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.

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 ;)

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.

Enjoy!

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

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

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.

#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!

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!

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.

On autism and ABA and assholes

I just got back from one of my favorite places on Earth, the annual Florida Association for Behavior Analysis conference. I don’t talk much on here about what I do as a profession, but after having a few days to think, I now want to put into words some of my feelings.

First, some background:

I graduated with a BS in Psychology, a minor in Sociology, and a certificate in Criminal Justice from Mississippi State University in 2002. (Go Dawgs!) I immediately entered Florida State’s program for Applied Behavior Analysis and became a Board Certified Behavior Analyst in 2004 soon after earning my Masters.

During my undergrad years I worked as a tech in an acute psychiatric ward for adults. Throughout grad school, I worked doing in-home ABA with children with autism, in Head Starts with children with behavioral disorders, in preschools doing standardized assessments for a federally-funded research project, and then my last practicum, working with adults with post-acute traumatic brain injuries, turned into my first post-graduate job. I worked in TBI rehab for several years before switching to a position providing community-based services to adults with intellectual disabilities with behavioral issues that make accessing the community and being independent difficult. I currently provide in-home services to adults and children with intellectual disabilities/developmental disabilities and accompanying behavioral issues that interfere with their daily lives.

I love what I do. I love the clients I serve and the families and staff who support them. I love the science I stand behind. I love the perspective behavior analysts have that not everyone understands, but that we can see so clearly. I love being a behavior analyst.

I can still clearly recall some of those “AHA!” moments I had during grad school, when some new concept that had once been foreign to me suddenly made perfect sense. I remember watching my in-laws interact and suddenly understanding the laws of behavior didn’t just apply to children with autism. I remember using what I learned in class to train my dog to do fun tricks and shape my husband’s dish-washing behavior. I remember that day I really, really understood that ABA could change the relationship between countries and religions and cultures, change the work force, change the educational system, change the way children learn to be adults, change the world… And I still, with 100% of my being, believe this is true.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

As most of my blog readers already know, I gave birth to my older son in April of 2008. We knew upon his birth he would likely suffer from lifelong disabilities, and I began teaching him the only way I knew how immediately after he was born at 23 weeks gestation. I would withhold verbal praise when he desatted on the ventilator. I would praise him and give firm pressure for a good heart rate and tell him how proud I was of him. I began doing full physical prompts at 28 weeks gestation to teach him to sign for drops of breast milk into the corner of his mouth. (At one point one of my favorite neonatologists threatened to kick me out of the NICU if he ever saw me working on baby signs again until after Dax was supposed to be born, so I just did it on days he wasn’t there ;) Dax became my favorite client, and I’d pencil him in my planner every day for a long visit where I’d work on establishing myself as a reinforcer, try to determine novel reinforcers, and teach him how to live and thrive within his environment. The nurses would laugh at how much he responded to his classical music CDs, and they could always tell when they weren’t at his bedside if his CD was over because he would desat until they pushed play once more. Boy did he train them fast ;)

Eight long months in the NICU later, Dax had his first MRI, and it was bad. Very bad. Chunks missing bad. Streaks of dead area bad. “He’ll never be able to sit up or walk” bad. But we all know now, five years later, after intensive multi-disciplinary expertise and consistency and repetition and consistency and repetition and consistency and repetition and consistency and repetition that the kid can do anything. Try to stop him.

When little brother was born eight months after Dax came home from the NICU, we assumed he would be our typical little boy who would provide Dax with a “normal” environment while Dax taught him about compassion and diligence. Looking back, the signs were there from birth. Tyler would never breast feed, not even with the help of half a dozen nipple Nazis, errr, lactation consultants. He screamed constantly, he would never eat enough to fill his tummy, and he was never that happy baby you read about in books and see on TV. At six weeks old I was finally able to figure out he wanted cold breast milk straight from the fridge mixed with formula mixed with a tablespoon of baby cereal in a Dr. Brown’s phase 2 bottle. Still, even after he finally would get his tummy filled, he always looked so serious. My parents jokingly said he always looked like Richard Nixon with that classic scowl. We didn’t get the baby giggles and the smiles and the cooing… Looking back, I should have seen the signs, but I only knew that he was my “normal” child. I had no idea he’d later go on to be diagnosed with classic autism.

Dax, 5

Ty, 4

I say all this because, thankfully, I am a behavior analyst through and through. I can hypothesize without a controlled study that, based on Ty’s behavior patterns and history, he would “appear” much more autistic had I known any way to parent other than through behavioral principles. I can hypothesize without a controlled study that, based on Dax’s behavior patterns and history, he would have fewer skills today had I known any way to parent other than through behavioral principles. My last few years have been filled with those "AHA!" moments.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn’t see what we see and understand what we understand... And suddenly I have much more to say about it.

I now stand with my feet in two worlds. One foot is planted firmly in the world of special needs parenting, and my support network is comprised of mothers and fathers who work hard every day to provide their children with every opportunity to succeed. They fight schools and doctors and therapists and odds to give their children the chance to be happy, successful, involved, and accepted, no matter what label, diagnosis, or prognosis their child has been given. They live this life 24 hours a day, seven days a week, holidays and weekends, at 3AM and 9PM. They sit vigil in hospitals and sleep covered in vomit and they don’t like you and they don’t trust you and they will fight you to the death for this child they adore.

My other foot is planted firmly in the world of applied behavior analysis, and my support network is comprised of BCBAs who work long hours trying to help children, adults, families, and staff have a better life. They know how to teach and they know how people learn and they know how to decrease bad behaviors and increase good behaviors. They write behavior support plans late into the night and field phone calls at 7:30AM and they want to fix the world through environmental manipulation and concrete data. I live in the world of special needs and ABA every second of every day. But as I stand here with my feet in both worlds, I feel compelled to answer the question that continually arises at every behavior analyst conference I attend. I feel compelled to inform the BCBA masses why I feel we’re not as widely accepted as occupational therapy and speech therapy and hippotherapy and psychiatry:

We’re smug assholes. From some of the top names in the field to the lowly first year students, we're just smug assholes.

I was one once. I understand. I would tell a mother there was no reason why XYZ shouldn’t be completed 100% of the time; why reliable 5-minute interval data was important every 30 minutes. I would tell a mother “There’s no research support for that” or “You’re just wasting your money” or “They’ve never published that in a reputable medical journal” and I would go on about my day, completely sure I understood everything there was to know about “fixing” kids with autism and kids in general. In my world, everything could be so simply understood by breaking it down into observable behaviors. That’s what we do. That’s what we’re good at. I was an excellent radical behaviorist.

But now I’m a mother. I am not just a mother to two boys with complex behavioral repertoires which always break down simply into an ABC analysis. I’m a mother to boys with internal, unobservable behaviors. I’m a mother to children with personalities and stomachs and brains and neurotransmitters and bruises and quirks and my eyes and stubbornness and their dad’s hair and athletic ability and penis-related hearing loss and sweet tooths. I’m a mother to children with complex EOs and MOs who would have been LOST were it not for strong speech therapists and brilliant occupational therapists and knowledgeable vision therapists and creative physical therapists in addition to solid ABA support. I’m a mother to a child who loses the ability to answer things he knows, walk steadily, or make good choices when he has a cold or is constipated due to neurological issues I can’t control. I’m a mother to a child who can find letters, numbers, and shapes hidden in his environment in his french fries or in the trees or in fences or in the drywall, but just learned to call me “Mama.” I’m a mother to children I cannot see only as behaviors that need to be increased and decreased, and I know things about them that there is no data out there to support, but that doesn’t make them less true.

But still, I stand in two worlds. My special needs friends can be pretty far out there for my BCBA mind some times. They try things I can’t wrap my head around. They quote articles I can find no scientific backing for, and I keep my opinion to myself unless directly asked, and even then my standard response is “I've seen no studies that show it works, but take data and let me know how it works for you.”

And still, there are things I try that are immediately met with criticism from my BCBA friends. “There’s no data for that.” “There’s no proof that works.” And yet, if I present my own data to them (“Look, the immediate effect of joint compressions as recommended by my son’s OT decreased his jumping behavior by 80% in the five minute data interval following the application of the compressions,”) they remain skeptical, despite the fact we are well-versed on single study designs. Why are we so opposed as a discipline to the idea that some of these “wacko, out there” interventions might actually work for some kids? Why aren’t we collaborating with other professionals to evaluate the efficacy of the treatments they are recommending rather than bashing them without doing our own single-study research to provide feedback?

Because we’re smug assholes.

We KNOW what we do works. What we forget, as a discipline, however, is that to everyone else, our clients are NOT just a collection of behaviors to be increased or decreased. Yes, our strategies work on primitive organisms all the way up to large masses of individuals in corporations and countries filled with voters. Yes, training your dog and teaching your kid how to hit a baseball utilize the same principles as a parent trying to train her eight-year-old son to say “blue” and use the toilet, but, as a special needs mother of two children with diagnoses, my children are no more simply a collection of behaviors to me than your dog or child is to you. The difference is, the odds are in your favor. Your dog will probably be a dog. Your kid will probably grow up without constant intervention and move out and become a somewhat successful adult without you teaching him constantly or fighting a broken system to get him what he needs. Odds are your dogs and kids are assholes too, sometimes, just like ours are, and sometimes you get exasperated. Odds are, sometimes a friend listens to you complaining about an issue you’re having with your dog or kid, and the friend can come up with a simple solution from the outside looking in that you couldn't see because sometimes it’s ridiculously hard to step out of your box and look at the big picture.

But still, at every conference for behavior analysts I attend, we have seminars on gaining acceptance. On why we’re not appreciated as a discipline; on why everyone doesn't see what we see and understand what we understand... And suddenly I have much more to say about it.

I find, with my feet in both worlds, I get much more “emotional” support and empathy from my special needs mother peers. I get anecdotal information I can digest in my own way and learn tips that only parents who live this 24-hours a day will learn. My BCBA friends offer excellent solutions. They are always available for concrete, evidence-based practices that have been proven to be effective for children with autism and head injury and noncompliance and poor tacting skills, but they cannot offer empathy, not in the same way a special needs mother can. They can try, and I have my goto BCBA friends whom I always nail down for advice and direction, but I find many BCBAs lack the ability to step for even one moment into a mother’s shoes because as a discipline we’re so caught up in science we often forget it’s people, not science, that matter in the end. It’s a child. It’s someone’s entire world. It’s a perfect, amazing creature with his mother’s eyes and stubbornness and his father’s hair and athletic ability. That’s where we lose people. That’s why we aren't as accepted. That’s why parents don’t follow through with all our programs. As much as we KNOW people are just rats in a lab, we cannot forget that people ARE NOT just rats in a lab.

There is a place for objective scientific reasoning, everyday. There is a place for graphs and data sheets, everyday. But, maybe we’re the ones we should be focused on changing. Maybe we should spend more time becoming conditioned reinforcers and less time completing the RAISD. Maybe we should spend more time listening to parents and other professionals than we spend refuting what they’re saying. Maybe we should spend more time analyzing treatments we’re unsure of than trying to publish data everyone already understands. Maybe we should spend some time understanding how internal behaviors work so we can do a better job coming up with replacement behaviors that actually work rather than just hoping for the best. Maybe we should become more likable than Jenny McCarthy. Maybe we should spend less time telling people that ABA works and spend more time using the principles of behavior in community relationships. Maybe we should acknowledge we can know how behavior works without always being able to utilize it effectively in our own lives. Maybe we should admit that we kick major butt at understanding the laws of behavior, but there’s a crap ton of stuff out there we don’t know.

Maybe we should just stop being smug assholes.

And, for heaven’s sake people, stop telling parents you know what it’s like to have a special needs kid because you have a dog. One day a mother will punch you in the throat for that, and I’ll probably buy her a drink afterwards.

Sincerely,

Mollie Sheppard, MS, BCBA, and most importantly, MOM

Building boys

In 2004-2005, we built a house near Destin, FL. Not a big, fancy house, but it was ours. I look back sometimes, remembering how difficult it was. You know what the hardest decision for me to make was? Drawer pulls and cabinet handles. I agonized for weeks over which pulls and handles I wanted. I couldn't screw that up! That would make or break the whole house!

As I've gotten older and learned (tiny little bits) from my past mistakes, I realize I don't want to raise my children like I built my house. I don't want to spend all my time focused on the drawer pulls and handles, when there is so much more structurally important to building a good, solid child, than those tiny little details.

I'm reminded of that today at the boys' first swim lesson. A micropreemie and autism mom friend referred me to a local man who's been teaching swim for years, and he was willing to take on the challenge of teaching Dax, the boy who can't drink liquids, who has motor delays, who has a medical chart taller than he is, to save himself if he falls into water. Most people think I'm crazy... Putting Dax into a pool with a man who is known for no-nonsense tough love swim lessons? Putting Dax in harm's way by putting him in water with no floatation device, when he obviously can't even do some of the more basic functions of life? I should protect Dax. I should keep him safe from situations that could hurt him; from people who might not understand; from people who might not understand how delicate he is or how to treat him because he's special.

Today in the parent meeting, the swim instructor singled me out on a couple of occasions, stressing to other parents that Dax was a little different, and we'd have to be more careful with him. He went on later to tell a story about another child he'd recently taught who he had taken it easier on because of health concerns, and he didn't want to stress the child or his parents because they had been through so much.

But, I do want to stress my child. I do want to push him as far as he can go. I want to build a brick house. I want a house with hurricane-proof windows and steel reinforcements. I do not want to focus on the pulls and handles. I want his body to be a fortress, protecting the weak parts with a strong foundation and solid framing. That's what I want for him. That's what I want for both my babies.

So, this week we will undertake a new challenge. Ty will swim fine. He's been comfortable in the water for a while and can hold his own at least for a short time, although I foresee a temper tantrum or two in the near future. Dax, however... Dax has no life-saving abilities in the water at all. He panics, he swallows, he thrashes. This week the goal is to teach him to learn to turn himself over and float with his face out of the water. They will be extra careful with him, but he will require a great deal of sternness and discipline to get him to listen. I think we've found the right instructor to do it.

Now I just have to keep reminding myself I'm building a house. I can't prevent fires, or storms, or earthquakes, or floods, but I can build my house in a way to prevent damage from those things. I can't fix the world. I can't stop bad things from happening, and I can't always shelter my babies.

But I can show them how to live. I can teach them how to survive.

I will not focus on the pulls and handles. I don't care if they get picked first. I don't care if they have clean shoes. I don't care if they get strange looks. I don't care if they have cowlicks. I don't care if they walk funny or talk funny or stim in public. They will have good bones. They will have strong foundations. They will love and they will work and they will fight and they will persevere and they will laugh and they will really, really live.

My babies will be fine.

An Ode to my Offspring

An Ode to my Offspring

By: Mollie Mills Sheppard

You've grayed my hair

You've wrecked my skin

Stitches outside

Stitches in

My boobs are rurnt

My hips are too

Those ugly veins

Are big and blue

I was once so nice

And did little bitching

But I now scream obscenities

As my left eye is twitching

I could sleep all night long

By myself if I chose

With no farts in my face

Or getting soaked while I doze

I was pretty and smart 

and energetic and witty

But you stole those from me 

when you fed from my titty

I guess that's just the way life goes 

as a mother

I'm glad it was you

And not any other

Thank God you are cute

Little babies of mine

And for all the good reasons

To drink tequila and wine

Love,

Your proud, if not somewhat haggard, mother

Tummy update: One year later!

It occurs to me I never explained what we finally figured out about my stomach issues and I wanted to pass on the info in case it might be able to help someone else.

I was hospitalized a year ago this month. The abdominal pain was excruciating, the joint pain was terrible, the nausea was never ending. The doctors found a long section of my small intestine was extremely inflamed and they stuck all manner of items into all manner of places trying to figure out why I was so sick. My stomach blew up to third trimester proportions. Dilaudid was my only friend... Everything else made me nauseous. It took weeks to get enough energy up to do short days at work, and I needed naps for months after. Steroids helped, and they helped a lot, but they also led to joint pain, edema, and weight gain, and my face starting bearing a striking resemblance to Zach Galifianakis. I slowly weaned down from 22 pills a day to none (on my own, without GI guidance) because, you know what? After I underwent an outpatient barium enema (OH MY GOD, never again) and swallowed a camera that took 56, 000 pictures of the inside of my digestive tract, the doctor told me I was fine.

Except I wasn't fine. I would drag myself upstairs sometimes to take a nap at 10AM and wake up unable to bend my knee. I would poop 5,008 times a day whether I wanted to or not. I would randomly become so ill I couldn't keep anything down and could hardly walk through my house without getting winded, and I knew I wasn't fine.

So it was Crohn's, obviously, right? That's what the signs all pointed to. The migratory arthritis, the fevers at night, and muscle aches, the abdominal cramping, the extreme lethargy, the general lack of enthusiasm or even tolerance of much of anything. Steroids helped, so obviously it was Crohn's, right? Except I didn't want it to be Crohn's, and I never really believed it was Crohn's... But what else could it be?

But then, as it often does, Facebook saved me. After my friends heard me bitch and moan for months about my symptoms, a couple of friends mentioned Celiac disease. I was skeptical at first, but I was willing to give it a shot to not feel like total crap every day. And then something magical happened... I felt better. Not perfect, but better. So I started looking closely at the other foods I was eating that might be triggers and one day it all clicked. Gluten is a trigger, and I have an obvious gluten intolerance, but it's more of a nuisance. My biggest culprit of my stomach woes is none other than sucralose. Splenda. The yellow packets. Oh, wow.

I used Splenda in everything. EVERYTHING. And the things I didn't use it in, I discovered over time the manufacturers used it in there anyway. All my favorite things... Sweet tea, Sonic's peach tea flavor, my Lifesavers orange mints I loved, my gum, my cough syrup, my sleeping pill I took at night to hep me sleep better when my tummy was hurting... Once I eliminated all the sources of sucralose in my life I have become 100% fine!!! My energy is back, the fevers are gone, my stomach isn't bloated anymore, my joints don't hurt, the two finger joints I haven't been able to bend for a year will now bend again, the acne that started about a year ago has gone... I feel like a person again. Like a 32-year-old person, not a 75-year-old person. It's been amazing.

I still can't do gluten, although I sneak some in every now and then. I don't pay for it like I pay for accidental Splenda use; that's much more unpleasant.

So, this has been a public service announcement. The longer I understand how these chemicals affect my body, the more I wonder how many of my friends with fibro or joint pain may be suffering from some of the same issues but just don't know it yet. It's worth a shot to give it up for a couple of weeks and see how you feel. Pain meds didn't fix it at all for me, but diet change did.

And thus ends today's episodes of Mollie's Being Dragged Kicking and Screaming into Healthy Eating. You may now resume eating your delicious foods I can't eat anymore. Enjoy them while you can!!

Just keep swimming, swimming, swimming

I was talking to a friend earlier today, and that old adage came up again... "Well, you know, God won't give you what you can't handle. He knew what He was doing when He picked you."

It's been addressed before, and it will be addressed again, but I'm going to break it down for you in simple Mollie fashion:

Bitch, please. What a load of crap.

In the beginning it's good for us to hear. I'll admit, I drew strength from people telling me God picked me. Obviously God knows what He's doing, right? God never makes mistakes. But here's the rub... Once you've been told so many times that God picked you, and God did XYZ to you for a reason, you begin to get really pissed off at God for being such a douchebag.

Yeah, I went there. Because, you know what? That's what you imply when my baby is lying there suffering, that God is doing that to him because I can handle it.

Prior to March 23, 2008, I'd have agreed with you. Prior to watching my babies suffer and hearing "Oh this is God's plan" 9000 times from well-meaning souls who didn't know what else to say, I'd have said the same thing. I didn't question, not before that day five years ago. Oh, and don't think I wasn't told to "Be strong and don't question God." I was weak. I questioned. I swore at Him. I questioned Him some more. And do you know what happened? I began to think about God in a new way. I began to understand Him in a different light. I think I got a whole lot closer to the Truth.

Every time you say "God picked you because you were strong" you minimize what we, and everyone else goes through everyday. Five years ago I was you. When you get thrown into a lake you sink or swim. We swam, not because we were strong, but because we didn't want to sink... and some days we still get tired of swimming. My kids are lucky to have us as parents, but you know what? There are children dying everyday because they were not so lucky. And God didn't pick them for that, either.

Five years into this, I tell you I don't think God picked us. Yes, I have a voice, and I use it. I've used my voice to speak out for my children and for others who need voices. I have used my voice to endear my children to people across the country, and give faces to children whom people might have otherwise pitied, or even worse, seen as valueless. God gave me this voice. God has given me every tool I've needed to walk through the storms, but He didn't pick me. I like to think of Him more as my team sponsor. He didn't get us into this mess, but He's got the capital to keep us up and running.

So the next time you, or someone you love, are facing a hardship, please remember this. You are as strong as you decide to be. If you want to swim, by God, swim... And I promise not to tell you God picked you for it, but I can tell you where He keeps the life vests.

One of my favorite stories ever

I was recently telling someone one of my favorite stories and I realized I’d never shared it with the world… And I think the world needs to hear it.

When Dax was about a month and a half old, living very precariously still in the NICU, he began slowly easing his way into kidney failure. His urine output slowly decreased until one Monday his primary nurse sat me down and told me the doctor had officially diagnosed him with complete renal failure. I looked her in the eyes and asked her if I should be worried. With tears in her own eyes, she shook her head yes.

We talked a while about what it meant. Realistically speaking, there was nothing they could do.

The doctor came through a few minutes later and she explained to me there were no dialysis machines for babies that small. They had stopped all meds that might have renal side effects, but still, he was having absolutely no urine output. His swelling was worsening every day.  All we could do was pray. If Dax’s kidneys didn’t begin working soon, we were looking at him dying within a few days.

We were obviously devastated.

So we prayed for pee. A whole lot of people prayed for pee.

Nothing.

That Thursday I was sitting vigil at his bedside when my mom walked in and surprised me. She lives about six hours away and I hadn’t known she was coming. She sat down with me and said, “I have a confession to make.”

(smile)

She went on to tell me she’d held it all together all this time. For over two months she’d dealt with us losing Aubrie, me being hospitalized, my father being in ICU, a very sick Daxton, and now Dax’s apparently impending death. She’d held it all together beautifully up until she was driving north on Highway 45 and got stuck in road construction. That, it appeared, was the last straw.

“I turned off the radio, I rolled up the windows, and I let God have it.”

She said she’d fussed and cussed and told Him under no specific terms He was NOT taking her grandbaby; that we’d been through enough and He needed to cool His jets and go pick on someone else for a while. She smiled after she told me. I could tell she’d made some peace that day.

We left the hospital at shift change and went home to eat supper. I called the hospital at nine, like I always did, to check his weight for the day and see how the shift was starting. Nurse Debbie answered the phone that night, and in her typical nonchalant fashion she said, “I came in and they were all fussing about renal failure this and renal failure that. I don’t know what all the fuss is about; that kid’s peed 150ccs since I got here.”

 I whooped and I hollered and I jumped and I yelled to my mother, “Oh my God! He’s peeing! His kidneys are working!”

My mom just smiled.

“It’s proof God’s a man. You have to bitch at Him before He listens.”

Most likely to succeed

I was looking through an old high school yearbook a few months ago and I had a little laugh at myself. My senior year I, on purpose, was in almost every club… I can remember staying after school for softball, then after that as editor on the yearbook, then after that for aerobics. I took Latin because I wanted to, sang in the choir even though I couldn’t sing, was in FFA because cowboys were cute but I had no desire to farm. I had a constant desire to do more, to be better, to be the busiest… To be the best.

To win.

Winning. That was what it was all about. I needed straight As… The highest ACT score… I needed to be admired. I needed lots of letters behind my name. I wanted awards. My desire to achieve did not go unnoticed. I was voted “Best All Around” and “Miss WHS” and homecoming court by my peers. I was voted to the Hall of Fame and “Most Likely to Succeed” by my teachers.

And that mattered to me. It mattered a lot.

Looking back, it’s the “Most Likely to Succeed” label that makes me smile the most. My teachers saw something in me that made them feel I would be successful. At that point in my life I thought that meant money, respect, a big diamond ring, the fancy car, the big, fancy office, the PhD, the MD, the 2.5 kids with the fancy house. I don’t know if that’s how the teachers defined “success” or not. All I can say definitively is 17-year-old high school senior Mollie would have not classified the life I’m currently living as a “success.” This was so not in my fifteen-year plan.

That’s sad because, you know what? The things I would have looked down on at that time are the things I now feel are my biggest accomplishments. If there had been a way to tell me back then I would have a dead child, a medically complicated/developmentally delayed child, and a child with autism, I would have had a hysterectomy on the spot. I wouldn’t want those smudges on my resume. Kids who are less than perfect, straight-A, scholar-athletes? I hardly think so. Not on my watch. Not from my uterus. No way, no how.

How I laugh now, knowing my babies are how I have redefined my success.

I’m thinking about all this today based on some recent comments I saw posted on an article about a mother who has been requested to remove her child from school property each day at lunch time to tube feed her. Not only will the school no longer do it, they do not want the mother to do it on the premises. The blatant disregard for FAPE and IDEA from the school aside, the comments left on the article from people who don’t feel children with tubes, trachs, or any disability, really, should be educated in public schools… They hold back the other children… They use up funds and time that would be better spent on educating their own children… Students who are “normal.” They’re just drains on society, is all. Obviously, anyone with a feeding tube is a waste of educational funding.

Maybe 17-year-old, super successful Mollie would have felt the same way. Survival of the fittest, right? I mean, if you don’t have the potential to change the world and make millions, what good are you after all? Why would I have wanted to, or even needed to, waste one minute of my time? Oh, maybe for a public service project. That would look good on my resume. HR loves volunteer work on your resume. That would help land that dream job.

Seventeen-year-old Mollie grew up some in college. I learned to direct my life to an area which made me happy. I took a job working as a tech in an acute psychiatric hospital (because it would look good on my resume, of course.) But, you know what? I learned that I liked working with people who were a little different. I found I could learn a whole lot more from a Vietnam vet with PTSD than a pre-med frat boy who grew up on daddy’s money. I learned someone in the midst of a severe paranoid delusional schizophrenic break would be nice to me if I treated him nicely and with respect. I learned everyone had potential to bring goodness into the world. Not everyone chooses to, but everyone has the potential.

That’s true for everyone, regardless of race, sexual preference, gender, religion, height, weight, hair style, number of tattoos, diagnosis, socio-economic status, and even IQ. It’s a choice we all make, every day.

Fast forward through all the lessons I’ve learned over the past five years, the ones I’ve had to really, really internalize. The crow I’ve had to eat. The asses I’ve had to kick and the ones I’ve had to kiss. The toes I’ve had to step on. The three children I’ve birthed who I would lay down my life for this very instant if I needed to.

Perfect? Yes. Maybe not to everyone. Maybe not to 17-year-old Mollie. Maybe not to the average 35-year-old  soccer mom. Maybe not to the 55-year-old congressman. Definitely not to the CEO of my insurance company ;) Maybe not even to you. But here’s what I do know: everyone has potential to bring good into this world… Even my baby with a feeding tube and my baby with autism; even my baby who lived just one day. We don’t all shine the same lights; we don’t all shine them in the same direction or at the same brightness or in the same color… But just because your gift is being a cunning salesperson or a charismatic leader or a professional athlete or a well-known minister… Don’t for one second think your light is more important than anyone else’s.

You may do well in life, but do you do good?

I no longer long for a straight-A child with a baseball scholarship to a strong SEC school. I want a kid who works his ass off for a C in math. I want a kid who respects others and loves life. I want a kid who doesn’t feel life owes him not one thing, but would give the shirt off his back to a stranger. I want a kid who smiles, and means it. I want a kid who opens doors for others and knows “no” means “no” and says “please” and “thank you” and “I’m sorry.” I want a kid who loves people regardless of their differences, and treats them accordingly. I don’t know what the future holds for my babies; the world remains their oyster. But this I know, one of my kids may be bagging your groceries at Kroger one day, and he’d better be the nicest damn grocery bagger you’ve ever had. Or you know what? One of my kids may be your neurologist one day, and he'd better have the best damn bedside manner and the best listening capabilities you’ve ever come across in a physician. I don’t care which; I don’t care if they do well, but they better do good. That’s all I hope for.

That’s all I hope for any of us anymore.

So, yes, I have succeeded. I have succeeded in learning the secret to success is not making money. It’s not being in charge. What makes me successful is not the letters behind my name (and I have a few ;) or the amount in my bank account (it’s not very much.) My biggest successes are my children, and the goodness I have helped bring into the world through them. They have made this world a better place.

I don’t expect everyone to see that. I don’t expect everyone to understand that. All I can hope is for others to tolerate it; maybe even embrace it. Allow my children, my imperfect, amazing children, to live in the same world as their imperfect, amazing children. To accept their differences and their weaknesses do not diminish their strengths, their will to live, their hearts full of compassion. To treat them with respect and love even if my children can do them no benefit. I will teach my children to do the same.

Isn’t that really the secret to success after all? I’m pretty sure it is. That’s winning at life, and I want the gold star.

Dax vid, long overdue

A boy update before they're in college

I do believe I’ve become a quarterly blogger. Remember when I used to blog once a week? Yeah, me either. It was a long ago time when I had one kid that didn’t move much and one still just giving me indigestion. Now they both move so much… And still give me indigestion.

 I used to read other people’s blogs, also. I find there’s no time for that anymore, either. So if you’ve noticed I never comment on your blog posts anymore it’s not because I’m not interested or I don’t care… I’m just out of touch with anything that doesn’t directly involve my kids, job, Sesame Street, Leap Frog, or sleep. So, for my blogosphere friends, and my real life friends, I apologize!

 So, guess what?! Ladies and gentlemen, we have progress. On all fronts. It’s a beautiful thing.

Let’s start with me because, well, frankly, I don’t really matter so we’ll get me out of the way early and move on to the important stuff. I got pretty sick again in December and probably should have gone back to the hospital, but… well… ain’t nobody got time for that. Per some suggestions from some medical friends I looked into celiac disease and went gluten-free just to see and, poof, I am better! I’m not 100% sure it’s celiac disease, possibly just a gluten intolerance of sorts, and possibly all a product of sensitivities from using Splenda (which I absolutely cannot use anymore, so I’ve discovered.) I’ve done some treatment reversals (because I’m a behavior analyst and I like good data) and there is definitely a relationship between gluten and my tummy woes so, for now, I’ll try to keep the gluten out… Which is extremely hard as some of you know… Gluten is a sneaky little whore who hides away in the most unsuspecting of foods. She’s the James Bond of proteins, I swear.

 But enough about me.

On to my TyTy. At last report we had just gotten an autism diagnosis for Tyler and the enormity of that was still sinking in a bit. I’m pretty much over it now and I’m absolutely certain he is a genius and the mayor of TylerTown. I got him in to see Dax’s neuro and was prepared to have a talk about possibly trying a stimulant for Tyler’s hyperactivity. If you’ve met me, you know I pretty much know what I want going in and tell the doctor what it is that I want, how I want it, and when it will start, and I was totally okay (after much internal battling) to try a low dose of Vyvanse. While the doc was evaluating him and I had not yet told him my feelings, the doctor says “Take a minute while I am interacting with him to think about how you feel about medications.” Oh, yeah, please, like I was coming in open-minded. Please. I already have my answer formulated in my head. I know everything, doc, geez. Don’t you know that yet?

 So, he finishes playing with Tyler and says, “Sometimes these kids have a really hard time accessing the world because they can’t get out of their own little worlds. Sometimes medication can help them get into our worlds.” Well, duh, that’s exactly what I was thinking.

“I think we should try him on a low dose of a medication,” he says. Well, duh. I knew you would say that. 

“I totally agree with you. I’m willing to try a lose dose of Vyvanse for his hyperactivity,” I say.

 “Not a stimulant. An SSRI. Zoloft.”

 And at that point the whole conversation I had worked out in my imagination exploded and a piano fell on my head. We talked a bit, I agreed to try a few other things first, and I left with a scrip for a low dose of Zoloft for Ty’s “OCD tendencies.” I had absolutely no intention of having it filled.

 Fast forward a couple of months, and, after much deliberation I decided to give it a shot. Worst case scenario I could just take him off it, right? But he is doing AMAZING. After about two weeks he seemed to be noticing things he hadn’t noticed before. After about four weeks he began identifying random items and using language to request items more frequently. I just followed up with the neuro this week, and the best way I can describe it is like before he lived in TylerLand all the time, with occasional trips to our world. Now he lives on the outskirts of our world with occasional trips to TylerLand. His personality is the same, but he’s happier, his affect is brighter, and he’s present with us so much more. He’s working on potty training and following instructions and imitating language and picking up on routines he hadn’t noticed before.

That makes for a pretty awesome Christmas present.

As for Daximus Maximus, he is (knocking on wood as I type) really stable right now. 2012 was such a good year for him health-wise! He still thinks it’s fun to scare me at night from time to time, but it’s more like “someone grabbed me from behind and said ‘BOO!’” scary rather than the “someone is chasing me through the house with a chainsaw” scary at which Dax has been historically so damn good.

 Oh, and quick story. Dax had a vocal cord plumping procedure completed on Thursday. I pretty much figured we were screwed when I drove into the parking garage with my NPO toddler and got a good parking space. I knew at that moment that they were probably going to amputate the wrong leg, if you get my drift. I couldn’t have been more wrong. We had the best OR experience we’ve ever had, complete with meeting great people in the waiting room, great pre-and post-op nursing care, and anesthesiologist who was formerly a pediatrician who was amazed and awed at how wonderfully my little 23-weeker is doing. She changed up the normal anesthesia routine and Dax made it through without being intubated, without emergence delirium, and with only a tiny bit of oxygen need before going home. It was great.

 Equally exciting, for the first time Dax was able to process he could not eat or drink until after the procedure. Not an easy task for any kid with an afternoon surgery, but at 2:30, after being completely NPO since 8AM, Dax was saying, “Surgery first, then milk,” and I’d confirm, then he’d say “I want surgery, please.” What a trooper.

At any rate, his language has taken off, his balance and coordination are improving, his appetite is down-right disgusting at times, and he’s absorbing everything. Weight-gain sucks, but he’s getting taller, expressive language still sucks, but it’s better, and potty training will probably NEVER EVER HAPPEN. Ever.

 Ever.

 And that’s the end of my update. I’m sure there’s more, but my brain is shut off for the night. I’ll try to post some pics soon. These boys are growing like fungus. On weeds. On crack.

Seriously.