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.)

Make-A-Wish Turned Us Down, & I'm Ok With That

If you happen to have liver disease, or you are a parent of someone with liver disease, or maybe you're just really close or involved with someone who has liver disease, there is a great group on Facebook called "Liver". Through this group I've come in contact with a great group of people who know what we're going through  (or at least partially ;).

Some of the kids in this group are younger than mine and, as far as I know, have been through a lot less. I'm not downgrading their situation one bit either--a life-threatening condition is a life-threatening condition.  So when they were actually granted wishes, and I am talking more than one non-transplant, not even listed yet child, I thought, "Huh...." and applied for Roo to get a wish. When I did, I knew it was a long-shot. Ironically, I had just spoken with her GI doctor at liver clinic about her liver's prognosis at this time, and she told me that it was good. Despite that, this particular doctor has known Roo the longest, so I thought I would apply with her listed first. (In case you don't know, the doctor(s) listed are applied to, and ultimately make the decision.)

Make-A-Wish said "No."

Am I devastated? Goodness no. There are plenty of children more sick than mine who will be granted a wish this year.

Am I embarrassed? Nope. With more hospital stays under our belts than I can keep track of, I had every right to apply.

How do I really feel about this?  I guess it's kind of weird, but I went into this with the attitude of "If they say yes, that's great, & if they say no, that's great too, because that means she's too healthy to have a wish granted. Either way, we're blessed." And that's truly how I feel. Despite everything, I am blessed... So Very Blessed.

If you know of a child with a life-threatening condition, and would like to nominate them for a wish, click here:  www.wish.org   Good luck! :-)

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

Glimmers of Me..

There hasn't been a lot going on around here. Right now, I'm eating popcorn & sipping Pepsi out of a cute cup decorated in a smarties theme. Sleepless in Seattle is on in the background, which is one of my all time favorite movies. The hubby is gone & the kiddo is asleep, & sometimes I just get tired of the quietness.

I pulled a muscle in my calf last week during a massive, early morning charley horse, which sent me to the ER the following night fearing a blood clot. Tests showed the all clear and the check out lady asked me for a $500 co-pay.. which was confusing because I thought it was $100? Either way, the fifth "bill me later" seemed to get through to her, lol.

This past week has been horrible as far as getting to school on time. I think we made it to the bus stop twice.. Anyway, next week will be better, right??

I throughly cleaned my bedroom today.. something that doesn't happen very often.. and it's nice. Sheets are in the dryer & I can't wait to put them on my bed..

And *this* is the excitement of my life! And *this*... is why I haven't been writing. Not a whole lot to share. :)

Just in case you were wondering, the little booger butt is doing great with the potty business. We're getting tons more dry pull-ups when we potty, and the sticker system actually helped this time.

The older Roo gets, the more that I see she does have some of me in her. It's more than looks, and it probably seems odd that it would be such a big deal, but I never knew if I would see any of "me" in her. For instance, she is SOOOO pokey in the mornings, and that is so me. I don't know how many times I've considered apologizing to my mother for all the missed buses just to see if our mornings would suddenly get better.

Something I excelled at as a child was reading, and Roo has always liked books, but now things are  different. She's not chewing on a board book, or flipping through the pages ninety miles an hour, she's listening.  I went out on a limb and changed our bedtime routine a month or so ago. I needed it. It was getting old & there were too many teary nights. It took some tweaking, but after a couple of nights she was hooked. We call all the people she loves to call earlier, and after snack, meds, & potty, we settle down on the couch and I read to her from a chapter book. Right now we're reading "Charlie & the Chocolate Factory" & I'm loving it just as much as she is. She lays there and listens until she falls asleep & we carry her to her bed. This  is awesome. We both look forward to our time reading together, and that is something that I definitely didn't know would ever happen.

Two Pumpkins & A Guinea Pig

So here's a little something you may not know about me, I am an animal lover. If I had the resources and time, I would put Dr. Doolittle to shame. As of right now, we have 2 guinea pigs, a cat, and the occasional grasshopper or toad (because who doesn't like hoppers??:). The toads and other found pets have a short stay of a couple of days in a temporary cage, but it's still fun.

The guinea pigs are both male and close to 3 years old. They each have their own personality and preferences, and Roo & I love them. I'm not completely sure about her dad, but I *think* he might be a closet guinea pig lover.

The first one we bought from a friend for Roo, and he was such a chunker that I wanted to name him Gus after the little mouse on Cinderella. After about a week of going back and forth on names and talking to her about it & getting no where, I was almost set on Gus. Then she overheard me talking to my mom on the phone about it, and she very clearly chimed in "Moo Moo, yeah. Moo Moo."  I was shocked, Mom thought it was funny, and when I would try to convince her of a different name she would get upset. So, Moo Moo it was.

Moo Moo is a sweetie, but after awhile he became lazy. Almost like he was bored. I did a little online research and it turned out that guinea pigs are a "herd animal" and that they tend to be happier when they have some friends. 

So I turned to Craigslist and found a beautiful pig for sale not to far from me. He came from a home full of kids, so I hoped that he would be more outgoing than Moo Moo because he was still very skittish. 

Well, I was wrong. Moo Moo stepped up to be the dominant pig, and Lucky let him. I've heard awful stories about boars fighting and spraying when they first meet, but it was like these two shook hands and agreed upon it. Moo Moo became outgoing and protective of his new friend to the point that I couldn't look at Lucky without Moo Moo chattering his teeth at me. They're buddies.

The absolute worst part of owning a guinea pig is how often they poop. The second worst part is if they pee on their hay it will make the whole house smell like a barn (same with wood shavings, that's why I don't use them). Occasionally I will call them my little poopers.. but they're pretty good. Moo Moo has made some new friends though...

I bought some soft, cute pumpkins from Petsmart for them to cuddle with and when they do it's adorable, but something got into Moo Moo the other day... I thought for sure they were fighting over food or something. So I grabbed a couple of carrots to split them up. Lucky started to gobble his up, and Moo Moo ignored his. The only thing I could think of was that maybe Lucky had challenged Moo Moo somehow, because 3 year old pigs are way past puberty so that shouldn't be an issue. So I sat down, and the fighting continued.. I looked over & I started to watch them.. 

not my pic, but pretty much my facial expression

Dirty Little Moo Moo was acting like a pig and trying to mount Lucky, and Lucky was like "Don't even.." and then Moo Moo started mounting the pumpkins! I'm not joking! Those poor pumpkins. There were two of them, and a little witch and he would give a little love to all three of them & try again with Lucky.. And this went on for like a half hour! Gotta hand it to Lucky though, he never gave in. So if you ever here me talk about "the pumpkin humper" or "the one who isn't gay," you'll know who I'm referring to. 

The Moment When The NP Needed A Hug

Thursday we had our first appointment with Urology at Riley Hospital for Children. Roo is seven years old now, and still has to wear a pullup everyday. In fact, she goes through several, and as much as we've tried, she still can't seem to let us know when she needs to go, or take herself there either. It would be so much easier just to blame her incontinence on having autism, but she has so many other complexities that that would be stupid. Yes, it could be her developmental delay/autism, or it could be some sort of abnormality linked to the biliary atresia (this is a great link that explains this form of liver disease in detail).. Or it could just be something totally separate, unrelated that may even have a simple fix, who knows? So that's why we were there, to try to find some answers.

She had an ultrasound of her kidneys & bladder, and then an x-ray of her entire abdominal area. She would have had a pee test too, if radiology would have had a potty hat, but they didn't.. and she's not one to pee in a cup. No complaining here. I'd be ticked if she decided cups were for peeing instead of drinking.

The first thing we're going to try is to get her on a rigid schedule. Roo is kinda sorta similar to a cocker spaniel.. meaning that most of her accidents happen when there is an emotional trigger of some sort.. But even though we take her often, and the school takes her often, we're going to try this method. We were told she needs to be taken to the bathroom at least six times a day, her feet need to be on a flat surface & it would be helpful if she was relaxed. We were also given several really cute reward charts that will hopefully work as an incentive to help her hold it until it's time.

The idea is that we are sort of reteaching her brain when it's okay to void, and that she will go often enough that she won't be able to when an emotional situation arises. 

Now here's the part that disturbed me--well, one of two things. As I'm talking to this very nice nurse practitioner, I notice that she seems to get emotional from time to time--which doesn't happen often with doctors. And then she gets to the part that was probably setting her off from the start.. She told me that Roo may never fully get out of pullups, and that it broke her heart to have to tell parents that, but she didn't want to set me up with false hope only to not have it happen. *whew* Honestly, I was relieved! I was worried that she was about to tell me that Roo had kidney disease or some other abnormality that was going to drastically effect her. She was just a nice lady, and even now, what a relief. I didn't hug her, because that would have been sort of awkward, but I felt like she needed one. What bothers me though, is why wasn't I as disturbed as she was? I guess a parent of a typical child might be devastated by that sort of news, but we already knew it was a possibility so it wasn't so bad? Or am I becoming too hardhearted? 

The second thing that disturbed me was the additional testing that we'll be considering if several months of a more frequent bathroom schedule doesn't work. One of the tests that was described, the nicer one, Roo doesn't even qualify for. She's just not mature enough to do a biofeedback test that uses some sort of sensor stickers placed on the buttocks to manipulate a game. :-)  The other one makes me want to curl up in a ball. She would have to be fully awake (sedation sedates the bladder too, apparently), and a catheter with a tiny camera and some pressure sensors would be put the urethra and another similar one up the rectum to test the pressure &  function of her bladder. There would be child life specialists in the room to try to make her comfortable, but already it seems like a lost cause. I think she'd have the meltdown of all meltdowns, and I don't blame her one bit. Just thinking about it makes me cringe. SO, if you have any positive thoughts or prayers to spare, send them our way! This reward chart really needs to work!

Tis' Just A Virus, They Said

This has been a long week... or two? I can't remember.  School started during the first week of August around here, and it seems that Roo and I just keep passing germs back and forth to each other ever since. The first round of colds struck the weekend after school started, & she literally missed 4 days of school for that. 

Four days. 

School. Has. Started. There are things I need to do. Things that I've been wanting to do all summer, and now I have to wait even longer?! And then we hit a calm phase.. We coasted along for about a week and she went to school and I tried to get up in time to get her to the bus while I to get better myself. 

Less than a month into the school year and we have Labor Day off. This year is so much different that last year. About this time last year, I was thrilled to have Labor Day with my daughter, because I was having a hard time adjusting, and I was missing her a lot during the day... This year, I'm just trying to keep us both healthy enough to get out the door & one of those healthier-ish days happened to be Labor Day. I'm going to leave out the lingering red, gooey eye left over from the cold.. and obvious bacterial infection around her g-tube. Sure, she looked like a wreck, but she was happy..? (This is where a sarcasm font would come in handy.) 

I was doing okay at this point. There was a little fluid on one of my eardrums, but anyone who constantly deals with seasonal allergies knows that this sort of thing comes and goes (right?) & Roo had been on antibiotics starting the Sunday before Labor Day because we just so happened to have a leftover antibiotic  refill at the pharmacy. Normally we wouldn't do this. Gone are the days of it being okay to give your child leftover antibiotics, but it was a holiday weekend and we felt this couldn't wait until Tuesday. 

Labor Day was fun. We hung out at my Mom & Dad's and had a cookout. I was feeling better. Roo looked awful, but smiled through it all, and my hubby enjoyed himself too. We decided, "Yeah, you should probably keep her home & take her to the doctor tomorrow.." And that was that.

It's Tuesday, and the whole right side of my throat is killing me. My ear is killing me. I call to make an appointment for myself and my doctor is on vacation. *fill in the -beep-* Roo still has and appointment though, so I pull myself together and get us there--on time even. The tech/nurse that checked us in seemed more upset about the antibiotic refill than the doctor who saw us (such a relief! I wasn't up to defending myself) and he gave us something new for her eye and increased the antibiotic dosage. :-)

While waiting for the meds to be filled, we went across the street to this sweet little flea market. I find a lot of good deals in there that I resell on eBay. It takes more effort, but competitive shoppers spend more than yardsalers do, so I usually make a profit. Anyway, while I was walking through the market, that's when the first rounds of dizziness hit. At first I thought I accidentally took my morning meds twice, but then it kept getting worse, even after the 4 hour mark when things should have calmed down. We made it home, made it though lunch (which I couldn't eat), and I was done. I didn't even have the strength to take my daughter to the bathroom. I laid on the couch with a 102-103 fever, freezing, falling in and out of sleep. Thankfully, she didn't hurt herself or break anything. Terry came home and we dropped Roo off at my Mother's & headed to the after hours clinic. Apparently, my lingering effect of the cold was a bulging, infected eardrum. I ran fevers off and on and slept for most of 3 days. All that sleep really messed up my internal clock. I still have trouble keeping days straight. A week later I was able to see my regular doctor and he put me on a second round of antibiotics and a nasal steroid spray. :-/ Yep, I'm on a nose spray. Yuck. 

Woe is me, I guess. I really wanted to tell you about my new BB gun (that I bought specifically with the neighbor's dogs in mind) and about Roo punching one of her teeth out at the eye doctor, but this post is already long enough. So, as our pharmacy says, ..no matter what.. really, no matter what.. until next time, Be Well. :-D

From AKA Super Mommy to.. Sugar Snap Peas?

Dear Readers,

If you are new to this page & blog, Welcome! :-) If you are new & know me personally, I realize that some of you may be a little confused. To set the record straight, I blogged and posted semi-anonymously on a paged called Aka Super Mommy for over a year... As to why I deleted that first Facebook page & blog?  Basically, I've grown. You can still read the rest of the post if you want to, but that's the gist of it. 

AKA Super Mommy...

When I first started blogging, I cared way too much about what people thought. I was worried about what people would say about how or what I wrote. What if I said something that hurt someone's feelings or made them mad? What if someone I cared about said something embarrassing, or what if I embarrassed myself on the blog? I've been known not to have that "filter" that some people were so lucky to be born with, and it's hard enough to take back something you've said, let alone written. But I wanted to write badly enough that I  gave my daughter, Roo, an alias and remain somewhat anonymous. --And for the record, "Roo" is one of her actual nicknames. People call her that all the time.-- I chose the name "Belle" because it means "beautiful girl" in French. It was just one of those names that I've always gravitated towards, so it felt natural. 

I vented. A lot. 

It's hard being a special needs parent. It was actually very therapeutic to put what was bothering me out there. I have a tendency to suppress things. I can usually remain very calm during a stressful moment, but will fall apart later. It's okay to have a good cry from time to time. But anger? It's just there. It comes and goes, and sometimes it's hard to deal with.  I choose to be happy, but the anger can still be there. The jealousy is there. The hurt is there. Crying doesn't really get rid of those feelings & they can eat away at you. Blogging and getting to know others in the special needs community is a great way to deal with these emotions, because they've been there and they understand.

Then...

We realized Roo was having seizures and had to go see a neurologist. The neurologist really threw us for a loop. She told us that our daughter didn't have autism, that she had a syndrome, and that we should have seen a genetics doctor every year. Then, when we did go to the genetics doctor, in a way, he agreed with the neurologist. But he also said that she could still have autism even if she does have an underlying syndrome of some sort, it would just be atypical. (more on all of that later)

Apart from a whirlwind of "Whhhaattt?? We just got used to this?! We've told our family and friends and I have this web page and blog and ... Whhhaaattt?!?," I had become tired of the anonymity. The Aka Super Mommy page was about a little girl named Belle, I certainly didn't feel like a super mommy anymore, and the rage/hurt that my former blog posts might have brought on made starting a new page seem like the best way to go.  

Sugar Snap Peas...

It is a different name. I was snacking on them one day and I realized how similar they are to my daughter. "This little pea is a cleft palate, this pea is autism, this one is biliary atresia, this one is laughter, this one is happiness.. This is my Roo." (On the really long peas I could add things like persistent ~which is really just a nice name for stubborn~ social butterfly & fast runner.)

There were so many times over this past summer that I wanted & felt the need to blog. That's why I'm back. I've missed this. Even if the only person who likes my page is my husband, I have missed the writing & the sharing. I'm done with the whole anonymous thing. In some cases I will have to remain slightly vague.. I wouldn't want to be sued for slander or anything.. but, for the most part, this is a much more open version of what Aka Super Mommy was. I just don't care what other people think anymore.. or at least not like I used to. So, if at one time you followed my blog or liked my page, please come back! We're still the same people.. with a different name.. being a little more real. :-)