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.

Dax > Chuck Norris

Strike 3

Hello good people.

My name is Mollie and I haven't had a blog post in four months.

My last post was written under the influence of Dilaudid, which I LOVE by the way, and I ended up spending 8 days in the hospital and the better part of a month recuperating from that medical mystery. They initially thought Crohn's, then they changed their minds, then they came back to Crohn's, then we did test upon test upon test and I swallowed a tiny Asian cameraman (long story) and 56, 000 pictures of the inside of my digestive tract later, they told me there was nothing wrong with me.

Obviously "they" have very little psychiatric training.

So, for the past few months I've suffered the ongoing, but much less severe, effects of "nothing wrong with me" disease, and I've learned a bit about what I can and cannot eat and can and cannot do. I've taken this whole thing as God trying to tell me I can't do it all. That or maybe I should change my diet. I'd prefer to think it's God speaking to me... That's much more reasonable than considering changing my diet. I might shrivel up and die without 5 cokes a day.

But enough about me.

The boys are doing well. They've both started school. Dax had already started transitioning into a classroom one day a week for a couple of hours at the end of last year's school year, and my TyTy, never to be outdone, tested into the school system at the end of the year. We had his IEP in July and, one very persuasive letter later, I have both the boys in the same classroom. They only go for half-days four days a week, but I am already seeing a difference in Ty's language... Which is great, because the little asshole (did I just type that out loud?) completed testing yesterday and, dum dum dum, he has autism.

What's that now?

Not Asperger's. Not PDD. Not SPD. Not ADHD. Not JLHD Syndrome (Just Like His Daddy Syndrome for you non-medical folks). Autism. Classic autism.

Holy crap on a cracker.

I won't say we were surprised. I won't say we didn't see the signs. I won't say the doctors are crazy and they got it wrong.

I will say he's precious and adorable and hilarious and quirky and loving and full of potential. And such a weirdo. He'll break out of the baby gate to go brush his teeth. He'll come up missing and be cleaning the shower. He'll sit in the driveway and pour rocks on his head for an hour. He'll pick his nose and bring it to me, wipe it on my arm, and say "Thank you." God bless America, he's the funniest creature I've ever met and he's going to make some lucky woman furious and very confused one day.

I don't struggle so much with the diagnosis for him. It was tough to hear, but I know my baby and I know his strengths and I don't worry so much yet. I know things will get more complicated as he gets older, but right now he's happy and he's bright and he's so eager to learn. He loves pleasing others, and, as a behavior analyst who's worked with tons of other people's children, I know the kids who want to learn, and who want to please you, are the ones who catch on the fastest. Ty will be fine.

Where I struggle is the guilt. Every mother has guilt. Special needs mamas doubly so, I think. I agonized for a long time over the twins and what I could have done differently and how I obviously suck as a mother if I can't even carry my babies long enough for them to thrive. I finally came to terms with that and let it go, or mostly so, and now, damn. I'm like, 0 for 3. It's a hard place to be because I really do think my kids are pretty perfect. They have never, ever disappointed me. Irritated me? Sure. Pushed me to the point of daydreaming about child abuse? Daily. But they've never let me down, and I am so damn proud of them...

But still I struggle. I should have been able to provide them the best genes, the best womb, the best prenatal care, the best whatever they needed up until birth, and then the best everything after. Where did I fail them? At what point did that thing happen that led to that little ripple that changed the course of their lives from easy breezy to damn, son, you're gonna have to work a whole lot harder than everyone else?

But then I return to being so extremely grateful that they are not average or normal or typical. They're extraordinary and amazing. People know my babies and love my babies and fight for my babies and pray for my babies and they make this world better and happier and bring love into it. So why do I feel guilty?

I just do :)

So thus begins the next chapter of whatever the hell kind of story this is. And as we do this we also add in the complications of doing it separated and selling a house and trying to figure out what on God's green earth is coming next.

Say what you will, it never, ever gets boring. Lord, sometimes I wish it would.

And now for the moment we've all been waiting for!!!

Alrighty, this is the day we've had:
Colonoscopy (CS) completed. When I work up I was staring straight at the ceiling and it looked like Vandy's ceiling and I had a moment of panic thinking I was there for a Dax procedure and had fallen asleep. They oriented me, told me everything looked great, and told me they'd zapped two polyps.

I came upstairs happy, thinking the awful area of bowel must have been made that way by two nasty polyps, and we celebrated.

In jogs the surgeon. He says, "I guess you've heard the results?" and I say "Yay two polyps!" and he shrugs and says "Likely noncontributory. He wasn't able to high enough to get to the bad section. You can start on clear liquids and work your way up," and then jogged out.

We all breathed a cumulative sigh of "WTH just happened, and what does it mean?"

Nurse brings me a cup of ice and two banana Popsicles. I start having the shooting pains when I start eating them.

Tech takes my temp. It's 100.5.

A dinner tray comes in! My first dinner tray! It's 6 kinds of liquids, but hey it's my first food tray yay!

I decide to try a sip out of the beef broth. OMG it's good. It doesn't burn the back of my throat like the Popsicles. It doesn't burn the top of my stomach like jello. It doesn't make me cramp. OMG I am finally going to eat real food for the first time in 7 days!!!

Then the gastro comes in. Finally, the news we've been waiting for! I put down my broth. "I was pleasantly surprised to get in and find NOTHING at all! There was no inflammation, no signs at all of any of the major things we were looking for. I went way up there, further than I normally do, did tons of biopsies, but everything looks great!"

"Polyps?"

"Two. One was no big deal. The other one would have probably been a big problem in about 15 years. You'll be getting a scope every 5 years now to get checked."

"Coolio. So, you don't think it's Crohn's or any other type of major issue?"

"No, we'd have most likely seen some other signs. We have to wait for the biopsy results to be sure, but I'm pretty confident."

"Yay! Then why does my stomached still feel exactly the same, why am I having shooting pains still, and what happened to the ginormous super scary section from Monday"

"You probably just have air from the procedure that's causing the discomfort and pain, and maybe it was just some sort of infection that was coming or going or whatever, but you should be good now."

"I am aware of what has feels like. I am aware of what post-colonoscopy gas feels like. I am also aware of exactly what my stomach pains have felt like for the last seven days. And the big scary spots may or may not have been something but we don't know if it was? What test will you run to double check?"

"We're going to wait and see how your stomach feels tomorrow morning and we'll go from there."

"Well what tests can you run?"

"Maybe an abdominal MRI if you feel better."

"An MRI if I feel better? I want to feel better. How bout I get one If I feel worse."

"Okay if you want to lie still for 45 mins."

"I feel like I'd like y'all to run tests until we figure out if Ground Zero disappeared or not. Test my toenails. Test everything. I've been sick for 7 days; I haven't eaten for 7 days, tell me why!"

Then we continued on in the same fashion for a few moments until he left.

I pick back up my warm beef broth. It is sooo good.

Tech walks in, I ask her to take my temp because I'm fevery. She asks to to hold off on the broth so she gets an accurate temp. She comes back with a a thermometer with no temp probes. She leaves and comes back with a thermometer with temp probes, and it's broken. She comes back with a forehead scanner, checks it twice, and it's over 103. She leaves to tell the nurse. I pick up my broth. It's cold now, but dammit it's still good. I'm sipping it when the nurse comes back in with the doc. Doc says he's ordering blood cultures and Cipro and maybe a chest X-ray and another abdominal ct. There might be an infection. Oh!?

The tech takes my temp in my mouth. 100.3. She takes it under my arm. 101.7. Another tech comes in with a good warm bowl of beef broth since my other was ruined. The nurse says, "Don't eat that; I'll come back in 15 mins to take your temp orally again."

Ooooobeetaybe. I haven't eaten for 7 days. Take your time!

She comes back, takes my temp orally, it's 100.4, and she says " We'll use that one; it's in the middle."

Sure sure whatever.

My broth is cold. I have them warm it up. It's the best effing food I have ever had in my entire life. I finish the whole bowl. Still some stomach pains, but no reflux and it doesn't burn. It's my happy food. I am a happy girl.


So, in conclusion: on Monday my intestines looked frightening. Today they looked beautiful. My tummy still hurts. I'm still spiking an occasional temp. A new antibiotic may help resolve it? Rest may resolve it? Yelling at doctors may solve it? There may be nothing there now? There may be something and he didnt check high enough?

Maybe tomorrow we'll have answers. Maybe tomorrow I'll feel better. Today I have Dilaudid, beef broth, my hallucinations, and my mama.

To tomorrow!