt to exhaust everything I can humanly do before I'm like, "Fine, God. Have it Your way." (Wouldn't that make a great modern, realistic interpretation of "Have Thine on Way, Lord"?)

And before I go any further, I am not a very good Christian. Oh, don't get me wrong, I love me some Jesus, but I've strayed pretty far from my conservative Christian upbringing. Actually, I take that back. I have not strayed from my conservative Christian upbringing. I now try to live my life based on those scriptures we repeated so often in Sunday school each week, rather than using them as weapons and a stepping stone over unpleasant things.

Ouch. That was a hard growth spurt for me.

It all started in college, with a professor who was also an Episcopal minister. I was completely comfortable with my pretty white little God box until she exposed us to some things I did not want to hear about. Other religions, other cultures, different ways scriptures can be interpreted, different ways scriptures have been used to hurt other humans, or demonstrate the superiority of one group over another. This professor was a fierce lover of God; however, she made us see that to truly have faith you have to allow yourself to be uncomfortable, and you have to grow, and the relationship and faith you have is between you and God because everyone else falls short. That was the semester I began to critically think about the Bible, how it should be read, and how it should be used. That was hard.

Not long after that my brother did his tour in Iraq. It was a frightening time for all of us, but my brother was always good at making you laugh in tough times. He shared stories of some of the nice Iraqi families he'd met, and of a little girl he'd come to care about who had been injured in the war. For the first time in my life, I saw Iraqis as people. Maybe they weren't all just enemies waiting to catch us infidels at the right time so they could kill us for Allah. Maybe the majority of them were people just like us who had grown up in a good home with loving parents who took them to Mosque and made them eat their vegetables and do their homework? Were all those kids going to hell simply because they had the very bad luck of being born in Baghdad and not Mississippi? That was hard, too.

The third major moment of growing pains came with the birth of the twins. I had faith, total, complete faith, that those beautiful babies of mine would be fine. Even when they delivered sweet Aubrie at 1lb1oz at 22 weeks gestation. Even when they said she had massive brain hemorrhages. Even when they said her time was probably near. Until they placed her lifeless, tubeless body in my aching arms, and I gently dressed her in a white silk dress and told her how much she was loved and wanted. A part of me was broken that day. The part of me that believed God gives you what you want if you just have enough faith. The part that blindly felt like as Christians we were somehow immune to tragedy and loss. When Dax was born almost two weeks later, that illusion of human control I thought I had was no more. And then, after months and months and months of watching him grow and get sick and grow and nearly die and grow and get sick and grow and nearly die, my conversations with God became so raw and emotional and real. I questioned. I argued. I swore. I battled. "If you're going to let him suffer, why don't you just go ahead and take him, asshole. Why are you allowing this baby to live in so much pain? Just take him, you big bully. Please stop his pain!"

That is not a prayer I learned in Sunday school, but I came to believe and feel that God was crying right there with me. He's seen His children suffer, too.

All in all, when I look back over the lessons of the past decade, my weaknesses have been made abundantly clear. I do not wait well. I am the worst be stiller. I want to fix all the things. I have handed over the keys and learned to backseat drive, but I still want to know where we're going and why. I mean, I'm the girl who reads the last chapter of the book first, so I know who lives and who gets married and can take my time reading the rest of the book without anxiety because I know how it ends. I still want to know how it ends.

But one of the biggest blessings that has come from the storms has been the admission on my part that I will never understand the whys. I will never understand the hows. God doesn't fit in my pretty white box anymore. He is huge and He is tiny and He is beyond my comprehension. I can't read Revelations and then go back to Genesis and read it all and know where it's headed. God is in the Bible and outside the Bible and in millions of stars and in the hairs in my head and in the dust on my TV. To cautiously throw out scripture, which I am intentionally trying to avoid, His ways are not my ways. I do not believe in my lifetime, or yours, that we will get to truly understand His ways.

And that's what leads me to the heart of this post.

I finally took to heart that over thousands and thousands of years of actively searching for God, no one has ever quite found Him. I mean, we think we do. We hold tight to scriptures that mean the most to us, and we find solace and hope in His promises, but, still, not one among us knows what tomorrow holds. Not one among us gets to be the expert on what God wants from us, because you can read and study and learn and live and your awareness of God's presence and love is ever-evolving and growing, or at least I think it should be, and who God was to you yesterday may be incredibly different from the God of today. God isn't changing, but we are. Or we should be, I think.

I don't believe God has called us to go out and be The Great Christian Enforcers, or, at least, I don't think that's what He's got in store for me. I believe He has called me to love. I believe He has called me to champion the broken and be a voice for the voiceless and spread light where there is none. That may change at any given time, but just like you, I find myself constantly trying to fulfill God's calling for me while systematically screwing up everything that I touch because I am human and I am so, so, fallible. I get it wrong on the daily. As I lie in bed at night pretending to meditate but actually just obsessing over what I've done wrong that day and how much I screwed the pooch on something that I could have used to glorify God but I chose to take another route, I often end up falling asleep before I stop myself long enough to spew a simple prayer of thankfulness. I get it wrong. I get it so wrong.

I live in a weird world divided between ultra-liberal and ultra-conservative friends and family, and I find I'm too liberal for my conservative friends and too conservative for my liberal friends. I'm okay with that. I don't enter into any political or social issue lightly. In a world that prefers black and white, I prefer the gray areas. In a world of emotion and fear and anger, I choose thought and empathy. That is not an easy place to live. Society doesn't like gray areas. Society wants you to grab onto an idea with all fours and cling to it until you die of exhaustion along with everyone who grabbed on with you. It's a carnival ride you can't get off of, nor do many of us want to. Until you have to. So often life has a way of stealing you from the rollercoaster against your will and dragging you through the darkness until you finally see that the carnival was a self-imposed prison of thought. What you thought was God's will was actually a prison you built for yourself. But those prisons win elections and influence policies and harden hearts.

What has prompted this particular post today is my sadness about Christianity. Christ, who died for us, all of us, and wants to bring us joy in the darkness, has been used this election season in ways I'm pretty sure He would start flipping tables over. Not that this is new. This is a tale as old as Christ Himself, but today's technology and in-your-face media and all the keyboard warriors have shown me the ugliest use of our Savior that I have seen in my lifetime. I don't really care who you are voting for. I really don't. I'm relatively sure God already has a pretty good idea of who will win and what will happen in January and in 2037 and in 5187 and in 12999. I don't think God is a Republican or a Democrat, and he sure as hell isn't a politician. Satan, maybe, but I think God's got His hands full with much bigger things. Like a starving child in an orphanage in Bulgaria. Like a felon on death row. Like a policeman strapping on his vest before he leaves his family. Like a teenager who steals to feed his family. Like a college kid who drinks to numb the pain. Like the gay man who is contemplating suicide because his church and community have shunned him. Like the unplanned pregnancy that turns into an unwanted baby that turns into an abused child that turns into a child molester. Like the bank manager who is skimming off the top to accumulate more and more and more. Like the father trying to protect his family in Syria. Like the teen who found love and acceptance for the first time in a gang, or a jihad. Like the much wanted fetus who happens to have a genetic anomaly that causes society to look at him and whisper. Like the adult who mentally or physically cannot care for himself. Like the man who feels the only way he will be noticed is to hurt large groups of people. Like the Christian who seeks out and admonishes those who don't engage in what she's deemed "acceptable" sins. Like the Christian who secretly believes she is a better person because of her church affiliation. Like the man who is freely shouting "MURDERER" at a broken woman entering Planned Parenthood, without ever trying to use that plank in his own eye to help pull her from the river of fear she is drowning in. And, most definitely, he is with that broken woman as she drowns and we stand idly by, throwing more buckets of water her direction. And He's with you, and He's with me, and He's with them. All of the thems.

This is not meant to be a post about abortion, but as that seems to be the hot topic of the week, it just fell out. Please hear me when I say I gave birth to two beautiful children born at a gestation when late-term abortions can still occur. Please hear me when I say I want to live in a world where every baby is loved and wanted and protected, and that every graphic picture being posted hits me in a deep, dark place in my heart that longs to go find each of those babies and hold them and tell them they were loved. But, also know, as a mother who fought to have her child placed on life support, allowed her to suffer here on Earth, and then made the choice to remove life support, that I have had to make that tough decision to let a child die. I made the decision to let her live and suffer, and then I allowed her suffering to stop. There were a good deal of doctors and God and nurses and family in that mix, but ultimately, there is not much separating me from a mother who chooses to terminate a pregnancy so her child will not have to suffer. We just chose to let ours suffer first. Please don't think I take that lightly.

That got a little off-topic, but it brings me to what I really wanted to say. I don't know what God has called you to do. What I do is between me and God, and what you do is between you and God. But please, for the sake of all things holy, please take a deep look within yourself to see if you're actually representing Christ or if you're hiding your gifts and flaws behind a life-sized Christ cutout that is pointing away from the love and grace we are supposed to represent. Can anyone see Christ through your anger? Through your use of scripture and adages used to condemn or minimize rather than uplift? Do you see a lost sheep and run back to your flock, thankful he's gone? Do you spend as much time working on your own hypocrisy as you do pointing out the hypocrisy of others?

I'm not going to lie. I keep hearing comments about the attack on Christianity, and I am afraid for us. The attack is real, but it's not from outside forces. We are killing ourselves from the inside out, and the non-Christians are just watching us burn. How the hell can we be disciples for Christ when we push away everyone we see as different, and fear everyone we don't understand, and offer grace only to ourselves when withholding it from everyone else. Jesus died for you. And the lady who just got an abortion, as well as the tiny life inside her. Jesus died for the good policeman and the bad policeman and the unarmed black man and the armed black man and the refugee and the king and the homosexual and the rich and the poor and the terrorists. Yep, even the terrorists.

He even died for Donald and Hillary. Both of them. Equally. Crazy, I know.

So, please, as you are thinking and reading and deciding and taking action today, tomorrow, fifty years from now, please spend a little bit of that time learning your own heart and trying to figure out what God wants for you versus what you want for you. We get so busy being Christians we forget about Christ, and once we forget about Christ we've lost everything we ever even started fighting for.

Don't let your principles become your golden calf. Remove those planks from your eyes to build a ladder for someone else. Trust that God is in control, but don't forget to use your hands and feet to reach out instead of punch. And, for the sake of Pete, love your neighbors as you love yourself, even if they don't look or act or vote like you do. If you love God, love His children. And don't ever forget that we are all, everydamnlastredandyellowblackandwhitebrownandbeautiful one of us, His children.

Sunday, April 12, 2015

A tiny bit of an update

Sooooo, it's been a ridiculously long time since I last posted, but I can pull the cancer card now so shut up and leave me alone ;) A lot has transpired since my last post, so I'll try to do a quick overview.

First of all, the kiddos are doing great. Dax is in a CDC class and he transitions into a regular classroom for some of his academics and his specials. He likes going to school, and, other than picking up a few unwanted behaviors (sometimes it's good having a good imitator, sometimes it's not,) he's done really well. I'm constantly surprised at the sight words he knows. He's a smart little grasshopper if you pay close enough attention. Oh, and he turned SEVEN last week. SEVEN. I'm still wrapping my head around how fast the last few years have gone by. 

Tyler is in a regular kindergarten classroom with pull out support. He's also a great imitator, which has fared well around his typical peers. Additionally, our ped (who's amazing, by the way,) tested both boys for celiac disease in the fall and, ding ding ding, Ty had red ink everywhere. We did an endoscopy in December to confirm, but he, at five, has a firm diagnosis of celiac disease now. I was devastated. I mean, that kid loves him some gluten. He has been gluten free as of January 1st, however, and, by God, his language has really taken off since then. He's speaking in some sentences now, and he's able to label boatloads of things I didn't know he knew. He's also taken off with completing tasks I didn't know he could do, so he has some chores around the house now and I'm completely amazed by what he knows. He even used "What the hell?" in a sentence appropriately the other day. I was so proud :)

As for me, my second round of chemo was successful, and I admitted to the hospital on January 13th for an allogenic stem cell transplant. They warn you that the transplants are somewhat difficult, which I shrugged off mostly because I AM MOLLIE AND I CAN DO ANYTHING but, oh my God, stem cell transplants are actually not super easy after all. I had a good bit of nausea following the chemo they gave me, which is some by-golly-for-real-knock-you-on-your-ass chemo, and about a week after the transplant (give or take some days; it all runs together now) I ended up in ICU for a few days because of a severe GI bleed that tried to kill me. Apparently that's not a common side effect, but my GI issues contributed and it was pretty ugly for a few days there. I put on 30 lbs in ICU, and subsequently lost 40 once I discharged back to oncology, and there was this awful rash and the nausea and the weakness..... It was the worst of times, it was the worst of times. I remember thinking it would never, ever get better... But it did. Slowly, it did. I finally discharged after about 40 days of hospitalization, and now suddenly (or not so suddenly) we're on Day 81 post-transplant. I'm still weaning off steroids for graft versus host disease, but the side effects of the steroids are slowly lessening. I can climb stairs now just using one hand for support. I drove my car today for the first time. I still ache; my leg muscles are atrophied from bed and steroids and they hurt almost constantly. I'm only now starting to grow the tiniest smidge of hair and it's almost been three months. When I asked the NP why it was taking so long to grow, she replied, "You know how you feel on the outside? That's how your body feels on the inside, too." I guess I'll give my head a little bit more leniency. I get tired a lot. I nap a lot. I sit a lot. I've watched Orange Is the New Black (OMG I love that show!) I go to the doctor a lot. My labs still aren't great so I'm still mostly isolated from the world, but I've learned how to hand crochet (thanks Yum Yum) and I've taken up Soda Crush (thanks, Ma,) so it hasn't totally been wasted time?

Oh, and this week I'll find out if my cancer is still gone or not. So there's that. Here's hoping all signs point to yes. My Magic 8 Ball never disappoints.

And I guess that's all for now? Sorry it took so long, but I had cancer ;)

Monday, November 24, 2014

Guest post at The Behavior Station

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.


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

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.


Tuesday, August 12, 2014


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.