The Best Advice I Wish I'd Taken

Um.. So this could be a touchy subject.. I'm not sure this is the right place to discuss "arguments", "heated discussions", or "fights" between couples.. SO, allow me to introduce you to the fly on the wall,  hypothetical Jane and hypothetical John. Their names have been changed to protect their privacy, and about a third of this post will be completely untrue and.. it will be up to you to figure it all out, but the main point will be obvious. That make sense?

The couple that Mr. Fly will be telling you about have been married about 10 years. Jane has brown hair, violet eyes, and a nose ring. :c) John has brown hair, chocolate brown eyes, and big muscles. The have one child. A little girl with fiery red hair, brown eyes, & a smile that lights up a room. This is his account of one afternoon's happenings:

One day John came home from a hard day's work (he lays railroad), and was upset that once again the house was not clean. He was greeted at the door by the cat. John is not particularly fond of cats, but he will pet this one when he thinks no one is looking. He finds his wife in the next room, on her kindle, and the little redhead on the couch with her tablet. She was laying on her back, feet in the air, holding it up, while she used one or both hands to play her game. The child, not the lady (because the lady hasn't been that limber or flexible since.. ever). This is the child's favorite way to hold her Ipad. The only downside is that sometimes her big toes get tired and it slips, usually falling on her face.

John goes to the bathroom, and the little wife follows to say "Hello" and "How was your day" only to get a gruff reply. He just didn't understand how the house was still dirty. "It's been dirty over a month," he says. He went on to say that he saw their child on the Ipad, perfectly content, and why couldn't you wash dishes while she's on it?? The answer is really simple. The little redhead doesn't miss a thing, and she doesn't want to play on her tablet alone. She has these "rules" of how things are supposed to go, and at this point, her mother would do almost anything to keep her from whining and crying. This has been a long, mostly unhappy summer. The wife tells him this and reminds him how often their little girl needs to eat, and how someone must be with her, and that that takes time. He insists that they should make the cat do more around the house, because, after all, all he does is sleep, eat, and use his litter box--it wouldn't hurt him to watch a little girl eat so she could clean. "That's ridiculous!" protests the wife. "How would he give her the Heimlich if she became choked?" He sputters for a moment says, "What about Dr. {Very Nice Development Pediatrician That We Haven't Seen In Years}!?!" (Now referred to as Dr. VNDP)  "Huh?" Jane says. "What about Dr. VNDP?!" John repeats. Jane snaps, "Dr. VNDP lives in {another state}! We haven't seen her in years!"  "But what did she say?!"  "She said that I should go on a getaway with the girls for a few days! Take off for a week so that you would understand what I go through!" "What?" He looked purely shocked, by the way. "She said that you wouldn't understand unless you had to do it on your own for a few days, and I laughed, and told her that it wouldn't happen." At this point, Jane picks up the toilet plunger and beats John over the head with it. "I wish I'd done it!" she said, "because you just don't get it!"

This is where I'll stop. After living in this household for years (have I told you of my stealthiness?), I have to agree with the wife. This summer she's been kicked in the jaw over a phone call that wasn't going the child's way, endured hours of endless whining that kept away any chance of company, not to mention the meltdowns when she took her outside, because this summer has been unusually nice, bearable and even sometimes cool. This is, obviously, not what summer is supposed to feel like. The child simply doesn't allow her to clean, and even though she's just mentally exhausted by the time the redhead's bedtime rolls around, she still deserves time to relax. This has been the little girl's worst summer as far as acting out. There's still time, maybe the wifey should plan a weekend get away? I heard her tell John last night to plan on taking a week off next summer, because she was going on vacation with a couple friends. You go girl!

If you're the primary caregiver and your spouse, partner, or sperm donor doesn't "get it," let them carry the load for awhile. It will be good for everyone involved.

Tip-toe through the fester field

I try to stay away from angry blogging. I don't want this to be a source of pain to someone else..  Another thing to add to their "Field of Fester," where they go to wallow in it's septic mud--a mixture of self-pity, paranoia, anger, and being a know-it-all.

Beware the septic mud! 

If you happen to get too close to a "Fester-er" , you must tread gently or else you'll step on a landmine that will splatter you with crap like the pus of a giant pimple. Usually, I try to ignore it, but sometimes I have to get  it off my chest before I start to fester myself. By the way,....

I Miss AKA Super Mommy.

The longer I blog, the more I miss it. The main people that I started blogging afresh for, don't even read it. And I thought that I'd downloaded copies of blog entries that I was hoping to publish under my new name... only to find out I actually didn't. THAT was a major bummer. Anyway, back to starting afresh without anonymity. In some ways, it can be really refreshing to know that I'm accountable for everything I write and I can share it with anyone without having to worry. In another way, it's horrible, because even the best of friends will make you mad sometimes... and... even though this is the best place to express those feelings, sometimes you feel you have to--like when your brother or sister has a big autism no-no moment, or someone you're friends with goes all "if this was my kid" on you,...or when someone close to you feels that you're "sparing the rod" & it's "spoiling the child." In those moments, autism parents, or just special needs parents in general, feel so alone. And it's so unsettling. & It hurts. But when someone either gets up enough nerve (or has enough anger), that they just let all those feelings loose in a public place--facebook page, blog, support group, whatever--and you see that you aren't the only one who's been treated that way.. (OR, on a lighter note, your child isn't the only one who does that:) It's a mixture of relief, sadness, anger, and/or giggles & joy that forms a bittersweet bond. You've got their back, and you know that they've got your's. And suddenly, it seems that you have two groups of friends--"them" & "us."

Roo's Birth Story: Part II

Picking up from where I left off...

The moment when I felt my baby being taken from my belly, it was like the world paused. After the longest 2 seconds of my life, she let out a loud wail. I was able to breathe again. She was wiped down & laid on my chest, & Terry and I both had tears streaming down our faces. I was so thankful for this child, so thankful that she was alive, and.. to be honest..  so thankful that this was over with. I was ready to move on.

A minute later she was taken to another room and Terry followed. A couple of nurses were left with me and they started to clean me up. They kept talking to me, telling me how much fluid there was, LOTS of suctioning was going on. Then there was some silence and I heard one of them say, "What's that??" I never did hear the reply, but once again there was more suctioning. My OB doctor came back in to stitch me up and then left again. I was finally switched back over to a bed by the nurses, and wheeled back to my room. Halfway there my OB doctor rushed up to the nurses and said, "Where's the placenta?!" They told her that they already threw it away, and just shrugged like it was normal procedure even though the doctor seemed upset.

People came to visit me from time to time. Nobody was talking much about my baby. Some were better at putting on a happy face than others, but I could sense something was wrong. My OR nurse came back often to see if I had feeling back in my toes yet, because I couldn't go to the nursery until then. My doctor was very sweet. She checked on me, asked me how I was, and even brought me some sprite. Her bedside manners where wonderful.

Down the hall, through a  pair of thick sound proof doors, a different scene was playing out. My husband was angry. People who described him, did it with wide eyes. My poor Roo.. her blood sugar was 16, I think... dangerously low.. and she was being poked over and over again by incompetent nurses who didn't know how to start a newborn IV. Even after other nurses told them a team from Riley was coming, they continued on. To this day, I would like to have some words with them, whoever they are. 

Everybody knew that Roo was going to be transferred to a Children's Hospital before I did. Nobody wanted to tell me. Finally, the pediatrician on-call came to visit. She told me that they thought she had Trisomy 18 & that she was being life-lined to Riley Hospital for Children. I started to cry, and her reaction.."Oh, Mom is crying.. *tsk, tsk, tsk*" and then gave me a pitiful smile & left the room. Her lack of compassion, emotional wall, or whatever it was that she put up, sealed the deal that she would never be my daughter's pediatrician. 

I was crying, my mom was crying.. and she hugged me. All I could say was that I didn't understand, all the tests came back normal. With this, I must backpedal a little bit and tell you about my pregnancy. Besides being HUGE from all the extra fluid, I had extremely mild gestational diabetes. Literally, I was 1 point over the limit. I had to check my blood sugar for a week and then it was determined that it could be managed with diet and exercise. The dietitian told me that if I happened to slip up, go for a walk, and to take a walk daily. I was good. I took my prenatal vitamins till the end. Little snacks that I packed around with me where things like.. celery sticks. Bleh. Anyway, when I had the blood work done in which they checked for different genetic markers, the results came back that Roo was 1 in 10 for Trisomy 18. We met with geneticists, had ultrasound after ultrasound during my pregnancy to make sure her organs where forming correctly, and that she was responsive.. At one point they wanted to do an amniocentesis. Looking back, I wish I would have agreed, but I didn't know what was ahead. I didn't know she would grow into the term  "medically unique". And I still don't know if it would have made any difference in the long run. At the time, my thoughts were that none of the additional testing had come back showing any evidence that something was wrong, and the procedure didn't seem worth the risk. 

Once again, I have to give thanks for the nurse who made sure I held my baby before the Riley team arrived. She had an oral feeding tube in place & she kept playing with it with her tongue. My little redhead was still fussing up a storm when they handed her to me, and then she just stopped and looked at me with those big eyes. She already knew who I was.. <3 

If you've never seen a lifeline team, it can be surreal. The team arrived dressed in dark blue jumpsuits, with red stripes down the side, wheeling in an incubator. I kissed my princess goodbye and handed her over. 

Later, I was told by a friend that they started an IV with 1 stick. That's right, one stick. 

Her dad left me early the next morning, and then my mom stayed with me at the hospital. I was terrified to stay alone. I wouldn't see my little redhead for 4 days. The daytime nurse in charge of my care was horrible. I spent another night in the hospital and then was discharged. I spent another night at my Mom's house, and then packed my stuff up and headed to the children's hospital. We had a room at the Ronald McDonald House for 3 weeks. They. Are. Amazing.

The next chapter will be from my husband's point of view. Sorry for my long absentee. February was especially dreary. ;-) 

Roo's Birth Story: Part I

One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor  until the next day.

The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes.  At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until almost the end. 

We called our parents and loved ones to let them know about the change in plans, as we were assured that this baby was coming today. A couple of hours later I was dilated to 4, but still in no pain. Occasionally there was some pressure, like a hug, but nothing hurt. So when my OB/GYN came to see me & offered an epidural, I refused. She was a little surprised, but okay with it once she realized I wasn't trying to be brave. 

An hour or so later, there was some concern for my baby because of her earlier fetal distress. My water still hadn't broken, but my doctor wanted to hook a special monitor up to Roo that could only be done once my water broke. It was decided that it would be in everyone's best interest to break my water manually. Now that was uncomfortable! It didn't really hurt, but felt like a little pinch, and then GUSH.  That gush  definitely makes the top five of the most disgusting things I've ever experienced in my life. There was SO MUCH amniotic fluid. I didn't think it was ever going to stop. 

Things started to progress quickly after that. I still wasn't in any pain. In fact, I couldn't stand talking to people while I was laying on my back, because it was putting a strain on my neck trying to look at everyone.  So my bed was adjusted to a sitting position that left my feet flat on the cushiony mattress that continued to  support my legs and let me sit comfortably. It was an amazing bed.

Nobody wanted to scare me, but the fetal distress had begun again. My doctor informed me that we needed to do an emergency c-section, and that an epidural was no longer an option. I would have to have a spinal tap. I was so scared. People came in to wish me luck and give me love before they wheeled me down to the OR. I didn't realize what a rush there was until the OB/GYN looked at my husband and said, "Dad, why aren't you in scrubs yet??" She nearly ran out of the room to go fetch some.

The last 5 minutes, while things were being prepped elsewhere, I was prepped by being ready to go. Lying flat on my back, the contractions started coming on stronger. And. They. HURT. My sweet pastor was talking to me close to my face, probably praying for me, reassuring me.. I don't even remember. What I do remember is asking her through clenched teeth to please get out of my face, that I was having contractions. Everybody got a giggle out of that, even her.. Wait, except me, I wasn't laughing anymore. :-)

I was so scared as they wheeled me down the hall that my teeth started chattering and I was trembling. I think they thought I was having a medical issue, because several looked at me and asked if something was wrong. I told them that I was just scared and on we rolled. 

Once in the operating room, they were quickly prepping me for the spinal tap.. I was still so scared. I didn't think I could handle the needle. I wish I'd never seen one. I've never done well with blood draws  & 3 trimesters of Childhood Development Classes in high school had given me a healthy respect for any needles or instruments used during delivery. 

I sat on the table and started to cry as they cleaned the spot on my back, and a sweet nurse, with dark wavy hair told me to lean into her and that she would hold me with a big hug while they did the procedure. It sounded like she was praying over me as I cried on her shoulder, and that one moment gave me so much peace. I don't even know what she said, but I felt comforted. I was told to lay still, and after the medication took effect, and a blue screen blocked my view, Terry was allowed into the room. He sat beside me, held my hand, and told me he loved me while the tears silently rolled down my face. He wanted to take pictures, but I guess there were extra hands in the room, because one of the nurses grabbed the camera and said that she would take care of it. She even got a picture of the clock on the wall within a moment of her birth. 

Roo came out crying and covered in white gunk, and even though I have pictures, many of them are sorta of graphic with the blood and gunk, ..and mostly, very personal. I probably won't share many of those with you. Here's a photo of the 3 of us though. 

A previous post may have already told you about Roo's cleft palate, and how it was discovered.. And how she had very low blood sugar, and was needlessly poked over and over again by nurses who were  unexperienced with starting newborn IVs.. but that's the next chapter in this story. I will go over those moments in further detail the next time I write about Roo's big debut. ;-) Thanks for reading & God bless! 

Why does Roo have a feeding tube?

Today was pretty uneventful. Anything exciting that happened was posted on my Facebook page. Terry wasn't able to go to work today, & we are dealing with extreme cold temperatures.  It's  still unclear whether he will work tomorrow or not, but school was cancelled earlier today.

I still feel like blogging though, so here's a little (yeah right!) back story, our history, experience ..whatever you want to call it.. with feeding tubes.

Roo's Tubie

One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor  until the next day.

The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes.  At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until it was almost the end.

That's how Roo's birth story began, but it's a long one, so I'll fast forward 8 hours later to a spinal tap, and  an emergency c-section. Trust me, I will go into more details about this later. It deserves it's own post, really. When Roo was born, she had dangerously low blood sugar and a 2 vesseled umbilical cord. In case you didn't know, there are supposed to be three blood vessels in an umbilical cord, and while it doesn't seem to make a difference in some children, in others, it causes them not to get the nutrients they need while in the womb. By chance, one of the nurses spotted a small split in the back of the roof of her mouth. This automatically won my sweet baby a ride by ambulance to Riley Hospital For Children and a bed in their NICU (Neonatal Intensive Care Unit) for further testing.

Terry holding Roo while in the NICU

For some reason, my spinal tap wasn't wearing off as quickly as they expected. In hindsight, I think this was a gift from God. There was so much chaos outside of my quiet room. A group of ...it feels mean to say inexperienced, so lets just less experienced and . .... Okay, I don't have a lot of nice things to say about this particular group of the nurses, so what's it matter anyway? A few weeks before, a new hospital opened and almost all of the experienced OB nurses switched to that hospital. The ones that I had in the OR were excellent, and another older lady--the one who actually spotted the cleft palate--they were great. The first hours of Roo's life were spent being poked over and over again by nurses who didn't know how to start an IV in a newborn. A friend told me later that someone had told them that the team from Riley would start one when they got there, but still they kept on trying. Even now, thinking about it ticks me off. So it's good that I didn't see that, but if it wasn't for this older nurse, I wouldn't even have held her at all before they took her to the children's hospital. I'm so grateful for this woman. To this day, we've never taken her back to this particular hospital.

Sweet Pic with NG Tube

From day one, Roo had a feeding tube of some sort. In the first few hours it was a small plastic tube that went through her mouth and down into her belly, that allowed her to be given fluids to raise her blood sugar. The next time I saw her, nearly 4 days later, the plastic tube had been moved to her nasal passage, where it went down the back of her throat, through the esophagus, and directly into her belly (same as the oral one, but through the nose). This precaution was taken because she hadn't had the proper testing to determine if she aspirated fluids when she sucked on a bottle. This is normal protocol for babies born with a cleft palate. We had sessions with feeding specialists during our NICU stay to help Roo be ready for the test when the time came. Unfortunately, she still didn't pass the test, called a swallow study, and we were eventually sent home still feeding her through the tube that went through her nose. This type of feeding tube is called an NG tube. It's usually a temporary fix.

Roo and Mamaw.. The white tube
coming out under her shirt
attaches to a feeding pump.

Roo's next hospital stay was the one that taught us the words "biliary atresia" (a form of pediatric liver disease), and "Kasai" (a possible life saving surgery for infants with biliary atresia), and ..so many other words.. During Roo's Kasai surgery, she had a feeding tube placed that went directly through the abdomen and into her stomach. It seemed like a good idea. And it was. Still, we looked forward to the day we could give our baby a bottle like a typical baby, but that day didn't come. We left the hospital seven weeks later with a central line that she received TPN through (it's like IV food), and a feeding pump that hooked up to her feeding tube and pumped small amounts of formula into her belly 24 hours a day. She had a really hard time with acid reflux at that time & this was supposed to help her keep foods down. Nobody really explained how things were supposed to be, but she was still gaining weight despite all the vomiting.

When she was 4 months old, the doctors decided that she was ready & she had her central line taken out. A few days later, Dec. 26, 2006, she was admitted back into Riley for RSV, which we always assumed she got during her visit to have the central line removed. It was during this stay that she was switched to a different reflux medication, Prevacid, & I'm not exaggerating one bit that it was a life changing moment. Before, she would reflux so often, and not know how to spit it out, and we would have to use huge suction bulbs to get it out so she wouldn't choke. And you're probably thinking that common sense would have told us to say something, but we were discharged way. We thought that this was just how things were going to be for her.

Pudding High :-)

At around 8 or 9 months old, she passed her swallow study. And after the many different bottles, including some pretty fancy ones that the hospital gave us, the little booger still wouldn't take a bottle. In fact, her suction was so poor that she wasn't able to use a pacifier without holding it to her mouth.. Which she did, cutely. :)

The fact that she has such a poor diet now astounds me because we worked so hard with her. We had to teach her everything. We would put a little bit of baby food in her mouth and she would look at us all wide eyed like "What am I supposed to do with this?!" and eventually it would slide out. Then we started dabbing just the teeniest bit of baby food on her green soothie pacifier and she would hold it to her mouth and yum-yum-yum it off. Gradually we were able to increase the amount on the pacifier and a few months later, she would take a bite of baby food off a spoon and stick the paci in her mouth on her own to help her swallow. That was the only way she knew how to swallow it.

Smile you know you want to!

At some point we started to give her those little Gerber cereal snacks--the ones that basically melt as soon as they touch your mouth--and she learned to chew. Then her Occupational Therapist suggested Cheetos. Everything changed after that. Gone were the days of baby food. It was pudding, suckers, go-gurt, chicken & stars soup, spaghettios, vegetable soup... canned corn, peas, and carrots... Then, as she became older, she would chew on pizza crust, eat tiny pieces of cut up pizza, and bologna, and cheese and.. the list goes on. We were so excited! Our church was praying, everyone, all of our friends and family, were hoping that she could get rid of the feeding tube. It seemed everyone was excited with us. I began giving her her medications by mouth, and she didn't mind most of them. The Zyrtec never went well, and I don't blame her. Ever tasted that stuff??

She would only drink out of
this kind of cup for the
longest time.

For six months she took everything by mouth and didn't use the feeding tube. For six months a child that was once diagnosed as "failure to thrive," grew and gained weight, and supported herself. We were right on the verge of calling doctors and letting them know that the time had arrived and she was ready to have her tube taken out. Then she got sick. Cholangitis (an infection in the bile ducts) put us in the hospital again. That was what usually put us in there. And she stopped eating. She just quit. Even after we came home, and she was better, we would start to gain momentum, she would go back in the hospital, and stop eating all over again. I don't know exactly when it happened, but gradually she quit eating most foods.

Cheerios and fries,
meal of champions! ;)

Today, at 7 years old, she will willingly eat animal crackers, pretzel sticks (or twists--never both at the same time), sometimes goldfish crackers, McDonald's french fries, cheerios and Kroger cheesy puffcorn. Rarely she'll eat carrot sticks, and will only drink milk. That's it. She gets pediasure through her feeding tube while at school or on the go, because she refuses to eat anywhere but home or my parent's house. She doesn't take any of her medications by mouth anymore.

Oh my gosh, she touched it! ha ha

Honestly, at first it was heartbreaking when we realized how far she had regressed. Devastating even. Not only were we disappointed, but we also knew that other people were too. Church folks, the ones who prayed so hard for her, would get confused looks on their face and say, "I thought she was over that," when they saw us giving her a bolus (fancy word for feeding her through the feeding tube). And it hurt. A lot. Now.. Now it's just annoying. Now she's a big girl with her own ideas of what sorts of food should be eaten. Sometimes she won't even eat her normal stuff because she's so repulsed by what's on our plates (think "onions"). Now we don't beat ourselves up over things we can't control.. like foods that she won't eat.

So, why does Roo have a feeding tube? Because she needs one.;)

And.... It Snowed.

Have you ever wondered what it's like to be in a power outage with a special needs child? Grab a cup of coffee, settle into your chair, and listen while I tell you about my day.

The weather forecasters were pretty off on their timing of the winter storm starting, and I was hopeful that they'd be off on accumulations and temperature drops too. The day started off great. I worked on sanding down my future crafty spot off and on--a beautiful butcher block island that kept oozing a mysterious sticky resin left behind by previous owners & ultimately making it a junk spot. I did dishes, folded clothes & put them away, and as time went on I was feeling increasingly confident that we would keep our power on. So confident that I washed our winter coats. Roo spilled milk all over hers yesterday & I normally wash them all when I have to wash one.

Things were going well. Everybody was doing what they wanted. I proclaimed myself a maid for the day and informed my husband that he was now a manny (male nanny). The sink had just been loaded with more dishes--I'm not lucky enough to have a dishwasher (hired or electric), the dryer was ending  it's last cycle, and the coats were in the washer  waiting for the dryer.  Roo was occupied watching a favorite cartoon and Terry was outside shoveling snow.

The power went out.

...

The power came on.

.....

The power went out again, and this time it stayed off. And stayed off. And stayed off.

Before I go any farther, I need to tell you that my husband is an amazing man. He's the kind of man who pulls over to help people when they have a flat, not worrying that it could all just be a setup. He's the one who takes Roo back to the OR when she needs a procedure, because mommy just can't bear to watch her child be put to sleep, even if it is just anesthesia. Today was not his best day. I often think that he would sleep better/handle certain stresses better if he would take an antidepressant. In fact, I think that if he went on medication, I would be able to take less. ;) regardless of the way this day played out, this is not his typical character.

Roo was stunned, in awe that no matter how many times she flipped the switch, the lights would not come back on. I took out an old bill to report our outage and she brought me my debit card from the desk. The look on her face was priceless, "Pay it, Mommy, quick!" :)) It was awesome.

My husband came inside from shoveling and it wasn't long before he started panicking. He wanted to go somewhere. He was afraid that the power would be out for days and we would be stuck here in sub-zero weather. I had prepared for this storm. I had a plan. I was not abandoning 2 guinea pigs & a cat, packing up every single stinking thing that my daughter would need somewhere else, packing up everything that he & I would need when the risk of traveling the roads was greater than the risk of staying home. We had groceries, we have a gas stove that doesn't require electricity to stay lit, and with this being a small home, that would probably keep us warm enough. Even the paranoid part of me was okay because being home meant keeping the house warmer than it would be if we left, and the pipes would have less chance of freezing annnnddd I know that there is an increased risk of CO2 poisoning when you heat your home with the oven, but we also have working, battery operated fire & CO2 alarms. In my mind, we were good.

Then my brother-in-law called and said that we could all camp out at his house if we wanted to and that he had a spare room. From a social perspective, this was ideal, but even in fair weather, it takes about 20 minutes to get to his house and the heavy wet snow, combined with the horrible risk of being stranded, didn't make it worth it... to me. Terry was mad. He was freaking out, and mad. I said, give it a couple of more hours. I'm at least fixing supper and then we'll decide what to do.

Roo is ultra-sensitive to emotions. I don't quite understand how she can sometimes perceive a group of happy laughing people as funny one time, and terrifying the next, but we generally just take it as it comes. It sounds stupid, but when I sense her stressing I try to put out a calm, tranquil signal. I must be halfway okay at this because I've been called "the baby whisperer" on more than one occasion over the years. Anyway, Roo is crying because daddy is mad and mommy is irritated and -- ya know what, he was a jerk and I stood my ground. You don't need to know the details, the words that were said.. I'm not airing out the laundry. My point is, our kids play off our emotions, and if we can't hold it together, how can we expect them to?

There were lots of crying spells. Once when I told Roo she would have to take a break from the Ipad because we needed to make sure we didn't run out of battery life. Another time was when I broke down sobbing over the phone with my mother, because I felt like the weight of world was on my shoulders. Another offer was made to "rescue us" --a very generous, selfless, four wheel drive offer-- and I turned it down because we didn't need rescued. Then a state of emergency was declared.. that was the whole purpose of my mom calling and I answered the phone ready to tell someone off because no one was listening to me that I didn't want to go anywhere! "Is it a blizzard?!" I asked my mother. "No," she said. "Then why is everyone freaking out?!!" God bless her, she made me feel so much better. Finally somebody told me that I was doing everything right, that it made more sense and was a good idea to stay put.

A little while later, maybe an hour, the lights came back on. I'm praying and hoping that they continue to stay on, and glad that the snow bit of this weather is over. Temperatures are dropping very low over the next couple of days, making me look forward to that promised high of 28 towards the end of this week.

Pity is a Four Letter Word

Sometimes I regret not leaving this blog anonymous. I suppose that's the best way to start this off.

Pity.

I hate it. It's like a slap in the face.

Some people can live off of it. They eat it up. They tell you story after story of this and that.. and maybe they don't even realize it, but as soon as you start to show them some "poor you" response, they look relieved.

I'm not one of those people. I don't function well like that. If I'm telling story after story, I probably just need to get it off my chest, and I'm probably already a little bit down in the dumps. When the results are that people pity me, or give me that "look".. I feel a deep sinking feeling, and it just makes things worse.

Anytime someone lends a helping hand, I really appreciate it, but I appreciate it the most when it's spontaneous. When I don't have to ask for it? That's how I know someone really wants to help, and they're not just doing it because they feel like they should.

Maybe I'm not making myself clear..

Be my friend because you like me, not because I have a sick child & you feel bad for me.
Desert me because you don't like me, not because I have a sick child & it scares you.
Talk to me because you want to, not because it's expected of you.
Don't ever, ever pity me or my family.

And finally...

Associating yourself with my child doesn't make you a hero. Period.

(Last line inspired by this wonderful post.)

Tantrums & Friends

I remember standing there, excited, nervous, so happy, yet scared... We were going home, really going home, and I told the Surgeon I had one last question.. "Wait," I said, "one more thing... If things hadn't gone the way they did.. If there hadn't been a bile leak, how long would our stay have been?"  "Oh," she said, "..about a week." and she smiled at me. For a split second I froze. If there was ever a moment for a **That's not fair!!*** tantrum, it was then, but I didn't even realize it. We were inpatient for roughly 7 weeks. This was our second stay, and if I could go back and tell the second stay me one thing... I would hug me until it hurt to breathe, and then I would tell me that everything was going to be okay.

Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and  disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.

One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.

I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.

So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.

Lots of Love,

~Cassie