Pity

I am pitied.

Just a statement of fact—people that have heard my name or my story look at me with eyes heavy with knowledge. Their cousin-friend-neighbor-coworker that has an autistic child has relayed horror stories, which combines in their minds with every statistic spouted by the news or pseudoscience fact discovered on the internet to create this nightmarish ideal of my life. Or their own bouts of nearly diabetic numbers, occasional dips into hypoglycemia, or information gleaned from aforementioned sketchy sources such as acquaintances, television, or web articles have given them an insider’s perspective to how it must be to have an insulin-dependent child.

Of course they all mean well. Shared stories and potential ‘cures’ for these inexplicable life complications are their way of reaching out, trying to fill that uncomfortable void between their normal family, normal lives, and my broken one. They don’t know what to say. It is something we can all relate to, in some situation or another—the loss of a family member, an unexpected diagnosis, a senseless tragedy.

Most days, I don’t understand the pity. I have never known another way—I did not have expectations for my children while they were forming in my belly. In my naïve head, it meant that I was less prone to disappointment; my veteran experience has now taught me that it allows me a great deal of flexibility and adaptability that I would otherwise be cut off from. If I have certain ideals in place for whom and what my child will become, the burden falls to me to ensure the future I have mapped out for them. If they deviate, I must then accept it as a failure on either my own part or on theirs. Without the weight of expectation weighing down our relationship, I am free to make allowances to make life for everyone a little easier for the moment.

In practice it sounds a lot lazier than I’d like to think it is. It is not the void absence of effort; it is more of adopting a watcher’s role, permitting them to discover what they want out of life, directing them away from destructive choices but with room to make their own mistakes.

What can I say: I have always been a bit of a hippie.

In either case, most days the pity is baffling to me. I do not look at Emerald and see diabetes; I see an opinionated, strong little girl. Whether derived from my lifelong love of health and dietary literature or from a natural inclination to absorb pertinent information, the counting carbohydrates and covering with insulin became second nature to me. In the hustle and bustle of everyday life there is a chance my feeble and fleeing mind may gloss over bringing along her testing supplies when going out, but my hovering observation of her behavior has granted me a nearly sixth-sense about where her blood sugar is based on the ups and downs of her temperament.

Of course, Gabriel is getting harder to justify away in my mind. When we first started down this road to diagnosis Autism, he was such a small, wonderfully loving, joyous blessing to our family. From his soft, floppy blonde hair to his mousse colored eyes, long snuggles together as he sleeps, and that big belly laugh, he has been a genuine pleasure to be around.

He started getting aggressive, but it was an age-appropriate deviance and one that required the sincerest of apologies (most of which were accepted readily and graciously). The socially-awkward pica slowly but surely resolved itself, outside the occasional teething on a toy or stuffed animal in the privacy of our own home. Meal times became less harrowing with his increased appetite and willingness to try food, and a cocktail of medicine made bedtime considerably less dreadful than it had been in the past.

Why would someone feel sorry for me? I have three undeniably beautiful, unique children, I think to myself.

And then we have a day like today.

When Gabriel turns the movie I have put on for him a half a dozen times, screaming full gale-force in my face as he pummels me with remotes and his tiny fists. Curious Benjamin has discovered bottles of finger paints that Mommy neglected to put away after work, squeezing green into the carpet, purple onto the walls, and orange into his own hair. I have to reassure myself that they are indeed non-toxic because I cannot stop what I am doing to clean him or the house up—Gabriel has gotten into his diaper and smeared feces all over his face and hands and clothes, as well as who knows what else, because he was bored. Juggling the two boys in an attempt to minimize the overall damage, Emerald wails from her room that there is a bug and she can’t clean because there is too much stuff and it is too hard and she is tired; I tell her I will be there as soon as I can and in all huffiness she slams the door so hard that the last remaining picture the boys haven’t removed from my wall and destroyed crashes with an astonishing spray of shattered glass. There is nowhere to contain the boys while I try and remove any of the shards that could cause potential damage—boundaries are a challenge, a dare, more than an actual form of forced obedience.

This all transpiring in the longest hour and a half of my life, I resolve to find a sitter for the monster children so that I can go on a date with my husband, have a full night’s rest. I will settle for a nap, a shower, or twenty solitary minutes to sit on the porch in silence and just cry.

Most of my calls go straight to voicemail. After all, most responsible adults are still at work now, looking forward to getting off so they can go home to their husbands and their sons and daughters, to a nice quiet dinner, tuck-ins and goodnight kisses, and a bedtime they have been looking forward to all day.

Meanwhile I am pushing greasy hair out of my face, wondering how long it has been since I have washed it; I have worn the same flour-dusted sweatpants for three days now because they are the only thing that fit; my nail polish is chipped, my shirt covered in food I never ate. My eyes feel like they have fifty pound weights attached to their lids—sliding lower and lower—knowing that the moment I cave and l let them flicker closed, Gabriel and Benjamin are going to raid the refrigerator and eat an entire pack of cold hot dogs before dropping chilled Powerade into my sleeping arms to open for them.

Part of me—that quiet little voice that used to be reason but has since morphed into something much more sinister and desperate—hopes that if I fall asleep now, I just won’t wake up. If it’s the only way I will get some rest, then please God just let me die in my sleep. Every time the voice starts, guilt at the thought, the hope, of dying coupled with the sadness of leaving Michael fending for himself causes me to jolt myself awake again and again.

Lack of sleep has made me catty.

Nagging thoughts wonder if my phone calls are being ignored, declined. Who would feel capable of watching three admittedly difficult children? If there were fewer of them to watch, perhaps.

Benjamin isn’t so bad on his own—he is neuro-typical, developing more or less on schedule with his peers. But he suffers through separation anxiety, having never been away from his mother for any significant length of time. Perfectly normal and expected, but who would volunteer to hold a screeching, squalling, squirming toddler who wants nothing more than to be with his mother? In the best of scenarios, you are welcoming a tornado into your house to wreak destruction and devastation in its path, hulking his way through your belongings as you chase behind him wondering why his parents haven’t given a sharp smack on his bottom yet.

Emerald could be all right on her own as well; there is the counting of carbs, but with mom and dad’s cell numbers and a working internet connection, it should be more or less manageable. Ah, but the very vernacular of diabetes is overwhelming and confusing and frightening in and of itself—what is a unit of carbs and how does that relate to a unit of insulin? What is the difference between Lantus and Novalog? What do we do if her blood sugar is too high, too low? What IS too high and too low? How will we know to check her? What if there is an emergency…questions build upon questions upon questions, all of which I have the answers to and can answer, but this isn’t their life; this isn’t their struggle. They were being nice, trying to give us a break by volunteering to keep the little red-haired drama queen, and they shouldn’t have to have a full endocrinology lecture just to get through three hours. And we can’t risk leaving anything unanswered because knowledge is what grants mental peace. Without full disclosure of every possible eventuality (or, frequently, even with) fearful eyes follow her around, petrified that they are going to do the wrong thing and accidentally or negligently kill this rambunctious child.

Not to even mention Gabriel. Bless him, he wants to be seen and treated like a normal boy. He likes people best that treat him like he is just any other kid; people that talk to him instead of in front of and about him, people that play with him, engage him, love him. Michael and I have been working the puzzle that is Gabe for four years now; trying to figure out what motivates him, what he likes and dislikes, what makes him happy or sad or angry. Reading his moods is convoluted and misleading at best. Peals of laughter for most children indicate gaiety; with Gabriel, it usually points to hysteria, feelings of being overwhelmed, overstimulated, and on the verge of a massive breakdown. Through years of observation, it has become unconscious behavior to redirect Gabriel’s “tells” for impending aggression, head off major meltdowns, and remove him from unpleasant or unbearable environs. It took years to cultivate that foresight and understanding, and I still get caught blindsided by unexpected and distressing actions.

Thrusting Gabe into a new place with new people is something he can cope with fairly (surprisingly) well. He is prone to minor stress, but taking certain precautions such as wrestling singlets beneath his clothing to deter fecal play and packing DVD’s and snacks that Gabriel is partial to add to a more positive experience for everyone involved.

His presence is exhausting, however. His constant, frenetic, expansive movements are at once overwhelming and emotionally off-putting. Not knowing what he is thinking, especially as he flaps his hands in what could-possibly-be-maybe-if-you-look-at-it-the-right-way hand signs or absolutely nothing at all or his bellowing, repetitive, nonsensical vocalizations, is downright disturbing—how can you give him what he needs if he can’t ask you for it or express himself in any understandable way? Are his basic needs being met? Is he hungry, thirsty, bored, tired, wet, dirty?

Diapers add an entirely new element to the entire atmosphere of chaos. Not one, but TWO children in diapers? Let’s be honest—no one wants to change someone else’s poop. The only reason we do it for our own kids is because of familial affection. We can also sometimes be motivated if there is money involved. But here you go, two ticking time bombs that can choose to take a crap anywhere in your nice clean house at any given moment?

Before kids, my house had this pleasant odor of absolutely nothing, nothing, nothing at all. It smelled like air, like water, like wind—exactly, precisely like nothing at all. It scarcely makes me happy that my entire house smells like one giant Walmart bathroom of cheap cleaner and someone else’s bowel movements.

We are burdened with foresight, Michael and I. I know how this is going to end. We will thank you profusely, trying not to note the sheer relief, exhaustion, and pent-up stress in your eyes. We will sincerely and genuinely offer to clean up after the children, which you will again and again decline, though we can see evidence of our children’s misdeeds in every visible corner, crack, and crevice. Haltingly, we will ask you if there were any problems that arose, then simultaneously blanche in horror and color in humiliation as you describe the completely unacceptable tantrums of Emerald, the extended squawk-a-thon Benjamin indulged in, and the handfuls of smeared yuck Gabriel left on your walls, floors, furniture, and person.

None of these thoughts or hesitations or questions are unfair. I get that. I have all the same thoughts and hesitations and questions. When Dr. Beck told us Emerald could be released from the hospital, I had a panic attack—minor, but the first in recollection in my life—because I didn’t want to take this child home, to be responsible for another thing. I couldn’t do it; it was nuts! We do something wrong, and her organs or life could be compromised…that is not something a parent wants to be encumbered with. Of course, I wanted her home. I missed her. But I wanted my Emerald back, perfect, sweet, healthy Emerald. My heart registered that she was the same girl as she was before, but my mind acknowledged that nothing would ever be the same again.

I am not writing this because I want to be pitied. It is not something I actively seek or avoid—my adopted philosophy is that I have little control over what others will think or feel in regards to me; all I can do is try and live an upright, respectable life and let people feel and think how they will. They do not pity me for something that I have done, but rather what life has handed to me. They are entitled to whatever feelings that the information elicits and it affects me very little either way.

I am writing this because I don’t understand, most days. But when I do…why, that’s when I don’t remember how I do what I do. I forget how to cope. I forget how to survive. When my body is literally and figuratively beaten and bruised and broken, discoloration on my legs and arms and on my heart and mind; when my house is buried under a mountain of items rendered useless and ringing with reverberated shouts that leave me guilt-ridden and full of self-loathing; when my entire life feels in complete shambles, like I have royally screwed up everything up and ruined life for everyone around me….

I write because I need a way to remember. 

--Andie

Benjamin Today

Finishing the series of Weardens Today, this is Benjamin Reilly--the youngest, my baby, his very first post!

Benjamin is...a stinker. Social and adorable, stubborn, and just full of goofiness. He is a big boy with an even bigger personality. Ben is a bit of a nancy-boy because Mom spoils him relentlessly, shamelessly, so that now he is devoted wholly to mom and scared of a lot of the world. He hates baths, swimming, or getting sprayed with the water hose; screams in terror at most shows; and is downright petrified of the car wash. It is just a phase that he is going through, of course, but my heart aches for him when I let him self-soothe, figuring out that he doesn't need mommy to calm himself down. Because of the vast amounts of time that he spends alone with me, he is also adamantly a Mama's boy; both my boys are, but Gabriel is beginning to move away from it. Emerald has always been Daddy's girl, the boys cling to mom; it's just the way things are. Ben is so, so funny though. Whenever we try and leave anywhere, he immediately scans the area for something to grab and take with him. Sometimes it is fine, like a car or his drink, but other times it is a bit ridiculous as he will grab the entire barnyard or the garage door and try to take those along! He worships his big brother and sister, tagging along behind them wherever they go, trying to keep up. Such a funny, goofy boy, his favorite thing to do is to make the world laugh along with him.

Benjamin is 20 months old; his nicknames are Ben, Benji, Banjo, Bingbang, Bangles, Benny, Benjermens, and Cupcake. 

Ben's Favorites: 

Games: 

There really isn't a picture for Buzz Went the Bee, so I just went with this adorable guy. Ben LOVES being tickled, which is good because he is a big pile of ticklish spots. For those of you unfamiliar, you "buzz" your finger around saying "buzz went the bee, and he went around the tree, and he found a little hole and went -buzzzzz!!!" On the buzz, you find a little spot like his collarbone or his knee and you tickle him. Benny thinks that is just the funniest thing in the world. He really is a typical baby--he likes playing games like peek-a-boo and racing cars with you; basically anything that will get you two laughing and playing, he is game for. 

Activities: I wasn't ready for Benjamin's...activeness. I mean, Gabriel has boundless energy and is constantly on the move, but Benjamin is BUSY. Apparently he is just "all boy"--full of movement, curiosity, and trouble. Right now he is going through the climbing phase where he wants to sit on top of everything, scaling desks and tables and anything he can get his hands on. He can get himself in a good amount of trouble without even trying; he doesn't know his own strength so he is known to smack people when trying to be nice, slamming toys around, and generally wreaking havoc. One "trick" we taught him was showing his temper, where he balls up his fists and goes "GRRR!!!". It is darn cute but the effect is rather lost when he can't stop grinning his toothy grin. Our cats, Remy and Oscar, and dog Pepper are his constant friends; he chatters to them, petting them so gently, so sweetly. 

TV Shows: 

None. Ben has much too much to do to stop and stare at the TV. 

The exception is that he kind of digs Mickey Mouse. 

Food: Boy, can this child put food away. He is one humungo kid,the largest of my all ready sizable vikings. Fortunately we are at the age where he more or less still eats what we eat, but he is doing that "throwing food on the floor" thing that is just so annoying. Notably for him, he is a poor boy that cannot handle some of the perennial kids' favorites: McDonald's gives him regrets and pizza upsets his tummy. In Lubbock, everything is relatively close so if everyone is insistent on something he can't handle, he and I can just go next door and get something else. (I don't much care for most fast food; I can never fault my kids for being picky eaters because they came by it naturally!!). Sweets usually go over pretty, and he just loves mac and cheese. It, along with his brother's  recent addiction to pasta, has prompted me to start experimenting with mixing vegetables, meats, and sauces to making interesting variations of traditional pasta dishes. 

Movie: 

Hercules was just added to instant queue so he has been getting into that lately. He will also watch the Toy Story movies and Madagascar: Escape to Africa as long as  you fast forward through the scene with Tsetse, the overly muscled lion. It frightens him unnecessarily. Mickey and the Beanstalk and other "classic" Mickey movies have been added to NIQ as well, and he will usually pay half attention to those. Like I said with the TV shows, Ben just doesn't slow down enough to focus on a show--any that I have mentioned is going to be punctuated with his running off. As I write this, he is dumping the water from my flower vase on the floor while "watching" his movie. 

Books: 

I am sad to say that Banjo is almost completely uninterested in books :( He won't sit with me to read them, and sees the cardboard books as more of a snack than entertainment material. I continue to read aloud to him and his siblings, in the hopes that one day maybe we will stumble upon the key to unlock his love of reading.

Colors: Emerald is pink; Gabriel is green; my Bennyboy is BLUE! He is my little boy blue. Most of his clothes are blue, and whenever we buy him things it is usually blue. The exception is brown, which looks nice with the blue :)

I feel bad for not having quite as much to say about Benjamin. I could go on for pages about Emerald and Gabriel, but the fact is that they are older and their personalities and preferences are becoming more pronounced by the day. Ben isn't interested in figuring out who he is yet because he is still trying to figure out the world around him. And that's normal; it is okay. He doesn't talk or communicate at all, most likely due to peer modeling from his brother. I know he has the capacity to talk and he doesn't seem hard of hearing at all, so I have faith that he will start in time, when he is ready. Even so, I have contacted ECI to get him started on Speech services; a little prompting won't hurt. We do have some struggles with him at this point, mostly that he and Gabe have a switch-off sleep schedule set up so that most nights we just put one child to sleep before the next one wakes up. Michael and I are exhausted. We thought we had moved past this point: Gabriel was starting to sleep more consistently, but like his brother before him, Benjamin is so so reluctant to sleep at night. Even though he is only 20 months old, I don't let him nap and have him on low doses of melatonin and...nothing. Might as well be doing nothing for all the good it does. 

So that completes the Weardens Today posts!! I was hoping that by spacing these out, doing one at a time in three consecutive days that I would get back into the swing of updating. I did! But we don't hardly have anything to talk about! Michael works so much that we don't get much time with him, and the kids and I are limited in what we are able to do without help. I have so many ideas in my head of things to do with the kids, places to take them--swimming, the Science Spectrum and all their exhibits, the Abilene Zoo, Library time and community center classes and playdates with school friends, church friends, and SPAN, plus picnics to watch the airplanes take off, wilderness "treks"....but I couldn't have assembled a more difficult bunch of kids for outings if I had tried. Emerald is fairly well-behaved but takes advantage of the situation if I am frazzled or  distracted; she will run off, play with other kids, and argue, argue, argue. 

Typical conversation: 

Me: Emerald, please stay close to mommy in the store. 

Emerald: I am just dancing over here with my new friend! If I stay with you, I can't see her!

Ugh. Just...stay with mommy; I don't want to look up and realize you are gone :-S

And I have to watch her for signs that her blood sugar is getting too low or too high, be available to do finger pricks and insulin shots, and closely watch the time for snack and meal breaks. 

Gabriel is difficult for obvious reasons. You have to watch closely for signs of agitation or he will have a severe meltdown, run off, start biting himself or you, pinching, screaming....plus he is probably not that interested in what is going on anyway, is being loud and disruptive, or just jumping in place. Now while trying to keep wander-off Emerald and bounding Gabriel, I have this toddler that is just big enough to walk and start participate but needs complete and undivided attention....add that to the fact that all three of them are pushing "too big for me to carry" (and by pushing, I mean I still lug their chunky butts all over the place to the detriment to myself; they are massive--54, 41, 32 lbs which really adds up!) and Emerald's diabetes bag, the boys' diaper bag, snacks, my purse...I feel like a pack mule.

Woah, really got off topic there. Ben Reilly is great. The perfect addition to our rather odd family. He is a blank template, waiting to be written on; it is an adventure to see who they will become! 

--Andie

Gabriel Today

Gabriel Today!

Gabriel is the sweetest, most loving little boy. Despite being autistic, which is often characterized by aversion to physical contact like hugs, Gaby can't get enough love--he covers Mama in kisses, wrestles with Daddy and Pawpaw, and demands that Grandpop hold him constantly. In public, he will hug random women and request that men hold him. He is getting to the age of distancing himself from Mom a bit; he wants me when he needs to be comforted or when he is tired, but during most of the day he would rather spend it with other guys. With seemingly boundless energy and a predisposition for mischief, Gabe can definitely be a handful, and you have to watch him in case he decides to abscond the moment your attention is diverted. Most of his day seems to consist of figuring out ways to subvert my authority, whether that is stuffing the cat in the oven, sneaking food off of my plate, or stealing the TV remote, and his excess of cleverness just aids him in his efforts. The hardest part is that he is still completely non-communicative; unable to speak, sign, or engage in picture exchange, he is limited in his ability to express wants and needs to us. He does not let this hold him back though, and he will figure out a way to get the things that he wants (even if that means ripping the handle right off the fridge). 

Gabriel is 4 years old, and his nicknames are Gabe, Gaby, Gaby-Baby, GooBoo, Goobles, Gablegobbles, and Cookie. 

Gabriel's Favorites

Games: 

Gabe is not great at following rules or attending long enough to play a game, but he does like song "games". For example, he can't get enough "Wheels on the Bus" or "If You're Happy and You Know It". He still requests hand-over-hand to do the signs, but he manipulates your hands, proving that he does indeed know the motions and is paying attention (whether he is looking or not). Besides that, he loves tickle games, wrestling, and fishing games where you match the colors of the fish to the boat. The more active the game, the more likely he is to participate in it, but an excess of stimulation can cause a meltdown pretty quickly--it is kind of a balancing act of "just right" amounts of people, noises, smells, sensations, and time that he can tolerate. 

Activities: Gabriel is out of Preschool Program for Children with Disabilities (PPCD) for the summer. Now, he is mostly engaged in private Speech Therapy where he reads, sings songs, plays games, and generally is prompted to learn and share signs. He is a regular little water duck, swimming and playing in the water hose and taking leisurely and long bubble baths. There is a sensory deprivation element to all of it, where he can float with his ears under the water to muffle all the sounds, close his eyes, and just let the lukewarm water wash over him. It calms him, and as any parent can attest, swimming is one of the best ways to tire out a child. He has a trampoline out back that he jumps on, or just lays on to soak up the sun. Like most toddlers, he won't say no to a ball, bubbles, or balloons. 

TV Show: 

I know, you are so surprised to hear it, but...

VEGGIE TALES.

 

Still totally his thing. Ugh. Luckily I am more or less able to completely tune it out at this point; I wish there was more available on Netflix Instant Queue because he will see a disc, get excited, and accidentally scratch or break it trying to show it to me. He has shifted his interest mildly in that he now prefers Larryboy or Minnesota Cuke episodes over others; they tend to be more action-packed and boy-centric. 

Other than that old standard: 

SuperWhy! is a show on PBS, and no on NIQ, that he finds entertaining--he has always been a fan of watching credits roll, and I think that seeing the words spelled on the show help hold his interest better. If Grandpop is around, Gabriel will happily watch anything, but if it is just Mom and Dad, he becomes picky, bringing us the remote incessantly until we finally accidentally stumble on whatever he feels like watching. 

Food: Super recent development is that Gaby is all about the pasta. Before, whenever we had (for example) spaghetti, I would spoon the sauce onto a piece of toast and sprinkle it with cheese so it resembles pizza enough for him to eat. The last time I tried that, he started stealing food off of Emerald's plate; the same thing happened when I made my barbecue chicken mac and cheese, so I decided to start offering him what we have. 

Now he happily eats pasta with the rest of the family. I at least offer what I made for dinner, but give him something different if he won't eat. Especially at other people's houses, he will only eat things like peanut butter crackers or nuts or peanut butter pretzels. The "dry" foods that he used to be so focused on. Of course, he will still get down in a cupcake or other sweets, it's just the main meal he is disagreeable about.

Back at home, he will eat WHOLE fruits and vegetables. Hand him apple slices and he ignores them; give him a full apple and he will eat it down to the core. Bell peppers, all varieties of fruit--anything that he can hold comfortably in his hand, I think is his motivation. Even better if it keeps his hand dry while he is eating it. Exceptions include oranges which have to be peeled, and any fruit cup, particularly mandarin oranges. 

Movie: 

 

His two favorites right now are The Princess and the Frog and Alice in Wonderland. No telling why he latched on to those two. Last year, he would watch "Toy Story" again and again, but this year he shows minimal interest before moving on. Other movies that he likes are Hercules and Madagascar 2: Escape to Africa. We are rather limited in what he will and will not watch, which means a pretty standard rotation of about 10 shows and movies.  

Song: As aforementioned, If You're Happy and You Know It and Wheels on the Bus go over really well with Gabe. Other than that, he likes jazz music (probably why he likes "Princess and the Frog"), things heavy with trumpet or piano, mostly. He has a strong dislike for country music and "popular" music; like his Daddy, he prefers things that are a little more antique--Elton John, Journey, etc. One of the few time I caught him trying to sing was to the "Phantom of the Opera" soundtrack from the Gerard Butler from a few years back. Michael thought that was just the neatest thing. Children's church songs are pretty standard for him; I think he prefers his music as unobtrusive as possible. 

Books: 

In Speech, they read the Little Critter books by Mercer Mayer; he really likes them and responds to them. Maybe it is because Ms Emily is the one reading them to him, but he requests and more or less listens when she reads to him. 

It is difficult to realize that he does enjoy being read to because he doesn't respond like most children do. Emerald will bring you a book, sit next to you and "help" you read, answer questions and point out things in the pictures, and generally devote her whole attention toward the story. Gabriel on the other hand will not sit beside you. Sometimes, he won't even sit in the same room with you--he will lay down in the hall, or play in the adjoining room. You can't tell that he is paying attention at all. But if you watch, he gets uncharacteristically quiet whenever someone reads aloud. His motions become less pronounced and more sedate; he walks around aimlessly rather than jumping up in down in place or smacking himself. And most distinctly, he doesn't request shows, or to go inside if we are outside; he just seems all around more peaceful. 

The reason I started looking for these signs is because I was reading aloud to the children anyway but didn't know if they were getting anything out of it or if I was wasting my breath...but then one day I was sitting quietly and Gabriel brought me the book I had been reading to them ("One Hundred Years of Solitude" by Gabriel Garcia Marquez). He didn't look me in the eye, he just carried it over and dropped it in my lap, then started his soundless haunt of the area near where I was sitting. 

That kind of crude communication is not that uncommon with Gaby, but you have to make sure that you keep your eyes open because being dismissive that it might be random or he is just being a pest can make you miss so much of who he is.

Colors: I color code the children. I know, totally weird. But it helps me keep everything organized if they all have blatantly distinct possessions; I always know what belongs to who because of the color. Emerald was easy--she is my only girl, and she loves pink above all other colors. So she is pink. 

Gabriel and Benjamin, I went with initials. Gabriel is green; Benjamin is blue. 

Which basically means that at dinner time, Gabe will always have a green cup, fork, and plate and Benjamin's dishes will all be blue. It is how I keep it straight in my head. 

Gabe responds well to the green. The other color he seems drawn to is that bright neon orange.

Gabriel is an amazing kid. It must be so hard for him to go through life feeling like the world is overwhelming and confusing and even painful, and worse yet to be completely unable to control any of it or tell anyone how he is feeling. Sometimes this manifests negatively, where he will have accidents or do harm to himself or others; but for the most part, he is a sunny, serious little boy who is making the best of a difficult situation. He cleverly figures out ways to get what he wants, or independently discovers new methods of helping himself to things he needs. Developmentally, he is not where we want him to  be, but he works so hard trying to catch up and puzzle all of these difficult tasks out. Who knows who he will become or what he will accomplish, but Michael and I know that we are proud of him and know he is capable of so much, growing every day into someone incredible. 

--Andie

Emerald Today

To finish the series of posts I started, oh....six months ago, this is Emerald today!!

Emerald has a flair for the dramatic. Everything she does is either the best in the whole wide world or the worst that has ever happened--there is no medium ground with anything. Luckily for the most part, she is just the happiest, sweetest little girl. Like most girls, she is wanting to grow up too fast--she is the little helper, always eager to help cook, clean, or run errands. There is no amount of individual attention that is enough, because she will continue to bask being the center of attention--a social little butterfly. School can be a struggle for her because of her flair for extremes and her sociability; she can't stop chattering, and is not shy to share her opinion!! God made her tough and brave; everyone asks me how she is handling her new diagnosis. She will proudly tell anyone, "I am diabetic now!" Finger pricks and insulin shots do no faze her in the slightest; she will frequently remind us what she needs. At first she was grouchy about limiting her sugars, but she has adapted so quickly and wonderfully, Michael and I just are so proud and amazed by her.

Emerald is 5 (and 3/4) years old; her nicknames are Em, Emmy, Emmie Lou, Pineapple, and Booger Red.

Emerald's Favorites:

Games:


Like her Daddy (and let's be honest, her mama), Emerald is a big fan of video games. I try and limit how much she plays her Nintendo DS or on the iPad, because even that sentence is ridiculous to me (what is a five year old doing with these devices?!) so that she can cultivate other interests, but she plays as much as I will allow. Her current favorite games are My Little Pony Pinkie Pies's Party for the DS and Smurf Village on the iPad.
She is exceedingly clever: she can figure out games like Angry Birds or Cut the Rope before I can and will patiently explain how to solve the puzzle, which just cracks me up. When we had a kinect, she loved playing that as well, but it is such a crude technology in its infancy, requiring much too great an area to move around, so inexact in its reading, and barely registering a girl as small as Emerald.
Another game she likes to play is Star Wars: The Old Republic, the previously mentioned PC MMORPG that Michael is a big fan of. I play it as well, and will let Emerald sit next to me; she designs and names the character, and I control movement as she picks conversation decisions and attacks. It is not the traditional "mother/daughter" activity, but she and I like it and appreciate having something to share :)

Activities: Emerald is still very much a girly-girl at heart. Playing dress-up and tea parties, holding concerts for her stuffed animals, picnics outside...generally, anything you suggest she is game for, and she adores playing pretend. She is so social that it is hard for her that her brothers are more independent; Gabriel is just generally intimidated by anyone trying to play alongside him, and Benjamin is more interested in slamming the toy around or smacking you with it than actually following rules. Hopefully I can organize more playdates for her during this summer; I still very much want to get her involved in a community center class, my only holdup being that Benjamin is too young to join anything and Gabriel is not technically "Welcome" in those classes (a fact that saddens me, despite my understanding).

TV Shows:
                

Recently, Emerald has picked up the Disney Junior shows that have been added on Netflix Instant Queue. Her favorite is JoJo's Circus and The Powerpuff Girls. She will watch whatever you put on, but she is all about girl empowerment shows; she will tell you her favorite superhero is Supergirl (Kara Kent) and loves to watch any show about comic books. The more Daddy likes it, the more Emerald is going to like it and request it--Avengers, Justice League, Batman, Star Wars, etc. Just now getting into things that are not animated, she loves any show that has horses or dogs or really any animal.

Food: If you ask her, she will tell you all about how she loves cupcakes and cakes, and all manner of "girly" foods. Dainty little pastries for her tea party, anything that looks "fancy". Realistically, she loves lasagna, pickles, all fruits (especially "juicy red apples"). She is agreeable when it comes to vegetables: she has never dug the starchy veggies like corn, peas, or potatoes (that aren't covered in butter and cheese), but fresh veggies that she can dip in ranch are a huge hit and she loves salads. Other cooked vegetables like broccoli and green beans she will tolerate. Like most kids, she is all about the hot dogs, pepperoni pizza, chicken nuggets...all that junk food that isn't all that good for you, but she is agreeable about eating what she needs to.

Movie:
  

If you ask her, it is alllll about the "girly" movies. Maybe she is at the age of real gender identification because she is motivated by what girls like and watch and read and do. Barbie movies are her favorite because her friend Brooklyn gave them to her--The Island Princess and The Diamond Castle are like chocolate to her; such a rare and special treat. The more girly, the better.

Songs: Whenever we get into the car, Emerald immediately requests classical music. I think she finds it soothing because she will just lay back and listen in bliss to what she considers "pretty princess music". In the absence of that, sound tracks from her movies, Disney songs, and seasonal music are always a hit. If it is near a holiday--any holiday--expect her to be asking for "Valentine's music" or "Christmas music".

Books:
Emerald's favorite books tend to be the ones that are about herself: scrapbooks that she had gotten from school or that I had made, "To My Daughter With Love" which is a memory book filled with facts about her; things of that nature. If it has a picture of her in it, especially as a baby, she is hooked and looks at them again and again.
As for "real" literature, she likes (once again) anything girly. She is all ready a strong reader: she can figure out most simple books on her own, and she loves to read. One of her favorite things is to look at the Star Wars book about spaceships or to go to the Comic shop and pick out her own comic. There is no telling what she will pick out, as last time she chose "Uncanny X-Force", but she always reads and enjoys it so it is a special treat for her.

Color: Of course she still likes pink the best, but she is partial to purple as well. Really she says she likes all the colors of the rainbow except "black and white and gray, because people who like those colors must be grown-up and sad". 

Flower: Daisies, all the colors of daisies, because "they smell awfully pretty".

Emerald is a tough, bright little girl. She is always the top of her class, academically, even if she is perpetually in trouble, and she excels at everything she tries. You can't help but see the world as more fun and magical and beautiful when you are with her because that is how she sees it. Her personality is so effortless easy going and loving, she can make friends with anyone, but her closest bonds have been with her great grandmothers--Grannymom, Gigi, and Grandma Pat. Anyone that has met her will tell you: she is beautiful, inside and out; growing to be a special little girl! 

--Andie

The Ups and Downs

Since I last wrote--which was quite some time ago (I fear around Christmas time)--so much has happened. I know you missed our mundane and tedious updates, and are full of resentment that it has been six months since you could get your Wearden fix. I do apologize and hope I can make it up to all of you (Mike) that reads this!! 

In February, I woke in the middle of the night with intense pain in my lower abdomen. After it persisted for several days, I made an appointment with my ob-gyn to see what was going on. We held off because I am uninsured and have a history of difficult lady problems, so I was hoping it would just go away. 

Dr. Killeen saw me for a great discount, not charging me for the ultrasound that he performed but just for the office visit which was also severely discounted. I had a massive ovarian cyst inside my right ovary. I needed to have surgery to have it removed, but our options were limited because of my lack of insurance. We decided to try to minimize the cyst with estrogen based birth control (I was previously on a progesterone based implant); if the cyst was the result of ovulation, the birth control would get rid of it. If it was pathological, I would have to figure out how to do a surgery. 

For a couple of weeks, the pain slowly diminished. I was so hopeful! I had to go back two months after the initial visit. But more on that later. 

Gabriel turned 4 years old in February. I did not feel much up to planning a birthday party, so I jokingly told my mom to do it. She readily agreed, with the caveat that the party obviously had to be held in Abilene where she lived if she was planning it. All I had to do was show up? Done. 

Mom planned a trip to the Abilene Zoo with family--low-key is the ticket for Gabriel, and more so, the focus not being on him. At the Zoo, he was able to ride the train and ride around in the wagon, looking at each exhibit as long as he pleased. I got him a long snake stuffed animal and a root beer to drink; he didn't get to feed the giraffes because the fatties were all ready full, but we went and threw food pellets to the ducks. Uncle Jarrod studies birds, so he was able to tell us what each type of duck was by their distinguishing marks. 

We were hoping to go to an enclosed park for cupcakes afterwards, but it was too cold and kids were starting to droop with exhaustion, so we went back to Jarrod and Julia's house. Aunt Amber and Oma made orange dreamsicle cupcakes, as well as some chocolate cupcake that I don't quite remember. Gabriel had one of each and thought that was just the greatest. 

He had less than zero interest in opening his presents; he was more or less clocked out of being social at this point, so we set the presents on the floor and let all the other kids open them for him. He liked that. 

All in all, it was a perfect birthday for him. Lots of moving around outside, no one watching him, pleasantly paced day. 

Michael was having the best months at work, selling more than he had historically. He was worried sick about me, ready to take off any minute if I needed him--he hates sitting behind a desk while I am at home. I couldn't drive comfortably, I couldn't pick up my kids without much pain (none of my kids being what one would call "dainty"), and I was more tired and weak than I had ever remembered feeling. When there is a cyst, your body can confuse it with pregnancy and give you the full compliment of associated symptoms, including (but not limited to): nausea, vomiting, exhaustion, breast tenderness, lower back pain, and headaches. 

Luckily, Emerald and Gabriel were safely at school for most of the week. Gabriel had made good progress up until December; then abruptly, he reverted back to complete indifference and difficulty in school. Full hand-over-hand was required for every activity, he would not attend any task in the classroom, and participation had come to a full stop. His teachers and I were at a complete loss for why or how this could have happened, but I asked his speech therapist at home and she had some surprising insight: 

Gabriel's class at the start of the year was five boys including himself. Throughout the year, more boys were added as they graduated from ECI and transferred into PPCD or moved to the PS school district, so that by the end of the school year, Gabriel's class had bloomed to 12 boys. That is quite a change, and every time they got a new student, he had to readjust all over again. I am not positive this is the definitive answer, but it does add up. 

As for Emerald, she was still struggling in the school atmosphere. She was getting in a good deal of trouble at school, especially and consistently in gym with Coach Cole, and I got nearly daily reports of outbursts, arguments, and fights with teachers and other students. When she got home, she was generally sweet tempered, but all she wanted to do was lay in bed from the moment she got home until it was time for dinner. The only thing she would get up for is to go to the bathroom or refill her water bottle.

Like the mean tyrant mommy that I am, whenever the weather was permitting, I would make the children play outside. Of course, the weather has been so weird this year--the cold persisted well into May, which then abruptly gave way to scorching and unbearable heat. Inexplicable. Gabriel and Emerald both fought me being outside. While Benjamin would happily tottle about, Emerald would find a spot in the sun to lay down and Gabriel would sneak around trying to find entrance back into the house. 

All in all, we were still functioning just fine--the weeks were passing by and we were managing. 

Rhonda taught me how to crochet a fashionably popular ruffled scarf; I took off with it, crocheting them all like a mad woman. When the pharmacist saw and offered to buy the scarf right off my neck, I realized I might be able to start bringing some money in for the family by making and selling these scarves. Calling them "sweetheart scarves", I did reasonably well, selling enough to support my yarn-y hobbies.

For the kids' spring break, I sold enough scarves to get down to Abilene and see my family. My daddy had had a scare the month before, when his kidney numbers showed signs of failure. Miraculously, they were "fixed" and started functioning just fine, but I was so upset at the thought of losing my Dad again that I needed to go out there and spend time with them. Jarrod and Julia were in Louisiana so I didn't get to see them at all, but Amber and Jud and I got to hang out; we stayed with Mom and Dad in their new apartment, trying new foods and playing with Mom's little jerk of a kitten, Maxine. It was so great to get away from the house and from my loneliness for a while, but not so long that I missed Michael horribly. 

Michael's birthday was on April 6th. He got a spinning TARDIS for his desk, some new work clothes, and a Sonic Screwdriver; we fell in love with Doctor Who in this past year, if you can't tell. We had our "bread lady" (the woman that makes and sells loaves of fresh bread at Michael's work) make him a giant Oreo cake. It turned out fantastically. 

As the time for my two month appointment approached, I started to feel abruptly much, much worse. For weeks I had been improving and I was so encouraged that I wouldn't have to have surgery, when I began to rapidly decline. Though I had spent the bulk of last year dieting to reach my ideal weight, my abdomen was bloated and distended so much that I looked like I was with child. The pain and discomfort was constant; before I had been able to tolerate driving and lifting children on occasion, but then I could no longer handle it. I fell into anemia, so weak and trembling that I was unable to lift a folding chair. Constantly sick to my stomach, unable to eat...I was baffled. Could one little (well, it was rather big) cyst do all of this?

I went back in for my check-up, hoping for the best. My prayers had been answered!! My cyst was completely gone! 

Remind me to be more specific in my prayers for the future. 

The sonogram revealed a rather large mass that had formed in between my cervix and my uterus. Dr Killeen was unable to identify it himself, so he referred me to a radiologist who was better equipped at reading the scans. (As Dr Killeen put it: "I am just a ob. I can tell you if it's a baby or not...not a baby!")

We went to the radiologist that afternoon who preformed a few scans and called the nurse with his findings, which were basically: heck if I know. 

On his report, he wrote "cannot rule out malignancy", which subjected me to the rather unpleasant biopsy. I will not go into much detail on that rather than to say...ow. 

Biopsy came back as just blood tissue. We put me on heavy doses of progesterone to see if it could flush the mass out, and we discussed the super unfavorable option of a hysterectomy. 

Most people reassured me: you are 25! You all ready have three beautiful kids; you don't need any more. You will feel so much better after it is done and taken out, you won't have periods any more. It really is for the best. 

They meant well, and all of them had very good points...but I am just so, so against it. My mother got her tubes tied after she had me at the age of 21; when she remarried, they wanted more kids but were unable to because of the tubal ligation. I cannot imagine making a life time sterility decision at this point in my life unless we have exhausted every other option. Who knows how I will feel in five or ten years? I can always opt to have my uterus removed, but once I make that decision, there is no going back--I am to live with it for the rest of my life. 

Pragmatically, a hysterectomy is also a non-option from a fiscal and physical standpoint. Hospitals routinely work with uninsured patients to make necessary surgeries happen, but we are talking around a $10,000 procedure, of which I will have to front $2,000-$5,000. That is some serious debt to be undertaking. But even if I had the best insurance in the world, it couldn't save me from the fact that I can't have the procedure done laparoscopically. Because of my three Caesarean section births, my scarred uterus is too fragile; I would have to have the complete abdominal surgery. The recovery time is harsh--there is a big empty void where an organ used to be, and I will be in a great amount of pain. I won't be able to lift my babies for six weeks; drive for over a month. Which of course causes a problem because I am a stay-at-home Mom. My job pretty much consists of picking kids up and driving them around. 

Kind of wandered off there for a minute. Do apologize.

I reach out to my church class friends, who are so amazing. They brought us meals for weeks while I was incapacitated, called and texted and sent Facebook messages to reassure and uplift me. It really was so astounding and so heartwarming; I am proud that we are part of this community. 

Daddy came out and stayed for a long weekend to help me. I so love having my daddy around--he is such a big help, and Gabriel has never responded to anyone like he has to his Grandpop. Anything Dad does is just great to Gabe, who hangs on his every word. Dad stayed for about four days before he missed mom too much and had to head back home; the day after he left was one of the worst for Gabriel that we have ever had. He was beside himself, biting his arms until they bled, having poop accidents, unable to settle to anything...he was traumatized, and I felt so horrible for the poor guy. 

One day, Michael picked Emerald up from school. My parents had come into town to help out, keep me company. I was rather pitiful. Michael and Emerald ran a few errands, but by the time she came home, she looked exhausted, overheated, and generally sick. I sent her to bed to rest. 

At dinner, she complained that it was too hard for her throat and asked for softer food. We were eating baked pasta--I told her there really wasn't a softer food for her to eat than baked noodles, so she cleaned up her uneaten dinner and went to bed. 

That night, she was up frequently vomiting. Michael and I agreed she must have a stomach bug because she didn't have a fever. We sat up with her, and figured it would pass the next day. She stayed home from school to rest, though she hadn't vomited in hours, just laying in bed watching movies and resting. This was Wednesday. 

Mom and I ran some errands that needed to be done while Dad and Michael stayed at home with Benjamin and a sick Emerald (Gabriel had gone off to school). When we got home from lunch, Emerald was...well, it sounded like she was hyperventilating. I thought she was being dramatic (not an uncommon occurrence for her). I couldn't prompt her to eat, and she wouldn't take more than a few sips of anything. I took her onto the porch to sit in my lap and try and nibble at a cracker, but she was so weak and lethargic. It was noon so I couldn't call the doctor's office for an hour, but we figured: if she is having trouble breathing, that is a trip to the emergency room. Her cheeks and eyes were sunken into her skull, dark rings around her eyes. Her chest heaved with every attempted breath. Her arms and legs were completely mottled, and her hands and feet were cracked with dehydration. 

Michael and Daddy stayed home with Benjamin and to meet Gabriel's bus when he got home from school; I drove us to the Children's ER at Covenant. 

By the time we reached the hospital, Emerald was lolling about, barely conscious and on the brink of passing out. Her skin, normally so fair, was white. I carried her in, despite the struggle of her size and my own problems (oh, how trivial and ridiculous they seemed now!). 

Keeping calm is usually pretty easy for me--I mean, sure I get mad and flustered like anyone else, but sick babies are my strength; it's where I shine. In my head, I have more or less decided that she was probably just very dehydrated from being sick and the heat. I am taken aback when the hospital staff starts sniffing her breath, but more or less dismiss it. 

The nurses hook her up to an IV, pretty standard procedure for ER patients so that they can be given fluids and medicines as quickly as possible. Michael asks for an update, so I try and get a picture of her lying on the gurney, but she has lost consciousness--she is so ghostly and pale that she looks like a corpse, and I can't send it to Michael.

The doctor comes in much more quickly that usual, when I reflect on it. I think, "Oh, slow day". In retrospect, it took me an embarrassingly long time to put all the pieces together and figure this out. I mean, hadn't I been worried about this since she was a baby?! But I was intensely focused on the moment that it had never occurred to me, never crossed my mind. 

He had tested Emerald's blood sugar; it was 485. 

Normal blood sugar usually stays between 70 and 150, with the occasional outliers. Emerald was Type-I diabetic. 

I snuck out into the hallway to call Michael; in the room I was perfectly calm and collected, but as soon as I was out of earshot, I started crying. By his tone of voice, he was just as taken aback as I was. Shocked--pure and simple, ground right out from under us, shocked. That is the only way I can describe it. 

Emerald presented with "classic symptoms of DKA", which is usually the first indicator of Type-I diabetes. DKA, or diabetic ketoacidosis, is where the body is short on insulin to use the sugars gleaned from the foods we eat to give energy to the body. In order to keep functioning, the body begins to break down fatty acids for energy, which produces  acidic ketones that lace the blood. It makes the blood too acidic, resulting in nausea, vomiting, increased thirst, excessive urination, abdominal pain, labored or gasping breathing, lethargy, stupor...and an oddly sweet breath. Now I understood why the nurses had been sniffing at her mouth! 

She presented with significant dehydration which meant she needed to be admitted to Pediatric ICU in order to gradually re-hydrate her as well as to get her blood sugars and ketones back within normal ranges. Michael stayed at home with the boys and Ken and Rhonda came up the hospital for moral support. The ICU doctor explained that even though she would be very thirsty and ask for drinks, we couldn't give her anything because her organs and brain had been shriveled without adequate fluids--if we gave her fluids too quickly, her brain would swell and it would cause seizures, coma, or death. 

It was hard listening to her asking for water and only being able to run a wetted sponge on her lips. My phone was incessant with texts and calls, most of which I was unable to attend to--I was completely focused on my little girl. 

Michael came up to visit and Emerald wanted Daddy to stay...looking back, that was the best option for everyone for Michael to stay, but it was not the option I could have lived with. Michael was more capable of lifting her limp body for using the bed pan or moving blankets and sheets, and the boys were going to sleep better with mommy nearby; it is just a fact. But I could not leave her side. While my child is sick, I have to  be there, even as weak and useless as I can be. 

Rhonda stayed up there that night too. I slept in the bed next to Emerald, careful of all the wires and tubes that were connected to her. They had monitors for her blood pressure, oxygen levels, and heart rate, as well as three separate IVs--one for her insulin, one for fluids, and one for drawing blood to test her glucose so they wouldn't have to repeatedly stick her all night. She had an accident in her panties which was the only pair we had, so she slept naked. She thought that was pretty great. 

For most of the night, Emerald was more or less out of it. I would be surprised if she remembered anything from that night. She would wait until her bladder was hard and painfully distended before she would pee; we would all but have to push it out of her because I didn't want her to need a catheter. It was a long, long night. The night before I had been up with her while she was sick; now I was nearly delirious with exhaustion, and I had neglected to take the pain pills which would quiet the intense pain from the uterine mass because I wanted to be coherent and available to Emerald. 

Even the longest nights end, and Michael came up there looking fresh and wonderful (though he had gotten less sleep than even I had managed because the boys were distressed all night without mom home), relieving me so that I could head home and take a shower before my own doctor's appointment.

Dr. Killeen's nurse is just one of the greatest people in the world. I explained about Emerald and everything, and when they ran the scan, the mass had not budged even in the slightest. Renay (the nurse) disappeared for a few minutes, then came back and told me that the surgical center had agreed to work out a payment plan with me without any money down so that I could have a D&C the next morning to remove the mass. 

A Dilation and Curettage (D&C) is a procedure where you are sedated, the doctor progressively dilates your cervix and scrapes out whatever foreign or offending yuck is inside your uterus. It was a quick, inexpensive procedure that would get me back on my feet and get rid of that mass that was really ruining my every day life. 

The best part was that it is an outpatient procedure--I would be in the surgical center for about three hours, but then I would be right back on my feet, ready to go back and take care of Emerald. 

Mom and I went and did all the pre-surgery paperwork and blood work, then I grabbed some balloons and went back up to see Emerald. Oh, what a difference a day made! She was up in bed, eating an apple and a ham and cheese sandwich and drinking as much milk as the nurses would allow her. When I had left in the morning, she was about to brave her first cup of sugar-free jello to see if she could keep it down, and now she was on solid foods! Her and Daddy had a great time, watching movies and hanging out; she wants me when she is "sick", but boy when that girl is well, she is Daddy's inside and out.

She had all ready had lots of visitors, and her spirit was back tenfold. She is just the sweetest thing when she is getting all the attention, and she is basking in being lavished in gifts and love. Aunt Amber and Grayson drove up to be with us, and Uncle Jarrod, Aunt Julia, and Andrew, and Beth and David were planning on being there that weekend. Family and friends and church were surrounding us, supporting us. It was overwhelming and wonderful. 

We decided that Michael would stay at the hospital that night with Emerald so that I could try and get some sleep before my procedure. After I left, they moved a now stabilized Emerald into a "regular" room and out of ICU. 

Ben and Gabe were so beyond relieved to see me. Gabriel hadn't seen me since he had gotten on the school bus the day before; Ben had gotten a brief time with me when I took my shower before my doctor's appointment, but he was furious when I turned around and headed back out. 

Bright and early at 6 am the next morning, Mom and I show up at the surgical center, first in line for a pre-work surgery. Mom and I joked back and forth; we have a weird, but happy, relationship. I was nervous, but they gave me a "forget-me-now" medicine that made everything a wonderful blur. It took about 15 minutes, half the time it would normally. Dr. Killeen is just really very, very good. A D&C can be dangerous for women that have had multiple c-sections because the uterus could rupture along the scar lines, but Killeen is too gentle and careful for that. He told mom (and me, later) that there was too much gunk to scrape out; he ended up having to suction it out like you would have to with a miscarriage, and there was a lot of it. It was sent off to pathology and I was sent to recovery.

The first phase didn't last all that long because I was impatient to be moved home. I asked to be moved to second phase, which they did willingly--said I could leave as soon as I could move around and eat something without throwing up. So Mom laughed her butt off at me as I danced around with my IV eating a muffin to prove that I could leave. Even drowsy and feeling confused and "off", I felt empty. At first that saddened me--it was the feeling of physical emptiness that I had after they removed my sweet babies--but then I realized..I am not swollen with painful mess anymore! The almost immediate relief just astonished me. 

Barely an hour and a half after we had gotten there, I was on my way home, my head and feet hanging out the window because I was pretty sure I was going to be sick and the early morning air helped. 

The doctor told me to rest for at least a day to avoid any complications, which was hard for me. I was so full of anxiety and fear; the reality of my life was setting in, a future of having a insulin-dependent diabetic child AND a severely autistic, non-verbal child...it was terrifying. I was sick to my stomach, my chest felt tight so that I could barely breathe...I couldn't sleep, even though I was so, so tired. Eventually I relaxed watching "Grey's Anatomy"--it is always easier to forget your own problems when you are watching someone else's. 

Amber came in to take care of me. Most of that day for me was spent moving from one place to another to lay down. I was sore but otherwise okay, and I missed and fretted over Emerald. Michael kept me updated--he was now administering her insulin shots, which she was so nervous about at first but then Grannymom held her and soothed her and she was okay. He was doing her finger prick glucose tests, and was feeling pretty confident. The next day the diabetic consultant would be coming in to talk to us about counting carbs and novalog and lantis...it felt all over our head and so scary. 

My procedure was on Friday; by Saturday, I was up there for breakfast to spend time with Emerald and talk to the specialists. 

The endocrinologist explained diabetes to us: it is an auto-immune disease; her body was predisposed to this condition. She would have gotten sick with some nothing sickness, which would cause her body to attack her pancreas's beta cells--the cells that control the production of insulin. By the time we got her to the hospital, usually the pancreas beta cell function is down to about 10-20%; by the end of the year, it will be down to 0% functioning where she is completely dependent on her insulin. 

Counting carbohydrates is...I wouldn't say "easy" for me, but I picked it up quickly. I had gestational diabetes all three pregnancies, so I was used to counting carbs and building meals. What I was completely unsure and uncomfortable with was the insulin shots--I didn't want to poke my baby girl! Luckily, however, Michael was absolutely fearless; he was confident and picked up the shots so naturally. We made the perfect pair! Between the two of us, we were able to handle the carb counting, covering it with insulin, shots, and finger pokes. 

A kind of quick mini course on carb counting (which they couldn't have made sound more confusing if they tried): one carbohydrate is 15 carbs, which is like an apple, a slice of bread, a glass of milk. She needs 45-60 carbs (or 3-4 carbohyrdates) for every meal, and 15-30 (1-2) for every snack. She does not get insulin for snacks as they are just to keep her blood sugar high enough to get her to the next meal. After each meal (or before, doesn't really matter when as long as you are careful and watching it), she gets 1 unit of novalog for every 2 carbohydrates/30 carbs, plus 1 unit for every 100 over 150 her blood sugar is. Which means with well controlled blood sugar, we are generally looking at around 2 units of novalog. We can go over the 60 carbs at a meal as long as we cover it with the insulin. 

The lantis stays the same regardless--it is always 7 units, every night at 8 pm. It is to make up for the baseline insulin the liver secretes everyday to keep the body going. 

Confusing, right? After a while, you start memorizing what frequently eaten foods are and so it isn't as much of a struggle, but I am still looking up a lot of things.

My family mostly took care of the boys and the house while Emerald was in the hospital--they pruned the rose bushes, hung shelves in the living room, Emerald's room, and the boy's room, did laundry, cleaned the house front to back, manned all the meals and the dishes, went shopping, and basically kept themselves very busy. No one in my family sits still for long, lol. Michael's family helped with Emerald--staying up there with her when I couldn't, doing the kids' laundry, watching Benjamin when my mom needed to be with me...we are so lucky to have so much family to help!! 

Saturday, Beth and David and Andrew Bevill came up to visit us at the hospital; after Dr. Beck (the endocrinologist) met with us, she said that Michael, Emerald, and I were an exemplary family--we had picked everything up so quickly and they were all confident that we would be more than capable of handling Emerald's diabetes. We could go home that day! 

Ummm....NO?! 

We aren't ready!! We were expecting a week long hospital stay!! And while it would be convenient to have all my little ducklings in one place again, we were petrified to be sent home with this sick, fragile (fragile? Ha!) life in our hands. What if we messed up her blood sugars? What if she went into DKA again? What if we accidentally overdosed her insulin?! No, no, no--she can stay right here with the doctors and the nurses and everyone telling us what to do, thank you very much!

Obviously you can't say that. For one thing, hospital visits are costly and insurance doesn't pay for extra days just because we are scared. Emerald could be there for four days or for forty and we would still be terrified to bring her home. It is normal to be scared, or I'd like to think it is. It was time to start living our life again. 

By that afternoon we had her back home. I had accidentally let the Medicaid for Emerald lapse because it didn't automatically renew like Gabriel's does, so we had to pay for insulin out of pocket...ouch! Nearly $600. We were blessed to have it available when most months we are lucky to have two coins to rub together, but it was still a hefty and unexpected cost. (For those of you who are worried, Medicaid will cover the hospital stay because we got them back covered and they cover up to three months of unpaid medical bills.)

The one hiccup after she came home: I gave Emerald her banana as a snack; but then she got in line for a cereal bar with her brothers and cousins, so Uncle Jarrod (unthinkingly) handed her one too. He felt so horrible, he took her outside and ran her from one end of the street to the other, and her blood sugar came out just fine before the next meal, so no harm done :) 

This is much longer  than I intended or wanted it to be so I am going to go rest my now very scrunched shoulders and cramping fingers. I don't see how people stay on the computer all day!! 

I know that this is focused a lot on me--my perceptions and feelings and perspectives--but that's because hey, I wrote it. Maybe we can see if Michael would be willing to do a guest spot on the blog and write his take on all of this. 

Have a fantabulous day and look for more updates soon (hopefully)!

--Andie

Christmas Carols (as taught by Daddy)

The Christmas carols Emerald learned this past Christmas from a combination of Daddy and Glo:

"Rudolph the red-nosed reindeer...crashed!"

"Frosty the Snowman....Melted."


--Andie

Andie Today

I got a little sentimental talking about Michael there for a minute; let's lighten the mood by talking about cuddly, bubbly Mama!!

It is hard to write about myself--it is much easier to brag on my wonderful husband or darling children than it is to talk about me. I am a woman of extremes. When I am happy, the whole world is happy with me, especially my family. The children are better behaved, everyone has a better day, and we live in cheerful harmony and love. When I have a bad day though, my surly disposition sets the tone for everybody else. I always feel guilty because then Michael has to work double-time trying to bring me out of my slump. Luckily,  for the most part I work very hard to maintain a sunny disposition and keep everything bright :) 

I am 25 years old; my nicknames are Mama, Gingerbready, Dee, Dandy, Dandy-Dee, and Andie (thought you knew my real name, didn'tcha?)

My Favorites

Games: Fallout! 

 

Fallout 3 by Bethesda came out and Philip Lopez (a friend of ours from college) swore by it. We bought it and....hated it. It was so blah and colorless and boring and we didn't know where to go and it just wasn't our thing. 

So a few months later, we try it again. And it is amazing! How did we not like this the first time?! It is such a rich and fulfilling experience!! It is set in the ruins of Washington DC years after a nuclear attack; you are a vault dweller that ventures out to explore scorched wastelands and struggling communities, fight off ghouls and super mutants and irradiated creatures that have gone mad and rabid....ahh!! It is too awesome for words.

And then, glory of glories...Fallout New Vegas, published by Bethesda but developed by Obsidian....

Oh, my. 

This game is hands down my favorite ever. It is everything I want in a game: light RPG, action, adventure, a little bit of fear mixed in...sure, real nerds will point out that when the game came out, there were some pretty significant bugs. But I didn't fall in those bugs because I don't suck, and I know I have never had more fun than when I was playing this game. 

Other games I like: Oblivion, Skyrim, Star Wars: The Old Republic, Bioshock 1 and 2, and Forza 4. 

Activities: My latest craze is crafting--I crochet mostly, but I learning how to knook (knit with crochet hooks) and knit; I would like to get a sewing machine so that I can start making simple things like pillows and curtains and skirts. I also cross-stitch though I haven't gotten to do it in years. I like to cook but I have been working on my baking lately. As mentioned, I play a bit of video games--the best time to play is when you are up late nursing a new baby (Oblivion got me through Emerald's sleepless nights; Fallout 3 through Gabriel; Skyrim for Benjamin). 

Of course my favorite since I was a wee girl has always been reading. I adore to read, anything and everything--books about history, science, nutrition, philosophy, religion; novels in every genre you can think of (except erotica, which is just gross to me); plays and poetry and sonnets...my Nook is overflowing with books queued up, hundreds of books waiting and hundreds I have all ready finished. Reading is a passion of mine and I sincerely hope it stays with me for life. 

TV Shows: There are the shows I watch with Michael like "Merlin" (which has really gotten annoying of late) and "Doctor Who" (Chris Ecceston will always be my doctor, but I really do love David Tennant), plus Supernatural, The Office, Simpsons; things of that nature. I really enjoy all of those shows, and it is fun to share them with Michael. I also have the shows I watch all by myself, like Grey's Anatomy, Private Practice, Desperate Housewives, and Glee. I really love shows about medicine and doctors, though not all of them are winners. I don't really think I have a "favorite" TV show. 

Food: Carnitas quesarito from Freebirds--I get carnitas, Spanish rice, pinto beans, mixed cheese, avocado, poblano salsa, and sour cream......mmmm, it is amazing. Hot wings, barbecue or spicy buffalo, though I really prefer the little drumsticks to the wing-wings. As anyone that knows me can attest, I am a shamefully picky eater. It is actually kind of easier for me to tell you what I don't eat rather than what I do; but I am trying to keep this positive and don't want to bring light to those things that I do not tolerate. More often than not, I try and eat healthy--even if I don't particularly care for it (like bananas or artichokes), I still eat them because they are good for me. 

Campbell's potato soup; whole wheat toast with sugar free orange marmalade...my favorite pie is Key Lime, my favorite sweet treat is Ferrero raffaellos, and I will love just about anything peppermint flavored. 

Movie: I love and want to believe in magic. Not like Harry Potter magic, witchcraft or wizardry, nor the slight-of-hand and illusions of modern performers. I want to believe that the world we live in is inherently and every day capable of more. Many of my favorites, including my favorite movie, reflect that love.

Big Fish

The whole movie is just beautiful and full of fancy alongside perfectly pedestrian everyday...I find it enchanting. Of course, I all ready adore Tim Burton for his whimsical style. Other movies I particularly enjoy: Eternal Sunshine of the Spotless Mind and Singing in the Rain. 

Songs: Since I was 13, my favorite song has been "Iris" by Goo Goo Dolls. It just appeals to me on many levels, even associated as it was with a rather lousy movie. I pretend the movie doesn't exist as much as I am able. Ludovico Einaudi is a love of mine. Queen is my favorite band. I also like Pink, Matchbox Twenty, Goo Goo Dolls, Joshua Radin, Garth Brooks, Newsboys, Fall Out Boy, Aerosmith, Dave Matthew's Band, and All American Rejects. 

Currently, most of what I listen to is Christian--the kids enjoy it and I don't worry about them picking up something they shouldn't. Chris Tomlin and Matthew West are really great. 

Books: For most of my life, my favorite book was "Little Women" by Louisa May Alcott. Don't get me wrong, I still adore that book; last year, however, I read a novel that really blew me away. It made a profound impact on me and rushed to becoming my favorite book of all time. 

"One Hundred Years of Solitude" by Gabriel Garcia Marquez

 

His style of writing is so artistic and lovely, combining that element of natural magic that makes scenes that much more moving. As an example: when the patriarch of the family Aureliano Buendia passes away, yellow flowers rain from the sky for three days, carpeting the entire fictional city of Macondo in petals. 

Seriously, you guys--if you have not read this book; do it! "Love in the Time of Cholera" was fantastic too, but this book is so, so much more. 

I also have worn my way through nearly ten copies of "The Baby Name Wizard" by Laura Wattenberg. It is the best baby name book on the market and really fueled my obsession with onomastics. 

Color: Gold; it is irrepressible and lasting, symbolizing balance, wisdom, and immutability. Sure, it comes on a little strong and some people find it tacky, but to me it is warm and unique. 

Flower: Carnations; they date back more than 2000 years, the pink carnations are said to have sprung from the Virgin Mary's tears at the foot of the cross, symbolizing a mother's undying love. I like them because of their delicate scent, soft shape, and unassuming beauty--my favorites are the whites (which symbolizes pure, innocent love) with tinted edges of yellow, pink, or red. 

I am a stressed out mom that expects to be able to do everything--definitely a cliche, but there is a reason mothers work themselves to the bone. We want to give our children the best of everything, the greatest shot of growing up to be well-rounded, contented, kind people that can do anything if they just work hard enough. As I spend more time with the kids, where I start as an individual and who I am as their mom starts to blur more and more; I adore them and they are my life, but I don't want to forget who and what I am. I want to remember that I have a mind of my own, a life of my own, outside of school events and nap times, even if just once in a while :) 

--Andie