In progress.

Ok, so I've currently got a call in to the Pulmonologist. Waiting for a second call back.

I noticed last night when Lily was laying down to have her diaper changed that the area around her mouth was blue.  She had been fine sitting up. I've noticed blue appearing more and more lately.

Some of the people I know have tried to tell me that blue is going to happen when people have the problem that Lily has. I'm not convinced. Turning blue is never normal, and Lily is turning blue more and more recently. Now, there's some question in my mind as to if I'm just *noticing* it more, but I don't necessarily think that's the case.

Anyways, so the pulmonologist's nurse just called me back, and asked if Lily has a SAT monitor.  Said that would be handy to have. So, I can see us getting one soon. Thank goodness for Medicaid. Anyways, the nurse said that he would probably want to see her, and we would see what we needed to do.

Sort of having flashbacks of the pulmonologist talking about having to go in and move the blood vessels off of Lily's bronchus. Blegh.

However, I think I will take a 'simple' problem like her bronchus being collapsed if it means her PH is not getting better. Its sort of the best of the worst scenario thing.

ARGH! Frick-a-frack-a-som-a-beech!

Anyways, the waiting game resumes again. I want the doctor to call me back like NOW. You know?

I'll edit this particular blog post as I find out more.

Christmas, Bible-Thumpers, and Non-Believers

I was thinking on this while driving to work this morning, and needed to get it out of my head...

Now, I call myself a Christian. I do this because I believe in God. I believe Jesus was the son of God. I believe He died to save us from our sins.

What I am NOT is a bible-thumper. I'm familiar with the Bible. I've read it cover to cover. However, its been a while since I've even opened one.  Its been several years since I've even been to church.

So, now that I've established that... let me just say...

Some people need to SHUT UP. I was reading various posts on Christmas, Jesus, etc...and non-believers were taking great joy in pointing out that December 25 was a pagan holiday long before Christ was 'supposedly' born. That we didn't know what we were talking about, etc. Of course, others were coming back at them and (I'll admit it, basically getting their butts handed to them) saying that yes, it was. That December 25 was the day he was born, and yadda yadda yadda.

My response to this is: I don't care what date he was born on. I'm celebrating his BIRTH. I'm not celebrating the day he was born. He could have been born on January 3rd for all I know, but, guess what? I'm going to celebrate his birth on December 25th. Why? Partly because that's how I was raised, but mostly because I realize that its the thought that counts.

Jesus could have been born on December 25th. Maybe God looked down, wanted to ease people's way into believing in him, and decided that that day would be the day Jesus was born. If you believe in the Bible, you believe in the Virgin birth. God knocked up a chick who had never had sex. You think he couldn't point a finger and go "Be born today" ??

On a side note, I can't believe I just put "God knocked up a chick". LOL! Well, you guys knew what I meant.

They talked about the pine tree, and how it had been a pagan symbol too. Something that people had gathered around in worship of life, or something like that. Well, gee, and the problem with us continuing to have a Christmas tree is.......?? I have a Christmas tree. I don't worshp it/ around it. Its a very pretty fake tree that I hang shiny baubles on so Lily can look and go "wow!" and it gives me a reason to torment the cat with the a water gun. To me, while the Christmas tree is a part of the holiday season, it is not something that I link with the birth of God's son. Its what we put gifts under, and hang shinies on. I celebrate Jesus' birth on Dec. 25th. I'm putting up the tree, however, for my personal pleasure. Not as on offering to Him.

For Him: I sing Carols like Silent Night, and I feel the joy and peace reverberate through me. For Him, I'll hold my daughter on my lap, and finally open the bible again. I'll read to her the story of Christ's birth. For Him, I'll give her snuggles, and thank Him for blessing me with her.

For me (and the family): I'll put up the shiny christmas tree. I'll buy presents to make people smile. I'll cook food so that we have a nice family dinner together.

There's a big difference between the stuff I'll do for Him and for me. I might do them on the same day, but there is still a big difference there.

And,you know what? I'll admit that maybe I'm doing it the wrong way. However, its the thought that counts.

I also, for the record, believe that we are in the End Times. Doesn't mean I'm going to shove it down your throat, but there it is.

So: Have yourselves a merry Christmas, everyone. To the people who take great joy in trying to rip other people's beliefs to shreds: Have yourself a merry Christmas, and grow the heck up. Asshats.

We all have our own beliefs. Deal with it. If you want to give yourself a happy right now, I'll give you some of my daughter's viagra. Same result, less annoyances to deal with.

Stand up

Its a bad day today. I don't know even how to explain it. Its just a bad, bad day emotionally. I think I am still feeling the stress of Lily being sick. I think I will always feel that stress, just some days I'm better at dealing with it than others.

My boyfriend texted me yesterday morning, and asked what Lily's Tracleer dosage was. I told him. He texted back that he thought that was what he had given her last night, but he's so cloudy from being sick. We've been giving the medication to her for a month. It irritated me, and worried me. It feels like the point is driving home more and more that I need to find a way to stay home and take care of Lily.

I don't want to. Its selfish of me, but I don't feel like I'm cut out to be a stay at home mom. I need that time away from her. I love her to death, but I need a break from her sometimes. I don't know how I'm supposed to do this. how I'm supposed to keep handling this.

Sometimes I wonder why I even try. Its not like anything I can dno can make Lily better. I know why I try, though. I try because I love her, and that will never change. I will always do my best to take care of her. Its just that my best obviously isn't good enough.

I'm not good enough.

I feel like I'm failing at all parts of my life right now. I couldn't produce a healthy baby, I can't produce enough energy to care about my job. I can't be the type of friend that I should be to my friends - I just don't have the energy. Its hard for me to even clean the house.

I've always battled depression, and this is definitely a down-swing for me. I fight it off as much as I can, but it seems like things are just getting too much to handle. Don't worry. I'm not suicidal. I would never leave Lily like that. I justdon't know what to do anymore.

I can feel myself disconnecting from people. Conversations are forced because I know I need to talk to people.

One of my friends made a post about how the squeaky wheel gets the oil, and another friend posted but sometimes people get tired of hearing about  the squeaky wheel. I wondered if they were talking about me. I know I talk alot about Lily's problems, and how bad things are right now. Maybe I should stop that. They might not have been referring to me, but that's immediately what popped into my head.

Maybe I have been leaning on people too much lately. It seems like I've always done best when I had no one to depend upon but myself. Maybe I need to start that again. I don't know.

At one point I held hope that life would get better. That I would get through all the crap that life has thrown my way, and come out on top somehow. That's obviously never going to happen. Things are never going to get better.

I can pretend they are. I can try to fool myself. I can laugh and smile and make raunchy jokes, and feel better for a few minutes. That's all.

I wish I was a better person. I wish the idea of staying at home with Lily didn't fill me with dread. That's a horrible thing to admit, but there it is. I'm not perfect and I will admit to it. If I need to stay home with her, I will. I'll probably have to go on medication to help keep me level again, but I will.

Things looked up for a few days when I heard Lily got approved for her medicaid. That was a blessing. That still is a blessing. Its just not enough right now.

I don't really even have the desire to drink much anymore. A beer every now and then is nice, but I realize that its too tempting. That with everything going on, it would be really easy to turn into the type of person I don't want to be.

I remember commenting to one of my friends that it was a fact of life that bad people got whatever they wanted, and good people get kicked while  they are down. I have to wonder what good people get from life then. I guess its only seeing how many times you can stand back up after you've been knocked down.

I wish I could take Lily's sicknes upon myself. I wish I could give her a better, stable life. I can't though. So I'll just have to teach her how to deal with it, and hwo to start standing back up. That is, if she doesn't die on me. Can't forget about that.

Now that's one thing I probably won't be able to stand back up after.

A cure...

What would happen if there was a cure for ?

Its something that I've been thinking about since reading the article about AIDS having been cured. (It was not cured. There was ONE man who, under special circumstances, is HIV-free (seemingly) right now.)

What would happen if there was a cure for any terrible disease? Would this cure be mass-produced and distributed at large to people who needed it? Hah! If you think so, I admire your rosey outlook on society in general. Well, partially admire it. Mostly think you're a optimistic idiot. No large drug company is going to be that kind.

They will recognize that people suffering from will pay anything / do anything to be cured. The price will be enormously high (Need I remind you one of Lily's meds is 5000 dollars a bottle?), and demand will far outweigh supply. 

Charity programs will be set up so that pharmaceutical companies can trumpet their kindness for all the world to hear about. qualifications to get into these programs will be insanely hard to reach.

You'd see headlines about people dying from the disease because they couldn't afford the cure. About people dying because they didn't get the cure in time...the disease was too advanced.

Then, maybe 15-20 years down the road, prices will finally be driven down a bit. Deals will be reached. The medicine will be more accessible. Maybe then, will be mostly cured. However, until humans in general can let loose of their greed, and self-serving interests, that terrible disease will only be cured for select groups. The rest will be in a figurative lottery to get the few free doses that sporadically come up for grabs. 

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Okay, that was random and didn't have a ton of coherency, but that's what happens when I have a beer in me sometimes.

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Lily is with Kyle at his parents house. Momma has cheesy horror movies and a 6-pack of beer.


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I...am.

I believe every post I've done has been specifically about Lily or her problems and dealing with them- and that's great. That's primarily what this is meant for. However, in this post I'm going to ramble a bit, I think.


I asked on FB today - "Remember when we were actual people, mommas?" I love my daughter to pieces, but I feel like I've lost a good portion of my identity to her. That's not necessarily a bad thing, its just something to reflect upon.

Even when she is at someone's house, I still think about her. I think I can't get shitfaced because she might need me. I call to check on her. I'm so exhausted generally that I don't want to go out and party or something. I just want to take a long bath, read a good book, and go to sleep.

I can't remember the last indepth conversation I had that didn't involve her. I used to know Arabic. I don't remember anything more than the basic greeting now.  Its amazing the things that I'm not anymore. So I'm going to amuse myself and list what I still am.

1. I am an avid reader. (Baby or no baby, I need to at least read a couple chapters every day.)

2. I am opinionated.

3. If I were a jewel, I'd be a diamond. I'm ridiculously strong, and yet just hit me the right way/with the right thing, and I'll shatter into a thousand pieces.

4. I am a dreamer. When I'm laying in bed at night, I dream about what it would be like to be loved. What it would be like to be special. What it would be like to be something more than I am.

5. I am a potty-mouth. You have seen evidence of it. The F word is probably my favorite, but I have a triple-threat that I pull out when I'm really frustrated. Sh**! *stomps foot* F***! *stomps foot again* D***! *slams hands down on nearest surface* When I get to that point, people are generally backing away from me.

6. I am a believer in God. I have my issues with him. I hate him sometimes. I love him others. However, no matter how I feel about it, I believe that He exists.

7. I am a dog-lover, and a cat-hater. Well, I hate all the friendly cats. I like the aloof ones who only love you for your food.

8. I am someone who cares too much about things, but shows that I care too little. Defense Mechanism.

9. I am intelligent. Half my brain-power is on Lily right now, but I've intimidated more than a few people intellectually.

10. I am a sex fiend. I'm often too tired to do anything about it, but I love me some raunchy sex!

However, you know, none of those is as important as this one...

11. I am a mother.

My daughter is my present, and my future. The past is behind me. No point in dwelling on it. I've got enough to do just dealing with the present, and running from the future.

Oh, yeah..

12. I am sleepy.

Good news at last!

Well, as you all probably know, I've been struggling trying to get Lily medical coverage. It has been a huge worry! Medical bills have been piling up around my ears!

Yesterday, I got a call from Children's Homecare. The nurse told me she wanted to schedule Lily's synagis injection. I told her no. It wasn't a necessity, and Lily didn't have insurance yet. The shot is like $1000.00. She told me that Lily *did* have insurance. I thought it had to have been a fluke in their records from where Lily had insurance previously. She said she would verify and call me back.

Like 5 minutes later she called me back. She said that Lily had been approved for the shot through Medicaid. That she had Medicaid. It was on a monthly basis, but she had it. Well, I went home and was looking through my mail. I had a letter of approval from BCMH (the Beaurea for Children with Medical Handicaps). It stated that Lily was approved for BCMH, but her primary insurance provider was Medicaid.

Needless to say, I was extremely confused. Hopeful, but trying not to let my hopes get too far up.

Today I called Homecare back, and they gave me Lily's medicaid number. I called the Medicaid Consumer Hotline, and basically just said "I just need to know three things. 1. Does she actually have medicaid? 2. When did she get approved for this? 3. When do I have to reapply. Is it monthly?"

The answers were "Yes. November 1st. Its ongoing."

Thank you Lord! thank you thank you thank you thank you thank you!!

I was still confused because I never applied for Medicaid. I applied for Caresource and I hadn't even had that appointment yet. However, what I found out is this...

To qualify for BCMH, you have to qualify for Healthy Start/Medicaid. When Dr. Daniels' nurse put in the application for BCMH, Lily automatically 'applied' for Medicaid because any BCMH applications are kicked through Medicaid first because BCMH is a last resort payer. Lily qualified.

Again, Thank God!

So, I immediately got on the phone to call her oxygen company..only to find out they already knew. Homecare already knew. Apparently I was the only one that didn't know yet! Haha! So, this afternoon Wrencare will be coming out to give me some much needed supplies (like 2 50 ft oxygen cords and stuff).

Now I'm on the search for an O2 backpack. I want Lily to have a lot of mobility when we're out and about. The basic holder that they give us is just a shoulder-strap thing. I need  a backpack small enough to fit Lily, but large enough to hold a portable oxygen tank. I might end up improvising with something. I just don't know what. Anyways, its not a huge concern. If nothing else, I'll get one of the adult 02 backpacks, carry it myself, and just give Lily a long cord and hope she doesn't trip too many people! LOL.

Oh, my goodness. I needed this. I needed this break. I needed SOMETHING to go right.

Everyone tells me I'm strong, but this last week has put me at my breaking point. Just at the "I can't do this. I can't take this. I can't.. I can't...I CAN'T!" There are still lots of things going wrong, but this one little thing is such a blessing. Well, its not little considering how expensive her medications are, but you know what I mean.

So, pardon me while I go do a booty-shake.

Saying all the wrong things / Thank you for the Memory

There are certain things I'm told when someone finds out that my daughter has a chronic illness that drive me up the freakin' walls. I know people are trying to be reassuring/encouraging, but there are some things you just don't say. At least to me. Everyone is different, so I'll speak for myself only here.

Please understand that I'm currently going through the Anger part of the grief cycle. I can even identify now that my 'tone' is much harsher than it normally is. There might be strong language. You have been warned.

"You gotta stay positive."
             No, really? You don't think I know that? You don't think I fight to stay positive every day? You try facing this every day, and staying positive. You stupid fuckwit. Why in the world would you say this to someone? What is is going through your head? Think before you speak, dingdong. If you can't say something reasonable, just keep your mouth shut. Ninety-nine percent of the time, if I'm informing you that my daughter has a chronic, incurable, illness, I'm not telling you because I expect you to say something profound, or to say anything at all. I'm telling you because I felt you needed to know for some reason.

"Well, they are coming out with new treatments for stuff all the time."
          No shit, Sherlock! Thank you, Captain Obvious. Guess what? I knew that too. Chances are that I know more about the treatments in the pipeline than you do, because its my daughter. Idiot. Sometimes if something is blatantly obvious, you do NOT have to voice it. Trust me.

"Maybe she'll grow out of it."
          If its incurable, chances are she's not going to fucking "Grow out of it". Enough said.

What you CAN say:

"Dude, that freaking sucks!"
         This is one case where stating the obvious is okay. Its okay because you're not thinking too hard about it. Its okay because it does freaking suck, and sometimes just someone else acknowledging that is all that I need. When someone responds like this, my thoughts are along the lines of 'Thank you for understanding.'

"I'll pray for her."
        This one too is perfectly acceptable. That one phrase offers comfort, understanding, and is nice and simple. Again, its one where you're not thinking too hard about it. Do you see a pattern forming here? Your initial responses sometimes are the best.

"Sorry to hear that."
         Its simple, honest, and conveys understanding of the situation.


I honestly don't blame people for saying stupid things most of the time. I generally just kind of shrug an acceptance of their response when they say something I think is stupid. I just had to get my thoughts out here.
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A memory:

I'd went to the babysitter's house to pick her up, and was greeted in her usual way. Her voice declaring "MOMMY" as soon as I'd opened the door, and her hands extended straight up over her head with a following demand of "UP". It didn't matter to her that I was still a few feet from her. When I denied her, as I initially do because I'm trying to look through her backpack to see if there's anything I need to share with the babysitter, crocodile tears flowed down her chubby cheeks. As usual, I laughed at her because we go through this almost every day. She knows she's going to get picked up and given loves, but she wants it done on her terms and no one elses.

I chatted with the babysitter, picking Lily up after a minute, and sitting her on my lap. As usual she squirmed and wiggled, wanting to get down. In Lily's world, "UP" at the babysitter really means "up long enough for loves, and then you'll let me down so I can rip and race for a few more minutes".  She did eventually get let down, and after a little bit more conversation with the babysitter, I tried to get her coat on her.

Everything was pretty much business as usual until Bob walked in the house. Bob is the babysitter's husband, and Lily has him wrapped around her little fingers. As his lanky figure disappeared into the kitchen, she looked at me with those wide gray eyes, and solemnly asked "Cookie?"

"No."

"Cookie!" More insistent this time. Bob regularly gave her cookies, and she was bound and determined to have her cookie. It didn't matter that we were ready to head out the door, and she was inside a warm house wearing a warm coat.

"No, Lily. We're getting ready to go, and you aren't allowed cookies in your carseat."

"Cookie!" As I started to say no again, the babysitter spoke up.

"She thinks because Bob's in the kitchen, she can get whatever she wants." Her voice was rich with mirth. She knew my little red-headed heathen very, very well. What happened next almost made me bust a gut laughing.

The babysitter had just finished speaking when Lily stared at me with this Duh, Mom expression on her face, and said "Yeah!" What made it even funnier is that Lily doesn't just say "Yes" or "No". She adds tonal emphasis to the words. Basically, she packs that one short word with a ton of attitude. "Yeee-aAAah" She even threw in a decisive nod for emphasis.

Given that she's only 21 months old, I don't generally expect Lily to 'know' what someone is talking about unless it involves the words "bottle" or "diaper change". Sometimes, though, when she responds as she did in that situation, I really think that she does understand, and I don't give her enough credit.

All throughout the day as that memory has randomly popped into my head, I have at least snickered.

Thank you, Lily, for the memory.