Look for a new posts soon!

Things have been awfully busy here. When I'm not refreshing the kid for school, correcting behavior, fixing meals and running between doctors appointments, I've either been scrapping, reading (you know, Chiari & Asperger's) or catching up on emails. Sometimes, I sleep.

There's one really interesting thing that has transpired lately. There seems to be a theme running through my life at the moment, thanks to the powers of the Universe. When these themes manifest over and over again, I take heed. The current theme is the link between gratitude and karma. And boy, do have a lot to post about that with one particular example I find morbidly fascinating. A study in psychology maybe? Extreme narcissism? 

Whatever it is it reinforces the lessons I've learned over the years and makes me thankful for everything I have, and how lucky I am to have my husband alive and well. It reminds me to be grateful for our wonderful support system during our battle with Arnold Chiari (he's a jerk!) and coping with autism.

I haven't decide whether to splay it out as is or just write a piece about it. It was an interesting interaction to say the least. To see it as is would be like watching a train wreck. Or maybe some awful B rated biker chick movie. I need to think about how to portray this story...

In the works are also several more scrap pages and a guest post for Scifake.com. Lots to come when I can find more time.

Zipperheads

I updated an older post with images of my husband's Chiari scar a month post-op, however, I feel for the sake of Chiari Awareness the images warrant their own post. You may copy these images for personal and public use. I just ask that you do not alter the images or hot-link them from me.

Without further a-do...

Wanting meltdowns to melt-a-way.

"Mommy", he asks, "is it okay if I call the cat the 'p' word?" 


"No, you'll get in trouble", I reply in harmony with my husband. I think about it for a minute. "Wait...what 'p' word do you mean?"

In a whisper, he says shyly, "Patches".

Patches was my cat's name when I adopted her. She didn't look like a Patches and I can't say she had a great life under that name, so I changed it. I had to laugh at the kid's sheer innocence. Patches, of course, not that other word. Not pussy cat... The boy makes me laugh. I still had to explain to him that the cat's name was special and something I worked hard to get her to recognize as her name. We don't want to remind her of her previous life.

Summer is is coming upon its last full month. Our August calendar isn't filling up quite so quickly either, which I hope means that we will have free time to enjoy the sun and sand, water and outings that we are accustomed to this time of year. I also hope that means less time in waiting rooms and hospitals along with fewer trips to the pharmacy.

My greatest hope is that my kid can will feel more secure, feel like life is normal again. The cracks are starting to really show as his behavior reverts. We are having more meltdowns, he is clingy, he is more impulsive, he just isn't at his best.

The other day, he had a meltdown because his aunt's daughter came for a surprise visit, usurping his special time between him and his aunt. It's his only real one on one time these days. He figured if his cousin spent the night here, he could make up for that lost time with his aunt; A plan to which neither his aunt nor parents agreed. 

It was two hours of pure autistic meltdown. As his parents, we were not prepared at all. It was the longest meltdown we've had in quite a long time. It wasn't especially violent, but it was filled with spiteful words, sobbing, wailing and stopped time in our house. It was also the third one in a week.

We simply aren't used to these long, dramatic meltdowns anymore. For the hubby, its terrible. His brain is still healing meaning he is sensitive to sounds and does not have the patience he once did. He gets as frustrated as the kid because he a) can't squash the meltdown and b) can barely handle it because the shrillness and shrieking causes sensory overload. 

I have to admit that I was half deer caught in the headlights and half calming force. I thought to myself that I needed to re-read my "How to Deal with Metldowns" section in our Family Manual. The kid looked to me to help him negotiate and cope with his feelings and I was a tired, stuttering mess.

I should add to this that our current heatwave effected all of us at the time: I have no tolerance to heat like this, never have and heat exhaustion is something I succumb to easily. I had just begun to cool down after being outside when the tantrum ensued. The kid was also coming directly in from the heat. He was hot, tired and upset. The hubby's pain has increased significantly since the heatwave started, which is common for Chiarians, but worse being only two months post-op and possibly having a leak of some sort (increased intra-cranial pressure bites). As a family, we muddled through the whole thing.

I don't think the kid understands how to cope with what he is feeling. I've said this before and I'll say it again: Watching and worrying about a parent go through a major medical condition, surgery and recovery is hard for an adult. Not only is the kid not an adult, he's emotionally delayed thanks to Asperger's Syndrome.

While he was amazing during the initial process and immediately after the surgery, he's now able to have all those fears and worries come to the forefront (as it is for all of us). He's adjusting to Daddy in recovery as opposed to Daddy the Mother Hen, fart joke buddy, and generally his go to guy for all important kid stuff. He's adjusting to what Chiari means for his Dad, him and his family. This is just one phase of what will be a long recovery. 

With Asperger's, having your entire world turned up-side-down and inside-out is devastating. Anyone who doesn't realize that is not thinking about the kid. Daddy has always been his rock, so this is the hardest thing the kid has ever been through. Daddy always understands him, is always there for him, is his... well, dad.

But it isn't the same anymore. Daddy isn't around-- not like at work not around, but convalescing not around. The strongest man alive according to the kid isn't so strong right now. Yet, Daddy is trying his hardest to still fill his own large shoes, even if its in short increments. There are times when Daddy tries to be there longer, be stronger, push past his current limits to be the best dad he can be. Sometimes they have those normal for them father-son moments. Sometimes pushing past his limits, Daddy doesn't always succeed... yet the effort means something for all of us.

Because of Chiari changing our lives, I am looking for a therapist for the kid to see. I would prefer a male, but it is rare to find a male therapist willing to work with children-- my husband was one of the only in our area. There are three female candidates, one is probably out because she is the hubby's boss (and so busy!), which is a shame because I trust her the most. The other is the one we saw previously, who made no great impression on me (or the kid). The third is through the agency dealing with visitation, but who has not actually started work yet.

Speaking of visitation, that adds another stressor onto my poor kid. While we've discussed it briefly with him (because with Asperger's, you need a lot of warning for any new thing), we haven't gone into great detail. The hubby and I are going to visit with visitation therapist first to go over the information and get some guidance on the best ways to discuss the subject in detail. I need to do some reading, too, about Asperger's and supervised visitation (there really isn't much out there, ugh).

This is something I'm not really good at because I have a gut reaction that is extremely hard to control when I even think of the subject. So, the hubby has been taking the reigns on this matter. In a strange way, that has been positive thing-- it reaffirms fatherly strength.

With all that has happened, its no wonder we are back to meltdown several times a week. It's not only the hubby that is recovering, but each person in our family. Providing the kid with a safe outlet to process all his emotions is at the top of my daily to-do list. Remembering to have patience with everyone, including myself, is in the second spot. Reminding myself that its okay to muddle through life when it becomes unfamiliar is just fine, too. I wish I could have a magic candy that not only melted in his mouth, but melted away the kids meltdowns and made him feel like he was again on solid, less stressful ground.

Mom's Day Off

Every so often, I tell my family that I am taking the day off. Even mom's need time to re-charge their batteries. To be able to take care of our families, we moms need some time to enjoy non-mom and non-wife things. Kids and husbands don't always realize it, but they get a lot more play time than their wives and mothers. (I'm not sure how this works in same-sex relationships... and I'd be interested to know if one partner feels like a traditional "mom" and needs to set boundaries down harder to take a day off...)

I prepared the kid earlier this week that Saturday was going to be an "entertain yourself day". or at least a "don't expect mom to succumb to your every whim day". I told the kid, of course, that I'd provide three meals for him, but snackage was his responsibility (and possibly my nightmare). I also reminded him that I'll be around for boo-boo mending, but otherwise, pretend your mom is at the spa.

I said the similar lines to my husband. His response was supportive, with a hint of "why is she telling me this?" because he doesn't truly realize how difficult it is for me to get away. That's understandable since he's sequestered more often than not in his convalescent area (aka our bedroom). He'd love to need to day off instead of dreaming of having everyday on, so to speak.

I thought I had everyone prepared. Thought being the operative word. You see, my little social aspie creature, who a year ago would be happy to go an entire day without having to have a conversation with anyone around him has turned the opposite direction. The poor child is used to having someone entertain him in some way, shape or form. He's spent the past few months with family and/or friends, visiting or being visited, at home doing something extraordinarily fun or out and about doing summery things. It's great and has been a huge distraction in the absence of his father from his daily life, but it does not bode well when we have a chance for down-time... or I have a chance for down-time.

While I got to sleep in until eleven in the morning (sleeping in was more like I couldn't be roused due to sheer exhaustion), I haven't had much other time off. As a matter of fact, I spent the greater portion of today doing what I always do. Then when I reminded said kid about said day off for mama, he promptly called his aunt to tell her I needed him to go spend the night with her. Cause, you know, I'm taking the day off?

She wasn't game and she shouldn't have to be. My boy has plenty of independent play skills (despite him forgetting he has them) along with plenty of games, books, movies and toys to provide a rich, fun experience when no one is around to play with him. Instead, he was bored (which is code for "help me cope with not getting my expectations met").

And he started to meltdown... so Mom swooped in, took him outside where he was more able to keep himself together. We reviewed the misery which is his life (Sam's not home, Dad is having a bad pain day and Moster said no to staying the night). I told some stories of my childhood that revolved around having to entertain myself when I didn't want to. I'm not sure those stories help as much as the change of scenery and talking being used as a way to cope do.

I love that my kid is relishing in socialization while hating that he isn't prone to moderation. It's all or nothing. One extreme to the next... for now. The boy has learned a lot in the past year, especially in the past three or so months. He's been asked to deal with a huge amount of stress, more than any kid should have to bear. Through it all, he's been absolutely amazing considering all life has thrown our way... thrown his way.

Now that Daddy is out of the woods as far as he knows, we are seeing the kid's stress manifest in strange new ways, like this no longer being able to keep himself company anymore and not wanting any downtime at all. He's all go-go-go these days. Of course, that makes it harder for me to take any breaks because either I'm going with him, shadowing him with his peers and on the days he's sleeping over at my sister's, I'm running the husband to appointments, running errands and taking care of non-kid related things.

I knew he's been in sorta Asperger's pressure cooker all this time. I just didn't know what the result would be or when the lid would blow off-- I just knew eventually we'd find out! Well, this is part of it. The child doesn't want to be alone... at all. This isn't anxiety related, or not like it was before the Paxil (irrational fears keeping him prisoner), but its something. It's not wanting time to dwell on the what ifs, perhaps?

In any case, I'm trying hard to help him cope through this period, to remind him of his wonderful imagination and other outlets he has that are fun, yet independent. And I am encouraging him to do little things with his dad, like have lunch in bed together. As a matter of fact, I've been able to write this because the two guys went to the store together-- Daddy was finally feeling up to it.

Yet, I'm thinking with the manifestation of this newest symptom-- the inability to do anything solo-- it may be appropriate to go back to therapy. As a mom, I see this as a regression back into toddler-hood, when I couldn't take my eyes of my boy for a second without disaster. We are just a small step away from bringing him into the bathroom with us because he refuses to occupy any room by himself for more than two minutes. We are also a small step away from losing the ability to sleep in his room by himself (or self-soothe at bedtime). As the stress creeps out of his little (okay, bus sized) head, I worry about regression.

We've worked so hard for so long on all these independent and socialization skills. Matt has worked hard, extremely hard on acquiring skills and coping mechanisms, managing his behavior and expressing himself and feelings. I saw today his own frustration seep out. Yet in this, he recognized and expressed that he did not like how he was feeling. My heart breaks for him in these moments.

Facing the mortality of a loved one is hard as hell for a normal adult. For a kid with Asperger's Syndrome... well... is there an expression worse than "hard as hell"? Whatever you can come up with would fit.

So while I didn't get a true day off (which I never really expected anyway), I did get something that is important to moms: I got an understanding, a clearer picture of my son's reaction to his father's Chiari recovery. The only way I can help him get through this is to see the big picture. It's just one piece to the newest puzzle we are putting together.

We'll just keep working on it until he can find that balance between introversion and extroversion, always wanting to be alone or never wanting to be alone. Until we get it right, we'll all be taking a lot of deep breaths and taking things one second at a time. Like boy said just a few minutes ago (they came home a little while ago) "We'll try again tomorrow for a day off".

For the love of Chiari: An Update

When my husband does something, he does it right!

Chiari Malformations are so intricate, its amazes me. First, the mere ability to survive (and survive well), then the powers of the brain (as in my hubby is still as sharp as a tack) following that all up with incredible pain (and still being able to keep his cool). Okay, maybe this is what my hubby so awesome, despite Chiari.

He goes in for lots of scans next week. We'll both be glad when these are done because we will find out if he has a slow leak or not. If so, then its more surgery... if not, its back to recovery as usual. And care can be handed over to the neurologist-- meaning no more two hour drives to see the surgeon. It also means he'll be able to get back to work before summer is over. My poor man is chomping at the bit to get back into the swing of things.

In the meantime, we are exercising his reflexes and brain with a variety of video games. We are getting out of the house, he's driving a little and getting to run errands (yay, because I'm so sick of visiting Walgreens every single day). We are also hoping he gets cleared for more strenuous activities, like swimming and sex. (sex, okay, we like to have sex!)

The kid is feeling a bit more settled. I am very proud of the way he's handled himself during this whole process. It's a lot to ask of a little one, especially with autism. We have used all those coping skills and learned new ones.

One day, I'll have more time to go over all things Chiari, but for now, we have a rare moment to enjoy a bad movie and pizza sans kid. Oh, and tomorrow my husband goes into the next year of his life thanks to some really amazing doctors, awesome family and super friends. Cheers!

Frakenboot

I started this last Friday. I'm finishing it today, Interweb-Gods willing. 

Yes, it does. I've shed tears while trying to keep up with my kid, walk up the stairs and while doing other day to day things we take for granted. I saw my normal doctor who only wanted me to take a strong pain killer for breakthrough pain, and ibuprofen for the rest, except she didn't prescribe a strong pain killer. So, uh, thanks.

The doctor did get me in to see an orthopedic surgeon (or something) later this morning. I did something to my foot but the ER only focused on acute care and the doctor only focused on immobilizing my foot in a boot contraption that makes me feel and walk like Frankenstein. Senior citizens using walkers can out run me. So, I have dubbed this contraption of my foot "Frakenboot".

My fear, the thing that causes me great anxiety, is how on earth am I going to walk in the sand to the water in any sort of non-plaster contraption. And what if this new doctor says I need plastering? I might need to get plastered, just not the "of paris" kind. Lastly, how on earth am I going to keep up with my autistic kid, who is in full "I want FREEEEEDDDOOOMMM" (Bravehart like) mode because its summer and his friends are always knocking on our door. He's proven in the last week that he also needs "SSSUUUPPPERRRVISSSIONNN" (Mommy like) to avoid the harry moments of peer pressure he's for which he's not ready or fully equipped to handle.

Then there's the husband, still in recovery, still waiting for the doctor to figure out how to scan his brain for two hours in a tube when the hubby can't handle it.

The timing is terrible.

Now here is the continuation. I am too lazy to go back and change tenses. If you have no idea what I mean by 'tenses', Lord help you.

The orthopedic surgeon was meh. He was all set to take images of my foot until he asked me about my cycle. It was delayed, so he stance no x-rays for potentially pregnant women. I said "aww.... c'mon... I'll wear a shield". I asked if he'd amputate the whole damn foot instead. No dice.

Good news, though: The fact the location of the pain changed was a good sign... a sign of a sprain as opposed to micro-fractures. Explaining that to my pain sensors does no good, unfortunately. They don't care what is causing pain.; they just say eff-off when I walk too much.

The doc gave me some exercises to do daily so that my foot doesn't heel in a ballerina position. Despite my wanting to be as graceful as a ballerina, I have done said exercises. I have to use the Frakenboot, but take two two hour breaks a day without it. Part of that time requires ice and elevation and part regular foot use.

When discussing something for pain, the doctor had the pre-pregnant attitude. Normally, he'd prescribe Tyelnol 3 (common for sprains, which I know because this foot is on sprain number three), but in my case he told me absolutely NO PAIN MEDICATION, not even an ibuprofen.

Naturally, we went directly to the drug store for home pregnancy tests after the appointment. As soon as that stick read negative, I had myself some ibuprofen. Later that night, I had two cocktails. Well, one and half really because I started falling asleep. I'm not a drinker by any means.

My favorite part of the discussion was having someone help me chase after my kid all day so I can rest. While most people can hire a baby-sitter and/or mother's helper right off the street, we require a professional with college degrees or so many years of experiences... and licenses, insurance and bondage even. That $8 an hour quickly rises to $20 or more an hour. Stipends reduce the cost, but in times like these would exhaust our meager resources. Ya know, cause of the husband being out of work due to brain surgery.

Yet, when you are a specialist, such cost of care isn't tallied up in your head, but your accountants.

Now I know I'm not pregnant and my foot feels a little better. It's too bad that the Frakenboot doesn't fit perfectly. It created a small hole in my leg that is becoming infected. I'm hoping that heals so I don't need to go back to my regular doctor because we have enough doctor's visits scheduled this month. I'm getting kinda tired of them.

The one good exercise the orthopedic surgeon recommended is that I walk on the sand use my toes to play with it. I take this as a sign that the Universe is telling me to take a vacation.

June in review

Auntie Em looking stunning at the beach!

Matt hitting the waves!

My niece Erica who is so 1940s chic

Free Fall, Baby!!

He's too cool for this.

The girls talked Matt into trying something new!

Auntie Em, Chrissa, Erica and Matt: My boy gave them the tour of the beach and boardwalk.

I don't know exactly where to start or what subject to write about. June proved to be one of those months that people write books and then go on to make movies about. Except I don't have some old family farmhouse with infinite guest rooms in a picturesque setting. I live in a what's technically considered a condo, but people call a townhouse or duplex, which we stuffed five extra people in like sardines.

I did my best to make everyone feel comfortable and welcomed, despite my not being exactly set up for hosting guests. Normally, my guests seem to BYOF (or bring their own furniture) because they are staying for more than a week. This time, it was sleeping bags, pillows and air mattresses (thanks to Mom and Dad A.) and blankets in a pick your place to slumber manner.

My boy met my oldest sister, his aunt whom I'll refer to as Auntie Em, for the first time since he's was a baby. With his asperger's, family is important to him (which seems in opposition with the popular understanding of autism, but really isn't). With Auntie Em and him, the relationship just flowed naturally for the both of him. She understood him because she understood herself, perhaps. After all, both of their brains are different.

Auntie Em has terminal brain cancer. It affects her in many ways some which are similar to Matt and the other similar to my hubby's. The kid asked if Auntie Em was dying to which I answered truthfully. She's out lived her prognosis by an amazing amount of time, which I hope she continues to do.

Because having the family here wasn't enough fun, for Father's Day, we bought the kid's Dad dwarf hamsters- a male and female named Herman and Skittles. They are nice little tings, social and the kid does really well with them. Socks thinks that we bought them for her sometimes meowing for furry, small kitty treats.

In the middle of all the family fun, the hubby had a set-back. Apparently, he pushed himself too much physically, so now he may have a slow cerebral spinal fluid leak or slow bleed in the brain. We had a fun trip to the local ER. They never know what to do with him. Basically, they gave him some magic pill to reduce his increased pain and we zipped up to the neurosurgeon two days later, who ordered MRIs and MRAs. Unfortunately, the hubby couldn't stand the closed in tube so now he need sedation or something else. It's unresolved at the moment.

Until then, its vigilant care for him from Nurse Carrie. There's so much to this that it's scary at times. It was hard to find balance between family visiting and husband recovery. Of course everyone understood. My mom was thrilled despite me being so divided in attention. She had her daughters in one space many times, got alone time with each of them and many, many memories were made that were super special for moms.

So, let's put the family reunion in pictures:

My parents wedding photo with my sisters in their pretty dresses.

 

My mom brought copies of old pictures to share with the family. I made copies and everyone got a set from Snapfish.com (love that site for photo printing!!) Then of course, the hamster cage and one hamster. Herman is more social than his mate, Skittles. She's a bitchy little thing.

Hamster cage Chrissa had to help us put together.

Herman (hamsters are hard to photograph!) Skittles is albino.

All and all it was a great reunion. I hadn't seen my sister or her daughters in years. I hope we get to visit again (I have a feeling we will see a niece or two in the near future since they get free lodging). Matt really got along with his cousins, especially since their dad brought them up as gamer girls.

I'm waiting for life to get settled again. I don't have much time to do anything. Matt is still terribly unsettled with his dad being in recovery and having this set back. The family visiting threw us all off our schedules, though he did remarkably well considering. It's hard for him to switch gears, going from lots of attention to just the mom and moments with recovering dad. That's the hardest for Matt, I think. Not having John well enough. They used to spend so much time together, now it so... different.



That's only a tiny bit of what happened... a synopsis. Our July calendar is IN-freaking-SANE between doctor's appointments, family functions, swimming lessons for the kid and the regular day to day stuff. Plus, I just hurt my foot-- the bad one I sprained entirely as a teenager. Who wants to go to the ER on The Fourth of July weekend? Travel time around here has tripled. A ten minute drive is now takes thirty. No thanks, I'll live. I don't want a cast because I need those beach days.

Not a Zipperhead

I am completely amazed at the hubby's scar from his Chiari correction surgery:

I may be reposting this, so forgive  me, but we've been busy with family and doctor's appointments. At said doctor's appointments, my husband's scar is always admired. I thought I'd share with you the non-traditional zipperhead scar.

Dr. Rudi and the post op follow up

Dr. Rudi isn't really a doctor, but a Physician's Assistant. I don't mind because in my experience, they have a better bedside manner. Dr. Rudi didn't make a great first impression on my when we went for the hubby's pre-operative appointment, except when I stumped him with my questions, he got the surgeon to talk to us.

The poor guy looks like he's a kid fresh out of the sandbox. I expected to see him with a sand shovel in his hand and juice box in the other. Okay, maybe that's an exaggeration. He is tall, his facial features are kinda mature, too. He probably plays Call of Duty with his roommates at night.

We were definitely his first Chiari case and an exercise in learning for his young mind. At our first meeting, Dr. Rudi certainly lacked the confidence that experience brings. On our second meeting, he had a little more confidence in his skills. I told the hubby he must have been brushing up since we saw last him.

I still had to lend him a hand. The hubby complained of feeling "disjointed", like he was watching the movie that was his life. Dr. Rudi had a hard time with this one. He gave one reason for that that seemed very vague and we watched his confidence plummet. I felt bad for the poor guy, so I chimed in with a timely question: "Couldn't the pro-longed headache cause that sort of sensation?". 

I could have been a brat because I was in that mood (the hubby and I a tense debate over pantyhose, mysoginy and the workplace in the house we waited to be seen). But Dr. Rudi's demeanor was somewhat disarming. The fact that he remembered my husband's case and seemed to have devoted time to it made me empathetic to the whole experience. The fact that he apologized for our wait (They had to do emergency surgery, which we both understood and appreciated because it could have been my husband in that emergency situation) and for my husband having to go to the ER was extremely uncessary, but really nice. Brattiness wouldn't have done anyone any good.

Dr. Rudi said everything looked good and sounded normal. He explained that they used the pericardium because they found that the mesh leaked too often. While donor tissue may take longer to heal and may have issues, those issues are less severe than cerebral-spinal fluid leak. That was information I didn't know, so score one on patient education.

The hubby was prescribed some Prednisone to help relieve the inflammation which in turn will help to reduce the headaches. Dr. Rudi, unbeknownst to us, asked the ER to administer these to the hubby last week touting the steroids importance in reducing pressure on the brain. It was very disappointing to learn the ER failed us.

Hubby also got a new prescription for pain meds, but was asked to try to stretch out the dosage, which he is trying to do. The unfortunate part is now that he has less of a headache, he has more neck pain. No surprise between the way he slept last night and the fact that he had all his neck muscles sliced apart.

The recovery continues. I'm hoping we are in phase three now: Relief from headaches, larger appetite and more activity. Our next appointment is in month. Where we go from there I have no idea. He will see the actual surgeon at that appointment, but it would be nice if he sees him with Dr. Rudi. I've started to like this kid. He is going to be great at what he does someday.

Chiair Malfomation Info

This is courtesy of the Brain and Spine Foundation Online out of the UK. It's good info, except we have to remember that every doctor seems to type Chiari differently. Type II doesn't necessarily mean Arnold Chiari in the states. I think. The doctors always confuse me with this one or at least the ones who even know what a Chiari Malformation is do.

Tomorrow we see the neurosurgeon or, at least, one of his cronies. If its the Nurse Practitioner who didn't know she couldn't write a valid narcotic prescription and signed the order to have my husband released after only 16 hours after surgery, someone will have to keep me from punching her in the nose. My husband is the one who threatens to punch the surgeon in the nose because he wasn't honest about the pain during recovery. But I'm going to have words with the NP... strong, effective words, like either reschedule our appointment or get me someone else as I am firing you. FIRED.

16 hours... I'm still pissed. Had I not had the wherewithall and not been well read, my husband would have died. Had I not helped a friend through nursing school by studying with her (and maybe doing her homework...maybe), I would have completely fallen short on aftercare. And it would have been nice if someone gave the care provider a clue about the intensity. Thanks. Thanks a lot.

This is why I put up a stink. Sixteen hours is not long enough. We went to ER because he was dehydrated and possibly had meningitis and not enough antibiotic. Thanks. Was it the insurance company? Maybe. Was it to free up a bed in the ICU without taking one up on the floor? Maybe.

I'm afraid good patient care is dead and we should have nursing skills like our great-great-ancestors. Someone needs to practice medicine, might as well be us. Who is up for self-stitching courses? Midwifery? Something.

The Surgery: Chopping up my man & more

[[WARNING If you're squeamish, you  might want to skip this post. It's not graphic per se, but its very specific in defining brain surgery. I had a hard time writing it, so it might be hard to read it.]] 

While I have time, let me tell what they did my husband. I have a hard time thinking about it because its gives me the heebie-jeebies (did spell that correctly?). It's also absolutely amazing. Who thinks up this stuff? I thank god that they do, but it still blows my mind (and it's blowing my husband's mind literally!).

This is the sum of all parts, to the best of my knowledge. None of this has been easy to understand. The medical dictionary has been my friend the past two months. I've done so much reading, questioning and explaining that I could probably start work as a doctor tomorrow-- except I don't like people meat. Blood is fine, not an issue for me at all, but get below the skin and I can't tolerate it (I make my husband tell me "when it's over" when we watch anything that has any sorta "gore"... I shut my eyes and cover my face.):

First, they had to dissect the muscles at the base of the skull to the C1 vertebrate. Apparently that in itself takes a lot of work as that area of the body contains a lot of muscle. I jokingly asked the surgeon if I could still whap the husband upside the head (or in that area), to which the surgeon replied a hearty yes- I could hit him there as much as I liked because the muscles give adequate cushioning.

The doctors then shave the bone at the base of the skull until its the thickness of an egg shell. They carefully take out that thinned back portion of the skull. My husbands says it feels like they took four inches off his skull, but my guess is its less than that-- it just feels that way to him. That part of the operation I think is called a suboccipital decompressive craniectomy. Now that's a name to chew on.

Either before or after the above, a temporary shunt was put in my husband to drain away all of his spinal fluid and maybe cerebral fluid (I'm not sure). This allows room for everything messed with, including the brain, to go through the inflammation that occurs during the healing process. Without this part, his head would implode after surgery and his brain would be literally crushed or the brain stem... not something to mess with, but it's part of why he's had the world's worst headache for the past two weeks. 

The surgeons then doa C1 laminectomy, where they basically do that bone shaving thing to the outer bone of the C1 vertebrate. This just allows more room for my husband's big brain. And probably helps its juices all go in the right places. I don't know for sure. 

Next came the duraplasty. I think that's where they opened up the covering of the brain. The rockstar doctor said he'd peak at the brain at this time to remove any adhesions (any area of brain matter that was damaged from rubbing against the skull). Whether they did or not, I have no clue because we care-takers never laid eyes on the doctors in the sixteen hours my man was in the hospital after the surgery. And of course, I went bananas, so I probably would have forgotten to ask anyway.

The final step (besides putting my husband back together) was taking a piece of pericardium (basically the sac that holds your heart) that was donated by some wonderful person after they died, to help hold his brain in place. If it were not for this unidentified organ donor, none of this would be possible. I believe they used to use a Kevlar like mesh for this, but the cutting edge technology guys and gals figured out that the pericardium makes for a better long-term outcome.

Naturally, they closed him all up and stapled his skin together. They put surgical tape (that's still stuck on-- sticky sh*t!!!) over the incision site--which isn't that big, by the way-- it was supposed to eight to ten inches, but ended up about four to six inches long. Of course, the incision in the muscle and other parts may be much longer than the superficial one.

It's cutting edge stuff, but its heavy and deep. The recovery is hell. I now know why the doctors would only say that my husband would have the worst headache of his life and feel "crumby for awhile". You'll "probably get a strain of meningitis (not the spinal one that kills everyone) which will make you feel worse and intensify the headache". Good lord, I hope we paid for someone's summer home in France.

No definitive descriptions of anything when I asked questions about recovery-- very vague and no concrete answers. They say: "Everyone is different. Every responds differently. There are lots of complications and we aren't perfect. We screw up sometimes" (of course the law makes them say that--informed consent). That was the only clear picture we got-- that no one knows for sure how your body will react to all this mess and doctors aren't gods, but that this surgery is the only way you won't be dead by Christmas.

If they told you what really happens-- what you really go through during the recovery process--  nobody would ever willingly go through this sorta surgery. My poor husband wishes he didn't do this, wishes that the pain would just let up and thinks that death might have been an okay option in hindsight. The headache could last up to six weeks-- I couldn't effing imagine a six week long "migraine times a thousand" (how my hubby describes it). Nope, I'll just enjoy the last days of my life, thanks, buh-bye now.

The sad thing is that he was prescribed 5/325 of Oxycodone and told to take 1 to 2 every four hours. Well, a Tylenol gives him more relief than the narcotic. I'm sure there is a good reason for the pain meds prescribed after this surgery, but I'd like to know it. Maybe its more for the muscle pain? His pills certainly wouldn't help me with a headache, so what purpose do they serve besides the 325mg of Tylenol its has in it.

And because this surgery was such a big deal, full of such huge unknowns, its probably a large part of my meltdown. Okay, let him out of the hospital about 16 hours after surgery (practically an outpatient procedure span of time) so I can take him home and kill him. You need to at least be a nurse to care for him-- and thank god I helped a girl get through nursing school,  read as much as I could about the procedures and the aftercare or he would have been dead by now.

Sidebar:

We've already been to the ER once. He probably does have a strain of meningitis-- starting the day before the ER trip-- and some dehydration because he wasn't eating at all nor drinking much. I pretty much thought he was going to die in our bed. (It's part of why I can't sleep-- too busy checking vitals. The other half is imagining what they've done to him *shudder*.)


At the ER, we had to explain his condition and the corrective surgery he underwent. I brought the discharge papers for reference, but even still we had to explain to doctors and nurses what it all meant-- the surgeon's PA eventually called, explained it to the ER doctor and then told him what check and to do. It's a little scary when the ER doesn't know what to do with you and to see them look at you quizzically.  

"You had what done for what?!?!" Look mom, no hands!!!  Or skull!! 

Sheesh.


That's it-- everything in a nutshell, tied up with a bow. I'm gonna stop now because I would like to stop thinking about this and get some sleep.  Or not. I'm going to try to not to envision how much he's suffering, how little I can do and the magnitude of what he's had done to his head. It's like hitting your computer with a sledgehammer and putting it back together again to make it work better.


A size 12 brain in a size 10 skull...

The Dark Side

The Dark Side is not nearly as fun or interesting as The Far Side, a comic which my father read to me faithfully every Sunday until I old enough to understand it without explanation. The Dark Side is more defined, somewhat fascinating (it must be or Discovery ID wouldn't exist), something we all have experienced at some point in our lives, but something that a lot of people don't want to talk about. It's a place within myself that I visited recently (and have already talked about, but here comes more).

I have this really bad habit of being an open book. It drives my husband absolutely crazy-- he knows I blog about us, our life and junk, but I have to be careful to strike a balance between my big, open and his sealed shut mouths. It's the same with other social media, like Facebook. I have the urge to just let all hang out, but do my best to self-edit. Lately, I haven't been so great at that.

My son has no innate ability to socially filter his words thanks to Aspergers. He says what feels in the moment with no regard for how it might make someone else feel. He's brutally honest. When he goes to dark side, he can make Darth Vader look like a puppy with a silk bow around his neck in a basket with a naked baby. I've developed such a thick skin to that sorta behavior that I sometimes quietly marvel at his creativity or laugh on the inside at the sheer outlandishness of his words. Kid, where do you come up with stuff?

But me? I was blessed with an incredibly diplomatic and rational nature, or so I've been told. There are times when I have to remember that it was no blessing and not a trait I was born with.. Not at all, the ability to look at a situation from all sides, consider everyone's feelings and act accordingly was forged in many great fires. I was born with an Irish temper and a Viking lust for... life (?) or maybe just a good survival instinct.

I struggled with the point of this whole post all day long. Well, as much as a busy mom with a recovering husband (and cats that now hate her) can manage to struggle with a thought independent from caring for loved ones and making a big pot of stew. That basically means as I laid in bed desperately trying to not check my husband's vitals and flipping through late night television shows, when it came to me, I think. (And I make no promise that this will be sweet, short or easy)

That Dark Side is the part of we don't share with everyone we interact with--unless you have a neurological issue-- and a part we often try covering up, excusing, ignoring, delaying and/or putting on the back burner.

If there is one common thing about that darker part of ourselves, its that every single one of us has triggers-- those things that push you over that proverbial edge. What happens once we start that decent into madness varies as do the levels. Yet, it all starts with with a small spark or sudden fire or a bit of both that makes us virtual strangers to ourselves. Sometimes it is fast and hard, sometimes its a snowball, sometimes its trickle, sometimes a gush.

These triggers (or if you are lucky, its just one thing) are the pink elephants in our minds. (There's no particular reason they are pink, it just sounds cool). If you're proactive, aware, or if you are in the midst of therapy, you work on naming, describing, controlling and coping when the elephant poops so much in your head that the poop spills out of your head at the wrong moments.

You paint the elephant with something luminescent so that you can stop yourself from picking up that Sith Light Sabre and rule your world with tyranny.

Recently, when speaking with the supervised visitation therapist (like there wasn't enough going on already), I had stated that I felt I'd become complacent in keeping my ex-husband at bay. The threat he is to my family, to me, to my life and my son never stopped-- I'd just felt safer because the seas had remained calm for several years. Then I got served. Literally and figuratively in court because I was so complacent I was unprepared for my ex to even show up (and he did, I got caught unprepared which is why I got to talk to a therapist at the visitation center).

The lesson the Universe was given to me went unlearned. The painted elephants in my head needed a new coat, but I ignored them. While I was busy lecturing my husband on why he should listen to those subtle (or sometimes loud) messages the cosmic forces seem to deliver us little beings, I ignored my own. For years, I kept saying to myself "If we just get over this last hurdle, I'm going to allow myself to have a good cry". Must. Push. Through.

It's flawed logic. It's misogynistic, too, because so much is expected of women. It's why they don't make good Jedis and if they do make it to that most respected of places, they sacrificed something-- relationships, children, career, orgasms-- are b-words... but that's a post I'll leave for the young feminists to address.

If you dissect the mantra of pushing through the hurdles and crying later, if you flip it over, it reads like a question: "If I sacrifice my needs for the greater good until [insert events here], I'm bound to see a good result, right?"

Wrong.

This is where that whole Autism being test drives for future, better brain wiring-- evolution in progress-- theory comes into play. Where neuro-typical people fail, autistic people thrive. They deal with their issues in the moment, as they come. They see the elephant without even needing to paint it. Their Dark Side is always illuminated. Covering up the internal, emotional ickiness is simply illogical. Imagine that.

The Dark Side is part of us, all of us. It's part of how we are hard-wired and part of how we are forged in the sunshine and storms of life. It's not inherently bad, its just part of that balance positive and negative, ying-yang stuff. Its our job to maintain our own inner balance for the greater good, not to dismiss it. Don't cut off your nose to spite your face, so speak.

If you play your cards right, you find people with whom you can share those really negative things, sometimes without even speaking about them. I have that with my husband. There is a lot unsaid between us. There's that Hallmark card connection where we know our lives parallel in some odd way, so that it doesn't need to be said, but we'll hand each other the proverbial brush or lantern to keep up with the elephants.

Want to know my trigger? The thought that got me out of bed to finish this puzzling post? Holding a shell of a person in my arms. No pulse. No breaths. Fading warmth. Doing it twice. I'm not exactly sure how one puts words to having your arms wrapped around a body when the life has gone out of it. A fast, sudden loss, or not. I'm not sure how you quantify a "sudden" when it comes to death. Is it days? Hours? Minutes? For me, it felt like forver, but it couldn't have been more than 24 hours that I knew the end was coming.

The time after burying two stillborn children was the darkest of my life. Nothing could compare and no one deals with these matters well. We simply are never, ever prepared. All we can do is talk, process and grieve and accept. Time heals for most, never for some, but you are forever changed by death. It is the one Dark Side experience we will eventually have in common. It's the one topic we all cover up. It is the human pink elephant.

It's why I check on my son every night before I go to sleep. It's why I wake my cats when they are sleeping deeply. It's why every night, I lay my arm across my husband's chest. It's why I spent the last two months waking up every two hours to make sure he's still breathing. It's why I couldn't sleep tonight. He had a bad day. He wasn't himself. So when he wasn't snoring, I was prodding the poor guy. (It's no wonder neither of us sleep well!)

I feel like I have been walking through the Dark Side even still, only its not quite so dark anymore and feels more manageable and less suicidy (at least for me). I don't think there's a defining anything about our whole experience as family, both inside and outside our four walls. It's just healing, all around.

In conclusion, here are things I've learned in the past 7 days:

1. My husband's parents have a lot of umbrellas (or they did because one is sitting next to my computer).
2. If you are going to lash out, be a little specific. Or rather, when you are lashing out, chances are you will have really crappy aim.
3. You only lash out at people with which you feel safe.
4. Vomiting sucks.
5. When you tell your semi-conscious husband that he can leave the hospital when he get out of bed and walk laps around the ICU, it'll be the first time he actually listens to you.
6. Even though he's home and healing, it scares me to death when my husband has a bad day.
7. When my husband is having a bad day, so is my kid.
8. We need more cowbell. 

Fixing a Chiari Malformation Part One: Processing.

Yesterday was a long, harrowing day. Husband's father says its always good to be a surgeon's first patient of the day. If you know my husband and his dad, being prompt isn't an aspiration, its a sin. Being early is always best, which yesterday we were. On the other hand, my sister says being late is better, regardless of your surgery order. I understand both of their reasoning this morning.

We were early and second in line for surgery (that's the royal we or is that the author's we? or maybe just "wee" because I am still tired and haven't had enough coffee). Husband's check in time at the hospital was supposed to be 6:30am Thursday morning, but for my husband it was 6:09am. It would have been 5:58, but there was a line at the surgery check in desk.

I don't know what time we were taken back to "processing", which is basically where they make you wait to get to the pre-operative area, get fully admitted by your pre-op nurse and get naked, dressed in one of those horrible (yet fashionable?) hospital gowns while listen to the hustle and bustle of nurses, techs patients and alarms. I can't tell you what time it was then, but I can tell you that the nurses were looking forward to lunch.

If you want to calm a nervous patient, this is not the place nor the time to do it. The communication is nill, you get checked on by someone who has no information about how long you will be waiting before something very scary happens and the standard answer is "I'm not sure". I don't think in the six hours my inlaws, husband and me waited in the pre-op area that any confidence in the unfamiliar hospital and its staff was gained. Lost, maybe, but definitely not earned.

The coffee stand did have excellent coffee, but they should have given away a free Xanax for every surgical patient family member. Or maybe a shot of something to take the edge off. Even better, they should have given my husband something to relax him and something for the pain he endured going without medication since 10pm the previous night. The nurse did finally ask if his pain level warranted a medication, but not until 30 minutes before he left for surgery.

You know what's great? I was reminded as different as my husband is from his dad, they still have many similarities. One of those is an inability to cope when situations and circumstances are out 100% out of their control. It was just a little scary when we got to hour four. Not to mention, my silly sense of humor isn't understood by my father-in-law all the time. He must think I'm nuts at this point. My using re-framing to deal with my husband's wait time wasn't understood much either, so I finally explained very nicely that having a big, clear picture shown to you in a different light is helpful and calming. And then I had a cigarette or two because I needed a break. I love my fathers, but sometimes they need a woman's perspective in a blunt way. That was not the time. And my father in law still thinks I am nice. I think...  

But finally he did leave for surgery. An orderly who educated us on how and when to steal stuff from the hospital (even though I didn't see anything worth stealing) zipped us up to the Preparation Area, or rather the husband got to go there and I was given the world's fastest instructions to the waiting area. Naturally, after all this wait, my inlaws had gone off to eat lunch meaning they missed this part.

I checked into the much nicer surgical lounge (why they call it a "lounge" I have no idea because no one looked to be lounging) then ran off to find my inlaws. I was entirely too nervous to hit the right buttons on my cell phone. Actually, I was so nervous that it took me a good 5 minutes to find an elevator to the cafeteria. And naturally that meant I couldn't direct my husband's parents to where they needed to go.

Epic Daughter-in-law Fail. I went to the car for a smoke (sorry, this has been sooo stressful!) and called everyone that I had intended to call post surgery at the time they expected to hear outcome to say "yay, he just went into to the prep area". My kid said "okay Ma, call me in 4 hours". Typical Asperger's-- memorized the length of the surgery and wanted no more info. Now if everyone were like that...

Part Two will follow later. I have 30 more minutes of solitude and coffee before we go visiting (so, you know, happy ending and all).

Kid Manual: A little mom snark

Today, I have been working on updating my family calendar, whittling down our to-do list and brain storming exactly how I am going to explain Asperger's Syndrome to my sister who will be staying with us while the husband is in the hospital and during his recovery process. It is all a little overwhelming (I seem to use this descriptor on a daily basis these days) seeing how our calendar is expanding into next year July, my to-do list keeps having baby to-do lists and nothing about autism seems to be simple. Being tired of being overwhelmed, I am starting feel a little snarky and well, it does not take me much to feel irritated.

Being that I am the most unorganized person in the universe, the calendar and to-do lists are in messy piles around my computer. I have scrap papers with dates, phone numbers and things I need to remember all over the place. I have 5 lists to remind me that I need cat litter, dish soap and a three ring binder so that I don't have to have 500 pieces of paper on my dining room table. I keep adding names and addresses to our family's master phone list, which I have two versions of—one on the computer, one hard copy.

I have three calendars. THREE. One is the pretty wall calendar not on the wall because I keep having to write things on it and the tack finally came out from the wall and is now awaiting my foot to find it some really wonderful day. I have pages of printed out monthly calendars spread around me and on top of the pretty wall calendar. Then there is the appointment calendar on our refrigerator, where on one half there is a space to write appointment particulars and the other half lives entire year of 2011, allowing me to highlight important dates.

I am that bad. I need the three calendars. If I didn't have them, I'd be lost at this very point and time. Writing things down three times seems to seal the information into my brain. Plus I can just tell my husband "I dunno, look on the fridge".

The Kid Manual (aka Welcome to Our Asperger's) I intend on writing plagues me the most. How do I explain it? How do I say that I need his future care-takers to re-invent their thinking? How do you tell someone that when your kid says "I hate you", he's really saying "I lack the ability to process and handle this situation at this particular moment in time?". How do you tell another adult, a family member and person stepping in to run your household in a time of great need that they are going to have to re-learn child care-taking from the ground up?

Asperger's affects my son in so many ways, some of them small and subtle and others large and glaringly apparent. When I was talking to my sister about her helping with my son, she said she was going to "put him to work". My stomach dropped. You can't just waltz in and change things with my kid. Yes, he is responsible for cleaning up after himself for the most part. Except there is a big BUT to this statement: Asperger's defines mess and order for my child and thus as his parents we must redefine clean and tidy for ourselves. Our house is never what I would call tidy (it's not filthy either), but I've learned to accept the fact that the kid's favorite pieces of clothing live under our living room end table. His bike lives by our front door. His toys organized by type in two large bins in the living room, the larger guns behind those bins to avoid being scratched. And sometimes parts of trees reside in odd areas inside my home. For the past month, he decided his skateboard should live behind the couch, until his dad convinced his otherwise. Everything has a place, but those places aren't what one would consider typical.

My mother, when she thought she would be able to stay in our home during my husband's surgery, told me I shouldn't worry because she wouldn't put up with any S-H-I-T from the kid. Again, I cringed. I had visions of my son saying, "Grandma, STOP TALKING TO ME!" in a not so polite way. If we were talking about a normal child, then yes, it would be a cause to take appropriate disciplinary action (go to your room and think about it!). But this is an Aspie kid. He's not saying it to be disrespectful; he's just trying to say that his senses are overloaded at the moment and he requires time in which to cope before engaging in conversation. He says it that way because he learned it to be the most effective way to get his needs met. We've worked tirelessly to correct this method of communication, have taken our first steps into the world of "I require a minute to process this, Mom, please" and I don't need it undone. The kid doesn't need it undone either because he is starting to get the effectiveness of polite self-expression when wanting to get his special needs met. And meeting that "stop talking to me" rude-sounding statement with anger is a recipe for a full blown autistic meltdown.

I need my family to accept that my son is autistic; that he has Asperger's and will never grow out of it, but rather into it—he'll meld who he is with the world he lives within to make his life work for him. I need them to accept that it's okay to be different, to meet a child's needs differently than they did with their own children and for my family not have an agenda to show me that as a parent, I am just using autism to excuse bad behavior because I don't have a back-bone. Or something.

I have a child who does not function like normal children and that means I do not function like a normal mother (and 'normal' would never be a word anyone would ever use to describe me either.. apple, tree and whatnot). I need my family to understand that fundamental concept. I need my family to forget what worked with their own neuro-typical children and trust that I know what I'm doing with my Aspie boy. My boy has come a long, long way in the past two years (time my family has not spent watching him grow). It wouldn't take long for someone to undo all that hard work—hard work that my son has put in everyday ever since he found out he was not inherently evil (the stigma of being diagnosed later rather than sooner).

The snarky part? Well, that's me thinking of every clever, witty retort to the anti-Carrie-as-a-mom statements a Kid Manual may garner; so snarky that those responses could find themselves as part of the manual itself. For instance: How do you know its autism instead of bad parenting? Because this dude with lots of letters behind his name, that specializes in children's brains and whom the state of Delaware recognizes as more qualified than you to decide whether or not a child has Asperger's told me that my son was off-the-freaking-charts-no-doubt-about-it an Aspie boy, but if you need more than my word for it, here's a medical release you can take to said doctor to discuss the matter further.

Or maybe there should be a section about why I know my son better than anyone else on this earth and therefore understand what he needs? A section devoted to why I am not taking my family's (constant) parenting advice. It would start with "If you think you need to tell me what I need to do with my Aspie boy based on what you did with your normal kid, please refer to Snarky section of this manual. Otherwise, please pick an appropriate response from the following list:

• Uh-huh, I understand what you are saying. Thank you for the input.
  
• I have tried that, thank you, but it did not work for us.
  
• It's a sensory issue, so it requires a different approach. I appreciate your concern.
  
• That is a typical behavior for Aspie kids, but we are okay with it.
  
• Relax about it.
  
• He'll live.
  
• I'll live.
  
• You'll live.
  
• That concern is on our master list. We are addressing the concern that precedes that one in order to better address the one you speak when the time comes in order to achieve the best outcome for my boy.
  
• In the big picture, we are okay with that. I'm sorry you aren't.
  
• That service is unavailable at the moment/we are wait-listed/it is out-dated/it is not for his particular disorder.
  
• If he doesn't like it, it's okay. I don't like seafood/country music/fleece/spiders/cotton balls. It's okay to have preferences and unique tastes. Its okay to not like certain things and fear stuff. Forcing it on him is not okay. He is an individual. Please respect his boundaries, not just as an Aspie kid, but as a human.
  
• Please re-read what Asperger's Syndrome means for my boy. You obviously missed something important, which is okay because this isn't easy for anyone.
  
• It is really okay for him to not want to hug/be tickled/be touched/have his personal space invaded. It's not you, its him and it will not cause sudden cardiac arrest.
  
• My name is on the birth certificate and he lived inside my body for 10 months (yes 10 months, that 9 month thing is a LIE!), plus I've spent 10 years being his mom, so I am using that power to veto your suggestion and/or assertion.
  
• My child is not just like your child. If he were, he'd be a clone. So far as I know people have not been cloned yet. I'd be happy to parent the cloned version of your child or vice-versa when the technology is available. At that point, we can test your method. Until then, I respectfully decline to try it your way.
  
• Really. If you do not think he needs medication for his ADHD I understand. You go ahead spend the day with him un-medicated, just make sure the first aid kit is stocked and remove any object that can be broken or cause physical damage to a person or my house. As a matter of fact, take him to your house.
  
• You can't convince me that 500 grams of sugar is good for any child. Yes, sugar tastes wonderful, but giving too much to a child is like feeding a Gremlin after midnight. If you are confused, please watch the movie before deciding to give my child a lollipop the size of head and insisting he eat it all in one sitting. (You might want to watch the Exorcist as well.)
  

Somehow I know snarkiness wouldn't be received well, yet it makes me feel better to get it out of my system. Ultimately, I just want my child to have the best support system possible while his dad is having major surgery. I don't want his Asperger's to minimize the fact that this is a scary and overwhelming event for our family, especially the littlest person in it. I appreciate what my family is doing to support us and the kid. With the manual, the kid and acceptance of his specialness come first because without that, no one other than his parents can address his needs. The point in making the Kid Manual is to make this whole process easy for everyone, but most importantly the boy. It's his dad, after all.

The Pooping Brain

We are at the two week mark. On the 19th, my husband gets to have life-saving, or perhaps quality of life-saving surgery to fix the issue of his hind-brain pooping itself into his spinal canal, mostly. Who knew that 7 months ago, when I started this absurd blog to add more comedy into our lives that it would sorta sum up our family's biggest issue since the whole Cape School District went all Lifetime movie on us?

The greatest thing about my husband's rare, congenital medical condition is that its a rare congenital medical condition. Most doctors only read about it in text books. Google has only 381,000 results when you search the term Chiari Malformation. To give an comparison, Cancer garners 345,000,000 hits. Specific cancers results are still in the millions. If you google my husband's specific for of Chiari there are a meager 7,690 hits.

Trying to explain the whole kit and caboodle to people is difficult. My husband doesn't look sick. He doesn't sound sick. Unless you live with him, you won't notice that he has trouble finding the right words to express his thoughts and slurs them ever so slightly. You don't realize that if he lays his head back too far, he sorta just passes out. You don't see him in moments of dizziness or mental fogs. And he won't tell you about the pain that makes the simplest things difficult-- like getting out of bed or getting out of the car. The symptoms of Chiari Malformations are subtle and most cases can be managed non-surgically, except with the type that is progressive-- his type. That's the kind normally discovered during autopsy.

I'm not sure if the rareness is because its uncommon or that it's subtly means doctors miss it. It's only diagnosed by MRI, ya know, where they see the brain kinda in the wrong place. The way its diagnosed means that before MRI, you were kinda outta luck and therefore, studies on live patients was near impossible. On top of this, there is no recognized or accepted course of treatment...or rather, there is no particular protocol for treatment. Thus, treatment recommendations can vary widely from doctor to doctor.

It gets better: Of patients that have surgery, only 53% are successful and don't need additional surgeries. The rest need surgeries to fine tune or add to the original surgery. This is neither astounding or comforting, except that the surgery will keep my husband's brain from killing him at worst and destroying his neurological function at best.

The one thing that I can say is that if you have a rare condition, every doctor, nurse and tech that treats you gets a medical boner. My husband is officially a rockstar patient that has essentially livened up medical careers of a dozen or so people in the medical field. This is not a bad side-effect of his condition. It's actually reassuring that he is on the mind of everyone on his treatment team-- from his internist to his neurosurgeon, everyone is on the same page. Normally coordination of care is something a patient has to advocate for himself, but not in my husband's case. The medical world of slower, lower Delaware is falling all over him.

Even the kid's neurologist went the extra mile with us at my boy's last med check. Dr. Genius-Awesome-Pants took time out to discuss my husband's surgery and reassure us everything would be a-okay. I know that if I have a question and can't get in touch with any other doctor, Dr. Genius-Awesome-Pants will be there to help.

His words helped the other day:

"You've got a great doctor who knows what he's doing. The surgery is more common than you'd think. With this, they aren't poking around in your actual brain. They do the decompression and fix the covering over the brain, and that's that. It's not like grabbing a tumor where one wrong move damages you. It's structural and the only big risk is infection, barring that, you'll do fine. The youngest patient I've had with Chiair surgery was three and she's 100% recovered now". 

An example of the incision aka "zipper"
Don't know what happened to this photo-- sorry
to whomever I borrowed it from if I did so without credit!! Opps.
Feel free to contact me for my apologies.

Not only was it important for the kid to hear, it meant a lot for us parents. Of course we are worried. It's not like getting your tonsils out. I fell in love with my husband's brain, so I don't want it to change. I just want him to live, have a quality life without pain, and live happily ever after.  I want to laugh every time he uses brain damage as an excuse for doing something stupid, without the "what if" factor. I don't want his brain to poop out of his skull anymore.

We have two weeks until the surgery. We have a world of support and are busy making the preparations for all scenarios. My sister is coming Monday so I can breath a little easier. I can run away when I need to, I can have support when I've calmed everyone's fears.

Another example

Two more weeks until my husband becomes a "zipperhead".

I am updating this to add my husband's actual zipperhead scar. Please feel free to share this image with others to spread Chiari Awareness. This was my purpose in writing this post, along with processing this surprise that turned our family inside out.

His scar is smaller and not zipper-like at all. I don't know if it was done endoscopicly or if my husband's skin was more pliable due to his dramatic weight loss. I do know that he has sutures underneath his skin that extend about eight inches. These have not dissolved yet, so he is still healing and recovering. Life with Chiari is certainly different, but at least it is life. Here is Dr. Sugarman's handy-work:

Regular

With a diagram!!

If you'd like to use you either photo in your own blog, share it with friends and family or show to anyone else you think is fabulous or anyone needing an awareness education, feel free to distribute, but please, no alterations.

A long time...Dog Stool

Since I've posted anything. I am really good at not finishing stuff. Or getting distracted. Or something.

The husband was diagnosed with a Chiari Malformation (CM for short), (or maybe its an Arnold-Chiari?) about a month ago. I'm sure you have no idea what that is. It's a rare congenital defect of the skull and his kind is going to kill him. Well, it would kill him if not for his super-star neurosurgeon, Dr. Sugarman, who preforms 4 such operations a year.

Most CMs are quite benign and can be managed with physical therapy and pain management. Sometimes there is a syrinx present (a fancy way of saying fluid filled cyst inside the spinal column) and not all cases require surgery. A few CMs are progressive- not only is the skull misshapen, its also pitted and perhaps with jagged edges. When the brain rubs against the skull, the tissue becomes damaged (and you become officially brain damaged). And because you have to be a bad-ass with a rare condition, your brain doesn't just push down a little into the spinal canal, it pushes down a lot! (If you don't know what I'm talking about, you did not click on the link). It doesn't stop slipping-- well okay, it does stop slipping once the brain stem has been crushed enough by the brain to cause your body to stop doing things like breathing or pumping blood).

My husband is a bad-ass. A rebel through and through. He's got that hot shot CM that gives doctors boners. Seriously. In the land of routine and preventative medicine, several doctors have gotten to see something most never see in their entire career. He made these doctors bad-ass by default.

Even I find the science behind it interesting. I'm not sure if it was helpful for me to declare how awesome it was that they were going to take bones from a cadaver and graft it to his skull. But c'mon, a dead person parts are going to be inside of you! It way outshines a blood transfusion-- which frankly I thought was cool to have a part of someone else coursing through my veins in a (Anne Rice, not Twilight--yeech) vampire kinda way.

In a time in our lives when are just starting to gain real traction-- because the husband, me and maybe the kid all seem to march to an invisible drummer boy that no one else seems to hear-- we get this mind blowing news that the husband either has surgery or he dies. So, duh, he's having surgery. Traction turns into a hard braking, slip-slid-ee, pit stop in the middle of a foreign country with no map and no grasp on the language. It took us two days to grasp what we were collectively facing. We went from stressing over the normal financial stuff, parenting stuff and family stuff to stressing over our finite existence.

Now we are talking advance directives, wills and power of attorney, insurances, and social security applications instead of  paying off debt, living simply, future career plans, retirement planning, 401Ks and savings. I'm 34 and never, ever expected to be in this territory at this moment in my young life. Plan for the worst, plan for the almost worst, plan for the moderately okay and hope for the best is my new long ass motto.

The surgery is May 19th at Christiana in Newark. Dr. Sugarman does four of these surgeries a year, which in the realm of rare conditions is a substantial number. We are making plans for the 7 days minimum the man will stay in the hospital, but beyond that we are completely flying blind. We are supposed to get a packet that will tell us more of what to expect, but that packet hasn't gotten here yet. It better hurry up because May 19th is that far off and we are busy. Hell, since this condition is so rare there isn't a lot of good patient info on the internet. There are plenty of research papers and the like, but I'm no neurologist, or doctor (but I probably should have been, except I hate the inside parts shown on the outside).

I am taking the stance that this is all going to be okay, we'll get through it and my husband will live (even if he forgets who I am or some other awful scenario I've imagined). I told him that if he sees a light RUN the OTHER WAY. Do not walk, RUN.

In the mean time, we have things like Easter to distract us... or spend the entire holiday and family time talking about my husbands bad-ass brain and less about bunnies pooping chocolate eggs. Which reminds me-- the husband asked why dogwoods are called dogwoods. The kid responded because its where dogs made their stool. (5 points for not saying "crap", kid!!)

On that note, I'm out.

(and at least now my husband can say "sorry, brain damaged" when he f's up-- and yes, its okay to laugh, humor is the best medicine, isn't it?)