Thursday, September 6, 2012

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.

Thursday, May 10, 2012

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!"


"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!

Saturday, April 21, 2012

The grass-stain epiphany

A couple of months ago I took the boys to my hometown in Mississippi for a visit. One of their favorite parts of being there is the inevitable mud puddle in my parents' driveway... A couple of weeks ago I received a letter in the mail from my grandmother (because she writes letters; it's so sweet) that said she was so surprised to drive up and see the boys playing, fully clothed, in the puddle. She called it "unconventional" parenting, not in a bad way, but just emphasized it was not something she would have let her children do all those years ago.

It's not the first time I've heard such sentiments. I hear quite frequently "You let them do what?" or "You let them play where?" or "You let them make that mess?" and my answer is unapologetically always yes.

(Okay, sometimes apologetically, as I'm the one who has to clean them and whatever else afterwards, but you get my drift.)

You may call it adventures in parenting, but its more than that. I don't enjoy cleaning any more than the next person, and scrubbing dirt out of body parts I didn't know existed isn't one of my favorite activities, but I do take secret joy out of the messes.

You see, it was right about two years ago, not long after Dax's 2nd birthday, that a friend talked me into taking the boys to the zoo for the first time. We were just getting out of RSV season and the boys hadn't really been outside much, but it was a beautiful day. We stopped on the grassy knoll area to rest and eat a snack, and Dax, who hadn't been crawling well for very long, set out to explore. It was then that I saw his shoes... His pristine white Nikes he'd been wearing for months... had grass stains. Grass stains! And there I was, crying like a fool in the middle of the zoo.

Dax had never gotten shoes dirty before. I took pictures of them, I was so proud.

I swore at that very moment that I would never be upset over muddy shoes or stained clothes... Because that's what living looks like, and that's what little boys are supposed to do. And we had almost missed out on it.

So, yes, I let my boys get muddy, and I let them get dirty, and I let them play hard.

I have able-bodied boys and a good washing machine.

I am blessed.

Sunday, March 25, 2012

Things that make you say hmmmm

I love that my blog isn't read just by micro preemie mamas, but the search keywords that have been used in the last 24-hours by people who have located my blog via google just makes me giggle!

Meme for Sweet Baby ;)

Wednesday, February 29, 2012

Happy Rare Disease Day!

It's Rare Disease Day, a time for people to recognize the enormity of the responsibilities we special mothers face on a daily basis... A day when others tell us what good mothers we are for taking care of special children and how much God will bless us for all we're going through. A day we all pull together to support each other on this ride we're on...

But there's something I think needs to be said...

I think we're the lucky ones.

If you'd have asked me when I was pregnant four years ago what I wanted, you'd have gotten the standard "as long as it's healthy" reply. You know what? It irritates me when I hear that now... Because I think we're the lucky ones.

If you'd have asked me four years ago what the worst possible outcome of pregnancy would have been, I'd have told you a child who didn't have ten fingers and ten toes; a baby that wasn't "normal." But, you know what? I think we're the lucky ones.

I am immersed each day in a sea of special needs parents and special needs children. We are all very different people with children who are at varying levels of functioning or medical needs. We all have lives that revolve completely around appointments and IEPs and insurance and the ignorance of others and all the other craptastic things that go along with having a child who is not "normal."

But, you know what? I think we're the lucky ones.

When you look at this ragamuffin group of friends I've accumulated and their spazzed-out, occasionally blue, always stimming, rarely verbal, wheelchair-bound, genetically enhanced, or ER-loving children, you don't see a group of mothers who sweat the small stuff. You see a group of mothers who celebrate... You see mothers who see beauty and love and miracles everyday in a way that most people can't. Those lines around their eyes? They've been formed from both tears and laughter.

When I look at the way our lives have been re-prioritized for us, not by our choice, but by the grace of God, I am thankful. I am thankful for a life so full of goodness and blessings that I rarely notice the inconveniences. I am thankful for a life that society would choose to pity unless they got to walk in my shoes just one day, and then they would see just how much more beautiful the view is from here. 

So maybe I have earned a few more gray hairs than some. Maybe I've spent more time crying than most. Maybe I've gotten less sleep than... everyone.

But the juice is definitely worth the squeeze. I love that kid with all of my everything, and I wouldn't trade him or one thing he's been through for 100 of your "normal" kids. 

Because we are most definitely the lucky ones.

Friday, February 24, 2012

Holy crap on a cracker, Batman, it's an update.

Hi, four people who still love me despite my lackadaisical blogging habits... ;)

Well, it appears that I won’t be winning any Blogger of the Year awards any time soon. That's good because there's plenty of room next to the Mother of the Year and Housekeeper of the Year and Employee of the Year awards I won't be getting, either. So it works out.

It’s been forever and a day since I posted an update, but maybe today is the day… with “today” meaning whatever day I actually complete this update. We shall see, senor.

Where, oh where, do I start? My Daximus Maximus will be FOUR in less than two months. FOUR. I am shocked and amazed by this. Where has the time gone? How has he become a little boy, albeit a totally non-potty-trained one, right before my very eyes without me even noticing? How?

At last measurement he was just over 36” tall and between 31 and 32 lbs, depending on the scale. He’s solidly on the bottom quarter of the growth chart now and he’s not looking back. I was actually able to dress him in a 4T outfit a couple of weeks ago and I cried like a baby. 4T. Wow. I can remember looking at 18 month clothing and thinking he would never, ever be that big… And now he can wear 4Ts? What. A. Hoss.

So, as for development, he is currently in two hours of PT a week, four hours of ST a week, one hour of OT a week, and he has a homebound teacher who sees him three hours a week. He’s also still in Tae Kwon Do one hour a week, and let me tell you, he has earned his title of The Unlikely Ninja.

Physically he’s doing great. He runs and jumps and, if you make him, can climb stairs just holding onto the rails. He can finally step on uneven surfaces without falling and go up and down from curbs independently. He can even do the two stairs into the sunken den without holding onto anything when he sets his mind to it. There’s still much work to be done, though. Blame it on the cerebellum or on PVLs, blame it on vision, blame it on the pull of the moon, or blame it on the ah-ah-ah-ah-ah-alcohol, he still has balance issues and has unequal hip flexion, and, although he has finally gotten to where he can stand still without constantly having to step back and forth to keep his balance, he still looks as if the slightest gust of wind could knock him straight on his tiny hiney.

Occupational therapy-wise he seems to be making steady progress. He’s not caught up, but he’s not falling further behind, either. His downfall in OT will be his never-ending ability to find an easier way to do things than is developmentally appropriate, and why on earth do it your way when he can do it his way? I have no problem with him doing things his way, but I feel very strongly he should at least have the ability to do it the way the other kids do, and then he can choose the way he wants to do it. I find it is a perpetually exhausting job trying to stay a step ahead of this child, though.

Speech and language-wise Dax is doing great things! For this to be his biggest deficit area, he is continuously surprising me with the new things he is showing off. He knows so, so much receptively, although his strength is most definitely concrete concepts. His articulation still suuuucks, but everything he says means something once you figure it out. And, yes, I still suck at figuring it out sometimes. If he said “gonorrhea” once the other day, he said it 75 times, and I still don’t know what it means… Unless it actually means gonorrhea, and I hope that’s not the case. I spent hours the other day trying to translate this phrase he kept saying, only to finally, FINALLY figure out he was saying “We found love in a hopeless place.” Oh, of course. Rihanna. How did I not get that? Stupid mama.

He does have the official apraxia label now. This kid has more labels than the Campbell Soup factory.

And then there are those times he is perfectly clear, like this morning when he came and climbed in bed with me, said “good morning,” pulled my shirt up, and then said “boobies.” One small step for speech therapy; one giant leap for mankind.

Dr. Dax, cardiologist at large
Healthwise Dax is doing very, very well. We have weaned him completely off of Viagra now, and he’ll have an echo next week to check his heart function without it. Big, big step for us! If all looks well, they’ll schedule a cardiac cath in the next month or so to measure his pressures and see how much, if any, impact his ASD is having at this point. With each echo he’s had the ASD has gotten smaller and smaller, so it’s looking increasingly promising that he will not need surgery to correct that… Which makes me one very happy mama.

Pulmo-wise, we had weaned him down to one puff of his Flo-Vent twice a day, but a couple of weeks ago he had another 4AM Young Wheezy cameo so the pulmo had us increase it back to two puffs BID. We also finally replaced the Xopenex via nebulizer with a rescue inhaler which is a huge relief for me, since carrying around a firetruck nebulizer for emergency situations is about as convenient as carrying around a microwave.

This is your brain

Neuro-wise Dax is doing great! We’re down to seeing the neuro only once a year now, which is really quite a shame because his neuro is smokin’. Dax has two short-term seizure meds we can use now, one for prevention during viruses, and one for any seizures lasting over five minutes, and between those two I think we can conquer the world. My mom refers to the preventative one as “The Grandma Pill” because her biggest fear with keeping him overnight is him having a seizure during his witching hours, 3-5AM, and her not knowing what to do… So now she can just give him a pill at bedtime and they can live happily ever after ;) Such a pansy! Ha!

This is Dax's brain. (His brain is cooler than your brain.)
Endocrinology-wise Dax continues to do great, but he does now officially have a new diagnosis. They’ve batted septo-optic dysplasia (SOD) back and forth since he was less than two lbs, but it never stuck. After the end spoke with the neuroradiologist who read Dax’s MRI from when he had meningitis in July, they came together and made it official… And the part that may be exciting, or maybe not depending on the research I’m reading at the time, is that SOD complex can include multiple midline structures missing in the brain… With the cerebellum, pons, brain stem, septum pellucidem, and corpus callosem all being, ding ding ding, midline structures. So do we finally have a reason for the neurological abnormalities? Or, if you’re missing your septum pellucidem and there’s anything else wrong with your brain they just go ahead and lump it under an easy diagnosis? I dunno. Guess I never will.

But here’s what I do know. A few years ago ROP was the leading cause of blindness.  Currently, SOD is the leading cause of blindness. Dax has both. Do you know why he can’t ever find his socks? Because he has a penis ;)

Hmmm, what’s left…

Ear nose and throat…  His tubes have officially come out, and he hasn’t kept fluid back there chronically since, so maybe we’re done with those :)  His vocal cord is still paralyzed, and I still enjoy a very frustrating game of Mexican standoff with the ENT every six months over what we should do about that. I will be beating that dead horse again in May.

He had another swallow study last week and, although I was hoping for maybe the okay to move to nectar thick liquids, it looks like we’re stuck at honey-thick for now. He’s made great improvements with swallow, but you couple a delayed swallow with a paralyzed vocal cord and you’ve got a recipe for aspiration. That being said, he just penetrates now and he’s able to clear it effectively, so trials with thinner things are still a go, we just can’t run wild with it.

As far as eating, he’s a typical toddler with a fickle palate, but that kid will eat until you want to puke for him! We still do 600 supplemental calories a day through the g-tube, as well as supplemental fluids through the g-tube, but that kid can put away some groceries. And after countless hours of swallow therapy and oral motor exercises, he finally has a completely normal chew… That is a very, very big thing!!! I can remember my goal being to one day be able to give him a small chicken nugget and him be able to eat it without choking… And now he eats burgers and slices of pizza :) Next stop? Vegetables!

Oh, and finally, a few weeks ago Dax lost a tooth. We don’t know where, and the Tooth Fairy said digging through poop was not in her job description. One green tooth down, seven to go!!!

Holy crap, that’s a lot of info. Thankfully Ty is much easier.

Ty is a 33-lb, 35” tall force to be reckoned with. At two and a half, I would have hoped he would be talking more by now, and, well, he’s not, but he has no problems expressing his opinions… Not that he ever has. He never really babbled, and he’s still got some sensory stuff going on, so I’ve waffled back and forth on whether I’m worried or not worried or whether I think it’s autism or sensory processing or ADHD or just that he has a penis or all of the above. He did finally pass a hearing screening, so we know he can hear, and he does follow instructions that are important to him, so I know he can follow one-step instructions…

He also has the ability to watch a movie a couple of times and act out the ENTIRE movie, scene by scene, character by character, with great enthusiasm and follow through…  Donkey gets catapulted across a ravine? Ty runs across the living room and dives behind the couch. Oh yes. Elmo giggles for 4.75 seconds and then feeds Dorothy? Ty giggles for 4.75 seconds and feeds imaginary fish food to a toy.

I tell everyone now that Ty is actually my brain-damaged child because he acts like his dad. Is that wrong? Nah.

(I’m reminded with these two children I have of the Bill Cosby, Himself video. The “Brain Damaged” and “You see we are dumb, but we are not so dumb” parts come to mind quite frequently. If you live under a rock or are under 25 and you’ve never seen that film, find it right now and watch it. Older than dirt and funnier than crap.)

At any rate, Ty is in Early Intervention and is also in speech therapy.

(If you’re keeping score at home, that means 1.5 hours of teacher, 1 hour of speech, and 1 hour of TaeKwon Do for Dax on Monday, 1 hour of speech for Ty, 1 hour of PT, and 1 hour of speech for Dax on Tuesday, 1 hour of Early Intervention for Ty, 1.5 hours of teacher, and 1 hour of speech for Dax on Wednesday, 1 hour of speech and 1 hour of PT for Dax on Thursday, and 1 hour of OT for Dax on Friday. Thank God for Nana and for flexible work hours, because I’m tired just typing that out.)

What. A. Hunk.
Back to my TyTy, the general consensus is he’s obviously behind the curve with speech. He says “muk” and “deuce” (milk and juice, of course) pretty consistently, and he signs “all done” very consistently. We also get the occasional “bite” for food, and a “mama” and a “dada.” He’ll attempt to repeat anything you prompt him to say, although his approximation might be a *little* off… Like when I ask him to say “cookie” he always *clicks* in what we have affectionately begun to refer to as “Tyhili.” (Swahili, get it?;) That being said, he of course can say, sing, and identify the entire alphabet and his numbers up to 12.

Of course.

The rest of the general consensus is that he’s quirky but he’s one of those kids who develops in other areas before speech. He’s ahead of the curve with gross and fine motor, he’s quite brilliant with reasoning and cognitive skills, and he can repeat the inflexion and volume of every utterance of every character in a friggin Disney movie after two sittings. He’s a strange little bird, but damn he’s cute.

He’s also the best cuddler there has ever been in the history of the world. And he will spend five minutes kissing and hugging me when I pick him up after work. And, really, what could be better than a man who is a good cuddler and doesn’t ruin it by talking! Ha!

Could that be the end of my update? Wow. I think that leaves room for more pictures. I’ve neglected showing off how cute they are for far, far too long!

Daddy's hilarious ;)

Dax as a sheep in the Christmas play

Dax was Popeye for Halloween! 'Cause he's strong til the finish ;)
Oh, yes, TyTy was Fat Elvis for Halloween.

Life is good :)

Love. And, yes, Dax is totally stealing 2nd.

BTW, the non-cell phone pics are brought to you today by our friend Dan... How awesome is he???

Friday, February 10, 2012

A little present from Sweet Baby

Sweet Baby Chase's mama put together a video of his first two years now that she can share him with the world... And now I am sharing him with the world ;) I can't watch this video without thinking what his life could have been like, would have been like, if God hadn't put him with Josh, Tonya, and Landon. What a lucky little family they are :) And how cute is he, seriously?!

Monday, February 6, 2012

But why is the rum gone?

Something amazing just happened. (Prior to Poopapalooza.)

Borderline miraculous, possibly.

I went away. On vacation. Without my children. And I relaxed. And it was unbelievable.

Months ago my friends Lynn and Jason decided I needed a vacation. They were right. Never would I have ever done it for myself, and if I had I would have backed out long before the trip actually came to pass. If they had not given me the trip I never would have gone. I doubt they’ll ever really understand how eternally grateful I am for them knowing what I needed when I needed it. Wow.

We cruised from Tampa to Cozumel. I had some alone time when we embarked where I tried to read, but mostly just had a panic attack that if anything happened to my babies from that moment on that there was absolutely nothing I could do about it.

Rum helped. More rum helped even more.

The next day we read and laughed and sunned and ate and drank and drank… Again, rum just makes everything better, doesn’t it?

Some new friends, lots of vitamin D, and a fabulous book didn’t hurt. Food for the soul.

We got pretty and ate and laughed and… drank more rum…

Kids? What kids?

Our day in Cozumel was perfect. 80 degrees, quiet stretch of beach, and bottomless margaritas. I don’t normally know Spanish, but after a few margaritas I became quite fluent… Lynn, who’d had substantially fewer liters of alcohol than I did an excellent job babysitting me and did my shopping and got me back to the boat safely and on time… And translated my Spanish to the locals who needed to know more than that I was a “muy blanca borracha,” or “very white drunk.”

The next day brought more sun, more rum, more food, more laughter, and more relaxation.

And more rum. Did I mention the rum before?

Four days of taking care of Mollie. Four days of no responsibilities, no diapers, no paperwork, no housework…

It was good for my soul… my heart… my mind… Probably every part of me except my liver, and it will recover soon enough.

I spend so much time telling mothers that they have to take care of themselves first, that they can’t take care of a family if they aren’t taking care of themselves. I’ve always said it, but I’ve never actually done it, and, wow. Four days of recharging my defunct batteries has given me more strength and motivation than I’ve had in a very, very long time.

Now I can’t figure out how I’m going to make it through the rest of the year without another one!

Saturday, January 28, 2012

Why their wives will be potty training them

I am a patient person. I am consistent and reliable and patient and I love my children dearly. In my work life I've helped dozens of adults and children learn to use the bathroom independently, whether for the first time or re-learning following a car accident or stroke, etc... I know what to do and how to do it and I am excellent at teaching my children new skills.

But I quit. These boys will never be potty trained.

Tyler is almost ready. I know he's at that place that if he just paid attention one time he'd get it. Just once. One day hopefully it will just click for him on its own, preferably before college. Fingers crossed. He's just much more excited be to be able to stick his hand freely down the front of his shorts and check out the neighborhood. I guess it's the little things in life ;)

Dax, on the other hand, is not ready. Not even close. He's so stinking smart, though, and I know with him things will just click, too, one day, and it will all make sense. He just seems so desensitized to discomfort and doesn't know that wet or dirty is bad when it comes to pee or poop. Doesn't bother him at all. Couple that will a g-tube liquid schedule which causes him to pee a lot in the morning and overnights but not so much in the afternoons, as well as a poop schedule that, Miralax or apple sauce or prune juice be damned, leaves him pooping a small country every three days whether we want him to or not, and, poof, you have a recipe for difficult toilet training.

Of course, I blame the mother. I haven't spent nearly enough time working on it, and my work schedule sucks, therefore we're left with endeavors into potty training that are fit into when it is convenient for me. That doesn't work in the potty world, and I know better, but you work with what you got.

Fast forward to today. I'm refreshed from a recent vacation, as caught up as I ever get, and I thought, "Today I will get the boys potty trained."

Our early interventionist told me earlier this week that she knew of someone who'd ditched undies and just used pants because there was more of a sensation of pee running down the legs, so I break out the shorts and pants. I strip down the boys and start pumping Dax with fluids via tube and tossing Ty a sippy cup any time he looks my way. We get on the big potty and play. I put a potty chair in the living room and have them sit and play. I put in Elmo's Potty Time video and we sing and sit on the potty and we dance and sing and play.

Meanwhile, both boys wet their pants. No biggie. We're just getting started. They'll get this today!!!

Dax comes over and he sits on the little potty, and it was then that I noticed a smell and saw a little poop smear on the seat. Holy crap on a cracker, I've actually just caught him right before a third-day poop!

I grab him up and we ruuuuuuun to the big potty and I sit him there and he starts immediately trying to get down. He cries, and he fights, and he screams, and he cries, and he flails, and he cries...

(I should add here that, historically, Dax has always had to squat to poop. You can sometimes tell it's about to go down (pun intended) by watching him bounce up and down into the squatting position for a bit, or if he comes and gives you a big bouncing lap dance.)

I know potty training time should be fun, but I also know that, for Dax to be successful with this particular poop, he's got to stay on the potty until he's finished. So, I hugged him and kissed him and I sang to him and we made poopy faces and I taught him to put his feet up on the toilet seat and hold on to the kiddy handles and push and we yelled "Out, poop, OUT!" and we yelled "Poop KING!" and we yelled "Get OUT of my belly!" and I gave him tummy massages and squeezed his stomach and after over 20 minutes of almost continuous crying on his part, and me agreeing it was time to fail so he wasn't scarred by the potty for life, I picked him up and carried him over to the diaper basket so he could exorcise the demons.

And that's when the shit hit the fan.

Not literally, but close.

Dax's feet had not even hit the floor yet when he pushed himself into a squatting position and shot poop across the carpet and onto the couch.

It. Just. Kept. Coming.

Tyler, of course, immediately steps in it.

I picked Dax back up and ran back into the bathroom, putting him back onto the potty, ripping off his poop-covered socks. I clean Ty's feet, get him out of the living room, and lock the gate, letting him run his newly naked hiney around the kitchen while I tend to poopapalooza. I got Dax's butt cleaned up, get him down, and then let him run around the kitchen while I venture into the living room to assess the damage. One plastic bag and 20 wipes later I was almost ready to get the carpet cleaner out and life would be good again.

But wait.

When I walk back out into the kitchen, I find Lola the bulldog licking the floor and Dax's leg. He has pooped again, and peed this time, and she is cleaning it up for me. Dax slips down in the pee/poop/dog slobber puddle. I pick him up and clean him up once more.

As I went to get a diaper to put on him, he pulled out his g-tube. All the fluids I had been forcing into his tummy? Squirting out onto the floor with that lovely stomach acid smell we all know too well.

Lola came over to help clean that up, too.

I diapered up the boys, I got his g-tube put back in, I wiped off any of the various residues, I cloroxed the floor, and I scrubbed the living room floor and couch. I got the poop off my phone, off the counter top, off the little potty chair, off the baby gate, off the wall, and any other place with evidence.

Then I had a pity party and showered.

And now I'm eating the M&Ms that were purchased for their potty training successes.

My treat for a dismal potty training failure.

The spring. Maybe I'll be brave enough again in the spring.

Saturday, January 14, 2012

Special needs parenting... Said better than I ever could

I saw this on another blog and... Wow.

So perfectly written by Candace Barnes - A Cerebral Palsy Mom

Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next. We become educated in the legal, medical, and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it, eat it, sleep it, we also dream it. Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled, humiliated, felt guilty, made ashamed, brought to the point of begging at times, made angry, made determined, driven to the point of desperation, all for the sake of our children. We have sat in hospitals for days, weeks, months praying that our child makes it one more day, praying that our child lives long enough to know how much we love them, stood the onslaught of surgeries that could be life threatening, procedures that could make the situation worse, been through treatments that would make a grown man cringe, all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things. We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made, every piece of equipment, every new medication, every strange idea on the hope that it might work. We have dealt with quacks, conmen, inexperienced people, uncaring individuals, rudeness, and cruelty toward our children. We have lost everything, sold everything, traded everything in the pursuit of help for our children. We have given up friendships, family, relationships, and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people. We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts, angst, miseries, hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors, more surgeries, more treatments and procedures with a smile on their face. We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have, we see their abilities as well as their limitations when they go through the procedures, treatments, surgeries, and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage, determination and – most of – the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives. So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies, more complicated messes, and deal with more situations than you can imagine. We have been bent, sometimes broken, medicated, treated, depressed, angry, sad, and most of all a little fearful of the future. We have slayed more dragons, conquered more worlds, invented more items, discovered more truths, and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors, therapists, surgeons, nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses, other children, housework, jobs, friends, family, society, and our own health because we have been busy in the pursuit of a better life for our children. So do not think that we are incompetent – instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves. So listen to us when we speak because we know what we are talking about. Don’t talk down to us, respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive, we earned it the hardest way possible, and we carry that badge of honor with us in every single thing we do, every word we speak, and every action we take.